Topamax is making me stupid (UPDATE pg 7)

[disneymama73]

Hi everyone. My doctor visit went very well. He was great about letting me try the Topamax. I just took my first 25 mg tablet. I'm supposed to stay at that for at least a week, and let him know if I don't think it's working, then he'd bump me up to 25 mg twice a day. He said he's got several patients on Topamax that are having good results. He told me about some of the side effects, mentioned the change in taste and that some people lose weight. Although it would be an added bonus to drop 10 pounds or so, I'm sure it won't happen to me. Unfortunately, it takes a lot for me to lose my appetite!

Thanks so much to everyone for all of the information and especially to disneymama73 for starting this thread! I have new hope to be migraine free now!

I'm so happy you're at least able to give it a try! I really hope it works out for you.

Now my dr. told me that NONE of his patients lost weight. So I thought, well, I'm surely not going to be the ONE that does. And 25lbs later... Be prepared to quit drinking carbonated beverages -- probably by tomorrow or the next day. Well, actually, you may be ok until you bump up to 50 mg/day. Did he tell you about the tingling, too? Occasionally my fingers and toes get a little tingly. No big deal, but just know that it may happen.

Oh, I hope you will be migraine-free now!!! :

 

[disneymama73]

Tell me about it. I took a Vicodin last night thinking - I'll take this Vicodin, I'll get some decent sleep, and I'll get up early and get some stuff done before the kids get up. Instead of that happening my kids got into bed with me when they got up and they watched cartoons while I slept. I feel like a really bad mom today. And I'm not sure what makes me feel worse, the headaches or the Vicodin.

Oh I hear ya. Once, I was in such pain, I thought "well, I'll just take a 1/2." Yeahhh, not a good idea. I had to send the kids to my neighbor friend's house. I couldn't keep my eyes open and zonked out on the couch.

 

[sugarpie]

Hi everyone. My doctor visit went very well. He was great about letting me try the Topamax. I just took my first 25 mg tablet. I'm supposed to stay at that for at least a week, and let him know if I don't think it's working, then he'd bump me up to 25 mg twice a day. He said he's got several patients on Topamax that are having good results. He told me about some of the side effects, mentioned the change in taste and that some people lose weight. Although it would be an added bonus to drop 10 pounds or so, I'm sure it won't happen to me. Unfortunately, it takes a lot for me to lose my appetite!

Thanks so much to everyone for all of the information and especially to disneymama73 for starting this thread! I have new hope to be migraine free now!

I really hope you get some relief!!!


BTW, my migraine is gone!
The first day in 5 days that I actually feel good. I'm so excited.

 

[disneymama73]

BTW, my migraine is gone!
The first day in 5 days that I actually feel good. I'm so excited.

I'm so glad to hear that!

 

[Tigger&Belle]

My tingling was pretty severe. Nothing that really bothered me, but pretty strange. It's the same feeling that I have when my foot or hand falls asleep and "wakes up", but without any pain. That mostly has gone away. And I never had the soda problem, but I'm not much of a soda drinker so it wouldn't have really mattered to me.

Oh, and I did want to clarify one important thing...I was stupid before Topamax, but I was better at hiding it.

 

[disneymama73]

My tingling was pretty severe. Nothing that really bothered me, but pretty strange. It's the same feeling that I have when my foot or hand falls asleep and "wakes up", but without any pain. That mostly has gone away. And I never had the soda problem, but I'm not much of a soda drinker so it wouldn't have really mattered to me.

Oh, and I did want to clarify one important thing...I was stupid before Topamax, but I was better at hiding it.

YES! That is what it's like...your hand or foot falling asleep and waking up. You're lucky you didn't have the soda problem. I miss my Coke. Maybe that's why I lost 25 lbs.

I've always been a ditzy blonde, but now it's a REALLY good thing I'm blonde. At least I can blame it on something!

 

[Duckfan-in-Chicago]

This is an interesting thread. I've been on Topamax for about 3 years. I didn't read all of the stuff here because there is a lot of pages, and the mind wanders, but I can't stand in one spot for more than 15 minutes or my legs fall asleep while I'm standing. I sometimes forget words so it takes me a while to say what I want to say. Sometimes I'll look down and a totally different word than what I wanted to say is typed out.

 

[kimber79]

Dopamax....I mean Topomax did nothing for me....glad to hear that some of you are finding relief with it! I started out with 25/mg 2x day ~ and went up to 50/mg 2x day....took that for some time, and then quit taking because it did nothing for me. I never lost any weight taking it....my doctor laughed at me when he told me that was a side effect and I got all excited about that....all it did was made me lose my train of thought! My insurance did not cover Topomax even after explaining to them that it was a preventative for migraines, they still would not authorize it because it is also used for seizures and heart problems...so they didn't believe that it is used for the migraine prevention. I have also been on several different onset meds...and have not really found any that I like yet. Currently I am on Zomig, but I am almost always a two pill person...and this stuff is expensive. But a few that I have tried....I would rather deal with a migraine as to deal with how I feel on the med.

