Hi all,

Thanks to a friend here, I finally found a med that my Dr prescribed that took away pain in the left side of my neck, shoulder and head (including migraines) that I've had every day of my life for the past 7 years.

Only problem is, even after lowering to the dose to 100 which does still seem to to work, I have constant stomach cramps. Out of fear of an ulcer I saw a GI Dr who did say it was definitely the Topamax. That was after an ER visit when I was doubled over in pain and they did a cat scan to rule out other stomach disorders.

I know it sounds crazy, but the thought of giving this med up and going back to daily migraines kills me. I've tried every other nerve med plus my ketamine infusions but nothing has taken that pain away like Topamax.

Has anyone else had this issue and can they suggest any way of helping the stomach tolerate it better? I currently take 50 mg at lunch and 50 mg at bedtime. I also take tons of prevacid and caltrate to try to buffer it. I just don't know what else to do.

Thanks for reading and gentle hugs to all,
Dawn

Dawn, I'm sorry this is happening to you..
I took Topomax long time ago.
Say, 15 years?
And, I was taken off suddenly, because it was no longer accepted for long term use.
I don't know if it they changed the formulation, (that's very possible), but I have migraines like that, and it didn't really do any thing for me.

Migraines are weird animals. Do you have Thoracic Outlet syndrome? TOS.
I do.

I only mention this for your safety. I think it is an NSAID, and they can be very nasty on the tummy. Try some Maalox, or something like that when you take it, or definitely take it with food!

Be Well!

Pete

Hi Pete,

As far as I know, I don't have TOS. My problems all started in the cervical area, mostly occipital and have spread down to my toes.

Topamax is actually an anti-convulsant. I've switched out the Neurontin which didn't seem to be helping me at all (nor did Lyrical or Cymbalta ) for this.

Ketamine has made a huge difference in my pain levels but I still had that original pain lingering and this was the first med that actually acted on it so the though of giving it up scares me to death. At the same time, I lost 10 pounds in 8 days and I'm not a big girl to begin with.

I'm just praying someone has found a way around the nasty stomach pains it can cause. I took take tons of pepto-bismol, prevacid, caltrate, etc.

Thanks!
Dawn

Hi Dawn,

So sorry about your stomach. I take 100 mg of Topamax in the morning and 100 mg at night. I live on Tums, I especially like the tropical flavored variety. I also have a script for Zofran, but I don't think it does much for my every day stomach pain. I tend to just take that when I go for my ketamine infusions.

My stomach hurts all the time, too. Now I have a clue as to perhaps why. I thought it was because of nerves due to my job. Everything I eat and drink gives me indigestion. It stinks.

If you find a solution, please let me know. I am also thin, I had my BMI done last week it was 23.9. So I am not underweight, but almost. But I also walk a lot, so its not just the Topamax that keeps me at this weight.

Love and peace, Sandy

P.S. - when I try to go off Topamax my migraines come back also. I also went on the pill because I noticed that my migraines seemed to be hormonally related.

Hi Sandy,

It was actually because of some of what you said about Topamax that I tried it and really, it has been a lifesaver for my neck and head pain. I did have one very short lived migraine today (dark room, a fiorcet and moist heat and gone in an hour), but that was the first one in a month.

I didn't realize that you also had the daily stomach problems. I guess you feel much like I do, that the medicine is worth it.

I tried going to 100mg at night and 100mg in the am after we last spoke and I saw Dr. S but within 3 days I was in the ER the pain was so sever. I immediately dropped it down to 100. It took till yesterday to rule out all other stomach disorders including ulcers from all of my NSAIDS.

Have you noticed your pain is worse at any certain time of day? I notice mine is bad within an hour of getting up in the morning even though I take at lunch and dinner. I'm thinking having it in my stomach so long over night may not be a great idea.

I'm going to try to drop 25g off tonight to go down to 75. Will let you know if it helps any.

Dawn

Hey Dawn,

My indigestion generally hits after I eat. That is why I didn't really associate it with the Topamax until I read your post, I thought that I was suffering from some kind of acid reflux thing. It's very annoying but not as severe as yours, I don't end up in horrible pain, just with "reflux" type symptoms. I hate it, though, and wish there was a solution better than chewing dozens of Tums every day. Maybe I'll try reducing my Topamax dose a little to see if the indigestion gets a little better...

Sorry that yours is so bad, its a shame that you have finally found a med that works for your head just to have it mess you up somewhere else! You could give the Tums a try, they do work fairly well for me and aren't too expensive. I get the ones that have extra calcium in them.

Good luck, Sandy

Sandy,

I'm glad for you that you can tolerate so it does keep the migraines down. Instead of Tums, I take the Caltrate plus Vitamin D since I remember reading something about the importance of vitamin D for us.

Just an FYI, the gastroentorologist I met with yesterday highly recommends that anyone normally taking NSAIDS (not sure if you do or not) take Prevacid on a daily basis. Of all of the acid reducers, Prevacid is somehow different that it is supposed to protect your stomach much more effectively.

Dawn

It's Amazing to me, that Topomax did about nothing for my migraines / cluster HA's, and it works for you ladies. (women do have different migraine things going on).
But, I'm so so happy that you've found something that's helping!

Pete
asb

It comes down to sugar causing the stomach pain. Topamax and sugar are not a good combination. I have been on it for a year and it took me several months to figure out that whenever I have anything that contains sugar I will have stomach pain and if the amount of sugar is alot, i.e. ice cream, I might even get diarrhea. The only thing that will reduce pain is fresh made LIME juice, not pepto, or anything else over the counter.

Mavsfan41 - Has there actually been any research done on that or did you notice the interaction on your own? I'm very curious because it could definitely applynto me. I have a horrible sweet tooth and a nightly habit of ice cream once I get the kids off to sleep ( it's like a mini celebration, lol). My newest kick is a local homemade ice cream place making key lime ice cream which is to die for.

However, my stomach has been horrible again lately to the point I was hospitalized for 5 days 3 weeks ago for severe dehydration, liver & kidney issues & renal insufficiency. At this point I'm scheduled for a colonoscopy and funny enough, my RSD pain is in remission but I'm on Dilaudid for the severe stomach pain.

My doctor seems to feel I likely have an inflammatory bowel disease. I'm wondering if this is fairly common as a co-morbid illness with RSD? Does anyone else have Chron's or Ulcerative Colitis?