I'm looking for info and support as a caregiver. My daughter, age 38, has had JRA since age three, lost her sight because of JRA at age 8 and had both eyes removed at age ten. She's fiercely independent (owns her own home, fosters and socializes feral kittens, and tries to do everything for herself -- except drive and grocery shop, of course!!), but has had severe episodes of right-side hemiplegia a number of times since 1995. Just this past week, a new headache specialist suggests that her diagnosis MIGHT be hemiplegic migraine (of which we've NEVER heard before) and is starting her on Topamax -- low dose, gradually increasing. However, she spent from June 8th until July 11th of this year in hospital, and still has minimal use of the right side and an unremitting headache. The headache guy wants her to discontinue ALL use of Fioricet for at least two weeks (thinking medication overuse may be causing rebound headache), but she's always before been able to stop the meds immediately when the headache abates, and she honestly doesn't know how she'll get through the next few days without SOME headache relief -- which Topamax apparently is not designed to provide. Any suggestions??
Hello, and welcome to MyMigraineConnection.com!
You've come to the right place for both information and support. Once you've read through the information here, I hope you make your way over to the discussion forum where you can meet other caregivers and Migraineurs.
First, let's talk about Medication Overuse Headache - MOH, formerly called rebound, then move on to Familial Hemiplegic Migraine, ok?
MOH occurs when we take certain presecription and/or over the counter (OTC) medications more than two to three days a week. Fioicet is just one of the medications that can cause MOH. If stopped abruptly may cause seizure activity because it is a butalbital compound -containing aspirin or acetaminophen, butalbital, and caffeine. Does your daughter take fioicet every day? If so she may need a tapered withdrawal or supervised detoxification to make coming off fioicet easier. While we have MOH, no Migraine preventive medication on earth will work, keeping us in pain til we stop the MOH cycle. This article Medication Overuse Headache - When the Remedy Backfires will provide with the details.
Familial Hemiplegic Migraine (FHM) is a rare form of Migrain disease, and the only type of Migraine with true motor weakness as one of its symptoms. Motor weakness with FHM is usually fully reversable after the attack. Has your daughter had a complete neurologic work up? FHM is hard to diagnose because its symptoms are similar to other conditions like stroke, epilepsy and other conditions. Hemiplegic Migraine - The Basics and other interesting article is: Hemiplegic Migraine - Genetic Testing May Be Helpful
Does your daugther take other medication for the jra? Topamax may not be the best Migraine prevention drug out there, but it is the one doctors and patients here the most about because it is heavily marketed to them. We have a complete topamax profile you can find HERE.
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.
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Welcome again,
Nancy Bonk
MyMigraineConnection.com Expert