Anyone taking Topamax and have experience with the side effects?

[stalightz]

A few months ago, I started having wicked migraines with neurological components - my neurologist put me on Topamax as a preventive. It is working for the headaches, but in the meantime, I have developed a whole slew of other things going on. Do any of these sound familiar to anyone that has experience with Topamax or is there something else happening? I am taking a pretty low dose (25mg).

- Extreme Fatigue and Malaise
- Lump in Throat (feels like a golf ball and its uncomfortable to swallow)
- Parasthesia in legs hands and feet and weakness in my left hand
- Muscle and joint aches, especially in back of neck and feet
- Sleep disturbances (sporadically)
- Huge amounts of phlegm during the day that come and go for no reason

Blookwork - high ANA level, otherwise ok. MRI and EEG = normal. TSH = normal.

Thanks for the advice :)

[JJ712]

Yes. I have recently gone to the Dr and have a positive ANA along with the speckled pattern. My Dr refused to diagnosis me with Lupus. I majority of the symptoms but she was unwilling b/c not ALL my bloodwork was conclusive. So, then why am feeling like this??
I have been taking Topamax/Keppra for 16& 2 1/2 years and have some issues but not like this just recently. She just wrote a Rx for steroids and told me to follow up in three months. She also told me tell my Neurologist. Nice Dr! I am so frustrated!!

[gingerzginger]

I know this is old. I just developed drug-induced lupus and we aren't sure why yet. But we think it might be from topamax. I'm not taking that many medications. But I've been taking this for years for my migraines, and my dose was increased last summer and that's when my joint pain and exhaustion got out of control. Now my ANA is 1:360 and I have positive anti-histone antibodies.

[bigcopmh]

hello very similar to my wifes issues but she only took topamax for 6 months for headaches. she had a pancreitis attack and all kinds of issues over the last year. weakness in legs tingeling tremors in legs. headaches. Ana is 360. mri all negative. spinal tap negative for everything. Did your symptoms subside when you stopped taking the meds?

[Brpellet]

Try Trokendi. New Topamax that doesn't have all the side effects. I was having the same problems, and I asked my doc to go off Topamax because I couldn't function on it. He gave me samples of Trokendi, same strength (100 mg) and I feel way better.

[snodog]

Hi,  Did you DX of Lupus come before or after you started taking the Topamax?  I have similar problems you describe.  I have had migraines for about 15 years, and have been taking Topamax for approximately 8 yrs.  I took 50 mg twice daily for 4 yrs and have been taking 100 mg twice daily for 4 yrs. It has helped a lot with migraines.  I developed Lupus, went to see Rheumatologist in November 2012.  She prescribed Plaquinel 200 mg twice daily which helped for a while.  She then told me that this lupus was in remission, but I am still miserable.  She suggests every 3 months that perhaps it is a drug induced Lupus from the Topamax, but she cannot find any big studies or evidence of this.  There are, however some anti-seizure meds that can cause drug induced lupus if used for a long time.  

I am so miserable I am going to talk to my PCP about weaning off of Topamax and trying something else for migraine prevention.  Your post caught my eye because you mentioned Topamax use and Lupus in the same post.  Excuse my long narrative.

[Prude16]

Hello, I've never posted on a blog, however I think you need to hear my story. I have been taking Topamax for years. I'm talking over ten years at a high dosage. Currently i am on 425mg a day, which is over the maximum. It was a god send for me. I have experienced almost every side effect possible, except weight loss. I've had fogginess, tiredness, tingling in my hands and feet, back pain, the lump in your throat, and excessive insomnia. This may make you ask yourself why the heck is this girl taking this medication; she's nuts. But this is the only one the has worked for me. It work through high school and college when I got my degrees. It took approximately 25-50 seizures a day to a few a month. And now a sleeping pill gets me through the nights. My husband, friends and family drive if I need to go somewhere, but as bad as this drug sounds, their are ways around it.

