Any experiences with Topomax?

[Sue G in PA]

My psychiatrist just prescribed this as a mood stabilizer. I know that some people take it for migraines. Any experiences on this med? I've heard of some nasty side-effects. I'll be on a low dose.

[asta]

I've been on it for 8 years. What would you like to know?

 

 

a

[Sue G in PA]

Side effects. Have you had any bad side effects? Some friends of mine took it for migraines and said that they felt very fuzzy-headed, couldn't remember basic things and felt like they were losing their mind! What has your experience been and how many mgs are you taking? Thanks!

[MommyX8]

My daughter was on it. She has terrible side effects. It made her VERY tired. And she had slurred speech. And it didn't take long for the side effects to start.

[Sue G in PA]

Blech. I can't deal with side-effects like that. I'm already tired! ANd slurred speech? Not for me. Hmmm...any other experiences?

[Starr]

My dd takes it for vertigo and doesn't have any side effects. They start you out with a small dose at night and increase it. It might work very well for you.

[Sue G in PA]

I will try it, but am scared about the side-effects. I guess we will see. I am starting at a very low does (25mg) and increasing to 50mg if need be. This is for mood stabilization.

[Starr]

I hope it works for you!

[mbeaser]

I was on it for a while when I was having chronic daily headaches. Yes, I felt fuzzy and I didn't notice it helping my moods any. The scary part to me was having to carry a slip of paper saying I was on it, because stopping it suddenly could cause you to have seizures :001_huh: I ended up weaning off it it a couple of months after they tried it for me, and I found out I was pregnant with my youngest the day I took the last pill so I just put up with the headaches until they stopped on their own, a few weeks before DD was born.

[ThatCyndiGirl]

If Diamox didn't work for my Intracranial Hypertension then Topomax was one of the things he was going to try next. (along with frequent spinal taps-OUCH and yuck!)

 

I was afraid of it's reputation of Dopomax. I have heard reports of people not being able to complete a sentence and feeling "stupid".

 

But,....it does cause weight loss. "Stupid, but skinny" was going to be my motto, haha.

 

I'm glad that it is working for a pp. Maybe not everyone has such side effects.

[Mom22ns]

I had terrible side effects with topomax, but not while the dosage was that low. I took it for migraines and in order to help control my migraines I had to take at least 100mg and they even tried going higher. At higher doses all I wanted to do was sleep. I couldn't think, it was like a terrible brain fog. I lost words, at least one word in every sentence I tried to say just wouldn't come out, even if it was my best friend's name.

 

I am very thankful to be off of topomax now. The benefits never outweighed the side effects for me. However, it is enormously popular because so many can use it with few or no side effects. Try it, if you don't like it, have them step you right back off.

[Sue G in PA]

I'm not liking the reports of the neg. side effects. I'm just not sure I'll get the Rx filled now. I am already on Cymbalta. It does help. But, I wanted to try a mood stabilizer. I didn't realize Topomax was one b/c I'd just heard of it used for migraines. I just hate adding more meds if they aren't really, really necessary, kwim? Thanks for the reviews.

[Terabith]

I took it very briefly for bipolar. I had some kind of allergic reaction where I felt incredibly itchy, so I only took one dose.

 

Neurontin was a miracle drug for me, although the studies show that it is no better than placebo. But it was, not overnight, but within a week, I was mostly stable for the first time in my life. I had no idea that life could be that way. My psychiatrist said he has had several patients who have responded like that.

 

Good luck. It seems like so much of medicine is an art, and a lot of guess work.

[asta]

There are a few keys to Topamax that never seem to pass the lips of doctors (why, I do not know):

 

1. It has to be titrated at an interminably slow pace to prevent the worst of the side effects (never ending tingling of extremities, the complete stupids, eg: forgetting your own name, and becoming extremely tired).

 

2. It is a temporal lobe drug. Period. Unlike many of the drugs out there that hit many receptors in many parts of the brain, Topamax, for whatever reason, only aims for the receptors in the temporal lobes. If a person's problems happen to reside there, Woo Hoo! This is your miracle drug. Seriously. Your side effects will be minimal to non-existant, and, as one person I know has stated, it will be as if someone has opened up the curtains to the dark room you were sitting in, and suddenly you feel as if you can see.

 

3. The track record as a mood stabilizer is spotty. It is an off-label use, so sometimes insurance won't cover it unless it is coded for migraines. As monotherapy, people tend to either love it or hate it (eg: they either go up or down, there does not appear to be any consistency). As an adjunct to an existing med, it tends to do better. Not everyone loses weight on it (10% of people do - it is a bug, not a feature).

 

It will make you sweat less, so you have to be careful about your sun exposure. There is a risk of kidney stones (but I've never heard of people w/o a history of them getting them), so you have to be a water drinking fool. You will be very thirsty, so this shouldn't be a problem. All carbonated drinks will taste flat. As your dose rises, many foods will simply start to taste like cardboard. Red pepper will become your friend.

