topamax adverse effects?

[joviyach]

I started taking Topamax again last week Thursday, after not taking it for 2 months. I started at the low recommended dose (25mg, once daily) and every since, I have felt horrible.

Thursday, the first night I started taking it, I felt like I was actually borderline having a seizure. My arms and legs were twitching, my heart was racing, and there was pressure in the left side of my face.

Friday, the pressure remained in my face, but the twitching and heart racing wa not present.

Saturday and Sunday, I felt mostly ok, though a little dopey.

Monday, I felt light headed part of the day, and then dopey in the evening.

Today, I went to the hospital this morning because I became faint and nearly passed out. My heart started racing again, and I felt flush, and then cold. After this subsided, I felt shaky for about an hour after. The ER doctor thinks I may have had an arythmia.


Has anyone else had problems with this?

[annelb]

I took Topamax for three days about 4 years ago. My doctor prescribed it for my peripheral neuropathy. It caused me to become totally confused, lost and really dopey. I could barely function. Took me 3 days to get over the effects. I am lucky. I found out that my PN is related to eating gluten (wheat, barley, rye). By eliminating gluten my PN symptoms have almost disappeared. I do not have celiac disease - I have gluten sensitivity.

Anne

[thed0ct0r]

Yup. I've been having problems for 21 months since using Topamax for only 9 days back in late 2005. See http://brain.hastypastry.net/forums/showthread.php?t=4233.

[guineapig]

15mg once a day for four days, increase to 30mg once day for four days, two days at 45mg, bam, wake up half blind w/ blurry vision. stop taking topomax, 48 hours eye sight back to normal.

topomax reduces cerebrospinal fluid (csf) production. csf too low stretches the optic nerve which causes amongst other vision problems (diplopia -double vision for example) blurry vision. which is a side effect listed on the manufac's drug insert.

did nothing for the headache anyway.

down with topomax!

[MomtoM]

Doc, I read the entire thread you posted.

I have very bad pain (MS) and have come off the night med I was taking (nortriptyline) which was fairly effective but caused awful edema and weight gain. NO matter how much I exercised and carefully watched my diet.

I have another neuro appt and had planned to ask for Topamax because I heard it was good for my type of pain and would have the side effect of losing weight instead of gaining it.

Except for the raging pain, I feel so much relief at having stopped nortriptyline. Just physically feeling better, it is amazing.

Now I am quite afraid of this drug and don't know what I shall do. I am already on the highest dose of Lamictal shown to be effective for pain (350 mg) and when I took Neurontin, I was a zombie but felt very comfortably numb. I need something to bridge the gap between Lamictal doses.

RE: optimal dose of Lamictal, I have researched that and found it to be max of 400-500mg/day for seizures. And when I titrated, I was able to increase by 25 mg a week for the first 2 weeks, then 50 a week for the next 6 weeks, very safely and according to the standard practice of the neurologists in my hospital, very well known and a research/teaching hospital. It should not take you that long?

I started Lamictal because I was pregnant and had to abruptly discontinue Neurontin (no bad side effects of withdrawal, by the way)
It has been very successful for me in controlling pain, but this past year, my pain and nerve damage (I am in a w/c because of that damage) and would like to at least control the pain, while I am working on motor control.

I already have cognitive problems from MS and hmm, don't think I want to add to that. And blindness? Terrifying!

Would you please share the results you have had currently with the med effects and new therapy? I am very interested and worried about considering Topamax.

Thank you so much and thank you for the thread you posted.

Deb

[thed0ct0r]

Hello Momtom.

I can't stress enough how dangerous this drug can be. It DOES help some (or many?) people but the side-effects can range from annoying to downright terrifying. I was a rare case. In fact just yesterday I had an appointment with one of the biggest authorities on Topamax and HE agreed I was obviously hyper-sensitive to the drug and it caused a seizure disorder/triggered an epileptic condition. The good news is that he also said my current course of treatment (Lamictal) is the best thing I could be doing and that I should expect to be feeling better when I reach my therapeutic dose next year.

Approximately 25% of the population is too sensitive to the drug and suffer the problems that led to the nickname "Stupimax" and "Dopamax". And boy did I go through that (still am to some degree). Memory, speech and reasoning problems are definitely something you do not want to risk considering you're already having cognitive difficulties.

