Migraine

quote:

Originally posted by Eileen:
Funny you mention the potassium deficiency....I asked my doctor and 2 pharmacies about this....Topamax does not cause a potassium dificiency.....I was getting calf cramping and thought that was what it was - Nope! Just a side effect - nothing to do with potassium! I now take a lower dose of the topamax with a mulit-vitamin which seems to be helping this time around.

I'd suggest everyone a potassium and other electrolyte check from your doc on occasion when on topamax.

I find that Centrum Silver helps me, even though the thought of taking "older folks" vitamins before my time is just frightening, lol. i take the chewable and it has a ton of minerals as well as the vitamins.

quote:

Originally posted by goodqueenbess:

The worst side effects are a very debilitating memory loss, extreme difficulty with word-finding, if anyone interrupts me I completely forget what I was about to say and cannot remember, I felt stupid and doped up, I'm always sleepy, occasionally I feel slightly dizzy, and the last two weeks my feet have been tingling. The least serious of all the side effects has been a face full of adult acne, so badly that I'm worried my face will scar; I have to see the dermatologist about this and I rarely want to leave the house because it looks terrible. The fatigue is so bad that it has interfered with my family life despite my very best efforts to exercise (despite migraine pain) in an attempt to wake up, as I can't drink more than two cups of caffeine without feeling overly anxious.

First off I want to start by saying I'm almost in tears by knowing this site exists. But I hope I'm not banished. I'm on Topamax for a completely different reason than most. My NP introduced it to me as an appetite supressant (due to being on Depakote for so long, which I'm still on) and told me that I might have memory loss with people's names and I might have tingling or lose sensation in my fingers. That's all she said, nothing more nothing less. But that was more than six months ago. Ever since, I've been having a very, very hard time with word-finding. At times it makes me feel frusturated and completely incompetent. Also, I find that I have absolutely no sex drive at all. And whenever I get even remotely in the mood, my body reacts strangely and I get so strangely tired I find myself fighting to stay awake. Even when it doesn't come to sex, I have little to no energy during the day- and I'm only on 50mg. I've been on so many medications for my disorder (Bipolar) that I feel like a damned guinea pig. Since I started Topamax I've only lost 15lbs, but my NP has talked about increasing the dose. Within the past two weeks I've started noticed an increased overwhemling (almost debilitating) anxiety- so bad I've needed to admit myself into the hospital twice. If I hadn't found this site and done my research, I wouldn't know which medication was doing this to me. Once I get off the Topamax, I'm afraid my anxiety won't go away. I don't know if this is really the right place to be posting this, so do you guys know a good forum on here where I can post about meds and Bipolar? Unless one of you thinks you can help me out. I just feel used and lost... and by the way, today is my birthday. heh. Oh, what a wonderful birthday. -_-

Alexandra,

A few things here, including a pep talk. OK?

First of all, your doctor can't MAKE you increase 50mg at once. You can always ask to discuss it and express your concerns. You can also get a second opinion or even fire his sorry butt and hire a new doctor. It's YOUR health. Same thing on the issue of triptans.

As for Topa side effects, the only one I've heard of being permanent is the rare glaucoma it can cause. We have seen people take quite some time to totally get rid of the SEs.

Keep us posted?

quote:

Originally posted by Alexandra "Morpheus":
Does anyone know if some of the side affects can be permenent once off Topamax??

What can happen if the doctor made you increase your dosage by 50 mg in one (evening knowing that you have severe reactions to meds & were having major side affects already) night & told you it was ok to take a triptan for a basilar migraine several days later? Can there be long term problems (I had a severe "seizure-like episode" where my arms & leg stiffened & curled up & clenched w/electric bolts & was sent to ER- nothing found)?