 

Do not flip out if you are slowly raised up from 25mg to whatever dose. As long as it is slow. Topamax is what is referred to as a "sweet spot" drug. You will know you are at the right dose when you hit it, and if you go too fast, you'll miss it. There are people at 25mg and people at 500mg (usually epileptics). I'm sick as a dog and can't remember my name at 200mg, but do fine at 300+.

 

Like I said, you'll know if it is the right med for you. You really can't go by anyone else's experiences, as they are not you, and they don't have your brain. Your fingers and toes will tingle in the beginning. That is normal and will go away. Sometimes eating bananas or drinking Gatorade helps. Minor brain fuzziness is normal. If it doesn't go away after titrating up a bit, it may not be your drug.

 

HTH

 

 

asta

[mom2jjka]

I tried it for migraines and had BAD side effects.

 

First of all..it make me feel VERY out of it. (I literally sat through a green traffic light one day because I couldn't remember what to do...:001_huh:)

I had to retype everything I wrote on the computer because I couldn't remember how to spell...sometimes I forgot what to say.

 

Also - it makes food (especially soda) taste different.

I returned 3 Cokes at McDonalds one day - telling them their mix was off - before DH tasted it and said "It's fine" (Then I remembered reading that was a side effect) :blushing:

 

But by far the worst was ... it made me SO angry!

I cannot fathom using it as a mood stabilizer, because I have never felt the out of control anger and RAGE that I did when I was on Topamax .

(And the worst past was my doctor never warned me that was a possible side effect.)

 

One day I stopped just short of hitting my toddler daughter. :crying:

I wanted to hurt her,and it frightened me so bad. I couldn't figure out what was going on - so I literally locked myself in my room and called the doc and asked if that was possibly a side affect... and they said "yes." :eek:

 

I did lose about 10 lbs, but it was NOT worth it.

[TravelingChris]

My dd was on it for a while as one of the tries for ending her several month non stop migraine. It didn't end but she developed bad insomnia with it. WHen I was talking to another woman whose husband was given it for anxiety, he also developed insomnia. And by insomnia, I mean my dd wasn't getting to sleep until 4am. Obviously not a helpful drug for her but everyone is different. She is on Lexapro for her migraines and also for her PMDD and Lexapro did absolutely nothing for my son with his major depression.

[Karen in CO]

I take it at 25mg. I had been originally prescribed 100mg and it was way too much for me. I also cannot take the generic form of it because it has worse side effects in generic for me than in name brand. It will make you quit sodas if you drink them. I am also not allowed to season the food for the rest of the family anymore because I have no real sense of taste anymore - especially carbohydarates. Everything needs to be lighter and have more spice and lots more red pepper. Also one thing that Asta didn't mention to look out for is the an unusal side effect that I expereinced the first time took it - metabolic acidosis. It is easily remedied if you catch it but unusual enough that you maynot realize that its happening. I was afraid to start taking it again and resisted until I ran out of other options for my migraines that I was getting almost daily.

 

It isn't a cure-all, but for the people that it works for, it is terrific.

[Ali in OR]

This is an interesting thread for me. My dd has been on Topamax since she was 5 months old (now 13) for seizure control. She is non verbal and is developmentally disabled, so she can't tell me what she feels. I have to guess at what symptoms she is having. And because she takes other things and just has an abnormal brain, it's hard to know what I can attribute to the Topamax. But a few side effects I think are due to Topamax: no sweating, so we have to really watch her in the heat. Low appetite. Needs a lot of sleep.

[Dobela]

My mother has been on topomax for several months now, probably over a year. The side effects have reduced significantly with time. The only one that she has still is the increased fatigue and sleepiness so she began taking it at night instead of in the morning. Problem solved. She does have some short term memory probems but we think hers is from the mini stroke and seizures she had before starting it.

[vettechmomof2]

There are a few keys to Topamax that never seem to pass the lips of doctors (why, I do not know):

 

 

It will make you sweat less, so you have to be careful about your sun exposure. There is a risk of kidney stones (but I've never heard of people w/o a history of them getting them), so you have to be a water drinking fool. You will be very thirsty, so this shouldn't be a problem. All carbonated drinks will taste flat. As your dose rises, many foods will simply start to taste like cardboard. Red pepper will become your friend.

 

 

 

 

asta

 

I was on Topomax for 21 days for migraines and a relatively low dose.

I ended up getting kidney stones:confused:. I AM a water drinking fool (it is the only beverage I actually drink except tea sometimes) and have no history of ever getting k.s. but I got them.

