DHE Migraine Treatment: Why some people still use it
To get some background on DHE migraine treatment, we need to go back to the days before DHE, or dihydroergotamine, was used. It was actually in 1925 that the first migraine patient got an injection of ergotamine tartrate. It worked – stopping the migraine that just wasn’t going away.
In 1943 came the next step for "ergot treatment" – DHE, the long name being dihydroergotamine. It was first used at the Mayo Clinic.
Yes, 1943.
Since then, our understanding of migraine has been completely transformed. And yet, some people are still using DHE to stop migraine attacks. Why?
Earlier this week I asked on Twitter who had used DHE lately, and got a helpful response from @maxjerz, who had used IV treatment to stop a migraine that, again, was not going away – 24/7 pain.
 Photo courtesy of BlueGoa |
That answer is actually typical – DHE is often given for migraine attacks that aren’t being stopped using more common medication. DHE IV therapy isn’t the only way to go – it can also be injected intramuscularly or subcutaneously. I’ve used it myself, and let me tell you sticking a needle in your body when you’re more sensitive to pain than ever isn’t fun (and for me wasn’t any help) (read Robert’s experience with DHE).
Just last month a report came out of the Cincinnati Children’s Hospital Medical Center in Ohio, USA about using DHE migraine treatment on children and adolescents with status migraine (again, migraine that ain’t going away – an attack lasting more than 3 days). The results were encouraging – almost 3/4 of the patients became pain-free (excellent considering their normal medication wasn’t working). Read the study on DHE migraine treatment for children and adolescents.
So DHE (sold as DHE-45 and Migranal) is still given to patients who aren’t being helped by other medications, and because it’s an injection it can be used for patients who have nausea. It also may help with allodynia (sensitive/painful skin – a common symptom of migraine).
So – why don’t MORE people use it?
So maybe our question should be – why isn’t DHE migraine treatment used more often? Here’s why dihydroergotamine is no longer at the top of most doctor’s lists:
- Side effects: Serious side effects are rare, but they’re serious enough to make one cautious. Possible problems include cardiac events, increase in blood pressure, and spasms of blood vessels.
- Drug interactions: There are a large number of drug interactions that you need to worry about with DHE, such as certain antibiotics, triptan drugs, and protease inhibitors. It’s recommended you carefully go through any drugs you’re taking or may take and let your doctor know before using DHE migraine treatment.
- Other cautions: Like many drugs for migraine, DHE can’t be used by pregnant or nursing mothers. There’s also concern about patients with hypertension, certain types of migraine, and patients with peripheral arterial disease (to name a few).
- Rebound headache: Taking DHE may lead to rebound headache, where the migraine attacks start coming stronger and faster because of the medication itself.
Obviously other drugs have many side effects, and other cautions, but the concerns with DHE may be higher compared to the benefit, depending on the patient. For most people, other treatments will work better. But a doctor who knows your medical history may suggest DHE for your case individually.
So, although your doctor will have good reasons for recommending other medications first, DHE may still be the perfect thing to end the migraine symptoms in certain patients.
Read more technical details about dihydroergotamine msylate here.
23 February 2009 @ 1:38 pm
Years ago my neurologist suggested that I try DHE as a preventative. I don’t remember how much I was taking, but I developed severe leg pain (probably a vascular thing). This seemed to be dose related, so I continued to use it as an abortive. And, you guessed it, MOH or rebound headaches. Not a drug I am interested in taking again. 🙂
2 March 2011 @ 5:46 pm
Hi
I just did 4 doses in hospital of DHE and my led leg feels really weak. Pain that wakes me on the top part of my ankle. Did your doc say anything about yours. Is it better? I feel like I’m going crazy,my doc said I’m fine. Any info would help. Thanks so much!!!
23 February 2009 @ 3:54 pm
Oh dear, double trouble! It didn’t really do much of anything for me. I just remember how sensitive to that needle I was during an attack! 🙁
23 February 2009 @ 9:34 pm
I just started taking DHE in January. So far, so good. It is helping me, and it may be too soon to know if I have rebound problems. I have tried almost everything else (no exaggeration).
24 February 2009 @ 7:21 pm
I was admitted to the hospital last summer to try DHE. For the first time in three years I woke up without a headache, after one day’s treatment. As Andy stated, I had tried everything.
My neurologist stopped all of my other treatments, and started me on DHE via IV. The only problem is that DHE can be horrible on your veins. The nurses would put in an IV, administer the DHE, and then stop the IV — leave in the tube without fluid flowing through. This resulted in my blood vessels collapsing the next time they went to administer DHE. After five days in hospital my arms were black and blue and really sore — though I was headache free.
Once released from the hospital my doctor prescribed it for me to inject intramuscularly. I am allowed to inject 1 mL/mg up to three times a day. I generally don’t use it more than twice a day, but do use it once on most days.
I find it very difficult to inject it in my thigh when I am in a full blown migraine. Added to that is the fact that my preventative medication, Divalproex, causes tremors, I can be a mess. My husband is kind enough to inject it in my gluteous maximux if I can’t do it myself.
I haven’t had any pain in my legs and I don’t know if I’m getting rebound headaches … it’s possible, but I’m not having to increase the dosage constantly as I had to with narcotics. If I’m experiencing rebound headaches I can live with that … it’s far better than codeine or morphine, both of which caused horrible rebound headaches and in the end didn’t work. Now I can use codeine occassionally to fix the migraines that don’t work with DHE.
1 March 2009 @ 2:52 pm
i was hospitalized in septembert of 2008 with a bad migraine.My doctor put me on DHE and i was in hosital for almost 2 weeks. It didnt do much for my headache. In Novembert of 2008 i was hospitalized again because migraine wouldn’t go away. They ended up puting in a pickline and putting me on DHE again. Within a few days i ended up in ICU with convultions, pneumonia (they have no idea what type) and congestive heart failure. Needless to say i can no longer take DHE and would not recommend it to anyone. Even my regular md said that I crashed fast and hard and suprised everyone. Now I have to live day to day wondering when my next seizure is gonna hit. But the real kicker is I still have the migraine going on 6 months.
19 August 2010 @ 7:56 pm
My neurologist has recommended the DHE treatment for me. I’m waiting to see if the insurance will approve it first. After reading your comments not sure I want to try it. I have a history of a seizure disorder. I had epilepsy brain surgery in 2002, and lord knows I don’t want the seizures to start back again!
6 April 2011 @ 9:59 pm
I had the Temporal labomoty surgery in 2000, had devloped migraines instead of seizures, now instead of seizures i have migraines, daily..I do the DHE without side effects or any complications for that matter, 1st time it helped for 3 weeks, im now doing it again hopeing for full results this time..i guess theres pros and cons of it tho
17 May 2011 @ 6:01 pm
I have a seizure disorder as well, had Temporal Labomoty surgery in 2000, due to the surgery i devloped server DAILY migraines…As all medications have failed My Neurolgist resort to try the DHE
I have had 1 DHE treatment (thru pic line) 5 day hospital stay, letting me be migraine free for 3 weeks, (its suspto work for up to 3mo) but it doesent happen all at once..Im going again for another DHE treatment in June, where i should be more migraine free as the doses build up..I had very mild leg pain(side effect) but if you get up and walk around during treatment it helps the circulation in the legs to less pain..Dont be discouraged to tryi it again..!!
30 May 2011 @ 7:48 pm
Hi Deanna, do the neurologist know why you started having daily migraines since your brain surgery?? I also have daily migraines, the neurologist haven’t come out and just said it, but I think there is a nerve being compressed, maybe the way my skull healed. I really don’t know, but I do know the migraines are getting worse. I can’t work because of the migraines, not knowing from day to day how bad your going to be hurting. Do they think your brain surgery hasn’t anything to do with your daily migraines?
Sorry so many questions! 🙂
Blessings,
Cindy
10 April 2009 @ 1:22 pm
Thanks for sharing your experiences. Some of the biggest concerns with DHE concern your cardiovascular system – from a rise in blood pressure to “collapsing” blood vessels (vasospasms if you want to make it sound impressive).
But if your doctor is aware of your medical history, and you’re under her care, it seems DHE can still help some people get out of some severe cycles of pain.
16 May 2009 @ 9:34 pm
i have had to take relpax and D.H.E. and did iv treatment for 8 days in hospital. had to take injections for myself if relpax did not work. i have not once had any relief from the injections I have had to take if relpax failed. relpax actually works better. do not take d.h.e. it’s has too many bad side effects.
19 June 2009 @ 12:37 pm
Hello, I turned to a neurologist in Tulsa in 2000 due to migraine headaches. After CT scans MRI’s and an array of other tests that proved everything was fine, still the many medications that use to releive the pain no longer worked. He recommended the DHE treatment in the Hospital for 7 days. IV every 8 hours. My viens did collapse and I do not even remember the first 3 days in the hospital. They were giving me an array of other medicaions with this for some reason. My husband requested a list of these medications when I was incoherent and questioned what they were and why and they discontinued many! *I had thought I was only having the DHE however they were also giving me other medications that I did not previously take. After my husband got the unheard of medications stopped I was awake. I had a headache until the 6th day and it was only very slight. I could not take any more of the IV’s and I insisted on leaving. I do not have a migraine every day. I am able to use maxalt now or imitrex. I no longer need imitrex shots and am not going to the emergency room for a shot of tordol and phenergan. I am able to function with a pill now as where before I was ordering Imitrex through mail order by the case! At times I am even able to use Excedrin Migraine! The hospitalization was a rough experience. During the hospitalization they did have me seek biofeedback, a nutrion doctor and taught relaxation techniques. I feel the DHE treatments were successful, however, I do not wish to ever go through that again. The doctor explained it would be like restarting a thermostat, so regular medications would work since NOTHING was working. It did exactly as they said it would. Best of Luck to ANYONE undergoing this. Make sure you have someone you trust to oversee you in the hospital.
5 August 2009 @ 4:28 pm
I have had migraines since high school and only to increase i severity to now as I am 43. I have exhausted doing countless meds and am currently off narcotics (except for ER visits) and use DHE as an injectable. My headaches are so frequent and severe and increasingly worse with symptoms. My doctor has mentioned doing the week long DHE in the hospital scenario, and I go in to see him tomorrow. I think I am finally at the point where I am willing to do it. Scared of the vein problem possibility, in the past for visits over 3 days I have had to have a pic line/mid line placed…. wonder if that would happen again or even make those lines worse? And unfortunately he is not on my insurance, so getting coverage on this and even in a timely manner is concerning. Thank you for letting me post here.
