Topamax help please
 

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:hug:

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.

Topamax and sugar - Chron's or IBD with RSD?
 

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?

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!!

prilosec otc (generic prescription)
 

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.

Topamax
 

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:doctor:. I had such intense pain :mf_swordfight: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:mad:, but even then I did not want to stop the medicine:Oops:. I learned that CRPS/RSD sometimes causes migraines for people and I am one of them:vomit:. Since being on Topamax, i have not had one!!!:yahoo:

I give up
 

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. :rolleyes:

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.

Warning for Profonol for RSD & Chronic pain sufferers
 

Thanks Kitty, I've actually been on the same med at 30 mg every morning for the past 4 months yet the pain still comes.

At this point, I wish I'd never met a GI doctor. The pain still comes and goes and I'm scared to death the RSD is now spreading to my right hand, arm and shoulder since the Profonol was pushed through without pain meds last week.

My pain that had been down to 0 has been a steady 8 and I've spent the past week in my bedroom crying in pain. When the Profonol kicked in, I dropped dead weight down onto the exam table on my RSD side with 0 support from the staff. This is the worst pain I've had since before I went inpatient for Ketamine last November. I'm back on all pain meds I can possibly take & they're not even touching the pain. If I'm lucky, I occasionally get a 45 minute reprieve when they all peak at once.

I do have very small veins as the anesthesiologist noted :rolleyes: which can make any medication burn more which I'm used to. But this was like nothing I've felt ever before in my life and that includes natural childbirth to 3 children and the pain that led me to the point of no longer wanting to live before I began Ketamine last year.

Small veins or not, no chronic pain patientt, especially an RSD patient should be given Profonol as an anesthesia without being given Versed or Fentanyl first. Another option you're against the pain meds is for them to di
Ute the Profonol with some Lidocaine and saline and inject it more slowly. It should NEVER be pushed in straight as it was done to me.

PLEASE make sure you always ask ahead of time what anesthesia you are being given, especially if it's a short procedure (Profonol is a favorite for short ones) and demand to be given Versed or Fentanyl (ask your PM doctor for his opinion first if he's not doing the procedure) and make sure they give it adequate time to work. You should feel like you had a few drinks by the time you get to the OR.

I hope this prevents someone else from going through the same thing because if there is a He'll, I swear my right arm was stuck in it for a few minutes. I though I did my time there with my Ex!

*****as for Topomax, I'm back on it at 300mg a day and once again, my stomach feels perfectly fine so I have no idea what's what but ifnit's Topomax, the only thing I'll say is it seems it acts up when there's a change in my eating habits, I have to fast for tests, I get viruses or I suddenly am eating a lot of new foods or go too low carb for awhile.

Hope you're all feeling better then me tonight.
:grouphug:

Dawn

So sorry for your setback. Keep thinking positively. You got to 0 pain before so you can do it again! Please, next time insist on a virtual colonoscopy.

Have you tried Trans Cranial Direct Current Stimulation. I had uncontrolled abdominal pain and this treatment stopped it in its tracks. Still no abdominal pain eight months later.

Take care and better days are ahead for you!

Hi Ballerina,
I think it was an earlier message of your's where maybe where I read about the virtual colonoscopy, I hadn't known about it before. I tried to find a doctor to do it and they were all in Philly and booked even for consultation until October. Coming from NJ, I'm still not used to the amazing shortage of doctors out here in PA. As much as I wanted to, I just couldn't let this go on for another two months without getting it checked out. Since my RSd got bad, driving is my biggest challenge so I'm somewhat limited how far I can go for a doctor and to visit my family :(

I've never heard of the Trans Cranial Stimulation. Did you have it done specifically for stomach pain? It seems my problem is inflammation fromthr RSD. Where did you have this procedure and by what type of doctor? I'd love to know more because I know this pain will be back and I'll still have no idea what to do about it.

All of my upper and lower GI tests came back negative. Both my pain management and neurologist believed the symptoms were from CRPS. I had the treatment in January at Beth Israel Hospital in New York. I had a significant reduction in overall pain, and the abdominal pain vanished. Although my overall pain levels eventually returned the abdominal pain thankfully did not.

I will probably be doing a booster treatment in the future.

Please look into future virtual colonoscopy. I live in a rural area and there were several locations within 30 minutes of my home that offered the test.

Hope this helps!!!!!

If you need more info please feel free to PM me.

Take Care!

I take 100 mg Topiramate (generic for Topamax) each morning for mood stabilization but initially thought I couldn't because of the gastric side effects. However, my doctor set me up on a regimin of pro-biotics, not antiacids. I take 2 Alines or comparable probiotic capsules at lunch daily, 2 servings of Activia yogurt nightly, & 2 servings mornings along with 1 serving of DanActive. That has solved my problem, or at least decreased it greatly.

Good luck. I agree with you...I'd hate to give up topiramate, because it's been a wonder drug for me.