Topamax and dry mouth

Hi...I've been on Topamax since October of last year. I take 50mg. in the morning and again at night. I haven't noticed any real significant decrease in the migraine frequency, just in the duration. Whereas sometimes I'd be in bed for an entire day, sometimes 2, now they only last until the early afternoon. A big plus. However, there are some side effects that I just can't live with. The dry mouth is a pain in the butt but that I can deal with. What I can't deal with is the almost complete loss of my short term memory. It's so bad that I will ask a person the same question numerous times in a 5 minute time period and have absolutely NO recollection of having asked the question previously. I have found myself walking down the street and not known where I am. I dial the telephone and not remember who is going to pick up on the other end. And I'm dazed and confused on a good day. On a bad day it's worse. I can't live like this. So...I was wondering if others had the same awful symptom that I'm experiencing. I have others that bother me but that one is the worst. Also, how do I wean myself off of this medication? Thanks for listening.....D.

I'm 38 years old and I started Topamax in July of 2008 for severe migraines. I've had an average of 12-15 migraines per month since my early 20's and nothing was working. While initially adjusting to Topamax I had the tingling in my hands and feet during the first month but then it went away. My neurologist increased the dose very slowly from 50mg to 100mg to 150 mg. The migraines have decreased in response to each dose increase. At 100 mg the migraines reduced to 10 per month and at 150mg they reduced to 6 per month. My dose is now being raised to 200 mg which the Dr. says is the maximum recommended for treating migraines. The worst side effects I've experienced are extremely dry mouth (from 150 mg+) and slight hair loss. My starting weight was 138 and I lost 11 pounds very gradually before my weight stabilized at 127. I haven't noticed any problems with food or drinks tasting different. For some reason, I always have insomnia for the first week after a dose increase but then it goes away. I've only had mild concentration problems but nothing notable or problematic. So far, the medication has been remarkable and I can't believe what it's like to live life without so much migraine pain! I hope other people can have the same benefits from this medication.

I have been on the med for 4 yrs now (I think). 300 mg/day. At times, especially during the winter I get cold hands & feet where they become numb (& tingly from med. I assume). Fingers may turn white. I have thin skin in those areas (can see veins, redness). I wear double layers of clothes during winter/some spring & I live in Missouri (during the day, sleep). Still have tingling some in toes & fingers, ringing in the ears, memory & word loss, little stuttering/thought process before speaking, dry mouth. Fatigue - but I am a busy person. Stomach issues - constipation (but I also don't eat very well). Anxiety - Welbution generic the whole time I have been on this. Weight loss has been nice. After reading a lot of your comments I am wondering if it is time to get off of the medicine & see how I feel

I have had all 5 types of migraines for 30 years. It seems I have had them longer then husbands : ), my children thought it was normal to "go to the ER" or to be in a dark room. I became very good at overcoming the incredible pain and pressure, rising to the top in my profession and being a single parent. I applaud my neurologist & his compassionate assistant. I toughed it out, ultimately, until Topamax came available. I still have migraines. I still must manage all my triggers. And people still don't get that migraines are all consuming and to overcome a migraine to attend a function is huge. However, I am currently, as others, backing off of several medications in a safe manner. My vision is not consistent. I tend to not play games, or read out loud as I cannot see what I used to. When I get up in the morning, my feet are sore. I have a dry mouth when I am speaking. My hands tingle and my ears ring. My gums bleed from pressure. It feels like I have a sinus infection. I have a constant headache and muscle soreness and weakness along with joint pain and low back pain. Having been on 75 mg Topamax since it came out, I no longer have the benefit of weight loss and weight gain is suddenly upon me--suddenly!! I do not wish to influence anyone in his or her choice. Personally, I am considering titrating off Topamax to see if any or all of these health issues change for me. I, too, have memory issues that are not associated with menopause. The problem with the list of side effects is that they could be present with other drug therapies or conditions. Once I have isolated the problems to Topamax, I will then have to weigh the cost of migraines vs. fewer migraines. I must remember to manage all triggers, as I hope others will also. I hope to be migraine free, with the benefit of good vision and better rest. I desire this for the readers of my post as well. Blessings.