3 September 2009 @ 4:35 pm
Well, I’m sad to report that my experience with DHE took a turn for the worse. About four months ago I started having difficulty breathing. It began with a bad cough and then progressed to chest pain and fluid in my lungs. By the end of August I could barely walk two feet without becoming short of breath.
I went to the emergency room three times and was admitted to the hospital two times. At first the doctors said it was a virus, then a pulmonary embolism, and then asthma. The cardiologist finally figured it out last week when I went in for an echocardiogram. I have a leaky mitral valve and have been in congestive heart failure for the past several months.
The doctors stopped the DHE and started me on cardiac medications. My symptoms cleared up almost immediately. The doctors are hopeful that my heart will heal itself now that I’ve stopped DHE, however, if it doesn’t I will need surgery.
I’m struggling because my migraines are back with a vengence without DHE. I’m trying triptans again and oxygen — it worked well in the hospital.
Part of the difficulty in diagnosing my problem is that I’m 38 years old — generally too young for mitral valve issues — have no history of heart problems, and my echocardiogram from six months ago was completely fine — again generally not seen to happen that fast.
I’ve also been diagnosed with sleep apnea and using a CPAP machine at night has been helping with morning migraines.
Best luck to everyone.
15 September 2009 @ 7:07 pm
I also used DHE except it was in nasal spray for called Mirgranal. Both times that I use it at onset of migraine and both times ended up at the ER vomiting with the worst headache that I ever had. Beleive me I never used that again. I have been diagnosised with intractable migraines along with chronic daily headaches. I must have tried everything under the sun including naturapathic medicine and nothing works. I had to retire from my job, because I could not function. I would occasionally get a migraine, but then after I had a hysterectomy they got 100 times worse. I would NOT advise anyone to use DHE or Migranal I think that they are to dangerous.
4 October 2009 @ 5:34 pm
well all of your information has been informative as i hope mine will also be…..i have had migraines for about 3 years and just finished my first DHE IV treatments 3 days ago. i dont think i will ever do it again. my migraine is gone but 2 days later i woke up with the WORSE migraine i have ever had so bad i landed in the ER. i was hoping in was just a rebound headache from the DHE. its now 3 days later and im still so dizzy i can barely walk from my living room to my kitchen without passing out! im so frustrated i dont know what to do. i have just about exhausted most of my sick time and my employer is not very understanding of someone with “just a headache”! i wish the would find something to take that would held break the cycle of pain for us all!!
7 October 2009 @ 2:54 pm
I have been taking DHE for about 3 years now. Only use it every few months for the worst headaches. I self inject (it burns like hell) but when I have the worst migraines, I don’t even care anymore. It definitely helps abort the migraines that have been going on for days. I usually end up sleeping afterwards. The only side effect that I personally have from it is that my whole body is sore (like I ran a marathon) for about a day afterward. Honestly, if I can get rid of the migraine, it doesn’t matter to me. Just make sure that if you are taking triptans to abort a migraine (ex relpax) don’t take it within 24 hours of the DHE. This can cause dangerous cardiac arrythmias. Everyone has the possibility of reacting differently to every medication. I got my first dose of DHE in the neurologists office and felt a million times better afterward. My only problem now is getting it covered by insurance!
16 October 2009 @ 4:12 pm
Hello,
I suspect my cardiac problems arose because I was using the DHE daily for my migraines. A positive result of my story is that during the year I was using DHE I reduced the amount of pain relievers I was taking (i.e. tylenol with codeine). This break has made it possible for me to manage the migraines with occassional triptan use, aspirin, and rarely tylenol with codeine.
My heart is healing itself now that I have stopped taking the DHE. I am no longer short of breath, or have a racing heart. The murmur is still present, but I suspect that will go as my heart heals. I have been able to ween back on the hard medications I was prescribed in August because of the improvements with my heart.
22 November 2009 @ 6:43 pm
Hello , Well I have had migraines for a while now. I have my regular neuro here in NJ and a neuro in NY City as well. I have had DHE IV in the hospital say 5 times. Works like a charm for me. I have say a 3 day hospital stay have it with some IV Zofran for the nausea. Only thing is I have low heart rate so the DHE lowers it more for me I go to the 40 to 50’s as a result so I am put on a telemetry floor to monitor my heart rate but I am feeling fine on it just tired… as far as the veins yes it burns after a few treatments sometimes I end up needing a new line but its ok with me hey the pain goes froma 10 to a 1 by the 2nd day. My problem is once I am discharged after the first day home I start getting my migraine back. I am on preventatives such as verapamil,toapamax, indomethacin… I just started taking dhe by mouth when the pain comes instead of the triptans cause they werent helping me much and I ended up over using. I want to try the injectable DHE doctor is hesatating I think, also my NYC doc is looking into Botox waiting for insurace to say ok. Well oh also when I go in to the ER for treatment I receive Dialudid and Benedryl well works like a charm at the moment but next day is 100 times worse terrible and my docs tell me if they are your friends there they wont give you narcotics they are bad for you!!! See I work there thats why they say that 🙂
12 December 2009 @ 4:44 am
I have been having daily migraines for about 5 months now. I’ve had many tests with no success at finding what is causing them. I just discussed the possibility of DHE with my dr. today. I have to say though, that after reading all of these, I am not so sure that’s the way to go. Yes, I want and need relief, but at what other health risks it could lead to? I know that all medications come with their own side effects, this one just seems to have to many severe ones. Thanks for sharing your stories and helping me make my decision.
15 December 2009 @ 8:35 pm
I have been a life long migraine sufferer. I recently completed a five day hospitilization where I recieved DHE as well. They did put in a pic line, and I was given glucose between treatments, I assume to prevent collapsing veins. I was also given an anti nausea medication at the same time. I was urged to take it easy and it might take a few weeks to see results. After two weeks, my headaches completely stopped! Its been nine days so far, but I feel so clear and different.
I think the Headache Program at UCSF is a first rate program.
28 February 2010 @ 8:54 pm
Seven years ago, our 15 year old daughter was taught to self-inject DHE to stop a three-week cycle of migraines that had her in the hospital. WIthin three days she lost all circulation below mid-thigh and was pregangrenous. The vascular surgeon was horrified at the damage done by the DHE, which the neurologist defended as an “aggressive rescue remedy”. SHe spent ten days in pediatric ICU with cardiac meds being poured into her to reverse the damage, and then she needed to learn to walk again. SHe has permanent damage to her toes. We can’t sue because in our state, the doctor needs to have been intentionally negligent to be sue-able.
Please don’t take this medication. It’s just not safe.
2 March 2010 @ 12:57 pm
Mary,
I am so sorry to hear about your daughter. I’m glad they figured out what was affecting her and you were able to stop it. I was very scared at 38 being told I might need to have a valve in my heart replaced. I struggle because my migraines are back with a vengence. I’m doing my best to manage them with a varied cocktail of migraines. It’s a rough rode. I wish there was more being done to find a cure because it’s a tough disease to live with.
My thoughts are prayers are with your family.
Nickie
2 May 2010 @ 8:44 pm
I was hospitalized for 3 days of dhe after 30 days of migraines that nothing could stop, it was the best thing I ever did, I had clarity within a few hours I had never had before, it was amazing. I cannot wait to try it again!
3 May 2010 @ 3:28 pm
Angie, I’m glad to hear you got some relief and clarity. I hope you don’t run into the problems that some of us have. It seems that if you use it daily you’re at a higher risk. The information I’ve read seems to indicate once in a while is okay.
Nickie
3 May 2010 @ 7:22 pm
I give myself the dhe injections subQ when my migraines are bad enough up to twice a week no more then 3 times a day .5 milligramas. I have had it in the hospital IV and my neuros in NJ they just freak out over it because well its a serious drug and my heart rate drops and I become flush. Now that I give myself it at home from my NYC neuro I can forget about getting it in the hospital because of toxcitity. It somtimes works but not as well as getting in IV. I took i milligram once and had leg spasms and had to get a doppler of my leg but it was a side effect everything was fine. Just need to stick with low dose. If i get the migraines more frequent I wind up in the ER with pain meds which cause rebound sometimes can’t win but I am in the process of getting Botox at my docs in NYC so I have my fingers crossed that will work. I wish everyone the best and I truely believe no one understand the pain we go threw unless you suffer from these.
16 June 2010 @ 4:43 pm
I’ve suffered chronic migraines for 13 years since my brain anyerism rupture and 2 clippings. My neuologist has prescribed everything on the market, but DHE injections as an abortive, is the only relief that I’ve found. I inject in my thigh and take a cocktail of doxipin, seroquel, compazine and bufferine. After around 1 hour of pain and nausea I pass out for 5 or 6 hours. The DHE meds make me drugged and drousy for 1 to 2 days following the attack. I also take topamax and atenalol along with lexapro daily. I’m tired….I’ve spoke with a new dr. about Botox injections for migraines, but they are so…expensive and have to be repeated often. Good Luck to All
Not unexpected, but not exactly expected. | Attorney At Large
25 October 2010 @ 9:40 pm
[…] never get one again. (Wouldn’t that be awesome?) If it doesn’t go well, I could die or something. Whatever. I’m pretty sure I won’t get migraines in the afterlife I don’t […]
31 October 2010 @ 7:55 am
I have had a 5 day course of DHE at Jefferson Headache Center in Philly. Worked like a charm, I was migraine free for 8 months, which was a miracle, because before the treatment I had headaches about 60% of my life. I am now living in SF, and just as the doc at UCSF said, the DHE will leave my body and I will be needing to repeat the procedure as often as every 6 months. It has been 14 months since my last treatment, and the terrible migraines are back. However, UCSF conducts treatments only once a month, and the next intake is over a month from now. I am in a bad state and dont want to wait a month. Can anyone recommend a center, aside from Jefferson, where I may be admitted sooner. Anyone has experience with the center in Chicago or Michigan?
