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

By: Amy

Amy — Mon, 06 Feb 2012 17:36:29 +0000

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.

By: Landa Wagar

Landa Wagar — Fri, 13 Jan 2012 04:24:20 +0000

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.

By: donna freeman

donna freeman — Fri, 13 Jan 2012 03:05:52 +0000

excuse my ignorance but could someone tell me is DHE an injection of dhyldergot which is a pain relief for migraine

By: Anne

Anne — Fri, 13 Jan 2012 00:56:13 +0000

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.

By: Jan

Jan — Thu, 12 Jan 2012 19:32:30 +0000

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.

By: Jan

Jan — Thu, 12 Jan 2012 19:17:51 +0000

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.

By: Anne

Anne — Tue, 10 Jan 2012 02:31:03 +0000

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?

By: A

Mon, 09 Jan 2012 20:35:06 +0000

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.

By: Jan

Jan — Fri, 09 Sep 2011 13:47:33 +0000

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.

By: Anne

Anne — Wed, 08 Jun 2011 19:54:41 +0000

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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!