I have been put on this "IV Treatment of Refractory Migraines" and the article does not mention one important thing. I have been taken OFF ALL triptans and ALL analgesics. This is important - NO PAIN RELIEF! I cannot take any at all while on this regiment for the six to eight weeks my neurologist requires I maintain it to recover from what he considers too much pain medication usage. He insists that I am having rebound headaches, despite my knowing the difference between rebounds and true migraines. Gee, wouldn't I know my body and brain a little better than a man who has never experienced a migraine in his life?
And excuse me, but he considers my taking one or two Percocets in 24 hrs too much? I only take what I dare to take the edge off and still function. I've already lost my most recent job, due to the fact I was taken off work 8 months ago for chronic migraines. I am not allowed to do anything but hold a cold pack to a incapacitating migrained head, crawl into a very noisy outpatient facility (which also has major construction going on right outside the front doors), and sit in a noisy main room for nearly two hours, and not get any real relief other than the exhausted drowsiness from the Compazine. Oh yes, I can get some vague relief from the DHE-45, but only three times a week. I am in week four of this torture, and have had no real relief at all. He boasts that it won't be so bad, but you all can imagine what is really going on in my thoughts.
I won't list them, but I am on a cocktail of preventatives, including anti-depressant, anti-seizure, beta-blocker, anti-inflammatory, and a couple other things not associated with migraine, and some herbal/vitamin supplements. I have had migraines since age seven or eight, but was not diagnosed until age 35. I am 50 this year, and they have only been getting worse for the last year and half. Both my parents, in their mid-70's, have migraine and still experience them more than once monthly. All my siblings have them but rarely and not as severly as I do. I'm glad for them.
I have an appointment with my regular doctor this week. I'm praying she'll save me, instead of sending me back to him.
Hello, and welcome to MyMigraineConnection.com!
I'm really sorry you are having such a rough time. Being in chronic pain is exhausting and debilitating, I know from experience.
Unfortunately, any Migraine prevention medication won't work if we are in a rebound, (Medication Overuse Headache) cycle. That mean taking certain prescription and OTC medications more than 2-3 days a week. So, let's say someone takes percocet every day, to stop the pain, this could lead to Medication Overuse Headache, and all the Migraine medicine in the world won't work. It absolutley stinks and the only way to stop MOH is to stop the offending medication, like percocet, cold turkey. BUT, there are ways to help ease the withdrawal. If your neurologist won't help with that, please talk to your PCP. This article will explain MOH (forgive me if I've already given it to you) Medication Overuse Headache - When the Remedy Backfires.
Seeing as you are having such a hard time, it may be a good idea to see a Migraine specialist? Neurologists may be fine doctors, but are not experts in any one area because they treat so many different conditions. Migraine specialists devote their entire practice to Migraine disease and headache disorders. We have a patient recommended list you can see HERE. Depending where you are in the pacific NW we have a few doctors in OR, WA, and ID.
Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.
We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. We hope to see you there. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.
Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information and a spot to sign up for our free newsletter on the main page of our site, http://www.MyMigraineConnection.com.
If you have any questions, please feel free to post them to the forum or send me a message through my profile.
Welcome again,
Nancy BonkMyMigraineConnection.com Expert
Hi, and thanks for the response.
I have only seen this headache specialist/neurologist once on a referral from my regular doctor. I don't know if he is on your list in my area or not, I'll have to look. I was very migrained that day and he had to keep refocusing me when asking me questions to get either the answer he wanted or to keep me from babbling, I'm not sure which.
He didn't seem to hear me when I said I knew the difference between MOH or rebound headaches and the migraines, they are VERY specifically different inside my head. And just went on to say I had to this "IV" regiment, that this was his cure-all and he'd had such success, blah blah blah. And for me to go back on amitriptaline, though I've been on and off of that on several dosage levels without change, and to re-up the dosage of topomax (although I cannot take more than 50mg without eye problems, my eyes actually shake so blurs my vision and makes me dizzy, so I can't read or drive or anything).
I saw my regular doctor today and told her how frustrated I am with the "IV" treatments. Not only does the medication make me extremely restless, I get ill the entire day after, and have little pain relief if any. I've been on it for a month solid and have had more days in bed than I have for months now, even when I was allowed only 20 percocet a month. But I know the specialist wants me to do this for 6-8 weeks. Something else Teri's article doesn't mention. Not to mention how much the co-pay is going to be for this 2-2.5hr outpatient treatment. Even the nurses there who see me are concerned I'm there two or three times a week without relief.
But I said this on the forum. sorry