I have had daily intractable MAV symptoms for over four months now. Because tricyclics (amitriptyline) and anticonvulsants (topiramate - Topamax) don’t seem to be working so far, the doctor is once again trying to kill the migraine with a five-day course of prednisone (the first time a few months ago at 60 mg per day for five days failed to work, so this time we’re upping it to 100 mg per day for five days). Has anyone else had success in killing or substantially reducing the dizziness/throbbing/pressure of MAV over the long term (or even medium term) with a course of steriods like prednisone?
Also, the doctor mentioned that another possible course of action is to be administered dihydroergotamine (DHE) via IV in a hospital setting over a three day period in a similar attempt to kill the migraine. Searching on other forums relating to more conventional migraine, I see success stories, and the usual horror stories, and I don’t much like the idea of undergoing something so strong and potentially dangerous that I must be monitored overnight in a hospital during treatment! Are there any MAV sufferers who have had success with an intravenous DHE course? It sounds frightening, frankly, but one is at the end of one’s rope.
Please pardon me for filing this posting on the general discussion board. It didn’t seem to belong in any of the other conventional medical categories, nor in the “alternative” category with the herbs and such.
How long have you been on the ami and topirimate? I took a 5-day prednisone dose for something unrelated and it did nothing for my migraine/dizziness. I was hoping it would, but no luck.
Hospitalization for treatment at four months of symptoms does seem a bit aggressive when there are other med choices to try first. And will this really do much more than stop a migraine headache but the dizziness will continue?
If you have MAV, you need to focus on finding a good preventative medicine rather than an abortive, which it seems that your doctor is focusing on with the predisone efforts. That may sound appealing if you’re in an acute attack, but then what? It will come back.
I would encourage you to work toward finding a medicine that will help you calm your migraine brain on a daily basis so you can gain long-term control over this condition.
Anne, thanks for replying. I’ve been in amitriptyline for many years at a super low dose for insomnia. We ramped it up to 75 mg for migraine, but it did nothing, so we gave up and ramped it back down to 10 mg for insomnia. We switched to Topamax instead to see if it would be more effective, and I titrated up to 100 mg starting in late February. I went up super slowly because of some unpleasant side effects, going 12.5 mg at a time every five days or so, only reaching the full 100 mg last weekend. We’re giving the Topamax more time, of course, to see if it calms the migraine symptoms, but so far no dice.
The discussion about the intravenous DHE was more conceptual, and not something that was being proposed in the near term. I was asking the doctor about future options, should all of this fail. However, different neurologists have agreed with this course of pursuing both prophylaxis drugs such as the amitriptyline and topamax, as well as abortive drugs such as the prednisone. They have indicated that my migraine is not episodic, but intractable, so an abortive approach is appropriate. At this point, if they recommend that I wear a silly hat around the house in order to ward off evil spirits, I’m open to it. I’m really quite over feeling like that during every waking moment. On tradition migraine forums (fora?), I read stories of people who had migraines that lasted for months and which were finally killed after an intravenous course of DHE, never to return. Yes, please.
So maybe I misunderstood–you also have had migraine headache pain all this time? In that case I’d be chasing an abortive too! That is miserable.
Anne, fortunately, no migraine pain, but I do have bad intermittent throbbing. It’s hard to describe to other people what it is like to have throbbing, but no real pain (although I do get a modest amount of pain when things are at their worst).
about one year into this, my doc hospitalized me and had IV DHE for MAV. didn’t help, and week later I had severe rebound migraine headaches. wouldn’t recommend this for MAV. The more I thought about, if it was truly to help it would come back anyway, unless you are on a proper preventative that works.
Thanks for the info on your experience, Lisa. By the way, have you found the solution to your MAV?
Hey Nicolas, I understand what you mean by throbbing but no pain. I come to realize that most of the time its in sync with my
heartrate and has something to do with anxiety. Just an FYI another lady is doing well with topamax and highly recommends it.
She got to her higher dose, I think 100…? And it took 3 months to show relief, but it did. There is also 2 other men on here that
got well on topamax. One was 50mg and the other 75mg, im pretty sure. They are under success stories.
As far as the predinose, I heard that a 6-day dosepak of Medrol works. I used to take it for other things and it did wonders.
I tried to take it again a few months ago, but got dizzy. Not sure if it was a coincidence or not… probably was though.
Its good you tolerate it well. I only got to 25mg. When I went to 37.5 I just couldn’t take the dizziness. Later when I got off, I realized
it was the topamax that was wierding me out at night. Not the mav. Much better off of it.
I see that you are active on here. I have to ask the bigger question, and perhaps this is more sensitive, in how one manages to live with this awful disease long term. I’m now on a cane, and off work, but perhaps it’s a particularly bad spell. I look at the future with confusion and uncertainty. Perhaps this isn’t the place for a public discussion, but you must be a strong person and I’m eager to learn anything from you that I can.
Typing on phone so hard to write too much. But really not that strong. Only choice is to live with this or kill myself, and even though I don’t want to live I wouldn’t kill myself, so have zero choice in the matter but to live like this. I have full- time help for my children. I would never ever have been able to have children otherwise, so am lucky I could have the help. I was (am) a clinical psychologist and can’t work, which is heartbreaking. I could only walk holding on to something so use shopping cart if must go stores, stroller, or walker. I try keep brave face for kids all day - spend
Much time in bed - but I’m dying inside. I cry on and off entire night after they sleep. Wish I never woke up again in the morning, but going back to what I wrote earlier I have no choice. I wish I had something more deep to say, but this truly stinks and I just hope beyond hope I get well again one day. I do have a very supportive spouse which helps but doesn’t remove the physical or mental suffering of this horrid illness. I’m honestly very depressed, angry that this happened, and scared to death that I might not get better but just can’t give up trying meds. Wish I had something more helpful to say. You ask a good question.
Lisa, thanks for the honest and heartfelt reply. I’m not going to give you the empty platitudes that you have heard a million times, like “keep up hope” and “keep your chin up, this will all go away, I’m certain.” I’ve been hearing that now, and it doesn’t really help. It hurts to hear your story, but it also provides a weird kind of solace to know someone else has experienced the same thing, although you are much, much farther down the road than I am on this journey of misery. Thank you for sharing your experience on here, as you are helping others navigate treatment, relationships with their doctors, and just simply coping.
I appreciate that. Thanks very much!