It was one of those freak side effects that hit me, but otherwise I had no other side effects from Topomax. I just decided that being able to urinate was more important to me, at least without severe,agonizing pain;)

[Sue G in PA]

Thank you everyone. It seems that the risks are far outweighing the benefits for me. I don't need it for migraines or seizures or anything...just for MILD Bipolar 2 symptoms. I can deal with my "mania" b/c for most people it seems normal! I just get very productive and energetic. It is the depressive phase that gets me. I think I might ask my dr. to try Lamictal. I've done some research today and for people with Bipolar 2, like me, Lamictal has had great success. I am afraid to try Topomax now and my dh agrees it seems a bit to "tenuous". Thanks!

[Terabith]

Yep. Lamictal is the mood stabilizer of choice for persons who are more prone to bipolar depressions.

 

And if your manias are not interfering in your life, why on earth would you want them to be modulated???? I SOOOOOOO miss my (hypo) manias. The true manias are kinda scary, but my ideal would be to be hypomanic all the time. Sigh. Good times. :D

[Sue G in PA]

Anna, that is exactly how I feel. My mania does not interfere with my life...it makes me more "normal". It is the depression that really interferes with my daily life. So, would I ask for Lamictal in addition to the Cymbalta I am on or in place of?

[KidsHappen]

Thank you everyone. It seems that the risks are far outweighing the benefits for me. I don't need it for migraines or seizures or anything...just for MILD Bipolar 2 symptoms. I can deal with my "mania" b/c for most people it seems normal! I just get very productive and energetic. It is the depressive phase that gets me. I think I might ask my dr. to try Lamictal. I've done some research today and for people with Bipolar 2, like me, Lamictal has had great success. I am afraid to try Topomax now and my dh agrees it seems a bit to "tenuous". Thanks!

 

I take Lamictal and I have only had one serious depressive phase in all the years I have taken it. Please be sure to read up on SJS side effects and know what to be on the look out for. This med has to be tirated very slowly so it takes quite awhile to reach a theaputic dose. I have had no side effects that I can tell from this med and I highly recommend it as the med of choice for this problem if you are able to take it.

[KidsHappen]

but my ideal would be to be hypomanic all the time. Sigh. Good times. :D

 

Wouldn't we all. Unfortunately, my hypo phases almost always lead to a full blwn manic phase. :glare:

[IdahoHomeschooler]

My only side effect has been terrible, nasty reflux. I take 100mg daily for migraines. I initially had the weird inability to "feel" carbonation in sodas, but that resolved within a few weeks. Unfortunately, I didn't experience any weight loss. It did great things for migraine prevention, though!

[specialmama]

I was on it for migraines back in January, when I went 24 or 26 days straight with migraine. After a day and a half I had to stop. It actually intensified everything. I felt like a literal ice pick was hacking into my head with full force every 3 seconds. It was awful.

 

That said, I know everyone is different. I found the effects to be gone after half a day. Could you not do a trial to see if you experience any negative side effects? If you do, you could just stop taking it.

[asta]

Yep. Lamictal is the mood stabilizer of choice for persons who are more prone to bipolar depressions.

 

And if your manias are not interfering in your life, why on earth would you want them to be modulated???? I SOOOOOOO miss my (hypo) manias. The true manias are kinda scary, but my ideal would be to be hypomanic all the time. Sigh. Good times. :D

 

Lamictal is indicated for BP2, Topamax is not.

 

Why not be hypomanic all of the time? Well, it kills your brain. Here is a well done study about what mania looks like in people around age 60:

Silent Cerebral Infarction Type in Late-Onset Mania

Akiskal15 and Tsuang et al16 have compared bipolar disorder with unipolar depression and have reported that mania is a more serious form of affective disorder. In elderly patients with mania, Shulman and Post4 have hypothesized that, compared with depression in old age, mania is (1) a more serious manifestation of an affective disorder, (2) associated with a preponderance of neurological disorders (eg, cerebrovascular disease), and (3) associated with a poor prognosis. Subsequently, Shulman et al5 compared patients with the onset of bipolar disorder after 65 years of age with age- and sex-matched patients with unipolar depression. Manic patients often manifested complicated neurological disorders with evidence of secondary mania and had a significantly higher mortality rate than the depressed patients. Shulman and Post concluded that mania appears to have a worse prognosis and is a more severe form of affective illness than unipolar depression.

Yes, they are talking about late onset. But elsewhere in the article they discuss how early onset sets the stage for an even worse outcome. Other studies discuss how early onset sets the stage for Alzheimers.

 

Depression fares no better, as it causes neuronal death:

depression can lead to atrophy and cell loss in limbic brain structures that are critically involved in depression, including the hippocampus

 

This is why I'm pretty adamant about people seeking appropriate treatment no matter what age they are.

 

 

a

[Lovedtodeath]

My mom has taken it on and off for years. She cannot tolerate any anti-depressants but one and very few migraine medications. She has rare side effects with nearly every medication she tries. It tends to make her lose weight. Other than that it has been fine. I can't say it really works... but no bad side effects.

Edited May 6, 2010 by Lovedtodeath