I was on Topamax a few years ago, and it worked for me also. Didnt quite take all the pain away, but really made life a bit better. I had to finally go off of it because it was causing my hair to fall out. I guess I could have kept on taking it, but thought if it is doing that, what else is it doing to my body.

I also had problems with my stomach on that med. I found if I ate something mild an hour or so before taking it, the acid reflux wasnt so bad. That along with a prescribed aciphex once a day pretty much kept the stomach calmed down. I did love losing the 40 lbs I needed to lose LOL!!

My wife has RSD and has been on Topamax for a couple years, it has really helped. She has been taking prilosec otc (generic prescription) for about the same time and doesn't have that severe of issues.

CLO

I have been on and off topamax for years for RSD. I have been on 300 mg now for over a year this time. This is the highest dose I have been on, and I am having the best symptom control. I would really fight if they want me to go off it at this point!

I don't have any digestive issues, and no problems with ice cream or with sugar or sweets.

I think everyone is an individual, and RSD and the meds we take affect us differently.

At this point, I'm not sure my stomach issues have had anything to do with Topamax since I first started it. I've gone up and down on the dose so many times now and it really doesn't seem to make a difference, I've been on 300mg steadily now for four months. I think its more likely just coincidence when I had all the problems the first time. I think it's more likely that my RSD has been spreading internally over the past six months due to a number of other symptoms I've had. The only part there that doesn't make sense is that all of my Ketamine treatments should have stopped it but what do I know? I guess I'll have to suck it up and get the colonoscopy done to be sure. I'm just scared to death of them perforating or tearing anything and causing RSD to spread then.

My doctor advised against a colonoscopy. Since I had severe abdominal pain, he ordered a virtual colonoscopy. I still had to do the prep but the actual procedure was quick easy, and no needle sticks. It is quite pricy but my insurance paid for it since my doctor was concerned about CRPS spread. Hope this helps!

I'm glad to find this thread. My doctor has recently suggested that we try adding in Topomax to my regimen. I already have a very sensitive system and have a hard enough time eating. Thank you for all your posts.

Wow, a lot of good information here. I have been on Topamax for about 5 months and well, I have not lost any weight (which saddens me greatly) but it does seem to have some sort of affect on my stomach, nothing major or unmanagable. It usually passes after a couple hrs. HOWEVER, the other day I was with my nieces/nephews @ a park & it was hot, we kept drinking these frozen lemonade drinks they were selling.....well for the next 2 days I thought I was going to go to the hospital. I had such intense pain in my lower right abdominal area. I am not used to drinking things with sugar, I drink sugar free or diet.

I did also have a period where I had to lower my dose from 150 mg 2x a day to 100 mg 2x a day..I broke out with these weird red bumps in certain spots on my body, mostly places where we have joint creases...I itched 24/7, but even then I did not want to stop the medicine. I learned that CRPS/RSD sometimes causes migraines for people and I am one of them. Since being on Topamax, i have not had one!!!

So, after all this for 8 months now on Topamax, I go through with a nightmarish colonoscopy today with an anesthesiologist who couldn't bother to hit me with a little versed or fentanyl before pushing profonol which I'm super sensitive.
I was wide awake for over two minutes as he was pushing the profonol and I'm lying there crying, trying tonuse my guided imagery till I finally gave up, sat up, screaming my head off, grabbed the anesthesiologist and cursed my head off while he kept pushing the profonol. Finally collapsed on the table again and then sat right back up crying and screaming again until I finally dropped for good. Now, I'm only a 125 lbs and 5'7", it shouldn't be that hard to get me out. I then came out after, crying and with stomach pain and a migraine. Apparently pain isn't treated in an endoscopy suite. FYI, bring your own meds.

Anyway, all of this to find out there's absolutely nothing wrong with my stomach that the Dr can see but he does believe something is causing a lot of pain, just doesn't know what.

So I guess I'm back to square 1 with tapering off the Topomax which leaves me with no nerve med.

I really do hope this helps someone else if they get these symptoms. Don't be as stubborn as me. Avoid 3 trips to the hospital and a whole lot of pain and find a new med but if it works for you, congratulations.

Dawn,

Truly sorry to hear you had such a bad experience. I hope you are feeling better today. Try and just rest today. I hope you feel better.

gabbycakes

When I have a problem with an oral medication my stomach refuses to tolerate, I take this oral medication with a medication from the PPI (Proton Pump Inhibitor) family. Right now, I take Ogastro (lansoprazole) in a dosage chosen by my primary care doctor according to the effects I get and to my needs. I particularly like Ogastro because it is a very small, flat, strawberry flavored tablet, which I put under or over my tongue until it melts. Right after, I take the oral medication my stomach does not usually accept. The problem is gone! Of course, what works for one person might not work for another person. My gastro-enterologist (gastro-intestinal tract specialist) told me never to take any oral medications my stomach does not tolerate with medications in liquid form that coat the stomach walls because this will prevent the absorption of the oral medication. This is not something you want since you need your oral medication (here: Topamax) to work. Just my two cents.