Ok so im 18 years old and I pass out frequently, I have been unsuccessfully diagnosed with several different theories over the past two years, Recently some doctors though that my passing out may be an aura to the headaches and migraines i receive after, my doctor just prescribed Topamax to me and Im really nervous about taking it after reading about these side effects, has anyone else been prescribed topamax who has similar symptoms?

Hello,
I'm a 38 yr old female who was prescribed Topamax about 8 weeks ago for Migraine prevention.
So far, the drug is working fabulously for it's purpose.
Here are the pros and cons that I have experienced:

PROS: No migraines. Yippee!, A small amount of weight loss. This did not happen until just in the last week or so. My mood has stabilized.

CONS: Flat tasting soda, Dry skin, Dry eyes, dry mouth, (drink LOTS of water to combat this). Blurred vision, bouts of memory loss and slurred speech, loss for words. Some of these improve as your body adjusts. Worst for me is that if I miss a dose or don't take it at the same time every day (50mg in the morning, 50 at night), I'll have middle of the night anxiety attacks or even amnesia.. short-lived attacks, but very terrifying.. I always think someone is out to kill me. But again, for me, it's short lived and it only happens when I'm not taking the meds on a schedule.

Overall, I am happy with the drug. I am not experiencing hair loss or tingling. I drink a TON of water because I hear kidney stones are common with this medication.
I will endure all of the above to prevent the wretched migraine....

I hope this helps someone...

Take care and remember, God can help in your healing.. ask Him for it.. :)

God Bless..

I have been on Topamax since August 2005. This spring I began to have odd problems that I did not attribute to the drug. In April, my doctor prescribed Lasix for swelling in my legs and feet. In August I developed peripheral neuropathy in my legs and feet and began experiencing numbness in my chin and lower face. My doctor prescribed Lyrica for the peripheral neuropathy. Also in August, I began experiencing extreme fatigue and sleepiness. I became depressed and irritable. By September was falling asleep everywhere--even driving. I was exhausted because I awoke from sleep feeling totally unrested. I had a sleep study done and they told me I spent only 25% of the normal amount of time in the two deeper stages of sleep. At the beginning of November, I suddenly became plagued with excessive thoughts of suicide one Friday evening. I decided to stop all my meds, except the antidepressant. Within 48 hours I felt MUCH better. No obsessive thoughts and no more falling asleep. I felt like a giant weight had been lifted from my shoulders. By Thursday I was feeling rested when I awoke in the mornings. I looked up all my meds, including the clinical trials with ALL the side effects and recommendations on Tuesday of that week. Lasix increases the potency of the Topamax and has many of the same bad side effects as the Lyrica I was prescribed--sleep disturbance, depression, dry mouth, etc., etc. Since stopping those medications the first of November, Topamax, Lasix, and Lyrica, I have returned to normal. Even the peripheral neuropathy is MUCH better. No swelling or sleepiness or fatigue. No more irritability or deep depression. Definitely no thoughts of suicide. I can taste food again. And none of the migraines for which the Topamax was prescribed. My doctor is pleased that I am feeling so much better and concurs with the action I took. The medications were apparently interacting with one another and multiplying the intensity of the side effects. So, if you take multiple medications, please go to the clinical studies themselves and read about ALL the side effects uncovered in the studies. On the prescription information we get at the pharmacy, it lists only those discovered at "high incidence", including interactions with other medications.