So you have MS? I'm so sorry but personally I would advise AGAINST using that kind of drug. As far as I know there are no benefits for MS patients or people suffering from nerve pain. It was developed for epilepsy, then approved as a migraine preventative and then used off-label for some bi-polar conditions. At the moment they're trying to "see" if it can be used to help with alcoholism (which is ridiculous as there is already an excellent drug for that - Clonazepam). Some women are even trying to acquire it for weight-loss. Insane.

Believe me I know what it's like to be so ill and clutch at every straw you can but if you ask me I'd steer clear of this one. I felt like a walking zombie for almost a year from Topamax until I was given Clonazepam. I hope the Lamictal doesn't do the same. I don't think it could be as bad though.

Regarding my Lamictal doses - the reason they're increasing my dose so slowly is because of the strange reactions I've had to medications since using Topamax. They (and I) want to be sure to avoid the potentially deadly skin rash (although the doctor I saw yesterday said if I've made it this long (7 weeks) I'm most likely in the clear. But better safe than sorry.

I'll log in more often and check my mail so I don't miss any more messages. I'm sorry I took so long to write back. I know how it feels to be waiting for answers. I wish I could be of more help but my advice is to look elsewhere for help. I'm so sorry.

I'm always here if you need to talk. Even when I'm better I'll still be here.

Take care, Deb.
TheD0ct0r

BTW - Have you considered Lyrica as an alternative to Neurontin?

[MomtoM]

Thanks Doc,
I am glad you are improving. I was afraid of the rash too, but was good. It makes sense given your drug sensitivity to take so long to titrate, but stinks that you will not be at a good level for so long. It really has helped me.
I hope it helps you too.

I have found a few MS people who have had great pain relief from it. But I am both afraid of it and want to try it.
Lyrica is supposed to cause weight gain too.

I always thought before that people were so foolish to stop a med for something like weight gain. That is, until I experienced it. It really made me feel horrible and I do not want to take a med like that ever again.
Plus, I found out my taste sensitivity had really decreased. I didn't realize it had till I got it back!! It is just wonderful to enjoy food again.

I wish I could find more alternatives to consider. I would like to be able to lay it all out by the time I get to the dr, see what she says and start something ASAP.
I cannot wait. Only 11 more days...

Thanks for writing,
Deb

[Dymphna]

I have found a few MS people who have had great pain relief from it. But I am both afraid of it and want to try it.
Lyrica is supposed to cause weight gain too.

I always thought before that people were so foolish to stop a med for something like weight gain. That is, until I experienced it. It really made me feel horrible and I do not want to take a med like that ever again.
Plus, I found out my taste sensitivity had really decreased. I didn't realize it had till I got it back!! It is just wonderful to enjoy food again.

I wish I could find more alternatives to consider. I would like to be able to lay it all out by the time I get to the dr, see what she says and start something ASAP.
I cannot wait. Only 11 more days...

Thanks for writing,
Deb

I realize this is an older thread, but here are some journal abstracts that talk about options for neuropathic pain:

Antiepileptic drugs in the treatment of neuropathic pain (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17547471&ordinalpos=9&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum)

Pharmacological management of chronic neuropathic pain - consensus statement and guidelines from the Canadian Pain Society (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17372630&ordinalpos=14&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum)

Use of Antiepileptic Drugs in the Treatment of Chronic Painful Diabetic Neuropathy (http://jcem.endojournals.org/cgi/content/full/90/8/4936) (full text - I realize you're not diabetic, but it is good info about neuropathic pain control)

Best of luck to you,


Dymphna

[MomtoM]

Thanks Dymphna for responding!
I do take lamotrigine (Lamictal) and it does provide significant relief compared to nothing! I increased the dose instead of adding another drug because I found out that Topomax is incompatible with breastfeeding so I have to wait to give that a trial.
Neurontin I have taken and at 2400 mg (effective dose for me) I was a zombie. Though sometimes I would take that if it got rid of this!
The tryptilines are no good for me.
The pain is sometimes unbearable even with Lamictal. I am trying to wean her quickly because she is well ready to do so, she just needs a bit of a push!:)
Thanks for the articles, though.

Deb

[Dymphna]

You're welcome - I'm glad they were of interest to you.