I've been off of Topamax for 8 weeks & still have these problems (which started or became worse since I had the sharp increase in Topamax & Maxalt): short term memory difficulties, paresthesis, weird limb sensations & sharp, sudden headache episodes, mostly due to environmental triggers, stiffening & clenching of limbs at times & occasional weird movement episodes & waking up screaming(often at night, esp. during menstration) light blood spotting mid month, abnormally short, but extremely painful menstration (about 1& 1/2 days long), facial hair, very lonnnnng basilar migraines (between 5 days-3 weeks) & increased hemiplegic migraines/lasting one sided weakness, plus my sleep problems are still pretty bad (never good, but last 6 months have been terrible). (oh & some burning in lower stomach & blood in stools, but I don't think that is related)

I was told Topamax leaves the system in 3-5 days & while my appetite, taste, ataxia, long term memory & complete zombiness improved (thankfully), these other things are still lingering around even though I have been off of it for 8 weeks. How is this possible? Any idea when I should be functional again? Have there been any reports of people ending up with lasting affects? Can anything be done or should have any tests? My electrolytes are normal, so is my kidney & liver & I am not dehydreated...

Tam,

Hello and welcome!

You won't be "banished," but be prepared for some people to express the opinion their opinion that prescribing Topamax for weight loss isn't something they agree with. Two different times, sets of clinical trials of Topamax for weight loss were discontinued because of the side effects. I think you probably agree with that at this point.

You are more than welcome to post here. I don't know how much help we can be, but we'll offer you as much support as possible. We do also have a Bipolar Disorder site, BipolarConnect, and they have a forum as well at http://forums.healthcentral.com/discussion/bipolar/forums.

Something we encourage is always asking about potential side effects before you leave the doctor's office. A bit late for this time, but something to consider.

So, stay with us, join the forum on the Bipolar site, or do both. You're very welcome here!

quote:

Originally posted by Tam:
First off I want to start by saying I'm almost in tears by knowing this site exists. But I hope I'm not banished. I'm on Topamax for a completely different reason than most. My NP introduced it to me as an appetite supressant (due to being on Depakote for so long, which I'm still on) and told me that I might have memory loss with people's names and I might have tingling or lose sensation in my fingers. That's all she said, nothing more nothing less. But that was more than six months ago. Ever since, I've been having a very, very hard time with word-finding. At times it makes me feel frusturated and completely incompetent. Also, I find that I have absolutely no sex drive at all. And whenever I get even remotely in the mood, my body reacts strangely and I get so strangely tired I find myself fighting to stay awake. Even when it doesn't come to sex, I have little to no energy during the day- and I'm only on 50mg. I've been on so many medications for my disorder (Bipolar) that I feel like a damned guinea pig. Since I started Topamax I've only lost 15lbs, but my NP has talked about increasing the dose. Within the past two weeks I've started noticed an increased overwhemling (almost debilitating) anxiety- so bad I've needed to admit myself into the hospital twice. If I hadn't found this site and done my research, I wouldn't know which medication was doing this to me. Once I get off the Topamax, I'm afraid my anxiety won't go away. I don't know if this is really the right place to be posting this, so do you guys know a good forum on here where I can post about meds and Bipolar? Unless one of you thinks you can help me out. I just feel used and lost... and by the way, today is my birthday. heh. Oh, what a wonderful birthday. -_-

THanks Teri for responding.

Well, when I was on Topamax, I was very out it & confused so when my doctor told me to titer my dose up 50 mg in one night, I didn't think to even "talk" to her about it. All I knew was that I was in severe pain & wanted it to go away because I was driving up on sidewalks and and bumping my car into stationary objects at the time...I mean, I can barely remember what happened to me when I was on Topamax, except that I was falling asleep all the time & was highly anxious & that now I don't have job.

I didn't know I wasn't supposed to take triptans & apparently the doctor didn't know triptans aren't good with basilar & hemiplegic migraines.

And I have no clue how to talk to doctors...I have an appointment with migraine specialist soon & have no idea what to say. I am not anal & not very organized & tend to loose track of topics alot so even writing a list of things doesn't help all that much.

So, how long does it take get rid of these side effects...the partial seizures, parasthesia & severe memory imparement...3 months, 6 months, a year?? All it says on their Website & from what other people told me is that all the side affects should be gone w/in 3-5 days (my appetite, taste buds & zombiness did improve within that time)??? What am I looking at...I really need to know, because I am looking for work as a special education teacher again...my last 2 interviews didn't go very well & I am not sure what I am capable of anymore with all this stuff going on, but I have to get a professional job very soon because I need the money & insurance.

So I want to clarify that upping on the Topamax & taking the triptan was in the past...this occurred almost 4 months ago, I think...