12 November 2010 @ 2:13 pm
I have been going to the Migraine Center in Chicago for many years. The Dr’s there are very helpful and I have been on the inpatient unit many time to help with extream migraines. Its a great place, I don’t know what I would do without it. Give them a call.
30 May 2011 @ 5:26 pm
Hi, I just read your article, I attend UCSF Migraine clinic(Headache center) in which they do the DHE every Monday for 5 days in Mt.Zion Hosp.. I know its been awhile since your post, I hope you have gotten relief. Im doing my 2nd DHE this monday, the first time it lasted just 3 weeks, im hopeing for better results this time
3 November 2010 @ 12:27 pm
Diamond headache is a good choice and does DHE protocol.
3 November 2010 @ 4:12 pm
Wow! I had zero idea that DHE had such a low percentage of use by migraines sufferers. I’ve been injecting DHE (1 vial ) intramuscularly for 12 years to date. Upon migraine attack I inject in my thigh, then take 1/2 a seroquel, 2 x-strength bufferin and sometimes a doxipin. I also use a compazine suppository to control the nausea.
I suffer chronic migraines 5 to 6 per month, sometimes more depending on the weather. I don’t care for the DHE as it drugs me along with the rest of the migraine cocktail for 24 to 36 hours and leaves me feeling lifeless. I can’t drive or think clearly and am incredibly emotional. Nothing else works for me to take away the pain. I’ve tried Imitrex and Maxalt and Migranal inhalors and nothing helps; it all acts like candy to me. No results. DHE is the only medication that has helped me. But trust me I don’t like it at all,and I wish there was something else. I am going to talk to my DR about Botox injections, since they were just approved by the FDA, but I’ve heard that they don’t have too much effect on annyerism migraines. My migraines are a result of a ruptured brain annyerism that was clipped after a bleed. Again, a second one was clipped using the same procedure, full brain surgery. Does any one else inject on a regular basis with DHE? I would love your feedback
20 November 2010 @ 10:17 pm
I like the rest of you have my own story of migraines….some of the same issues and some different…to make a long story short…the first migraine I can remember was when I was 9 years old…have had them all my life and in my mid thirties they started to increase rapidly….I am now 42 and have chronic daily migraines (whatever label they want to put on me) but my head hurts everyday of my life….the severity of the pain is random and I do pay attention to my triggers etc….this constant pain in my head has left me unable to work, fighting for disability and unable to have a normal life…I am severely clinically depressed and in therapy and see a psychiatrist…neuro’s naturopaths, MD’s, DO’s, etc; tons of different meds (list too long to even type)…..currently taking lexapro, doxepin, dilaudid, nucynta, xanax, toradol, tigan, maxalt, probably something else that I cannot remember because my memory is shot from this pain…..my daily thought is “how long can these vessels in my head continue to dilate and dilate and dilate, maybe once in a while contract and not weaken; thus causing damage and who knows what type of effects to my brain?” I have posed this question to many a doctor and they evade the subject….is it just me or does that mean they don’t want to tell us the truth? Anyway…I could go on for hours but the bottom line is the pain is constant, I hate it; I keep trying and nothing works! The worst thing of all is that our disability is not visual so people find it “so hard to believe” well I suffer from the daily brain rape of migraine headaches—the incapacitating delirium that seems impossible to avoid or control. . One of my favorite quotes is (i probably won’t even get it right cause my mind does not function like it used to…i.e. the migraines have created mush where the once was healthy brain tissue that acquired me a Master’s degree in Cytopathology) A duck in the water appears happy and calm but what you don’t see is his feet under the water struggling to keep him afloat…..therefore, I may look normal but what you don’t see is the pain and the struggling that I go through on a daily basis! Someone please help us
22 November 2010 @ 12:57 pm
Hi Tracy…I love your analogy of a duck paddling fast under water, while above the water line the duck looks calm. How true!
I understand your pain because I suffer from chronic migraines too, 13 years of days wasted to sleep or laying in bed agonizing. Have you tried intramuscular injections of DHE? It helps at the time of the attack, but they do come back. I’m ready to try botox injections but am waiting for insurance approval. Take care and know that you don’t suffer alone.
27 November 2010 @ 8:05 pm
Hi Betsy, I hope the doctors can find something that helps you. I went through three days of dhe, it worked for a short time, but now the migraines are back again! I have chronic daily migraines, they aren’t always the same intensity, but always there. I am currently taking firocet, zanaflex, and elavil for my migraines. Yes, please do keep in touch. I’d love to hear what works for everyone else and if there isn’t anything that I haven’t tired.
Blessings,
Cindy
29 November 2010 @ 9:07 am
Cindy…thanks for your comment! I’m sad to hear that DHE didn’t work for you. It’s a tought drug. It’s to be used as an abortive at the time of a migraine along with other meds. As far as your firocet , zanaflex and elavil…how long does it take to get relief and what are the side effects? Are these oral meds?
Stay Well,
Betsy
26 November 2010 @ 2:51 pm
Thanks Betsy…..I am gonna see a specialist in Jan 2011…so we will see what his plan of attack is…..writing this while in bed since yesterday….barely made it through Thanksgiving dinner and boom migraine full force, puking and in bed since! Love the holidays but not with migraines….guess migraines don’t discriminate; they don’t care what day of the year it is…I will look into the DHE injections…
27 November 2010 @ 12:02 pm
Tracy….I too spent yesterday wiped out in bed. It took me a while to decide weather to inject or not to inject. Injection won out! I slept all day and all night. It does relieve the pain of a killer migraine, but the effects the day after are intense. I’m grumpy, I have delayed physical movement, and my thinking feels like it’s draped in a fluffy blanket. I don’t like DHE, but it does work, by taking away the pain. Stay well.
Happy Thanksgiving,
Betsy
29 November 2010 @ 9:09 am
Tracy…hang in there! Let the blog know how your visit with the specialist in Jan 2011 goes? Merry Christmas.
27 November 2010 @ 5:04 pm
Betsy,
I am scared to try DHE….don’t know if the specialist will go that route when I see him in January…….I know that years ago the neurologist that I went to had a “hard time believing that I got as many migraines a month that I claim to get” well needless to say, I did not stay with him…thus far been working closely with my PCP and a neurologist on his team…nothing has broken them thus far and some stuff gave me horrible side effects….Gotta keep my fingers crossed for appointment in January..Hope all is getting better with you……Lets keep in touch…Been in bed all day due to migraine and an intestinal/stomach flu…..double whammy! What a day
28 November 2010 @ 6:14 am
my story with migraine started since childhood. iam now over 60.It may sometimes lasts for two weeks.Iam fed up to the hilt with migraine.ergotamines did not work,nothing actually worked.Iam now on feverfew for less than two weeks.It helped alittle bit,but it is yet difficult to judge.since migraine runs in my family my doctor concluded that it is inherited,Ihave to live with it,andtry to avoid triggers.!!!
28 November 2010 @ 3:04 pm
I have had the DHE treatments via IV in the hospital (usually 5 days, getting DHE every 8 hours). They also give you other supportive meds: magnesium, anti-nausea, benadryl, pain killers, etc. and this will vary by neuro. My current neuro has prescribed me with both Migrinal (DHE nasal spray) and DHE sub-Q for home use. I generally inject into stomach, not the thigh, and it does sting! It can cause nausea, so I will take phenergan about 15-20 min. before. The only side affect I have had is that it lowers my blood pressure (which is low to begin with) and my neuro told me that this is the opposite of what DHE normally does. It has been a savior on many occasions as I have had chronic migraines for three years non-stop this time ( I had a year with no migraines after an inpatient DHE treatment, but don’t have insurance right now, so can’t ask for this until after the first of the year, when I get medicare). I was approved for SSD (Social Security Disability) on my first application, and have been out of work for over 2 years. I have tried sooo many meds (triptans, ssri’s, tri-cyclic antideppressants, anti-seizures, beta blockers, etc.) with no luck. I am just coming off Diamox, to prepare for an LP to determine if I also have IIH (ideopathic intra-cranial hypertension – where your spinal fluid pressure is too high). I have had one high reading and have been on Diamox for two years, but it is becoming less effective and my neuro wants another LP pressure reading. IIH can aggravate the severity, frequency, etc. of someone that already has migraines and this may be my situation. It is vital you find a good neuro (I also have a great PCP!!) that is willing to listen. My neuro is also referring me to a local pain management clinic (my neuro is 3 hours away), and they are all willing to work together to improve my situation. Hope some of this information is helpful for others!
29 November 2010 @ 11:13 am
Wendy, your treatment seems exceptionally good. Would you mind sharing where you go?
29 November 2010 @ 11:00 pm
Wendy,
I too can understand your story and am awaiting seeing a specialist in january 2011…….I applied for disability and they denied me so now got a lawyer…..to fight for my appeal….any tips in that regard?
1 December 2010 @ 11:04 am
Wendy,
It took several appeals to finally the district or regional level before approval. Just keep appealing was the advice we were given and seemed to be the best.
9 December 2010 @ 8:14 pm
I am in the same boat, Tracy and Betsy. I am 23 years old and have had chronic migraines (almost every day & lately every day) for the past year and a half. I started having migraines when I was younger but they were only occasional. I’ve tried nine different preventative meds (from different families/categories) and a variety of meds for when I have an attack (triptans, pain killers, etc…). I am a teacher, and every day its like how you wrote about a duck looking happy and calm but struggling to stay afloat underneath. It’s very frustrating. I have only tried DHE once when I was in the ER (IV). I just started reading about the DHE injections this evening. It seems like quite a few people have had successes and quite a few haven’t. I’m debating whether or not to discuss it with my headache specialist at my next appointment.
Does anyone else with chronic migraines have a positive experience that has stopped the attacks (lower overall frequency) with DHE IV treatments (in hospital) or injections?
15 December 2010 @ 1:45 pm
Ashley, first and foremost Godbless you in your daily struggle. As far as DHE injections lowering the overall frequency …it won’t. It only stops the current migraine pain and this is used with a cocktail of other oral meds that agree with your mentabolism. I’ve not been given the DHE IV treatment in the hospital, so I have no experience with that, but I don’t belive that it’s a preventative medication. It is strong and it does work when all other meds fail. It is the only med that stops my pain. But since you are working as a teacher I don’t think that you will be able to tolerate losing time. DHE does knock you out for a couple of days.