D

[sandi1016]

I went on Topamax not quite two weeks ago after being on the maximum dose of Lyrica for well over 18 months. The Lyrica helped but caused me to gain over 40 pounds which didn't help the diabetes issue whatsoever. Anyway, they started me at 100 mg of Topamax, twice a day and I have had severe nausea, have lost well over 25 pounds due to not a reduction in appetite but a complete and total loss of one, and stomach pain which really has put a damper on the very mild effects that the Topamax has had on the nerve pain that I am left dealing with.
I am supposed to see the doctor later today , and I am going to request we try something else. The lack of an appetite is not a good thing, although I wanted to loose the weight I gained with the Lyrica, that amount of weight loss in such a short time frame is not a healthy thing either, and the stomach problems are too much to deal with, not worth the minimal effect of the Topomax. Any one have any other suggestions that I can bring to the doctor?
Thank you,
Sandi M

[Dymphna]

I went on Topamax not quite two weeks ago after being on the maximum dose of Lyrica for well over 18 months. The Lyrica helped but caused me to gain over 40 pounds which didn't help the diabetes issue whatsoever. Anyway, they started me at 100 mg of Topamax, twice a day and I have had severe nausea, have lost well over 25 pounds due to not a reduction in appetite but a complete and total loss of one, and stomach pain which really has put a damper on the very mild effects that the Topamax has had on the nerve pain that I am left dealing with.
I am supposed to see the doctor later today , and I am going to request we try something else. The lack of an appetite is not a good thing, although I wanted to loose the weight I gained with the Lyrica, that amount of weight loss in such a short time frame is not a healthy thing either, and the stomach problems are too much to deal with, not worth the minimal effect of the Topomax. Any one have any other suggestions that I can bring to the doctor?
Thank you,
Sandi M

Sandi,

Lyrica can be a real weight gainer for people, unfortunately. Also unfortunately, Topamax is a hit or miss drug: when it works, it really works, when it doesn't, it really doesn't.

I put up some links on the previous page that mentioned options for pain control that you might want to take a look at. The old stand-bys are mentioned (amitriptyline, nortriptyline, desipramine), but so is basic gabapentin (Lyrica's little brother, which actually works a bit differently, believe it or not), Tegretol and its little brother Trileptal (which has fewer side effects for most people), and Lamictal.

The most important thing about all anti-convulsants, no matter what condition they are used for, is to slowly titrate to a target dose. None of the above drugs (including the triptylines, which are actually anti-depressants) react well if tossed into a body at a high dose.

The anti-convulsants are all designed to be started very low. For Lamictal, that means 12.5 - 25mg a day, and only raised after 7-10 days. For Trileptal, 150mg, 2x a day in the beginning. Neurontin: one, 300mg dose. Topamax, 25-50mg a day, raised the same as Lamictal.

I get my info from here (http://74.50.8.219) in case you want to look at other stuff.

Best of luck to you, and I hope you find something that works well.


Dymphna

[Ianto Jones]

Agreed, re: slow titration - the normal titration for Topamax would've had you starting *much* more slowly -- there are tables here:
http://www.rxlist.com/topamax-drug.htm (click the link then click the box marked '2' and scroll down to the tables) showing the week-by-week titrations). I've never heard of *anyone* starting at 200mg/day with Topiramate - it would normally take four weeks or more to get to that dosage level.
All of the Topamax studies have shown that the side effects are greatly, dramatically, reduced when titration is slower - and that the side effects are most prominent during the titration period, frequently calming as the body adjusts to the medication.
(I understand that another forum member has had a terrible experience with this medication, but my experience has been just the opposite, so while I certainly don't want anyone to use a medication that might harm them, I also don't want anyone to forgo a medication that might help them. It's done nothing for the headaches that are still dramatically impacting my quality of life and ability to function, but Topamax is helping with my neuropathic pain from other medical issues.)

[Bahamaroot]

I've never heard of *anyone* starting at 200mg/day with Topiramate - it would normally take four weeks or more to get to that dosage level.My neuro started me @ 200mg a day. I hated the drug from the first day I took it. I was put on it as a suppliment to Dilantin for seizure control and migrain relief. After starting Topamax my seizures seemed to worsen and come more frequent so my neuro kept raising the dose. The more I complained of seizures and side affects the higher he raised the dose until he had me at 800mg/day. The med never gave me relief from migraines and made my seizures worse. I had NO appetite anymore. I got down to 150lbs and at 6'2' that is thin! To boot it finally turned me into an incoherent zombie and did I mention THE KIDNEY STONES! NOW THOSE WERE FUN! I had to seek the services of an intellegent doctor to get me away from Topamax. My new Epi informed me that even the sales reps call the drug "Dope-A-Max". Well that's my experience with that horrid drug.