I've been on Topamax for 3 years for migraine and it works most of the time. I am currently having a hard time with the usual side effects of memory loss, hair loss, word recall problems, coldness, depression, no sex drive, and am developing a cough. BUT I had a side effect that has not been mentioned when I first started taking it (25 mg in am and pm -- I'm now on 50mg in am and pm).
For about 2 weeks, I would get in my car to go to work and miss my turns because they would cognitively come up too soon (this is after 15 years of going to work the same way everyday). I had to be extremely conscious of my surroundings when I drove or I'd miss all my normal turns. I got lost in my own neighborhood once going home. At work, I'd get up from my desk to go to a co-worker's desk and arrive there amazing fast to my mind. I was experiencing time/space/distance distortion. It became fascinating to me, but it passed.

I was only on 25 mg of Topamax for two months and had to stop due to the terrible side effects of mouth numbness, taste aversion and severe dry mouth. Unfortunately, the side effects have gotten worse and persisted now for six months after going off this medication. My personal thoughts: Topamax is the worst drug on the market, has negatively impacted my life, and my neurologist could care less. These symptoms are with me 24/7 and only mildly helped by expensive mouthwash and lozenges specially formulated for dry mouth. Actually, eating certain foods makes these symptoms worse and I am afraid this is permanent, but can find no scientifically plausible evidence to explain such lingering effects. If anybody else has experienced such long-term symptoms after going off this medication, please share.

I have been taking Topamax, 25 mg. for one week. Today was the first day I took 2. My doctor prescribed it for migraines, which I was having several times a month. The past few times I thought I was having a heart attack! I read about the side effects before I began the medicine so I have been waiting on everything to begin. So far the only thing I have noticed is I have a weird sensation in my mouth and sometimes in my throat. The only way I can describe it is if I have been breathing something caustic, such as smog or smoke, or a lot of dust. One thing I am going to try is a mouthwash called Biotene or Biotene. It is for dry mouth. Maybe it will help. Has anyone else experienced this and/or tried Biotene?
I read with interest what everyone has written. I drink soda all day and will be integrating more water because of one of the posts. So far though, my cokes taste the same. Is it only Dr. Pepper that tastes differently? I have also been getting winded easily and thought it was just me. The one side effect I am READY for is the weight loss. I gained 20 pounds in a year after I quit smoking. Anything to help with that is welcome.
So far though I have not had any migraines and I always have one with PMS. No increased anxiety but I have been on Zoloft for several years for depression. Maybe the Zoloft will offset the Topamax in that respect. I can be somewhat scatterbrained at times and as an assistant principal, I have to stay focused all day. Now that it is summer I will be able to relax a bit and it's ok if I am more absent minded than usual. Except that I have to work on a research project. But hey, does anyone really read that stuff??
Thanks everyone for sharing and I will check back in if anything changes. I am curious to see how things will go.

I began reading all of the blogs about Topamax and was surprised. I have been taking Topamax as a mood stabilizer since February 2007 at 200 mg at bed time (I probably sleep off the fatigue). The only side effect I am concerned about is the weight loss. Short term memory is not an issue. As a matter of fact, I am attend college and am managing a 3.85 gpa. I wish all of you the best of luck and hope you find something that works for you.

Okay, this is the comprehensive list
memory loss, cognitive damage, exhaustion, mood swings, suicidal ideation, paranoid ideation, auditory hallucinations, depression, daily weeping.

Dry mouth, enamel stripped off teeth, no sweating, constipation and resulting hemorrhoids, loss of appetite and extreme weight loss, tingling in extremities, trembling hands, twitching eye muscles, myoclonic jerks

I took it for severe epilepsy. I had two children on it fine, no problems. It put my epilepsy into complete remission, but for all the years I took it my life was destroyed by the emotional and mental side effects. Ended up homeless and in a domestic violence relationship, which I got out of when I stopped taking the poison pills. Coming off it felt like waking from a bad dream, but without epilepsy.

The effects which never went away were the dry mouth and no sweating, the enamal is stripped off my teeth. The mood swings and depression and exhaustion and memory loss and cognitive damage never went away. The loss of appetite and extreme weight loss(92lbs at 5'1" at first, 98lbs after tolerance) never stopped, nor did the constipation and resulting hemorrhoids.