Good Luck and keep in touch.
Betsy
5 January 2011 @ 5:22 pm
I am 21 and have migraines since i was 12 and have taken DHE many times in the cases of migraines and have found it is the only drug that works for me the only bad thing i have found about DHE is the lenghth of stay in the hospital when subq didnt work my migraines would be so bad that i would be addmitted to the hospital for a min of a week and would receive DHE through a pick line…. other than the stay and well it made me sick to my stomach it was the best thing to take my migraines away I never had rebound migraines and slowly they have began to lessen to where now i get 1 maybe 2 times a year rather than 8-9 a year
17 January 2011 @ 8:55 pm
I am 42 y/o & began suffering from migraines 15 years ago after having menegitis. I am hospitalized on average 1x every 2-3 months for 3-4 days and in between that, have 1-2 ER visits and several “at home” episodes, treated with Topimax and Oxycodone.
When I am hospitialized, my neurologist uses a “cocktail” of DHE,
Decadron, Benedryl, Diluadid and Zofran. As others state above, the DHE is given every 8 hours for 3-4 days with the other meds given every 3-4 hours. In July 2010, my neurologist finally made the decision to have a Power-Port permanant IV port placed in me. This was medically necessary due to the numerous IV’s I’ve had throughout the years, my veins being destroyed due to the harshness of the meds, such as DHE, as well as multiple “sticks”
leading to weak veins that could no longer handle any medication.
I am writing to highly encourage any of you with chronic migraines that are having issues with either hard stick IV’s, or collapsing IV’s once you get them, please inquire with your Dr’s the possibility of getting a Port. This has made a world of difference in the management of my migraines.
When I do go to the ER, it is accessed immediately and I feel nothing! I get meds within 5 minutes, when I used to have to wait hours to up to a day for pick line RN’s, or scheduled central lines to be done. My migraines have been so dibilitating in my life that this was the one medical treatment that has made a difference so that I can now focus on the therapies, not more added pain.
28 May 2011 @ 9:19 am
I to suffer from Migraines and have had DHE treatment, but not all the treatments have had a lasting affect. It has only been a year since I have started to have Migraines, but I am normally in hospital having treatment also for my MS. So over the 18 years I have been poked many timesand my veins are about done also, I normally have a Picc line placed straight away now which has made my hospital visits more tolerable. But one thing I haven’t yet been able to convince my Neurologist to let me have a port put in, he keeps telling me about the risks of infection is not good for me. That’s why he wil not leave the Picc line in any longer then is needed, although many times a few weeks after leaving the hospital I have had to have another one put in. So how can I convince him it is about time to have a port put in.
4 February 2011 @ 10:13 pm
Hi.
I watch my wife – 26 – of almost 5 years suffer weekly from migraines when she’s not on either Topamax or Gabapentin as a preventative. Unfortunately, living here in Kansas and up in Indiana, she is unable to get medicaid because on my Disability our family makes $317 a month OVER the cutoff for a family of 4.
I feel ABSOLUTELY horrible and worthless as a husband and parent quite frequently because of this, but I do my best to take care of her, our boys, the cat and the house when she is down like this.
We are right now in Kansas City 4 hours from home because of a migraine she’s had for almost 3 weeks that varies in intensity from a 7 to 12+ on the 1-10 chart. (I’m not kidding… her headache this time has decreased her former 10 to a 7.)
Making things even worse, I was in a wreck the 30th of December when some jackwagon in an SUV hit me from behind and I myself have been in some pretty intense pain – and she tries so hard to take care of me, when I need to be taking care of her. She has been under so much stress taking care of me, and I can do virtually nothing for her!
Anyway, she’s been suffering from migraines since the age of 16, from what I understand. She’s had chiropractic, homeopathic, neurology, and more… and (ineffective) meds out the yin-yan for 10 years. We FINALLY found that Topamax is her best friend and secret lover while we were living in Illinois after finding that Depakote works – but can cause psychosis!
The only problem with Topamax was that it wasn’t covered under state insurance – FOR HER – “due to age.” Now, we never once got to hear if she was supposedly too young or too old, or what her age had to do with it, but her neurologist was only able to sample her out for about 3 months. We kept trying and trying to get medicaid to pay for it, but they kept inexplicably denying the “pre-authorization” we needed for the pharmacist to fill it – and given our income, we couldn’t fill it ourselves.
THEN, we later found Gabapentin (sp?) which worked wonders! Not only was she able to get relief from the migraines – which that period lasted for about a year and a half, I believe – but also her chronic back pain AND she was able to leave behind her anti-depressant, Lexapro! (and I’ve heard that dropping Lexapro will actually CAUSE migraines, so y’all might want to take that into consideration.) Now, without looking it up, I think that Gabapentin is a form of or generic for Neurotin. So, that might be something that would help some here. Can’t hurt any worse, right?
Anyway, I will admit to the group that I was one of those people that was really unsympathetic to people with “just a headache.” I thought “just because you attach a fancy name to it, it doesn’t make it special.” Well, for the last 5 years, I have been extremely repentant of that attitude and I am so sorry I EVER had that thought, I was wrong, and I now know not only second hand but also first-hand how horrifically debilitating “just a headache” can be. My wreck pinched something in my neck that had effects in my head for a while, and I’ve had points where I was probably on about a 4-5 of what she USED to consider a 4-5, but I really thought that pain scale was skewed or something, because I was calling it a 10. But, through chiropractic, the vast majority of the pain of that magnitude is gone, and I am able to find relief with a 10/325mg Lortab, my flexoril, and a 500mg Tylenol (yes, I know the 325mg side of the Lortab is acetominephen, I just add the extra 500mg. Then, I take a long hot soaking bath, let my muscles untense, and take a nap. Then, I awaken feeling guilty because I have relief and my wife suffers.
If ONLY we could get the state of Kansas to open it’s eyes and realize that — when rent for a 2 bedroom house (can’t have an apartment because of credit) is $375 and utilities are in the $200+ range, not counting vehicle insurance and we have one person – me – able to work but can’t because I have 3 people at home who NEED me to take care of them — $500 for a family of 4 is NOT enough to be able to get medication to prevent chronic and acute pain disorders! Maybe, then we could get her the gabapentin or topamax she really needs!
In keeping with the subject at hand about DHE, we have been waiting for about 12 hours for her DHE to arrive. I don’t know what is going on, or when it’s going to end up getting here, but when we asked about 6 hours ago when the doctor came back to the room to check in with us, we asked him why we hadn’t gotten it yet, and why it hadn’t been ordered. He looked with surprise and says “It wasn’t in the computer? I wonder why that is?”
But, she had about everything a hospital ER can give you for traditional treatments of severe headaches/migraines – MINUS the nubain (just found out that it’s an analgesic OPIATE so they’re not giving THAT to us here…), dilaudid, or the other big opiate ERs are good for – but at least they’re giving her zophran to keep the nausea at bay… during our pregnancies before, it was discovered that was the ONLY thing that would do it. Phenergan may as well have been a proctological jelly bean for all the good THEY did!
I genuinely hope that everyone here’s suffering and my wife’s is able to be relieved in some form or another. Next time I hear someone with the attitude of disgust because of someone who “just has a headache” voice their opinion, I’m going to bulldog them like I bulldogged the Hutchinson Hospital because they weren’t taking my wife seriously and acting like it was “all in her head.” There’s a REASON KU Medical Center told my mom to get my wife here!!!
May God (insert higher-power-name-of-choice here) bless you all and deliver you all from your suffering, and lead you on paths of healing and peace.
Zach
PS – feel free to contact me:
avonguyzach(at)yahoo(dot)com
10 February 2011 @ 4:42 am
Hi everyone,
Just wanted to give an update…..went to the hospital for 4 days and when they tried to do the first IV DHE treatment I reacted pretty badly to it and had to be pulled off of the treatment…..my neurologist then did an IV treatment of depakote, magnesium, benadryl, toradol and oral drugs of zanaflex, neurontin, and some others. Well on the fourth day the cycle broke and my head pain was 0-1 and sent home with oral meds……needless to say I have had migraine everyday at varying levels. I am off of painkilllers and xanax but finding it hard not to overuse my migraine preventative therapy Maxalt. I had a migraine last night that got to be about an 8 and took the maxalt with a zanaflex and got extremely tired, and lightheaded. It took the pain away for maybe 2 1/2 hours and it returned at about a 3-4.. went to bed and could not sleep after ambien and zanaflex…..so hard not to get back in cycle of overusing meds but this is really starting to suck……why can’t they find something that works? So tired of being tired and so tired of being in pain……..
8 March 2011 @ 9:46 am
Hi to all, I still use my DHE injections upon migraine attack along with my medication cocktail, and daily oral medications, but, recently my Dr. gave me Botox injections for migraines. It’s too soon to see any results yet, but has any one else had the them, and, what has been your experience? The FDA just approved them for migraines in Oct 2010.
17 May 2011 @ 6:21 pm
Hi Betsy, I had botox injections for migraines in March also, but they didn’t not help me. I have been told that you might have to go through the treatments a couple of times before getting any relief. I am suppose to go back to my neurologist in July for another round of botox, but not so sure I want to spend the money since I didn’t feel any relief at all. It’s hard to know what to do when you’ve tried about everything. I had a right temporal lobe lobectomy back in 2002 for a scar tissue on the right side of my brain that had caused me to have seizures for over 25 years of my life. I am seizure free now Praise God! I just wish I could get these migraines under control so I could live my life to the fullest. Life is hard, but God is good!
28 March 2011 @ 1:47 pm
I have suffered from migraines since a car wreck in 1995. I have tried all the shots, pain meds, Botox ( works to control the worst from happening)
Has anyone had this problem? I have Kaiser insurance for the last 8 years. My pain Doc stopped the vicodin and started me on morphine for the last 2 months. I had a severe migraines and took my morphine (30Days of pills in 17days). When I requested a refill of vicodin my primary care provider whanted a pill count. I was honest and said I had taken all the medication. Now Kaiser will not allow any of my doctors to refill my pain meds. I have went to the ER and been given morphine injections? Has anyone had this problem? I am going to speak with an attorney, but could use some advice.