[Naominjw]

My neuro started me @ 200mg a day. I hated the drug from the first day I took it.

My daughter's doctor started her on just 12.5mg (1/2 smallest pill) and VERY slowly raised it from there. The goal was to minimize the risk of side-effects(i.e. cognitive dulling). She did get some noticeable cognitive dulling at the 200mg dosage, but it was not as bad as the symptoms it was being given for. However, now that she is going off it (after about 8 years--no more symptoms), we can see more just what cognitive dulling it did cause. But still, the start low, go slow approach did minimize it, I believe.

-"Naomi"

[Bahamaroot]

Going up slower can help with some of the sick and dizzy feelings but once you get to the higher doses noticeable cognitive dulling still happens. It doesn't matter if you get there slowly or fast. You don't notice it as much if you lose it more slowly, like watching a child grow. You find out exactly how much you lost when you come off of it, if you went up slow. You know exactly what you are losing when you go up faster, you just have to tolerate more nausea and dizzyness at the same time.

[Naominjw]

Going up slower can help with some of the sick and dizzy feelings but once you get to the higher doses noticeable cognitive dulling still happens. It doesn't matter if you get there slowly or fast. You don't notice it as much if you lose it more slowly, like watching a child grow. You find out exactly how much you lost when you come off of it, if you went up slow. You know exactly what you are losing when you go up faster, you just have to tolerate more nausea and dizzyness at the same time.

OMG! LOL!!! This hit such a truth chord in me that I had to laugh... including at myself!!! From MY perspective, I didn't see how much my child lost on the Topamax, especially since the migraines by that point had stripped her of her life.

But once we got the migraines to stop and she could come off the Topamax... wow, oh wow. I didn't realize what it had taken from her until she got it back... but SHE had a better idea of what was medication-induced cognitive dulling.

It is amazing how much is blamed on "illness" when it is actually the drugs.

I am soooo glad new research is coming out to alter the protocol: "If migraines, give Topamax." There are now alternatives to at least try...
But gee... there was even a seizure-like problem which the Topamax addressed, yet those don't happen anymore either.

Anyway, thank you for this perspective... I love the way you put it!

-"Naomi"

[Bahamaroot]

Hi Naomi,

I will never understand how a drug like Topamax could ever be put on the market. It robs people of as much as their illness. I guess it is all about the money. Doctors are trained to mask the side effects or blame them on something else. I have heard so many horror stories about this drug it sickens me. Even people that thought that they where benefiting didn't know the true harm until they stopped the drug. Certain drugs cause certain damage, period. It doesn't matter if you start taking them slowly or all at once. By starting slower you are just training yourself not to notice the damage, but it doesn't mean it isn't there. Best wishes. :)

[houghchrst]

I have been taking Topamax for migraines for almost 2 years. I was slowly titrated up to 50mg over a period of 5 weeks. I am highly med sensitive and felt horrible but was desperate so I thought I would give it a go and if I didn't start to feel better then I was going to stop taking it. Had some weird eye twitching, some vision problems, depression, sleepiness, probably some others but I take many meds so no telling which was causing what. I began to notice some hair loss but at the time could not find anything relating it to the med. I began to feel better about 5-6 weeks later and so far it seems to work for my migraines but I still have menstrual breakthroughs. When I told the neuro about those he wanted to add a statin. Big no from me. He raises to 100mg. Things are fine except vision, and hair loss. Still breakthroughs. Next visit he tries to get me to take Treximet. I fill scrip then do research and decide all he is doing is making drug reps happy because I need prior auth for this med but not Topamax and I already take an NSAID from my Rheumie. So there is no point. Don't take. Complain of hair loss he laughs and asks about Depakote, yes I took and had hair loss, and lowers my dose to 50mg.

I have finally gotten a pain management doctor who I absolutely love and we have discussed my migraines a bit and I am thinking of getting rid of the neuro. Everytime I go he wants to give me something different or add something and my vision, cognition (I also have Fibro so cognition is off thanks to that), and hair loss is getting to where I am concerned. My PM started me on Nortriptyline for my Fibro pain and I am wondering if I should titrate off of the Topamax letting my PM know and have him handle it. I also take Zoloft so I have to be careful of my Tricyclic levels and just finally got my dose back up thank God.

