Comments on: DHE Migraine Treatment: Why some people still use it

By: Nickie A

Nickie A — Tue, 02 Mar 2010 18:57:47 +0000

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

By: Mary

Mary — Mon, 01 Mar 2010 02:54:40 +0000

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.

By: Karen Cadenhead

Karen Cadenhead — Wed, 16 Dec 2009 02:35:37 +0000

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.

By: Mary

Mary — Sat, 12 Dec 2009 10:44:58 +0000

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.

By: Cheryl

Cheryl — Mon, 23 Nov 2009 00:43:37 +0000

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

By: Nickie A

Nickie A — Fri, 16 Oct 2009 22:12:20 +0000

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.

By: kelsey

kelsey — Wed, 07 Oct 2009 20:54:26 +0000

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!

By: Marcia

Marcia — Sun, 04 Oct 2009 23:34:11 +0000

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!!

By: Jan B

Jan B — Wed, 16 Sep 2009 01:07:14 +0000

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.

By: Nickie A

Nickie A — Thu, 03 Sep 2009 22:35:27 +0000

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.