[horslovr]

I have been on Topamax 200mg. twice daily for over 4 years.  My doctor increased the dose gradually.  I have had very few side effects.  ANY drug can cause side effects and should be used with caution and discussed with your doctor.  This is where a doctor/patient relationship is extremely important.  The only side effect that I have experienced is slight fatigue and confusion when my dosage was increased--this went away once my body adjusted to the medication.  It has helped my migraine headaches a lot.  I have a high ANA--dx w/Lupus which can explain fatigue, painful joints/muscles, migraines, and memory loss.

[countryzipcode]

This is all horrible. Perhaps you should send a copy of what you wrote here to the State Medical Board so that it is documented. Also, any of the TV stations that do investigative reporting or try to help people get to the bottom of an issue. My heart goes out to you.

[blakhawq]

This is an old post, but I have been on Topamax for 4 months now, and yes, there was a period of "adjustment", where my body had to learn to cope with the medication but that's past now. I was started on 25mg and had to double the dose weekly until I reached my max dose. I experienced many of the listed symptoms. They were worth it in my opion though. I have only experienced a few unavoidable stress induced migraines since being on the full dose (death of close family member, etc). I was able to lessen the parasthesia almost completely by increasing my electrolytes & potassium (Gatorade & bananas) and the other side effects have faded with time. But like all medication, its not for everyone. Everyone reacts differently. It is a very powerful drug. If there is something out there that works for you, stick with it. I've tried everything else and who knows,  maybe in a few years I'll be getting break through migraines with this and will have to adjust to something else. I did lose 30 lbs in the last 4 months and am back to my old active duty weight, that's also a side effect that wasn't mentioned. :)

[looktofuture]

I was on Topamax for 5 weeks.  My prescription started off 25mg per day for first week and upped 25mg each week until I was at 100mg.  Well needless to say I had all of symptoms you described and then some.  My migraines changed into pressure headaches in the back of my head.  On 04/24/09 I was at work and had to rush to the hospital because my face started sagging and speech slurring.  I really felt sick. Unlike any other time. By the time I arrived at the hospital, approx 5 to 8 min after leaving work I was paralyzed.  I made it to check in and stopped breathing.  I was resuscitated and spent 1 horrible week in the hospital.  Still having neurological problems now.  The saddest thing now is the doctors have the nerve to say it is all in my mind.  The facial sagging and tongue twisting and slurred speech were all captured on an EEG but they say they don't know what it could be. They say clinical correlation is recommended.  That means they want to verify with another clinic before stating the diagnosis.  So believe it or not they are sending me to have some psych test done. I tell you it is ridiculous.  I was having these spells for at least 3 to 4 weeks after they put me on the topamax.  I no longer take topamax, but I am still having the spells.  Out of nowhere my face sags, tongue twists, speech slurs, righted weakness and hands curl up.  Got to love that, huh! So please be careful.  I am 43 and was working the day I collapsed.  23 years and now no work, no pay! My whole life turned upside down.  Stress I believe exacerbated my migraines which led me to topamax. I kept losing my vision.  Well, you can't work if you can't see, now can you. So I agreed to take the topamax.  Found out later it is a derivative of sulfonamides. I am allergic to sulfonamides. Just be careful.Please

[JT622]

I have all of the symptoms you list, except the lump in the throat, the phleghm and the lab work issues/blood levels.  In short, with only small increases in my topamax (25 mg at a time - I am only up to 75 at 2 months), I am deeply affected by the drug but also desperate to stop what are probably 10 migraines per month.  I get parasthesia and pain in my arms, legs, hands and feet, as well as weakness.  The legs actually keep my from falling asleep (like right now).  I get it sometimes in the face and mouth as well.  I didn't have any short term memory loss until the last increase (to 75 mg), and it's been just slight.  But I have gotten a little dizziness or what is like an "off-balance" feeling in my head if I move it too quickly.  And I'm really tired and fatigued.  I'm waiting and hoping for this to dissipate.  I pray that it will for you as well.

