Jump to content
CrazyBoards.org

hemiplegic migraines now, arrrrgh!


Recommended Posts

A few years back I went through a round of icepicks and migraines, and the docs had me on topamax, etc., none of which really worked and drove me nuts. I tapered off everything and just stopped seeing them. As usual, nothing worked and they were just shooting anything down my gullet that they could think of. I felt like a test subject.

Well, lately I've had a new surprise. I've had daily migraines 9-12 hours long since before Thanksgiving, accompanied by the usual facial and scalp numbness, but also single side weakness and very intense tinnitus which is driving me batty. I also had extreme dizziness on rising, even slowly, accompanied by near total deafness on one side, then both sides, which lasted up to 10 minutes. I had one particularly bad attack that sent me to the ER, where they did an MRI, two CAT scans and other tests. Diagnosis: hemiplegic migraines, with evidence of a small stroke sometime in the past. Great, now I won't know if I'm having a real stroke in the future.

The doc I am seeing now said I was a "rare case," with symptoms that were unusual and uncommon but not unexpected. She decreased my blood pressure medicine, since the ER said my heart rate was too low. That helped with the dizziness and deafness, so I guess I was being overdosed on calcium channel blockers. I was also put on depakote as a prophylactic, increasing dosage every week till I'm near the max now, with no effect (as usual, hmmm). I was also given some abortives, none of which worked. The only abortive that seems to help is an IM shot which I can only get in a doctor's office, not practical for everyday use at home.

I still feel like a damn guinea pig. I know we're all different and so the treatment is going to be different for all of us. I just hope someday they find something that actually works on me. This daily problem is keeping me from working now, I have no income and things are getting pretty tight, so I hope for a resolution soon.

I don't know what I'm asking here. Maybe nothing. Maybe I'm just bitching about how rotten things are. Or seeing if anyone else is in the same boat as me, and has been helped by something or someone that actually worked. We're all in this damn leaky boat together, I guess, might as well enjoy the ride as best as we can.

Link to comment
Share on other sites

thorjasen, i hope things improve for you with the new med. migraines are just AWFUL and ive recently had a huge episode of multiple and just terrible pain. I also have no income and it is tough, so i join you in this leaky boat. I agree with you on the guinea pig thing too... I feel like no one knows what to do sometimes.

I have been getting maxolon or stemetil IM shots at the doctors which are... not practical as you said. And the abortives don't work well for me either. I'm going back to review my options soon. I also had really intense dizziness and sweating and fainting when standing up.

good luck i am hoping mine get sorted and yours too!

berry

Link to comment
Share on other sites

good luck i am hoping mine get sorted and yours too!

Hi Berry, thanks.

FYI my doc had me on a three day regimen of magnesium infusions back in December. That didn't work for me but she says it does work for some folks, so you might want to ask your doc about that one. Maybe it'll help you.

What I've tried over the decades reads like a laundry list: advil and other OTCs, imitrex, sumatriptan, zomig, amerge, relpax, maxalt, midrin, atenolol, propranalol, verapamil, neurontin, topamax, depakote (on this one now), elavil, pamelor, norpramin, hydrocodone and oxycodone and the occasional shot of one narco or another in the ER, phenergan, compazine, toradol and what else I just can't remember right now.

Toradol IM works as an abortive for me most of the time, sometimes with some anti-nausea like compazine, but as I said before, it's not workable for home use.

I haven't tried maxolon for migraines, though I have used it for IBS under the brand name reglan, but I'll ask my doc about it next time I see her.

Link to comment
Share on other sites

well I hope that even with that exhaustive list of meds you've tried, you can find one that does work well. There is still research into how migraines actually occur and why and how they progress, I think (and hope) we'll see more treatments coming out or more suggestions of things to try.

You can get antiemetics in tablet or suppository form, those can be taken at home - perhaps you could see if your doctor could help with something like that? I'm trying to decide whether to go back to propranolol, or try topamax or another drug im not sure which.

I have talked to an emergency intensive care paramedic, and he was telling me that more current research has suggested that IV fluids and an antiemetic like maxolon could solve the migraine, but that, I think, is even more tricky to get.

quite honestly just thinking about how to deal with migraines makes my head hurt too.

berry

Link to comment
Share on other sites

I read that pure oxygen can stop migraine. In fact, they keep a tank of it on the sidelines for Terrell Owens, because he gets a lot of migraines. I don't think he can just take a few deep breaths, and jump back into play, but he is back in fairly quickly.

I forgot I had even taken some of those meds! I also have heard the theory that reglan helps migraine is dicey. And no neurologist has ever prescribed hyrdrocodone or fioricet for me, either (waaaah). But I haven't tried Elavil.

I also tried Sansert, which has been taken off the market as too dangerous. Awesome.

And my husband cannot drive (epilepsy), so those occasional ER visits are out of the question for me. ;)

Link to comment
Share on other sites

Yeah, oxygen didn't do diddly for me.

One time, an ER doc gave me one shot of benedryl all by itself and asked me if it worked. I'm not smart enough to figure out his thought process on that one, but it sure as hell didn't work either.

Link to comment
Share on other sites

Elavil (Tricyclic Antidepressant) worked wonders for me with my post car accident migraines when I was doing nothing but laying on the couch. There is one beta blocker that is particularly known for helping migraines. One of our members a couple years ago was at the end of her rope and it worked for her.

a.m.

Link to comment
Share on other sites

  • 2 months later...

One of our members a couple years ago was at the end of her rope and it worked for her.

I know it's been a few years and I know how my memory fails me, but is there any chance you might remember what the name of this beta blocker was that worked for her? Thanks.

Link to comment
Share on other sites

thorjansen, propranolol (inderal) usually is the choice for migraines. other beta blockers are atenolol, pindolol, etc.. they all have olol at the end. I know i took inderal and so did others on this board.

Link to comment
Share on other sites

thorjansen, propranolol (inderal) usually is the choice for migraines. other beta blockers are atenolol, pindolol, etc.. they all have olol at the end. I know i took inderal and so did others on this board.

OK, thanks, I have tried these and none work. The neurologist's got me on amlodipine (a calcium channel blocker) now. I've moved up weekly from 2.5mg to 7.5mg per day yesterday, and in another two weeks I'll be at 10mg/day, which is the max dose. Hasn't worked for me yet. Bugger all, this is one persnickety daily migraine problem I seem to be having. Hope something works soon or I may truly have to cut off my head and carry it 'round in a box instead. I wish they'd let me take Torodol IM home, it works as an abortive at least, then I'd at least have a bit of ease while still trying to find a preventative that works.

Link to comment
Share on other sites

I can relate to some degree, and I feel your pain. It takes tons to get a migraine thats there for me to go away... they can last days of little to no sleep.... to go away long enough for me to get a few hours and come back now that I'm not on a preventative. My preventatives were making me fall and pass out and almost break bones... and now I don't know what to do. Imitrex and Maxalt do not work. Toradol IV doesn't work. I had to go in a few nights ago and get zofran, composine, benadryl and morphine for a hemiplegic. It SUCKS. If you ever want to rant or rave, send me a pm! I will totally be sympathetic. They are awful. And I think I'm getting another one...

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

×
×
  • Create New...