By the way….. My nuro has setup the DHE in hospital treatment this week in hopes of decreaseing the pain and suffering.
I am looking forward to the DHE even with the risk.
Any Help?
Thanks
Doug
29 March 2011 @ 12:03 pm
Hi Doug,
First so sorry to hear about you’re episode with morphine. I’ve never used morphine to quell a migraine, but if it works for you then God bless. When you go to hospital to get your DHE IV drip, remember that everyone has a different metabolism and reactions are individual. I use DHE injections upon migraine attack and they put the migraine out, but they also render me useless for 24 to 36 hours. Good luck with your new treatment and let the blog know how you recovered. I’m interested in your Botox treatment? How did that work out for you? I had my first set of injections and am trying to decide if the $900.(insurance won’t cover) is worth the charge.
Sincerely,
Betsy
29 March 2011 @ 4:56 pm
I get my first round of botox injections this Friday April 1st, I am a little nervous, but I don’t know why after having brain surgery this should be a walk in the park. I’ve had steroid injections but they didn’t help. I was hospitalized back in the fall of 2010 for DHE treatments but that too was short lived. The cost of these botox injections is crazy!! The doctor’s office told me that they will cost $825.00 every three months! I do have insurance but still will end up paying about $300.00 or a little more for each session.. Do any of you know if I will get any relief this first time around or will it take a few injections before I feel any relief??
Best Regards,
Cindy
29 March 2011 @ 5:37 pm
Hi Cindy,
I can certainly understand your apprehension with injections for
Botox for migraines, but you’re right; after going through brain surgery, it’s a walk in the park. I underwent two cranitonomys for clippings and survived the brain anyerism rupture and if you went through something like that, the botox sticks are nothing.
On Feb 4th I got my first set of injections. My Dr used 1 complete vial and gave me as many sticks around my forehead, scalp, head and back of head near my neck as possible. They are not painful at all, because the needle is so thin. It took around 2 weeks before I felt any relief and then I got some migraine lessening. I’m do for my second set of injections on April 4the, but I’m not sure that I’m going to have it done because of the cost. My insurance won’t cover the charge and it’s around $800-$900, every two months.I still take my daily meds. Let me know how it goes for you.
Good luck.
Betsy
29 March 2011 @ 8:01 pm
Hi there Betsy! I have had a right temporal lobe lobectomy for a seizure disorder that I had lived with for over 25 years of my life. I had a mass of scar tissue on the right side of my brain that had to be removed to stop the seizures. So yes, I guess these little needles to do the botox won’t be much compared to brain surgery. My head is still sore to this day from the brain surgery which is going on 9 years ago. I had crainoplasty surgery a couple of years ago to fixed an indentation on my right temple from the brain surgery. I really believe there is a never that is being compressed on my head that might be causing all the migraines. The neurologist don’t really know the reason I have so many migraines, but agree that it is possible that there is a nerve being compressed. I had my brain surgery at UVA in Charlottesville Va. where did you have your brain surgery? Yes the botox is very, very expensive if the insurance company wasn’t helping pay some of the bill there is no way I could do it. When the lady from the doctor’s office told me it was $825.00 just for the serum not to mention for him to administer it, I was floored! I will do what I can to pay for it if it works. My money was wasted on the DHE iv treatments and I am still paying for that. Let me know if you have your botox injections, and if it helps you. As I have told you I go April 1st praying for the best!
Blessings,
Cindy
6 April 2011 @ 10:52 am
For years I have suffered from Migraines. I used to be in ER so many times it is unreal. Finally,i found a Dr. that didn’t think I was some Neurotic,or someone after drugs.
My “WONDERFUL” Dr gave me prescription for DHE Injections.
Where ever I was If i had one of those Monsters,I would have my husband,or whoever was around give me that injections.
That Dr has now retired,My present Dr.,My Neurologist will not give me those shots I can’t get a straight answer from them as to why. sometimes I think maybe they don’t believe me,think I’m just after that drug. It is so awesome,it releaved the pain so fast, I never had side effects from Dhe,ever
6 April 2011 @ 2:29 pm
Hi Linda …I’m happy that you found relief with the DHE injections. It’s a strong drug for getting rid of a killer migraine. DHE isn’t a narcotic, so, I’m wondering if you have any other medical issues that may be affected by the DHE? I have read that DHE does irritate veins….I would ask him to be definitive with his reason for not prescribing the med.
“God Bless and feel better”
Betsy
6 April 2011 @ 3:52 pm
BETSY
IT’S SO CRAZY,I HAVE 2 DRS,NEUROLOGIST,MD.THEY BOTH SAY NO. IF THERE IS A REAL REASON,THEY WOULD HAVE TOLD ME(I WOULD THINK). ONLY THING (MAYBE)THAT WHEN I WAS A KIS,I HAD POLIO, ANEMIC. DON’T KNOW WHAT THAT WOULD HAVE TO DO WITH IT NOW.
MY DAD HAD “CLUSTER”,HEADACHES,MY MOM HAD “MIGRAINES”. HA!!!!! SEE HOW LUCKY I AM.
THANX FOR YOUR INPUT,I APPRECIATE IT.
3 May 2011 @ 8:38 pm
Hello everyone. I will be 37 this year and I have had migraines since I was 5. my doctor recently suggested DHE by IV. After reading all of your stories I don’t know what to do. I’ve taken literally everything that the doctor can think of. We are at a dead end right now.
Reading your stories makes me nervous.
14 May 2011 @ 3:36 pm
Hi everyone
I am now having DHE IV and I am having cramps in my inner thighs and direahea. Do you think I should stop the IV before it gets worse.
27 May 2011 @ 2:24 pm
I tried Migranal nasal spray, and it made my headache much worse. My doc said to just use a half-dose, and so the next time I tried that, and it still made my headache worse. So now I have several paid-for doses sitting there in my cabinet, and I’m not going to use them.
Maxalt tabs is the med that has worked for me for the past couple of years. Not the disintegrating tablets, by the way… though those were better for me in the past. Before that, it was relpax. It’s bizarre how some of the meds work for a while, then a couple of years later don’t work at all, and a new one (mostly) does the trick.
3 June 2011 @ 4:26 pm
I just took DHE, every 8 hours for 48 hours via IV at the hospital for severe migraines that were not responding to any other medication. (They tried… Excedrin, Imitrex, Fiorcet, Morphine, Muscle relaxors, Percocet, etc.) It worked better than any of the other medications I had taken EXCEPT when I was given the DHE, I had serious side effects for about 30 minutes after each dose. I had increased blood pressure, chest pain, sweating, dizziness, light headedness, and nausea. It didn’t get really bad until they discontinued the DHE. About 10 hours after the last dose, I assume when it was wearing off, I had severe chest pain, sweating and light headedness that had me end up in the cardiac unit for monitoring. The doctors think that the fluctuations in blood pressure from the DHE caused the chest pain. It was so scary that in the end, I told myself I would never take DHE again, regardless of how bad my migraine pain gets. It isn’t worth the risk. I am an otherwise healthy 32 year old female. I am now at home and have been put on Topamax for prevention and Fiorcet/Imitrex for migraine attacks. I am hoping that this works and that I don’t experience any more side effects from the DHE. I just got home today from the hospital.
Seriously consider the side effects of this medication before taking it. I don’t have any cardiac risk factors yet I experienced serious side effects.
4 June 2011 @ 10:48 am
Deanna, I am sorry to hear about your experience with DHE. I was 38 when I had chest pan and was diagnosed with mitral valve regurgitation.. The good news is that once I stopped the DHE and after 3 months of cardiac meds, my heart healed itself. It has been 2 years & though I still get migraines my heart is fine. I hope you don’t experience any more chest pain now you’ve stopped DHE.
8 June 2011 @ 1:54 pm
I can relate to so much of the suffering that others have shared here. I’ve not tried DHE, but don’t think I’m a candidate as I have Raynaud’s. I’m on Neurontin presently, but continue to have chronic migraines. Sometimes I have nausea and dizziness with a moderate headache, but always have an aura if I go outside without sunglasses. The only thing that helps is larger doses of prednisone. I even went through chemotherapy because my doctor thought the headache was lupus related. No relief.
I’m very frustrated. I’ve recently had botox injections but I still cannot work. I have no income, and would probably not qualify for disability due to family income. When I applied in 2002 they told me I could be a medical assistant instead of an RN! Unfortunately I didn’t appeal (I was DISGUSTED at such idiocy). I am no longer eligible for anything temporary because I haven’t worked in so long. Don’t know whether to try a second round of botox.
FRUSTRATING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
9 September 2011 @ 7:47 am
I have a 14 year old with CVS( cylic vommiting syndrome. This DHE we tried in January , 72 hours iv therapy. Today will b her second trip. This scares me. She hurts and crys the entire time, but she didn’t have an attack for 7 months. For her CVS this therapy seems to work. She does have major high anxiety, Not being treated for at this time, which we know brings on these attacks, which may last up to eight weeks in bed. Worse case.
10 October 2011 @ 5:46 pm
jan!i have cvs(cyclic vomitting syndrome) also and i’m 17!i suffer super chronic migraines i have not tried DHE yet but nothings taken care of my migraines yet!can you get in touch with me?i know its good to have other that know what your going through and i have only found one other person with cvs!i would love to get in contact with yall somhow just by email or somthing!i know cvs and migraines are a huge struggle!tell me more about your daughter if you want!God bless!
9 January 2012 @ 2:35 pm
My spouse was admitted to UCSF, getting DHE IV after doing 4 days detox off a lot of opioid pain medicine and triptans, and he is tolerating it well and is the most awake, nausea and pain free he’s been in many months, having had a headache every day in the last year.
The doctors there believe that opioid pain medicine can interfere with the ability of other medicines to prevent migraine.
He was very resistant to trying to go off opioids and triptans, but so far he is doing amazing.
Apparently the DHE treatment is a one-time deal to “reset” the brain and break the headache cycle. Some patients repeat it after 6-12 months, but you can get medicine overuse headache from DHE (like triptans, aspirin, and opioids), so it’s better to use it as a reset button.
30 July 2012 @ 1:58 pm
Hi,
Did Dr. Peter Goadsby administer the DHE treatment? I ask because I am set to go in next week for 5 days. Thanks.
