I saw in a reply to another post about someone getting migraines with RSD. I have had migraines in the past, but only like 1 every 3-5 months. I went through a major cluster of migraines back in November (6 migraines in 12 days),my poor husband. We were out of town when the 1st of the 6 hit and I was shaking, vomiting, rocking on the side of the bed at 4 AM, I made him get up and drive me home (1 1/2 hours away). When I called my PCP after the 3rd one, I finally went in to see her and she put me on Imitrex (sp). I now wonder if this is part of RSP/CRPS? I have been getting them every few weeks since the major cluster. Some are really bad with the whole chills, vomiting and day long hang over feeling after, but some are just enough to put me down for the count.

Is this a common thing with RSD/CRPS? has anybody gone through the cycle that I have experienced? I would have never put it together had I not just read some one's reply on here (to another post)

Have you tried topamax? It has helped me with my overall RSD symptoms more than other meds, even more than pain meds. I cannot tolerate neurontin or lyrica. But, I have to take topomax at higher levels to help headaches. I take 400 mgs a day. I used to have migraines years ago. They affected me intestinally mostly...severe vomiting and diarrhea.. The headaches and aura were bad but tolerable. My RSD is severe in my upper back, neck, back of my head and side of my face. I had a 7 on scale of 10 headache from it for the last 3 years 24/7/365. Nothing took care of it. Nothing. When the neurologist increased my topamax from 200 to 400 a couple months ago, the headache dropped to a 2 or 3. There are times now I don't even notice it.

Topamax has side effects. It can mess with your use of words. You have to drink lots of water to avoid kidney problems. It causes hair loss in some. I no longer work, so the word issue does not matter. For me, it is a great med. Far less problems than I had on oxy or methadone. Every med has some problem or other.

How weird that you mention Topamax! I was just reading something on line about it this morning. No, I have not tried it, never even heard of it before this morning. I had reactions to Lyrica also. I am trying neurontin for the 2nd time and i only take 300 mg once @ bedtime and I am so exhausted the next day...I cannot stand to take it. I also take 120 mg of Cymbalta which is useless. I do not take narcotics because i am super sensitive to a lot of med's and don't like the weird feelings they give me. Who prescribes topamax for you? I guess i would have to ask my pain Dr.? my hand surgeon is the one who put me on Cymbalta....who knows!

I read that topamax has a high rate of weight loss? That wouldn't be a problem for me...as i could use some serious loss! I understand that everybody has different side effects, if any. So trial & error is the best way to see. If it helps with RSD/CRPS and migraines, that beats taking 10 different medication's.

My family doc had me on 100 mg. Then increased to 150.

I got peripheral neuropathy last spring and went to a different neurologist. I like him. He has gradually increased me to 400. When I got to that level, it began to help.

I used to go to a different neuro a few years ago for blocks and Botox injections. He had me on 300.

I have been on and off it for years.

I have not had the weight loss. Too bad, cause I could use it! This neuro says at 400, I may see it. I am actively trying to loose and am seeing some results, so maybe it is helping the process.

I know it makes soda taste weird, but you get used to it.

I take 200 mg Topamax a day for migraine control. My RSD is in my shoulder, leg, neck and up the back of my head. Once I tried to taper off of it, and my migraines came slamming back. So I went back on it. I also discovered that my migraines were very hormonally linked. So I went on the pill. And that has helped a whole lot. Now I generally only get really bad head pain when I use my arms too much, or after my ketamine infusions. I can usually control the bad headaches with Frova, a triptan med similar to Imitrex. On a daily basis I take a lot of Fiorcet for mild head pain, which I have ALL the time.

Anyone on triptans has to careful of their hearts - there can be some scary side effects of these meds. because I take Clonodine, a beta blocker, I am protected. But you should read the paperwork that comes with them just to be sure you understand exactly how they work and the risks are.

Topamax doesn't put weight on like the other anti-seizure meds. When I was on Neurontin I gained 10 pounds in just a few weeks. It was awful.... I can't say that I've lost weight on it, either, I lost a lot of weight when I was on the opiods.

Good luck, Sandy

My pain is similar to Sandi's. I get Ketamine treatments which help alot, take 200 mg Topamax and just had my first Botox injection for the migraines 2 weeks ago.

I did have deep cervical injections before to try to stop them but they were hit or miss. My original injury was to my neck, it then spread throughout my left side, down to my toes.

So far, the Botox seems to be working much better then any of the other injections I've had although I am having some side effects, they're really very minor and worth it for the relief it's given me. I'm not even sure I need the Topamax for it right now but considering my entire left side is affected, my Dr and I figure I should be on some nerve medication and this one seems to suit me best.

Good luck,
Dawn

I forgot to mention one neuro tried an occipital block to stop my constant headache. All it did was make me feel like I still had my head ache, but had also been hit in the back of the head with a ball bat for about 3 weeks.

Have had migraines for several years. Used to take preventative & acute attack meds. Preventative meds were Topamax & Depakote. Also used to take Imitrex, but take Treximet now & it works even better. About 7 years ago, I had a migraine that lasted the ENTIRE summer....got a little better & worse but it never went away for months. THey admitted me to hospital & gave me i.v. meds that made me really sick.

Oh wow, that does not sound like any fun, the whole summer?! Yikes. I do take imitrex (just as of like November/December) when the first cluster hit. That was scary enough. I really think I need a preventative med, these keep happening...feeling one coming on now.....this stinks big time.

Hi, I take topomax and fioricet for my migrains and it works. The second I feel a headache/migraine coming on, this is with usiing topomax, I take 2 fiorocet and I am fine.
God Bless, Melanie/yelocateyes