Initial dose increases caused what I understand to be myoclonic spasms, which was a change in my seizure pattern, and other seizure pattern changes. The spasms came immediately after the final dose increase, were incapacitating in severity and lasted for about a half hour, and didn't fade for a week or two.

Did put epilepsy into complete remission.

I've been on Topamax about a month now for nerve pain. It really hasn't helped my pain much, but the side effects have been incredible. I've worked up to 150mg and have had side effects from the beginning. Unfortunately, I haven't lost weight, which I need to do and the Doctor said it was probably because I don't drink sodas.

Here are the side effects I've had:
memory loss, "can't find the right word", confusion, difficulty breathing, eyes burning when looking at computer and tv, trouble reading & spelling, slower movements, dry mouth and ears vibrating.

I forgot to fill my prescription and it's a Sunday morning, so I am cutting my dosage in half. I hope decreasing so rapidly doesn't cause any kind of reaction and I will have to see how I feel as to whether or not I continue at the lower dose. I probably will. My husband does not like me on this drug. It makes me quite stupid and slow, and it doesn't even help my pain.

The eye pain is what worries me the most. My Doctor warned me about glaucoma. I don't want to take a chance and over the last week or so my eyes have started hurting more and more.

Good luck to everyone.

I have been on Topamax for a little over a year. I've had most of the side effects; tingling, numbness in the fingers, dry mouth, forgetfulness, and weight loss - love the weight loss. All the side effects have sort of slowed down as I've been on the medication longer. The weight loss has slowed and I've even began to get my appetite back- I'm afraid I'm going to start gaining weight now! I've lost about 40 pounds and I needed to lose it, so that was wonderful. I've had a very hard time losing weight all my life so this was wonderful.

I was addicted to Coca Cola and this med also helped me kick that habit because I lost my taste for the carbonation.

Does anyone know if the weight loss usually evens out after about a year or a year and a half? I need to lose about 30 more pounds and was hoping that I would continue losing weight!

Anyway, I was on the Topamax for headaches and it has completely helped that! It has truly been a God-send for me. Other than monthly hormone headaches, I don't get migraines hardly at all!

I am wondering about having my doc up my dosage for the weight loss aspect????

Hi so I've only been taking Topamax for five days now and I have a question? I am black and I also have a problem where I woke up this morning and instead of hair loss per se, my bangs on either side were cut straight across about 4 inches missing (this is a lot for a black person, maybe even to anyone trying to grow their hair for their upcoming wedding). It's like someone used scissors to cut off 4 inches, of only the front of my hair (breakage). Has anyone else heard of this? Please help.

Stomach problems, dry mouth, thirsty, tingling in feet. Worth the side effects! Totally gets rid of almost daily migraines I was having before taking topamax.

I am taking Topomax for migraines. I always start everything at a really LOW dose since I have a lot of probs with side effects. Started at 15 mg and went right away to 30mg (15mg twice daily) the second week because I was dying from headaches. The other antidepressants prescribed for constant daily headache prevention all of a sudden weren't working. I didn't want to take my abortive med for migraines every day (Amerge) so I was curious if Topomax might help my daily headache pain. Possibly my daily headaches had become migraines... so hard to tell one from the other anymore. I teach exercise for a living and so much of my headache pain is exercise induced. I found that while on topomax, all of a sudden 2 Advil would take away a headache I would get after exercising which never happened before. I would take two Advil before doing some of my hardest exercise to prevent a headache and for the most part that worked too... and that never worked before. I had tried all kinds of NSAID's before and after exercise at the advice of my neurologist to no avail. I did have one diffuse headache yesterday that might have been a true migraine and I took Amerge because Advil didn't help. I have been on the 30 mg two week now. But, now the downside. Since on the 30mg I feel like my chest is heavy a lot of time when I do water exercise... I am exhausted a lot doing my usual routines... I feel edgy, can't sleep well at night. I HAVE to have a two hour nap after teaching in the morning or I can't function mentally or physically. I sleep well for that nap time. Seems like I have thermoregulation problems. I teach water exercise and if the water is a little cold it bothers me and it never used to. Then in the pool awhile I feel hot. Same when I sleep.. I need a lot of covers, then I throw them off. Then they are on again. No I am not menopausal yet. My brain is hazy on topomax as well. I take bellydance lessons and sometimes I realize I can't remember what my teacher just told me. Now people reading this, don't think that just because this happens to me, it will happen to you. I know people who LOVE topomax with zero side effects. They don't tend to write in to posting boards. Also, sometimes side effects go away. Be patient if you want to give topomax a shot. I am thinking I am going to go back to 15 mg again... and see how I tolerate that. Because I teach exercise, the hardest thing is to feel the heaviness in the chest and the lack of ambition. This is not me. It is great not to have the headache pain, but I don't know if this is the drug for me. I was excited about the "losing weight " side effect , and I could see how skinny people who lose their appetite easily might be affected, but it takes a lot to stop me from eating LOL darn! I did read in another chat some poor chap had sinisitis for months and took TONS of antibiotics before finding out Topomax gives sinisitis type side effects in a small amount of people. So if you get sinisitis, don't take antibiotics before checking out if topomax is the culprit.

