Help Needed to Overcome Transformed Migraine
The short version:
If I attempt to stop "transformed migraine" by discontinuing triptan and caffeine use, what do I do if it turns into "status migrainous?" Should I take another triptan at that point or wait it out longer? Any other suggestions?
The detailed version:
At this point, I fit the "transformed migraine" mold. I've been taking way too many triptans (4 in 5 days). I'm afraid that if I stop taking the triptans, as is suggested by Teri's article on transformed migraine, that I'll turn into a status migrainous case. What does one do at that point? I usually get about 3 migraines a week, even when I've completely cut out triptans and caffeine months at a time. I haven't found a preventative med which works for me yet, but I have and will continue to try them out!
Please refrain from "talk to your doctor" answers...they're not helpful. I haven't found a local doctor yet who knows more about migraines than I already do (I'm sure many of you can relate!).
Hi LiSaV,
Taking Migraine abortive meds such as triptans or any kind of pain med more than two days a week, a big part of your problem may well be medication overuse headache (MOH), aka rebound. See Medication Overuse Headache - When the Remedy Backfires for more information on this. If you're in an MOH situation, nothing you take is going work, neither prescription nor "natural" medications nor over-the-counter. If that's the case, you need to work with your doctor to stop the medications causing the problem. Just what you didn't want to hear, I'm sorry.
Medication overuse has been shown to be a factor in 80% of cases of transformed Migraine. Stopping the medication overuse is key to stopping the transformed Migraine. You can read more about this in Stopping Medication Overuse Can Halt Transformed Migraine.
Anyone who has three or more Migraines a month needs to be talking with their doctor about prevention. There's growing evidence that Migraine is a progressive brain disease. A recent study showed that Migraines can cause brain damage, and that people with three or more Migraines a month are more susceptible to this damage. For more information, see Is Migraine a Progressive Brain Disease? and Yes, Migraines Can Cause Brain Damage.
My last suggestion is to see a "true" Migraine specialist. Clearly your doctor isn't helping you, it may well be time to consult a Migraine and headache specialist. It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.
Let me know what you think, ok?
Nancy
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LiSaV,
I'm not sure what you want or expect us to say when the best answer IS "discuss this with your doctor," but you tell us to "refrain from" such answers.
The reality is that only a doctor who has reviewed your medical history, discussed your symptoms with you, and examined you in person can adequately and safely answer this question.
Yes! I certainly can relate to not having a local doctor who knows more about Migraines than I do. That's why I either drive eight hours to Philadelphia or fly to Dallas when I need to see a doctor about my Migraines.
I can absolutely empathize with you. At one point, I was in bed all day an average of five days a week with debilitating Migraines. I finally got angry enough to take charge of my health care and went to a Migraine specialist in Philadelphia. Now, I often go two to three MONTHS between Migraines. If you want to read more about my own battle against Migraine disease, take a look at Excerpt 2 - "Living Well With Migraine Disease and Headaches".
So, the best suggestion I can give you is the final one that Nancy gave you — find a Migraine specialist to help you with managing your Migraines and restoring the quality of life you deserve.
Good luck,
Teri
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Hi All,
Thank you for your responses. After searching through this site I came across an interesting suggestion: steroids to help wean off of triptans.
So I emailed my doctor with my situation of taking too many triptans, and he agreed to try out steroids to help taper off the triptans. He gave me 40 mg of Prednisone for the first day, 35 mg for day two, 30 mg for day three, etc.
It worked great! I didn't have a migraine for eight days (=miracle for me)! But...as soon as I was finished with the Predinsone, my migraines came back at their regular frequency (3-4x/week). Bummer.
Was eight days not enough to break any cycle I could have been in? Do I simply get migraines this often, and maybe they are not MOH? I've always had a very difficult time telling the difference between the two...they all feel like a migraine to me even after reading the articles on this site and Teri's book. Isn't it possible to simply be a person who needs more than two triptans a week because they truly do get more than two migraines a week?
To answer other questions posed to me: I don't know of any migraine specialists in my area (I've searched high and low!), nor could I afford one (I'm a poor graduate student with lousy insurance). I've located an affordable doctor who knows a little bit about migraines and is willing to work on meds with me. He sent me to a "specialist" at one point, but I'm still paying off that bill...
Sorry if that sounds like rambling...I mostly just wanted to share my experience with Prednisone. Hope it helps someone!
~LiSaV