After 2 rounds of Botox for chronic migraines. We are opting for plan B
a 5 day DHE in patient treatment at UCSF with Dr. Goadsby.
I am wondering if anyone has been through this and could share there experience the good and the not so good. I have had DHE interemittently and i seem to respond to it. How will a five day course change anything? What preventives can I try next?
Karen
Hi,
I'm due to go into the Royal London I think for this in the next couple of weeks. Last week I was and still am beyond having had enough. I took two days off work which means its severe for me as normally I struggle through tho I often don't get much effective work done. I can't remember the last time I was pain free or pain-free enough to forget for a while or even just a few hours. I can't get an appt at the Neurology Hospital in Queen's Square for several months so the neuro team at Bart's who I've been seeing regularly as an outpatient suggested DHE as an option recently. I rang them up last week and now they're going to admit me. I'd be grateful to hear other peoples experience oto.
M
I did go through the in-patient program at UCSF under Dr. Goadsby's care. At the time I was having 20-25 migraines a month. Although it is literally a five day treatment, it really starts Monday at 2 pm and ends Friday at 6 am. It is an IV of DHE (and an anti nausea in my case) every 8 hours.
Some people lose their IV and have to go to a pick line due to the constriction of their veins; I didn't have to, but I did need to change my IV spot a couple of times.
The treatment worked in that I didn't get any migraines for several weeks. My preventatives seem to be working a bit better now, and I usually only get 2-3 migraines a week. If my migraines get way out of hand, based on the in-patient treatment I had, I now use Migranol (DHE nasal spray) every 8 hours for 3 1/2 days. It seems to give me tremendous benefit without the in-patient part. That is under my neurologist's care, not Dr. Goadsby's. It is perhaps worth discussing with him, though.
I personally avoid seeing Dr. Goadsby if I can because he wears so much cologne and gives me a migraine every time I see him!!
Good Luck.
When I mentioned the cologne to Dr. Goadsby, he told me that in 25 years of practise no one had ever mentioned that to him before. When I emailed him the day before my next appt to ask that he refrain from wearing cologne at my appt, he ignored it. I actually asked him not to come into my hospital room the first day of treatment because of his cologne.
You might want to read the Lancet Neurology or this month's Psychology Today. A Baylor study on migraine indicates it is not blood vessel dilation that causes migraines but nerve dysfunction in the CNS affecting the trigeminal nerve pathways. I had DHE treatment and would never opt to do this again. I could not find any research on the long term side effects of this, but know I now have mild brain ischemia and hyperdensities in my brain matter have increased following the tx. Whether it caused this or not...no one seems to know! The treatment itself was absolute torture, literally... that is why my neurologist said to me "Now I don't want your running out of here ( inpatient hospital) once we started, if I could have physically moved my legsI would have!!!
My first treatment for DHE was a 3 + day hospital stay and it worked tremoundously. It cut down on my migraines dramatically and I felt like a new person for several months. The treatment was difficult. Eveytime I recvied the DHE I was extremely nauseated. They gave me nausea medicine but did not help that much. Becaause I was desperate, I struggled through the whole series and was happy that I did. It was worth the adverse side effects of the treatment.
After I started having numerous migraines again, I tried the nasal spray, but it did not seem to help. You can only have the treatment ever 6 months.
My second experience was not so great. I had a different doctor and he added another drug to the DHE (Ican't remember the name) and my heart rate went up to 175 and I thought I was having a heart attack. They cut the treatment short after this and I did not really receive any improvement..
I was back with my previous doctor and I did not tell her about my heart rate experience so she agreed to administer DHE again. My heart rate went down to 49 and they supended the treament.. I was already in the hospital for trying to commit sucide, so I do not feel that the heart rate issue was because of the DHE.. Because I only received for 1 day, it did not work
Now my doctor will not give me DHE because of the heart rate issue. I would take it again if I was able.
I hope this helps
I completed the in patient DHE treatment. It was a relief to finally try and see what that would do. The treatment was very tolerable and I felt quite good while I was there.
Unfortunately one month later, I don't feel the frequency has changed much.
It is all such a blur and the variety of symptoms I experience are so hard to explain.
I am sharing this not to discourage anyone from trying this treatment but because it was worth a try. I was very hopeful but unfortunately I think I was in the ' non responder group'
It was strange to feel reasonably well while I was there and I was treated very well at UCSF. I was very happy with the care but alas not a magic bullet at all.
I am now going to try a new preventive and try not to fall into a depressed state.
I wish anyone who decides to try this the best...
K
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Hi there,
I haven't had either proceedure done, but hopefully someone will be in shortly to let you know how they made out.
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