My heart goes out to every person out there trying to find the magic bullet for their headache, siezures, whatever... ADVICE.. .start with SMALL doses... you may be able to get used to side effects if you work up slowly in ALL drugs. In many drugs that didn't come in small doses, I took out 3/4 of what was inside just to get a mini dose. Ask your doc if you can mix one capsule or one pounded up tab of your med with juice and store it in the referigerator. You can drink say 1/8 cup a day of the juice to get 1/8 of a capsule. It is a lot easier than chopping up a tab into eighths. Also ask your doc about childrens doses that come in liquids with droppers. Topomax makes taking smaller doses easy with the sprinkles.. you are encouraged to open the capsule and sprinkle as little as you want on food. Good luck all. L.

I have been on Topamax for 6 years and the side effects that I have experienced have been dry eyes, dry mouth, muscle/joint aches, chest pain, memory problems, body odor, fluid retention, weight GAIN (not loss), head aches, mood swings, hallucinations, blurred vision especially at night, tingling/burning of the extremities, and the constant feeling of never being able to get warm. I was on 400mg twice a day, and since the hallucinations, I have been cut back to 100 mg twice a day. My headaches are worse, and I am now experiencing hair loss and hair breakage.

I am on topomax for bulimia. it has been amazing considering the fact that i have no appetite and diahhrea all the timeand my menstrual cycle is off. also, i have the tingling sensation in my hands and feet, which hasn't gone away in a month-isn't horrible, though. i wake up in the middle of the night and very early in the morning. (never had sleeping problems like this before). also, very thirsty all the time, dry mouth, but can't seem to drink enough fluids. however, this has medication seems to help my eating disorder like nothing else. i'm going to half my dosage and see if this continues to work. although the side effects are there, until i'm comfortable enough to do this on my own and not binge, this medication has been a a life saver for me! it's worth it b/c of the appetite suppressant issue. i have no urge to use symptoms at all.

muscle weakness-dry mouth-hands and feet tingle-fatigue. Have been on Topamax for over 1 year and sx have subsided, mostly. Definitly memory problem involved here. Dr dc'd med because of extreem muscle spasms around lower rib cage area. We'll see...

I haven't seen the weight loss yet, but have had a decrease in my appetite, but I take imitrex for migraines and have to eat through the headache to feel better. I know weird. Very dry mouth and soda's taste weird, but my teeth are very, very sensitive. I expected the weird taste buds but are the sensitive teeth normal? Taking 75 mg at bedtime. I was on birth control pills until this week. too many headaches!

I have lost 20lbs in a month since being on topomax although
i'm on 400mg a day and dry-mouth and always tired any one else have this problem.

lost 12 pounds, but eat junk late night
dreams are worse, dry mouth edgey.