Greg
1 August 2012 @ 1:23 am
No…dr. Abraham Nagy….do yourself a huge favor Greg…forget you ever heard about DHE…my husband has been crying along with for 5 months, DON’T do it!!!!!!!!
Janet Jones
Las Vegas
Jones8900@ aol.com
Email us …don’t move forward with DHE
31 January 2013 @ 12:04 pm
Everyone has different reactions to any medication/treatment, I 2 went to DHE with Dr. Naggy (no longer there) and did more than one treatment as the first treatment really doesnt do much. after awhile of trying different things, im now in the UCSF Headache Centers Botox research program which has highly been recomended for treatment in migraine areas. Look into it!
9 January 2012 @ 8:31 pm
Someone recently told me about a procedure where blood (patient’s won) is injected into the muscles (I think) in the neck. Has anyone heard of this treatment?
12 January 2012 @ 1:17 pm
My daughter whom I spoke of before had the dhe treatment in September. She almost died due to wrong medication being given per doctors orders. Her blood pressure bottom out. 5-8 more weeks of hospital stays to get her straighten out. Episodes have increased. SHE will NEVER go through another dhe treatment. Good luck to those it does work for.
25 March 2012 @ 1:18 pm
i have just received my first and last treatment of DHE. i am out of the hospital 7 days and feel just as awful as i did during the treatments. the side effects are not subsiding. the constant heart pounding, chest tightness, metal taste in my mouth, lower back pain and leg pain, not to mention the nausea and insomnia….i will never do this again. after suffering for 35 years with migraines…i don’t know which is worse…medication overuse….or DHE side effects…at least i could function for a day and feel somewhat normal. i can’t enjoy food because nothing tastes good…have no desire to drink fluids, so dehydration is a worry….no sleep….and weakness….i am scared.
i hope your daughter is feeling better. i wish these side effects would disappear. my son and his wife are expecting their first baby, my first grandchild, in 4 weeks. how am i going to travel across the united states to see this baby when i can’t get dressed.
12 January 2012 @ 1:32 pm
One mored comment. My daughter is now 15 and was passing out, way more migraine attacks and CVS. After dhe treatment was having chest pains, had to wear heart monitor for one month. Still having chest pains, still sick,(worse now). Just simply put can not function..I’m very angry DHE made things way worse the second time. No child should have to live like this. Does anyone know where else to go for treatment of some kind. DESPERATE for a solution.
14 March 2012 @ 2:11 am
What your daughter is experiencing sounds an awful lot like whqr I’ve beef going through. I’ve been fighting migraines for years and ave taken Dhe several times <right now as a matter of fact). I kept passing out …this just started in the last two years or so, and scared my family to death. My neuro had me do a "tilt table test" which will tell if is blood pressure related. Mine is low.Turns our there was a problem with my nervous system talking to my vascular system, and down I would go. I am now on medicine to raise my BP. I 'm just worried about their effect on my migraines. Best of luck." just wanted to let you know about this. it is called vasovagal syncope.
12 January 2012 @ 6:56 pm
Jan,
Has your daughter tried Periactin? It is generally used in children for migraine. The bad side effect is weight gain, as this medication is also used to treat anorexia. Periactin is the only thing, besides large doses of prednisone, that has helped me, and I’m an adult. Don’t like the weight gain but it is the only thing that has allowed me to be more functional. I’m hoping to be able to go back to work.
12 January 2012 @ 9:05 pm
excuse my ignorance but could someone tell me is DHE an injection of dhyldergot which is a pain relief for migraine
12 January 2012 @ 10:24 pm
Dear Jan,
So sorry to read of your daughter’s experience. My son had a similar experience with dhe. We have a friend who had success with the diamond clinic in chicago. You might check there. I would not give her kolonopin. They don’t always mention the pediatric rage side effect.
6 February 2012 @ 11:36 am
I am a chronic migraine patient. They started for me in 2000, at that time most Doctors would either give me demerol shot, & or Dilaudid. I have used everything from Neurontin, Toperimate, amitriptiline, & now Botox. I have had several hospital stays with DHE treatment lasting anywhere from 3 to 5 days. After using Opiods for 5 years I decided I needed to be taken off the meds, I felt as if i was getting rebound headaches from them. At that the Doctor decided to put me on Suboxone to help with chronic pain, now i believe the opiods were causing muscular pain possibly mocking Fibromyalgia. I continued on Neurontin, Toperimate, amitriptaline and the suboxone for 6 years. I finally made the decision I was never going to take any meds again. Went in the hospital received a Vivitrol shot in hopes of the inevitable withdrawal. Was the worse and hardest withdrawal, couldn’t imagine doing it without the vivitrol or ativan. If anyone has any questions feel free to email.
14 March 2012 @ 8:09 pm
Amy,
How are you doing now?
29 May 2013 @ 6:47 pm
I’m interested in the suboxone, did you have migraines while you were on it? My sisters has to go to the ER at least once a weak for demerol and phenergan IM, now refuse to treat her and have accused her of drug seeking, although she is puking on their shoes!! We are desperate for some answers! One doctor has suggested DHE. I am against it.Thanks
Dianne Johnson
tedijohn@hotmail.com
30 July 2012 @ 10:32 pm
I had DHE march 2012…it is the WORST WORST thing I ever tried!!!!!!!!!!!!!! being a migraine sufferer for 35 years I felt I had to try it. I am so so so sorry. It is now almost August and I have suffered serious side effects. I have not slept since DHE, and I don’t mean I don’t sleep well, i mean I do not sleep. I have baffled doctor after doctor. On july 17, 2012 I was diagnosed with auto immune nerve disorder. For me the doctor said it means your nervous system has basically gone berserk and it will take as long as it takes for it to calm down. Please do your research! I suffered through acid reflux, no taste buds for 2 months, hearing so acute I thought I would go insane, smells were so much more intense than ever before and much more nauseating! think long and very hard. I just was given a miracle by the Lord that I do not have lupus. DHE, the specialists I see now said for me it was destructive …DON’T DO IT!!!!!!Janet Jones Las Vegas Nevada
Jones8900@aol.com
2 August 2012 @ 7:21 pm
It must be so confusing when your head hurts so much and you hear half the people tell you DHE worked and half say it caused horrible side effects! As an almost sixty year suffer, I have had the luxury of seeing headache specialists through the years and all over the country. I did try DHE with Dr. Goadsby at UCSF about two years ago, I think there were four of us. three of us handled it well, I actually enjoyed it as a time to read and draw and even had a masseuse come in…one woman had terrible side effects..but in the end she had the most dramatic recovery. I did not stay in touch after a year but she was still well. I had good results for a few months..but it seems every treatment fades after a bit for me. I did the best on Topomax and quite well on verapimil. One doc suggested I just keep switching from one to the other. I am now lucky enough to just be starting a botox study now that I live out here and have high hopes…as ever..because without hope it is hard to go on isn’t it?
I also think that approaching the headache from multi factors is wise…food, exercise if possible, massage, acupuncture, meletonin to sleep and for its anti inflammatory abilities, B2 for the vessels, coq10, other anti inflammatories like cherry juice and fish oil..and keeping a diary that not only records food but records mood. biofeedback and hypnosis..things to relax your muscles as well as meditation..its a disease..but you can make it harder for this disease to get a foothold, which would become rebounds or chronic daily headache. Finally, if I could still take Indomethecin, which is a strong anti inflammatory given to arthritis patients..it works so well. I wish over the years I ahd been warned about what it can do to your stomach and how to avoid that more. Sometimes that can work before you have to go to the sumitritans for instance. You might try to get statistics on the number of people helped, versus number of people who got unacceptable side effects.
27 December 2012 @ 8:24 pm
Just read an article recently about hemicrania continua. Have tried Indomethacin and it WORKS! Kills my stomach though. Only other thing that has worked is Periactin (cyproheptadine). Periactin is used in childhood migraine. It is used to treat anorexia as well, because it makes you want to eat constantly. Don’t like that!
Do some reading on hemicrania continua. I told the doctor at UCSF that the headache never goes away, but he looked at me like he didn’t believe me and recommended a trial of a whole list of medications. None of them worked.
29 January 2013 @ 10:09 am
I had a migraine (status migraine) for 6 weeks. Was given prednisone pack which didn’t work, then at the er given reglan, benadryl, dilaudid and decadron which didn’t really help either. Finally, was hospitalized for DHE treatment. I had 9 treatments total over a period of 3 days. As soon as they gave me the first dose I could tell it wasn’t going to help. It felt like all the nerves in the back of my head were tightening up. While I was in the hospital I continued to have a 6 headache. It never got better. But as soon as I was released the migraine got much much worse than it was before I was even hospitalized. I would rate it a 20 compared to what I started with. I felt that bad. It felt like all the blood vessels in my brain were in spasm. When I got home, I did more research and found that vasospasm can be a side effect. I’m not sure if that’s what happened to me but it sure felt like it. I really regretted getting the treatment. I know everyone has a different experience so I am not telling anyone that this treatment isn’t right for them but it definitely didn’t help me. After that, I found a new doctor. He gave me an iv of magnesium and that didn’t help either. But he sent me home with nambutone, bozwellia, coq10, inderal and fish oil. I’m still battling the migraines, but I’m feeling a lot better.
30 January 2013 @ 12:35 pm
I’m with Laura…DHE wasn’t the answer for me either. I was hospitalized for treatment in march 2012. It is now the end of January 2013 and I’m still suffering from the ill effects of DHE. THINK LONg AND HARD BEFORE YOU CHOOSE THIS TREATMENT OPTION.
I would highly recommend no.
Janet Jones
Las Vegas to Atlanta
31 January 2013 @ 11:55 am
I had the DHE treatment..it was a 5day hospital stay to distrubite treatment, after doing away with the treatment due to imunity to it, Im now in the research program for Botox treatment in my migraine areas.
10 May 2013 @ 6:27 am
I had a 5 Day DHE treatment in Dallas at Baylor in May 2013 for Chronic Migraines that would not go away after 8 months of more conservative treatments. My Headache Specialist recommended their comprehensive inpatient treatment which includes 5 days of DHE infusions every 8 hours over the 5 day stay. This broke my transformed migraine by mid-week. It sure helped me!