Again, I was extremely confused & out of it at the time, so I had no idea this was not a good idea at the time...having an "intelligent discussion with my doctor" or firing her at the time was not an option, because I was unable to think very clearly. Right after she upped the Topa dose & I took the Maxalt, I did have a major episode where my arms & leg stiffened, clenched up & had electric bolts & I was sent to ER at the time (end of Feb or beginning of March) & they didnt find a stroke.

This type of thing never happened to me before, but has happened since being in ER. It's a big mystery what happened to me & the doctors don't know what happened. My temprorary GP thinks somehow a seizure occurred & that I have been getting partial seizures, possibly triggered by Topamax & the triptan...but we still don't know. I'm just very down & feel hopeless that anything could get better...

So, now I have NOT been taking Topamax for about 2 months & decreased my dosage over 2 months ago... about 4 day afterwards, I noticed that I could:
--drink soda again
--eat without getting nauseated
--move like my normal, awkward self, rather than like a zombie
--only have hypnognic hallucinations only when I am sleepy, nap or have sleep attacks instead of hallucinating all the time on Topa.


However, over 7 weeks later, I am still getting weird limb sensations & paresthesia, especially when exposed to my triggers, which I try to avoid, but my sleep is pretty crappy so I'm never fully ok (always has been)...unfortunately, when I try to be more active...like go to movies, run errands or go on job interviews, I am exposed to my triggers:

-flourescent & bright lights/flickering lights
-vibrations (from public transport or car)
-driving for more than 15 minutes
- (stress probably doesn't help)

which make it very difficult to function or focus, especially on a job interview. And any accommodations at a potential school would be considered "unreasonable" & cause "undue hardship", because they certainly aren't going to change their lighting or start time just because of me. And I probably wouldn't tell...because of my last job experience, etc. I would be afraid they would think that I am a liability risk & wouldn't trust me to be alone with the children.

Alexandra,

Sweetie, I fully understand how that increase happened. Just know that I wasn't picking on you, but offering a pep talk. We all need them from time to time.

Our guide to visiting a new doc isn't online yet. If you want help getting read for your specialist appointment, please feel free to email me at the email addy in my signature below.

Wow. It really does vary with how long it takes side effects to go away. Wish I had a more concrete answer for you.

hugs,

quote:

Originally posted by Alexandra "Morpheus":
THanks Teri for responding.

Well, when I was on Topamax, I was very out it & confused so when my doctor told me to titer my dose up 50 mg in one night, I didn't think to even "talk" to her about it. All I knew was that I was in severe pain & wanted it to go away because I was driving up on sidewalks and and bumping my car into stationary objects at the time...I mean, I can barely remember what happened to me when I was on Topamax, except that I was falling asleep all the time & was highly anxious & that now I don't have job.

I didn't know I wasn't supposed to take triptans & apparently the doctor didn't know triptans aren't good with basilar & hemiplegic migraines.

And I have no clue how to talk to doctors...I have an appointment with migraine specialist soon & have no idea what to say. I am not anal & not very organized & tend to loose track of topics alot so even writing a list of things doesn't help all that much.

So, how long does it take get rid of these side effects...the partial seizures, parasthesia & severe memory imparement...3 months, 6 months, a year?? All it says on their Website & from what other people told me is that all the side affects should be gone w/in 3-5 days (my appetite, taste buds & zombiness did improve within that time)??? What am I looking at...I really need to know, because I am looking for work as a special education teacher again...my last 2 interviews didn't go very well & I am not sure what I am capable of anymore with all this stuff going on, but I have to get a professional job very soon because I need the money & insurance.

I am on my second month of taking topamax. I am not taking topamax for migraines but because i have a build up of fluid in my brain that is causing pressure on my optic nerve and this is reducing the pressure. I am currently on 100mg. and just recently, about two weeks now have been experiencing a slight stabbing pain in my abdominal area. have any of you experienced that along with all the other side effects?

Jen

Welcome to MyMigraineConnection.

Do you have Pseudotumor Cerebri,now called Idiopathic Intracranial Hypertension? With this condition, your body produces too much cerebrospinal fluid pressure or doesn't absorb it well, resulting in increased cerebrospinal fluid pressure. And also pressure on your optic nerves.
Click here

I have taken topamax for this condition, but stopped it. There is a possible side effect from topamax that can cause kidney stones. If you have a problem with kidney stones already you may want to discuss another treatment option for this conditon with him. Please call him in the morning to talk about this.

