Topamax

[Gracefulprincess]

Yesterday i saw a neurologist about the migraines that i've been getting because of the medicines i'm on for POTS/NCS . They've been really bad since June to the point where i'll end up in the ER becuase the pain is too much and or i can't stop throwing up.

Well the dr has put me on Topamax. I started it today, I'm suppose to take 1 25mg pill for a week then increase it to 2 25mg pills for the next week. And then increase it to 3, so i'll be up to 75mg. and in a month i'm suppose to start taking 100mg.

He said that Topamax will make me really nausace and dopey in the morning. I'm concerned about that becuase i already feel horrible in the morning, i pretty much can't do anything or get out of bed till about 10.

So is anyone else on Topamax? Is it working for you? What side effects are you having?

[LisaColumbus]

I was on Topamax for about 2 weeks. I was told to take it before bed. I had to stop taking it. It really muddled my mind as well as messed with my vision. It was almost as if my eyes were focusing too slowly.

[Poohbear]

I was on topomax in the past and I had some side effects that were unbearable so I got off of it because it wasn't helping the migraines either.

But....I didn't have any nausea from the Topomax but I DID notice my taste buds got all messed up and things tasted really bad.

I think it's worth trying to see how you do with it. We are all so different.

[DancingLight]

I just stopped taking Topamax about two weeks ago. I was taking the Topamax Sprinkles 25 mg, and was never able to increase my dose. I also was advised to start taking it in the evening. Then, when/if I added more to add it in the morning, then night, etc. It did make me incredibly sleepy at first.

Overall, I did not tolerate it and had a LOT of side effects that increased as it built up in my system. I thought I was tolerating it b/c some of the 'dopeyness' and fatigue had decreased. But, I began having other side effects including feeling like I couldn't have anything touching my skin during the night, lower mood, higher anxiety, etc. etc.

I was NOT taking it for migraines though. I was taking it for plexus strains. A bit off-label.

Steph, on the board, is also on this med and doesn't like it too much either!

But, there are also several others on the board who are doing well on it after they waited out the side effects. It can make you quite dopey! And effect taste--but it didn't do that for me.

You may want to do a search for 'Topamax' and see what you find. It has been discussed in several threads before...

I do hope it works for you. It's worth a shot. Just keep a log and track how you are doing. And, if you haven't adjusted after the first week to the 25 mg, you may want to take it a bit slower and not add the next 25 mg right away...take it slow!

Good luck!

Emily

[morgan617]

My son is on it. He takes 75 mg for migraine. He felt a little weird for about a week, but you would have to pry them from his cold dead fingers now. They have made his headaches sooo much better and he has no side effects at all now. But every thing works differently for every one. morgan

[DancingLight]

Becca,

I'm a bit grumpy lately and I certainly did not mean to come off that way. After I wrote my post, I thought for sure you wouldn't even try the Topamax after what I said!

Please do.

I am so darned refractory and tend to have one med disaster after another, always with some surprising twist...so you have to really take my experiences with a grain of salt!

Emily

[Gracefulprincess]

Emily,

I started taking Topamax yesterday, so far so good. Of course this is my second day with it and I'm only taking 25mg right now. i'll see what happens later on in the week.

About your post, I totally understand where you're coming from. I'm on alot of medicines right now and most of them just frustrate me more then they help me. And honestly i don't really want to be anymore meds, Iv'e feud up with them. but at the sametime because of how sick i've been with the pots, ncs, and migraines, i'll try anything.

[DancingLight]

Becca,

I hope the Topamax works for you. I really do!

I hear you on trying a zillion trillion meds...I counted on my fingers, just what I could remember off the top of my head, today the number of anti-depressants I have tried...It is at least 13! So, I understand trying, trying, trying different meds and hoping for some relief!

Emily

[Jillybeanbme]

I was on Topamax for about 2 weeks.  I was told to take it before bed.  I had to stop taking it.  It really muddled my mind as well as messed with my vision.  It was almost as if my eyes were focusing too slowly.

<{POST_SNAPBACK}>

Lisa,

Topamax can, in some people, cause Acute Angle Closure Glaucoma. I hope you had an eye exam after your incident with the blurry vision. Here is a link to an article about it on the American Academy of Ophthalmology web site. It's the last article on the page. http://www.aao.org/education/sit_glaucoma/20050401.cfm

Take care,

Jill

[LisaColumbus]

Topamax can, in some people, cause Acute Angle Closure Glaucoma. I hope you had an eye exam after your incident with the blurry vision. Here is a link to an article about it on the American Academy of Ophthalmology web site. It's the last article on the page. http://www.aao.org/education/sit_glaucoma/20050401.cfm

Take care,

Jill

Thanks Jill, I had no idea! I will call my doc on Monday and have him get me in with an eye doctor.

[DancingLight]

Yes, it can cause the acute glaucoma...very rare though...but I guess you never know with POTS people...

Anyways...it is suppposedly treatable and reversible with treatment...so definitely check it out!

Em

[Guest Mary from OH]

Becca-

I take Topamax, aka Dopamax. I have severe intractable migraines. I am on MANY medications for prevention, , and rescue. My advice to you is GO SLOWLY on your dosing. The dosing schedule your neurologist gave you is the correct and typical doseage schedule. However, sometimes people (myself included) need to go MUCH MORE SLOWLY in order to be able to take the medication. I personally think that the POTS population is one of those people. I had to break my doseages into fourths!!! It took me FOREVER to get up to a therapeutic dosage, but it worked!! And, I was able to stay on the med!! The side effects didn't bother me (too much). Nausea is NOT a typical side effect. You should be watching for: TIREDNESS, inability to think of words (aphasia), tingling in the extremities, your pop will taste flat, forgetfulness... Most of these side effects get "better" with time. Currently I am on a dosage of 150mg/day - 50mg AM, 100mg PM. My highest dosage was 200mg/day - 100mg AM and PM.