10 May 2013 @ 6:22 pm
Currently undergoing treatment for severe migraines that have not responded to anything…including DHE at my neuro’s office and at the hospital. I am at one of the few nationally known migraine treatment centers. Started two nights ago with DHE, just because that’s their protocol, along with anti-nausea drugs and others. They wean you off narcotic pain meds, which I have used for years when Triptans don’t work… needless to say, I was not happy about giving up the only thing that has given relief. Did some research on my own and was surprised to learn that this has been proven clinically. By this i mean that overuse… more than once every couple weeks just beget more migraine misery…Google it if you wanna see for yourself.Today, they ordered facet injections, which scared the hell out of me, but my migraines are always on one side, and the muscles in my upper back, neck and going up the back and side of head hurt like hell. I am amazed to report that my previously (this whole week) horrendous migraine is GONE!!!!! I mean all gone. I know this doesn’t mean it’s permanent fix, but just to have real relief is worth anything. I just ate real food with no migraine, no nausea. btw, they knock you out for the injections…whew! If you want to hang onto your narcotics…don’t go to these clinics. But after YEARS of misery for me AND my family, I have hope. I do not think this means I won’t get bad ones where I may have to resort to narcotics, I will not be eating them like candy anymore. I want my life back….and not the one on the couch!!! I wish all of you help and freedom from pain. hopefully this will be a real pain free or at least mostly pain free life. Yay!
,
10 May 2013 @ 9:22 pm
I’m so glad this worked for you…you are not the majority. Since I went through inpatient DHE in march 2012…I wouldn’t do it for anything on the planet. I’m still suffering hideous side effects and will tell anyone who will listen….don’t try it it isn’t worth the risk. I have a friend who is beating cancer and she said chemotherapy is a cake walk compared to DHE. I stand with Stephanie…glad this worked for you. I still suffer with chronic migraine and try to work. Ynlife around them when possible, but the good Lord has a purpose for me and migraines are a part…for 37 years now and chronically for 13 years…..but DHE nope, not a chance…ever !
Janet Jones relocated to Atlanta from Las Vegas 4 months ago
10 May 2013 @ 10:49 pm
Judi
Where are you receiving DHE and who’s your doc???
Janet
31 May 2013 @ 8:13 am
I am really curious at what nationally known headache clinic you refer? Please share.
Janet Jones
37 years of migraines..last 12 years chronic
10 May 2013 @ 9:33 pm
I am getting some relief with Imipramine. Have tried EVERYTHING except DHE.
10 May 2013 @ 10:48 pm
Judy, I remember the glory I felt the first time I woke up in the hospital without a migraine. It was worth the collapsed veins and extreme pain I went through each time they hung the next bag of solution, it would blow the vein and they would have to dig around for another vein. About a year later I started having chest pain. I thought I was going to have my life back but traded headache pain for chest pain and shortness of breath. It took them four months to determine I had mitral valve regurgitation. They were debating replacing my mitral valve. The doctor had me stop the DHE and put me on heart medication. Within a month I had 75% heart function back and by January 95%. I was able to stop the heart medication and have been fine (heart wise) ever since. The neurologist and cardiologost both agree it was as a result of the DHE.
Judy, my story is similar to yours. I was 38 when this happened to me. I knew if I didn’t get my life back I would probably lose my husband. I have been able to manage my pain with zomig and codeine as well as meditation. I am careful about medication overuse and when need be I wean back so the codeine will work again. I also see a psychologist who specializes in Traumatic Brain Injuriesm funnily enough chronic migraine sufferers have similar symptoms to brain injuries. She has taught me how to manage, respect the pain without letting it win.
I truly hope DHE works for you. Unfortunately I’m still suffering. It is difficult to draw blood on setup an IV because of the DHE.
12 May 2013 @ 8:33 pm
Hi All, I thought some of you might be interested in hearing my story with DHE treatments which I understand clearly how painful it is.
At the moment I live in OR and since 2011 I have suffered from daily headaches. over the last couple of years I have been in and out of hospital trying to get people and Dr’s to hear me in the hope of just getting some relief from the daily agony.
Since last November my Neurologist helped me treat my migraine, as an inpatient because I am so sensitive to the DHE and has taken a long time to come up with the treatment that has given me some help to cope.
This treatment started with Kytril then Phenergan then the DHE, and it took us a lot of trial and errors to get to this point. So to get this treatment and have the least or no side affects, which for me was nausea, soreness of my skin. it felt like a bad sun burn where someone would touch you and it would sting like mad. But when I was admitted into the hospital we would put these medications in as much fluid to dilute them as much as possible and to give me them one by one and for as slowly as possible, and it worked in the way that no more was I squirming around because of the painful side affects. Oh plus I had a port fitted because the picc lines would block and became painful having them done over and over.
I had the DHE treatment this way up until Feb 2013, because I wanted to try a place in Chicago where lots of people travel many miles to seek treatment that possibly have not tried before, and could do it in a hospital setting. The place is called The Diamond Headache Clinic in Chicago, I arrived in this place 2 weeks ago because after having my first appointment with the Dr she admitted me into the clinic right away. To cut this down a bit because I am getting tired, today we had a break through with a medication I have been saying no to since the first week and is called Magnesium Sulfate, given by IV every 8 hrs, because this causes you to go to the bathroom a lot, and was not good for a person who gets C-Diff. But yesterday the Dr talked me into trying it, my headaches would be from anything from 6-10 out of 10.
Today I went down to a 5 and I know it doesn’t seem very much , but to some one like myself it is a step in the right direction, and was a big step in to recovery and hope that it might go down a bit more.
I hope this message gives some hope to you and feel free to ask questions and I will try to help answer them as much as I can. Take care, Liz.
13 May 2013 @ 11:36 pm
Liz
I’m originally from Chicago and moved with my family to,las Vegas in September 1992. I traveled back for treatment at the diamond headache clinic in December 2004. DHE was never suggested or magnesium sulfite, which I hear is quite helpful. Dr. Frietag ..my doc there at the time was not very interested in listening..just dictating. He is now at Baylor headache clinic in Dallas ..my success from treatment from 2004 lasted about 3 months..then the neurologist I went to in Las Vegas bounced me from drug to drug. I have chronically suffered daily for,the last 8 years..DHE in march 2012 failed miserably…I pray for,you to continue to move forward. I now live in Atlanta with my family and am hoping for,help at Emory university hospital.
Janet Jones
20 May 2013 @ 10:19 am
Hi All,
I’ve read with great interest all your stories. I too have suffered for almost 50 years – mine started when I was 9 years old. I have been on every treatment known. Narcotics made me worse and the rebound was awful. I refuse to go to the ER as they just inject you with narcotics and send you home. Finding a good Neurologist who will listen and help is rare. I’ve tried everything including Botox which works for about two weeks until a major migraine just undoes the effects and then it’s back to square one for me. I’ve been on Topamax for about 10 years and it really helps reduce the severity of the migraine. I get them about every two to three days. I take a Zomig and Cambia cocktail which knocks out the headache but leaves me unable to function the rest of the day. At 60 I’m faced now with a decision of going in the hospital and trying the DHE Infusion. I’d be doing it at UM Miami. Anyone familiar with their program? After reading all these testimonies I feel defeated before I begin. Why isn’t there a protocol for Migraine Sufferers yet that works???
Jan
20 May 2013 @ 8:22 pm
I would double and triple check results from the UM Miami before doing DHE. If you are sensitive to treatments and/or side effects BEWARE!!!! I am still recovering from DHE inpatient treatment 14 months later….and I did my research. One of the nurses at the hospital had the treatment by the same doc and she recovered with a 99% success rate. I was the docs only failure and they all made me feel like one. Then all that was suggested was more drugs like all the others that failed…I don’t know of more than 1 success story…not enough to move ahead I don’t think. I will pray for you Jan.
Blessings,
Janet Jones
16 August 2013 @ 1:55 pm
I have generally had excellent results using IM DHE at the onset of a migraine. It works best (and hurts least) when injected into the buttocks but when I’m alone I will inject it into my leg. I have had no discernable side effects using this medicine over more than two years. It is remarkable that few ERs and few neurologists seem to know about it.
17 August 2013 @ 7:07 pm
Bill, that’s wonderful that you get relief from DHE injection. I’ve been using it for 15 years and inject monthly. Nausea sets in and so I take Zofran, plus a Seroquel to help me sleep.
My last ER visit I also got DHE through IV and you are right about them not knowing that it’s available. What I don’t like is the zombie feeling that last until the following day. I inject in my thigh also. Stay well.
19 August 2013 @ 1:27 pm
I’m like the only one I know that didn’t get relief from DHE.
I still insist that the picc line wasn’t inserted properly so therefore the DHE didn’t really go into my bloodstream, but in the tissue. My doc said impossible…but I kept saying the picc line hurt and when the bandage was removed 8 days later I was sooooo bruised that I felt I didn’t get the full effect…but my reactions were soooo awful during treatment that I’m too fraud to try again…any advice??
Blessings
Janet
30 September 2013 @ 10:19 am
Hi, I am a mother of an eleven year old girl who has daily headaches. She cannot even remember at this point what it was like not to have a headache. When the headaches get bad, she actually hits her head because she says the pain from doing that takes her mind off her headaches. We have tried every type of med for headache relief. She has be hospitalized in the ER and given Toradol with no relief, her headaches returned before we even reached our car. I am thinking of trying DHE administered in a hospital. Does anyone know of any other children that have tried this medication? I am worried about the long term effects on her heart. But I cannot stand to see her in pain any longer.
1 October 2013 @ 12:31 am
Check with the headache specialists from Cincinnati I believe is where they have the best and newest treatments for migraines in children. It is of my opinion that DHE is not the answer. Before subjecting your young daughter up to this treatment…I urge you to do your research.
Blessings and prayers for your little girl,
Janet Jones
1 October 2013 @ 3:04 am
Has she tried Cyproheptadine? It is often used for childhood migraine. It is also used for anorexia, so it has weight gain issues.
2 October 2013 @ 8:47 pm
Try the dhe. There are some good publications showing efficacy with manageable side effect profile. My son is pain free after a monthlong migraine with aura following the raskin dhe protocol..
Ps to Janet- the docs at cinci use dhe with good results and have published on it.