[Annie62]

Yes, i was having symptoms all during that time.  It was a nightmare, and I pretty much survived it all on my own with little support from anyone, and NO help from the doctors who couldn't bring themselves to believe my symptoms had an organic basis.  When symptoms go on that long and the doctors can't find anything/tests aren't revealing, well, sometimes you don't get a whole lot of support from your family, either.  They just figure something would have come to light by now in all the testing.  But the reality is is that the right tests need to be done.  I finally got dxd with autonomic dysfunction in December at Mayo Clinic, probably autoimmune, but they don't know the etiologfy for certain, though it certainly acts like an autoimmune disease, those diseases run in family, and most autonomic dysfunction is autoimmune in nature--so I've been told.  Now I can't even get a neurologist locally to see me, so you're doing better than I am in terms of that!  I have significant symptoms that I have tried repeatedly to address with the doctors but they weren't all that interested.  Hopefully on returning to my PCP he will be more receptive now that he knows my dx and will get me in to see a decent neurologist as well.  

I hope you have better luck, that it doesn't take a good chunk of your life trying to find out what is causing your problems, and that most of all you are believed.  My doctors didn't believe me from the very beginning-it was obvious-but there was nothing I could do about it.  The more I insisted there was something wrong with me the more they became irritated with me/wrote me off as one who "wants to believe she is sick when she is not."  Don't let them try to get away with it if they try to do this to you.  It's morally reprehensible in terms of the toll it takes on one's physical and emotional well-being, and if you have something that is treatable, especially in beginning stages, it could adversely affect your prognosis as well.  Good luck to you.

[stalightz]

Wow - that's a long time to go undiagnosed. Were you having symptoms during those years? That sounds like a nightmare to me. If it takes that long in my situation, and I feel like this the whole time, i'm going to freak out.  How did you end up getting a diagnosis and (I hope) treatment? I feel like waiting until May for my rheum. appointment is unbearable.. I just want to get on with my life :)

[stalightz]

Interesting! Annie, my titer was 1:160, speckled ? Worry - Its interesting that  haven't noticed those side-effects with your son or your friend who is on a higher dosage.. You know how package inserts list everything under the sun.. its hard to tell what is from what. I don't usually notice many side-effects from drugs.  I tried to stop taking it last night to get a better idea if the symptoms would stop but started to get a wicked headache so quickly gave up on that idea.

I'm not getting much feedback from docs at this point, other than saying that i need to see a rheumatologist (and I can't seem to get an appointment before May!).. it seems a long time to wait. Yikes.

[Annie62]

Stalightz,

This is what I have learned regarding the ANA.  A titer of 1:160 is posititive/elevated but it is not really considered a "high" titer.  I also had an ANA of 1:160 and was told it was "mildly positive."  ANA levels fluctuate, though, depending on disease activity.  Also,  Borderline ANAs 1:40 usually don't mean anything, but in my opinion (from what I have read-and I am not a medical practitioner) an ANA of 1:160 should be worked up further, which I am sure the rheumatologist will do with further antibody tests.  My 1:160 titer was dismissed as not meaning anything for 13 years by doctors, but I knew it was significant-always believed I had an autoimmune disease-and just found out that I do have an autoimmune disease.  I read that only 8% of the population will test at that titer--the higher the titer, the more uncommon and the more indicative of disease.  But sometimse ANAs are elevated just from infection, drugs, old age, etc., and don't necessarily indicate disease.  

Also, speckled pattern can be seen in lupus, mixed connective tissue disease and Sjogren's (not sure what else), BUT, just because you have a positive ANA with that pattern doesn't mean you have any of  those diseases---so i am not trying to scare you.  My ANA pattern was consistently nucleolar (scleroderma normally has that pattern), but I do not have scleroderma.  

When you go to the rheumatologist I'm sure you will learn more.  Wish you the best and hope your symptoms resolve and it's nothing.  

[Annie62]

What do you mean by a "high ANA level?"  What is the titer?  If it is really that high then possibly it could be related to your symptoms of joint/muscle pain, fatigue, etc.  What does your doctor say about your ANA level?

[worryismymiddlename]

My son is on Topamax and has been since he was 6, he's 10 now.  He takes it for a epilepsy.  Up until October he only took 25mg and now takes 75mg.  I really don't know if the side effects display themselves differently in children, but I know he's never had any problems with his topamax.  They had told me the main concern would be loss of appetite, but he's not even experience that.  I do have a friend who takes it as well, at a much higher does, for MH issues and she's never had any side effects from it either.  It's been a God send for us.  Not sure that's much help, but I just found this site and thought I'd share.