I will say that right in the middle of all this I had reached a level (right at the top of titration) with my Nortriptyline, Zoloft, and Topamax where I had felt better emotionally than I ever have in my life. My depression was gone, no mood swings, still hurt but didn't care much. It was wonderful then it is like my brain settled in and it went away and now I am back to just plain old me. Hurting, tired, fighting off depression.

I also have Imitrex for migraines but most times if I get to them in time I can stop it with an Excedrin Migraine but I have to be at home and feel it coming on.

[Bahamaroot]

Hi Christina,

The vision problems you speak of would be my biggest concern.

Seek immediate medical attention if either of these rare but very serious eye problems occur: sudden vision changes (e.g., blurred vision), eye pain/redness.
That warning is in everything that I have ever read about Topamax. I have read a lot of stories about people going partially or totally blind from taking this med. Apparently it can raise the pressure in the eye and cause permanent damage. If you started having trouble with your vision shortly after starting this med I would see an optimologist soon and tell them about the medication.

You seem to be taking what I would consider to be a very low dose of Topamax. I can't tell you what all may or may not be related to the Topamax itself, and you probably won't know unless you stop it. It might NOT be causing most of your troubles with that small a dose. I would recommend talking to your PM doctor about stopping it just to see what problems it is causing and if you are truly benefiting from it. You can always start it back up if you find you were better off with it, but I haven't found that person yet.

I was up to 800mg of Topamax at the end and had gotten no relief from my migraines and it had caused my seizures to become more frequent and severe. I was started on 200mg. I complained of memory and cognitive problems shortly after and got brushed off. Was later jumped to 400mg. I then started to complain that I had no memory any more and couldn't function without making and leaving notes everywhere. I was told it was my age. I was 35 not 75! My seizures soon began to get worse so I was jumped to 600mg. By then my head was such mush I couldn't remember to complain. The seizures where now in clusters of 15 to 20 over a three day period every four to six weeks. I used to only have three or four a year. So guess what, the topamax was raised to 800mg. At that point the weight started to fall off of me by the bucket. I am 6'1" and weighed 185lbs. "Average" you could say. I dropped to 150lbs in less than six months. Luckily there are several RN's in my family and found me a new doctor at that point.

I find Fioricet(butalbital, acetaminophen and caffeine) better for me than Imitrex for migraines. It works quickly and doesn't make me nearly as loopy. It is an Excedrin Migraine on steroids(same stuff topped off with a little barbiturate:D). Very cheap too. Keep some with me every where I go.

Best wishes

[houghchrst]

I can't imagine taking this stuff at the levels you are talking about. I am also Bipolar II and my psych doc and I had discussed Topamax and she didn't want me taking it at all. I had already been through about 8 meds with lousy to horrible side effects. I told this to the neuro and he literally told me to ignore what my psychiatrist was telling me and to take this. I was stunned but had reached a point where my migraines were starting at about 5 in the morning every morning and I was taking an Imitrex everyday and with my Zoloft that's not so good. I at that point was ready to try anything.

As for the Imitrex it works for me but takes too long, hate the loopy side effects, makes me feel nasty and sometimes I have to take another.

My PM doc says that they don't treat migraines per se, usually the neuro does that so that idea is shot all to heck. I called them.

I am taking the nortriptyline 50mg right now for fibro pain, is that ever used for migraines? I thought I read in here somewhere it occasionally is. I am wondering if I tell my neuro I would like to titrate off and see what happens.

[Bahamaroot]

Nortriptyline is mainly used as an anti-depressant but is also used to treat chronic pain and as migraine prevention in some cases.
"with my Zoloft". From what I remember, Nortriptyline and SSRI's(e.g. Zoloft) can be a problem. As far as titrating off of it(Nortriptyline), I am a believer in "if you can live without it then live without it" when it comes to meds. BUT THAT'S JUST ME. I have no fear when it comes to stopping a med, because as I said before, you can always go back if need be.

I am with what seems to be a good epileptologist now that has rid me of the horrid Topamax and the Dilantin is next. Put me on Keppra to replace those two, a fair trade. It feels so good to be getting my brain back! She also was shocked at the levels of Topamax that I was on. She said a very high dose was 400mg and I was taking twice that.

Well, I didn't shoot the old neurologist and things seem to slowly be getting better. And These are the Days of Our Lives. All the Best.