3 October 2013 @ 9:16 pm
Mom,
19 months ago I underwent DHE inpatient treatment. Started with cold turkey withdrawal of all migraine preventatives and abortives. Four days of 1000 mgs of Picc line administered aspirin every 8 hours…followed by four days of DHE every 8 ….for me..it failed..and the side effects still haunt me today. I know I am the minority…but I cannot recommend something that caused me so much pain and new illnesses.
My prayers are with anyone who goes the DHE way.
Blessings
Janet
PS I was aware of Cincinnati’s children’s treatment of DHE
7 November 2014 @ 2:15 pm
Regarding botox injections for chronic migraines. I have had terrible chronic migraines for over twenty years. I was on disability for 15 years because of them. I finally found a neurologist who introduced me to the botox injections and they have been a life saver! It takes more then one course to get the full effect though!!! The first time you only get minimal relief but if you keep getting them every 3 months by the 2-3 time the difference is amazing. I’m not on disability anymore and I was able to get my bachelors degree in social work and am now in a masters program
8 November 2014 @ 11:47 am
Hi all, I thought I would add a bit more to my story. After my time in Chicago I came back and told any Dr who would listen that when IV Magnesium was introduced with the DHE treatment it made such a difference, but struggled to get anyone to try it.
I would get to the point where I would have to on be admitted into the hospital because I got to the stage where I needed treatment to try and turn this agony.
Each time I would get the Magnesium with the DHE I would get relief.
After this stay I sort out trying to get to another clinic, I ended up going to Michigan and was admitted into the hospital again right away and spent another 2 weeks trying different medications. The thing I liked about this place is, if a med didn’t help they stopped it right away and tried another. I got alot of relief because I was given the Magnesium with the DHE every 8 hours, what a difference.
once again once back home the same thing happened like Chicago, I had trouble convincing Dr’s here in OR to do the same thing. So what I done next was a big turn around for me, I know people are saying Botox and other drugs work for them or the DHE was a nightmare for one and not that bad for others. What one drug or treatment that works for one might not work for another, which is so true.
you have to try what you think would be good for yourself, all of us what the same thing, relief.
So what I done this year is go and see a homeopathic doctor, I have to say I didn’t believe in this type of Dr and because I was desperate to get away from my own Dr’s and try something new. I have to say it has been the best thing yet, he has kept me out of the hospital since May and I have not had to have the DHE treatment since. I have the IV Magnesium every week and a bunch of other meds because the extensive blood testing has found a bunch of things that have been making me ill and causing the Migraines. But what a transformation, I still have a headache every day, but the hope has come back that the future will be brighter and more managable and I can enjoy my life again, instead of just existing.
Hope someone will get some hope from this, we are all different I know this hasbbeen a turn around for me and may not be good for anyone else, but never give up and fight until you get some sort of relief.
Take care and I pray all get relief in some way, liz.
8 November 2014 @ 7:25 pm
I’m so happy for you Shannon. I tried Botox but had neck pain and weakness associated with it so I didn’t continue with the injections. I didn’t notice any benefit from the first injections. It has been a miracle for some, and I am so happy for those who have success with it.
11 November 2014 @ 7:25 pm
I have gotten tremendous relief from chronic migraine from using butterbur. I still have the chronic rt. sided headache and facial pain, getting some relief with amitriptyline. Taking butterbur twice a day has drastically cut down on the full-blown migraine exacerbations. My neurologist suggested it under the brand name Pendolex, but I got a much cheaper preparation from Swanson’s Vitamins that has worked very well. The company sells the name brand as well. Though it is not on the bottle of their brand, the ad says it is certified free of pyrrolizidine alkaloids. I have been taking this product twice daily for over one year, and have not shown any negative effects in any of my blood work.
13 December 2014 @ 1:49 am
I suffer from chronic migraines with aura for as long as I could remember (more than 21 years now) and I’ve also tried almost everything and what would work for me in the past was Maxalt and Promethazine but when this didn’t help after the third day, my neurologist at the time, ordered me a Demerol injection (100 mg) with a Promethazine injection (25 mg)…this stopped my migraine and I would be migraine free for at least two weeks so for two years I was getting these injections twice a month but then Kaiser stopped using Demerol all together…My neurologist then ordered me a Dilaudid injection (2 mg) to replace the Demerol but it was to strong and made me sick to my stomach but this was the only thing that worked so he increased my Promethazine injection to 50 mg so again, it worked until I moved across the bay and my neurologist stopped working with patients with headaches so now Kaiser has taken me off of narcotics completely and all the new Drs/Neurologists want to do is want to try me on what they think will work for me so currently, I still do Maxalt and Phenergan but my migraines are more frequent and lasts longer now! My new neurologist suggested Botox so I tried that just a week ago and instead of making things better, I’ve had a Migraine since so today my Drs prescribed me Migranal (DHE) 4 mg/ml nasal spray and the same in an injection format but now I’m not sure if I want to try it but I’m desperate for some relief! And reading this blog, truthfully, I’m a little afraid to do so! I’m so glad for this site, it’s very informative and I do hope that my story will help others out there too! I’ve bookmarked this blog/site for future reference! Thanks to all for sharing!!!
6 January 2015 @ 3:19 am
Hello everyone.
First of all , I’m sorry you all suffer from migraine. My heart goes to all of you. I personally don’t suffer from it but I had experienced it twice in my life and it was horrible! But enough about me my concern is my daughter.When she was 7 was ddiagnosed with complex partial seizure. I treated her with natural medicine and she got well. Sadly when she turned 11-12 She started to have headaches every day that end up in migraine easily. I tried natural medicine without results. She then was diagnosed with migraine with aura. She has been battling migraine ever since. Her abortive pill is Gabapentim 1,200 mg daily. They removed her from Amitriptyline because her brother who also have migraine but in control, was having suicidal thoughts. (Everything is ok now) As result of having amitriptyline removed she was having rebounded retractable migraine for weeks. After nothing else works for her the Dr told us about DHE. She was admitted on Dec 30 and stayed until Jan 1. The first round of DHE was a complete nightmare and torture. Hot flashes, increase headache, nausea and chronic vomiting. She slept in my chest that night in the hospital. At thetime of the second round she started to lliterally shake in fear of anticipation. By this time she didn’t wanted anymore. I convinced her to give it another try after remembering all the suffering she takes at home and the long trips to the ER to be treated with morphine. She took the second round but didn’t finish it because anxiety was kicking in bad. They let her sleep and tried it while sleeping. She took it well. Then the fourth round at night…back to square one. Nausea, vomiting, anxiety all together and chronic. But to our surprise migraine was at 1% to 0 …so round 5 we moved to ffinish treatment. By this time she was more courageous and told the nurse…let’s do this. She was having nausea but was handling better. After it finished chronic nausea kicked in and anxiety. So she shower again. She shower ever y 3 hours to help her soothing the whole thing. She say it help so I did everything she wanted.They released her the next day with 0 migraine to 1% . She was experiencing nausea at home but no migraine so she was delightful. . Until night time headache reach a 6% but went to sleep and wake up without it. The bad part is the anxiety. She still shakes and her Dr prescribe her with Lexapro while she was still at the hospital. She still experience shaking, don’t want to talk about what happen and according to her she don’t see hospitals the same way. And she is having an uneasy feeling surrounded by lots of people. Today will be day 6 after treatment and she have a therapy scheduled for today looking to help with this new issues. So far the treatment is working against migraine but second effects are bad also. Even though she says anxiety isn’t as bad as migraine. At least I see her laughing more. Hopefully anxiety goes away and she can enjoy life to the fullest. She is just 16. To those who are looking for an advice about this treatment, I can’t tell you do it or don’t. For what I been reading every one is different and react different to it. But for one thing I’m sure. I won’t make her have a second treatment of that. If things get bad..well try something else. Best of wishes to everyone and hopefully you all feel better soon. 🙂
30 April 2015 @ 1:18 pm
Hi All…Question for anyone still injecting with DHE: I was not able to fill my prescription with Optum RX (mail order pharmacy) because the price has jumped, Sky-rocketed to $1700.00 for a 90 day supply. I have been injecting with DHE for 17 yrs now since my brain aneurysm rupture and clipping. Has anyone else had a price increase with DHE? I have always paid a flat $25.00 for the 90 day supply. I am at my wits end.
30 April 2015 @ 4:45 pm
Elizabeth – I inject with DHE also. It sounds to me like your insurance has quit covering your injections. I get a 90 day supply of DHE through Express Scripts mail order and pay $20 for them. My insurance covers the remainder of the cost which is about what your being charged. I would call your coverage department and ask why it has been removed from coverage and start there. Maybe your Dr. prescribing can help you get an exception on it if its the only thing that works!
3 May 2015 @ 2:53 pm
Hi Debra,
thanks so very much for your comment. Yes, I also believe that Optum RX may want to slowly stop filling the prescription for DHE. I have spoken with the managers at length and they state that they are still filling the prescription but the price has skyrocketed. I will continue to speak with Optum RX and United Health Care and let them know that Express Scripts is charging only $20 for a 90 day supply. If you see any changes to your DHE, please let me know. Stay well and once again thanks.
Ergotamines & DHE for Migraine | the existential rip
9 June 2016 @ 10:09 pm
[…] DHE and Migraine Treatment: Why Some People Still Use it (Headache and Migraine News) […]
Ergotamines & DHE for Migraine | The Chronic Advocate
11 February 2017 @ 10:27 am
[…] DHE and Migraine Treatment: Why Some People Still Use it (Headache and Migraine News)3 […]
19 July 2017 @ 1:42 pm
Legitimately the ONLY medication I’ve been given that takes away my status migraines, I don’t care if it burns or if my joints hurt after.
My head isn’t throbbing for the first time in 3 WEEKS! As for the rebound headache, maybe some people get them and i do have a minor headache but not a migraine and i’ll take a headache over a migraine any day!
29 December 2017 @ 12:25 am
My son goes into the hospital for DHE a bag every 8 hours 9 times his blood pressure stays pretty good and only gets a little nauseous. Once done he will go 3 months with no migraines no triptan drugs work for him and he still takes his preventive meds IV was a problem this time but made it through he is 16 and misses quite a bit of school. The DHE is a godsend for him but i know it doesn’t work for everyone