Another med used to treat PTC, IIH is diamox. I wasn't able to take that so I take neptazane.

One other word on topamax, it needs to be increased very slowly and taken twice a day not once.

Let me know if you have more questions, I will be happy to help in any way I can.

quote:

Originally posted by JenBlossom:
I am on my second month of taking topamax. I am not taking topamax for migraines but because i have a build up of fluid in my brain that is causing pressure on my optic nerve and this is reducing the pressure. I am currently on 100mg. and just recently, about two weeks now have been experiencing a slight stabbing pain in my abdominal area. have any of you experienced that along with all the other side effects?

Jen

I just came to this site to see about side effects. Now I know why I walk around feeling like an idiot.I stutter because I can not find the right words half the time. I have been on it for 4 years going from 50mg to 300mg. I take 150 am and pm.This seems higher then anyone here. I remember nothing. I take it for migraines and depression. I don't know what to do now. I feel bad for everyone but I am glad there is a reason and I am not just suddenly an Idoit. Any advise? (I spell checked this Twice)

I was on 400 mg for 9 mo. It has taken me 2 years to 98% recover. My communication problems were more written than oral. Sometimes I would try to spell the simplest of words and spell checker could not even come up with a good guess! Most of the right letters would be there, all scrambled up. I have written articles that were published in magazines with national circulation, pre-Topamax. I don't believe I could do it now.

Sometimes the cure is worse than the illness. Might be time to look for a neew cure?

Take care, Bob

Daphne,

Hello and welcome! Is the Topamax helping with your Migraines? Do you have any side effects other than the cognitive issues? When side effects impact your life so severely, it may be time to taper off and try something else. There are over 100 medications that can be used for prevention, so you have lots of options.

Welcome again,

quote:

Originally posted by Daphne:
I just came to this site to see about side effects. Now I know why I walk around feeling like an idiot.I stutter because I can not find the right words half the time. I have been on it for 4 years going from 50mg to 300mg. I take 150 am and pm.This seems higher then anyone here. I remember nothing. I take it for migraines and depression. I don't know what to do now. I feel bad for everyone but I am glad there is a reason and I am not just suddenly an Idoit. Any advise? (I spell checked this Twice)

Hello -- I've been on Topamax for 3 months and have noticed all the same cognitive side effects as everyone here describes. I really need to be on my toes in my job and am thinking about switching medications. My doctor mentioned Elavil. Has anyone here tried that, and if so, has it helped? Thanks so much -- Cathy

Welcome to MyMigraineConnection.
Elavil is a antidepressant used in Migraine prevention, but there are plenty more to choose from. Like over 100 medications. I used elavil for about 18mos. and it did not work for me. That of course doesn't mean it wouldn't work for you. This article has a lot of info on preventives: http://www.helpforheadaches.com/articles/prev-meds.htm
What kind of doctor do you see? Maybe it is time to see a headache specialist. Click here
Again, welcome and please keep us posted.

quote:

Originally posted by ccowan6100:
Hello -- I've been on Topamax for 3 months and have noticed all the same cognitive side effects as everyone here describes. I really need to be on my toes in my job and am thinking about switching medications. My doctor mentioned Elavil. Has anyone here tried that, and if so, has it helped? Thanks so much -- Cathy

Hi Nancy,

Thank you for writing back so quickly. This advice came from a general neuro. This is the first time I've seen a neuro for my migraines, but I've been having them for several years. Been using Imitrex until recently when I started using more than the insurance would cover. Then my primary doc put me on Topamax and I asked to be referred to a neuro. This one was very nice, but not a headache specialist. There is another one in town who says he has more experience with headaches. I could also drive somewhere like Cleveland Clinic Headache Clinic if that would be worth it.

The general neuro wants to up my dose of Topamax to 200mg. I'm now taking 100mg and experiencing cognitive impairment that I just don't like. Would it only get worse at 200mg? What about the Zonegran and Neurontin that other people mention? Neither my primary nor the neuro has mentioned either of those. I'm not sure now what to do. Thanks for running this board! It's very informative. Cathy