The medication is actually VERY good for migraine prevention. You must be patient in getting on it to be able to tolerate it. Most people who "can't tolerate the side effects", if they are gradually backed off the medicine and then gradually put back on the medicine do MUCH better and are able to tolerate it. It really is a tremendous medication for migraines.

Also, I wanted to mention that my Neuro just put me on an additonal migraine preventative that is new for migraine prevention. It is called Lyrica. It is similar to Topamax and Neurontin, with LESS side effects. It has been helpful for me as well.

I wish you luck in your attempt to help ease your migraines. It is not an easy battle to fight. Please feel free to email me any time!!!

[Eli6596]

Topamax recently got an approval through the FDA for migraine prevention but neurologists have been using it very successfully for a long time for this purpose. Take it with food to minimize the chance of side effects. Taking it with food will slow how quickly it peaks in your blood, but not interfere with its effectiveness.

Hope it helps you. I suffer from migraines and POTS too.

Karyn

[deeplyset]

I've been taking Topamax for over a year and a half with a lot of success for my mirgrines! I oringinally started on Depokote but because of the weight gaining side effect they switched me to the Topamax (which has a weight loss side effect).

The switch over was pretty hard and it took two or three tries before we successfully did it but once we did it was great. It fail the first couple tries because we tried swicthing me over at too low of a does and my mirgrine got way worst.

Anyway I take 100 mg in the AM and 100 mg in the PM now... That's a really high dose I started off way lower and have increase over time because the headache have worsen in severity. But, Topamax for me has been a God send. So was Depakote in the beginning. My headaches were so bad I was in the hospital doped up on Morphine and all those other major drugs and they were just knocking me out because I was in so much pain.

But then they put me on Depokate... and were about to get the headaches managable... I also get regular Marcain (sp?) injection that numb my occipular (sp?) nerves which are kinda like trigger point injections (but less intense) and with these two methods (topamax, and the injections) and not over doing it my headaches stay Very MANAGEABLE. Sometimes I don't even feel the pain!

[goldicedance]

I asked my neurologist about switchng to Topamax and gettng off Neurontin. She said that Topamax has more side effects and that I should stick with the Neurontin. I asked this question given the many ads on TV and print about Topamax.

I am curious about Lyrica. I could not find any reference to it on the internet that would suggest its use for migraines. Any information about Lyrica would be appreciated.

Good luck with managing your migraines...I might suggest that your headache specialist give you a plan for treating migraines so that you can beat the migraine without going to the ER. She has written out a plan of which meds to use in what order and dosage and over what period. If, at the end of the plan, I still have a migraine, then I should go to the ER. Of course, I can call her during the migraine for advice. She has givem me her personal page number.

I call myself the migraine queen. Can you imagine being in the hospital for 7 days with a migraine. That's more time than someone undergoing cardiac bypass surgery! It drove the resident crazy having to deal with the insurance company about my prolonged stay. I loved it!!!

Hope your migraines are easing in intensity and frequency!

Lois

[Guest Mary from OH]

Lois,

Topamax (for me) has FAR LESS SEVERE side effects than the Neurontin. When I was on the Neurontin, I was SOOOOOOO tired!! With Topamax, you have to go onto it VERY slowly (especially us POTSIES). Go even slower than your Neuro recommends. If the side effects are too bothersome, back down on the dosage. Most of the side effects go away with time. The only real lasting one is the "forgetfulness" and not remembering words (aphasia). But, I figure, I'm kinda like that half of the time anyway and now I have an excuse!!! LOL!! Personally, I would give it a try if the Neurontin is not doing it for you.

About Lyrica. It was JUST approved for migraine use. Did you look at the website? www.lyrica.com I will try to dig up a couple articles for you. I know I have some..... But, the idea is that it is a drug very similar to Neurontin and Topamax, but with fewer side effects.

I'm currently on 6 -8 preventatives because my intractable migraines have become SO out of control. So I CAN relate to a week hospital stay. I am on morphine 24/7 as one of my preventatives.

Feel free to email me anytime!!

Hugs and Prayers!!!

Migraines begone!

www.fightingmigrainedisease.com

[Gracefulprincess]

Just wanted to give everyone an update about how i'm doing with the Topamax. this is my second week on it and besides it making me super fatigued and drained all the time, I'm not doing too bad yet. I just started taking the 50mg last night. i'm suppose to take 50mg for a week then increase it to 75mg for another and then hopefully get on 100mg. But I'll see about that.

The migraines have improved some too, I still get them but they don't last as long. It's weird. I'll keep everyone posted.

[Poohbear]

I'm glad you are responding positively so far to the topomax!

Hope your progress continues!!

[Guest Mary from OH]

Becca.

That's great!!! Remember, there's no "magic pill", but I really think that Topamax significantly helps migraines!! Don't forget that if the dosage is giving you too much trouble, you can always go up slower!!

Here's wishing you continued sucess!!

[lmt]

i took topamax for a very short time period b/c it gave me horrible heart palpatations. i couldn't even stand up or walk across the room without getting severe and frequent palpatations. i tried both topamax and depakote for migraines and i had very severe side effects with both of them. when i was on the depakote i was so tired i could hardly move and my blood count got so low they thought i had cancer. as soon as i went off of both medicines all of my symptoms went away.