I just started with a new neurologist ~ and he put me on Corgard. Not sure I am liking this yet....but have only been on it for a couple weeks, so I will give it some more time. I saw this neurologist on the 2nd of this month....and he ordered up a bunch of bloodwork, and an MRI which I had on the 7th. The MRI came back good ~ it showed a small abnormality in the frontal lobe, but he was not worried about that as he said nobody's brain is according to text book. He also told me that the bloodwork shows that I have a thyroid problem.....I have been fighting with my doctor's for about 5 years over this, and they keep telling me that I am fine and fall in *normal* range. He ordered up more labwork for me and referred me to a doctor for this ~ so hopefully I can get my headaches/migraines and thyroid under control and I will be a new person!!

 

[BibbidiBobbidiBOO]

Hi everyone. My doctor visit went very well. He was great about letting me try the Topamax. I just took my first 25 mg tablet. I'm supposed to stay at that for at least a week, and let him know if I don't think it's working, then he'd bump me up to 25 mg twice a day. He said he's got several patients on Topamax that are having good results. He told me about some of the side effects, mentioned the change in taste and that some people lose weight. Although it would be an added bonus to drop 10 pounds or so, I'm sure it won't happen to me. Unfortunately, it takes a lot for me to lose my appetite!

Thanks so much to everyone for all of the information and especially to disneymama73 for starting this thread! I have new hope to be migraine free now!

Just curious to know if it is helping you or making you "dopey". DS was already fuzzy and stupid acting by day 3 and he stopped taking it.

That is IF you remember about the Dis and this thread after taking it!

 

[disneymama73]

Just curious to know if it is helping you or making you "dopey". DS was already fuzzy and stupid acting by day 3 and he stopped taking it.

That is IF you remember about the Dis and this thread after taking it!

I'm wondering how you're doing, too, allie&mattsmom!

 

[disneymama73]

Sigh. My first migraine in two months. And it was a doozy!

I went to the movies last night with another DISer and all of our kids (5 in all). My DD2 was a real stinker. She wouldn't sit still during the movie, ended up hitting her head on the bottom of the seat and ended up with an egg on her forehead and a small cut. She then proceeded to scream until I took her out of the theater and into the bathroom where she had a meltdown that she had to "bathroom real bad." So I spent about 15 mins in the bathroom with her sitting on the toilet, NOT going to the bathroom and then having a tantrum when I wanted to leave the bathroom. It was a nightmare. Oh, I forgot to mention that she repeatedly took her shoes off during the movie and spilled her drink.

After that, we went to McDonald's, and I started feeling a little nauseous when we got there. I thought maybe I had a little too much popcorn or something. Anyway, we ate, the kids played, DD2 spilled her drink. See a pattern here?

Anyway, I got home, and it hit me. Over both eyes and a stabbing pain in my right eye. I could hardly keep either eye open. I took two Tylenol, got the kids ready for bed and went to sleep. The pain got so bad, I wondered if I would have to go to the hospital. I'm ok now, but I still feel a little of that post-migraine grogginess.

It was definitely stress-induced. I am disappointed it happened, but I'm going to write it down so I can mention it to my dr.

How is everyone else doing?

 

[allie&mattsmom]

Sigh. My first migraine in two months. And it was a doozy!

I went to the movies last night with another DISer and all of our kids (5 in all). My DD2 was a real stinker. She wouldn't sit still during the movie, ended up hitting her head on the bottom of the seat and ended up with an egg on her forehead and a small cut. She then proceeded to scream until I took her out of the theater and into the bathroom where she had a meltdown that she had to "bathroom real bad." So I spent about 15 mins in the bathroom with her sitting on the toilet, NOT going to the bathroom and then having a tantrum when I wanted to leave the bathroom. It was a nightmare. Oh, I forgot to mention that she repeatedly took her shoes off during the movie and spilled her drink.

After that, we went to McDonald's, and I started feeling a little nauseous when we got there. I thought maybe I had a little too much popcorn or something. Anyway, we ate, the kids played, DD2 spilled her drink. See a pattern here?

Anyway, I got home, and it hit me. Over both eyes and a stabbing pain in my right eye. I could hardly keep either eye open. I took two Tylenol, got the kids ready for bed and went to sleep. The pain got so bad, I wondered if I would have to go to the hospital. I'm ok now, but I still feel a little of that post-migraine grogginess.

It was definitely stress-induced. I am disappointed it happened, but I'm going to write it down so I can mention it to my dr.

How is everyone else doing?

Oh disneymama! Bummer! I just saw this and I'm so sorry! I know about those stabbing pains in the eye that won't let you keep your eye open. I was just describing that to my doctor the other day. I hope you are feeling better!

I'm on my 7th day of Topamax. I have noticed the carbonation thing and maybe, big maybe a tad bit of a decrease in my appetite but nothing to get excited about. No headaches though so that's good!

No more migraines for you now, ya hear!

 

[disneymama73]

Oh disneymama! Bummer! I just saw this and I'm so sorry! I know about those stabbing pains in the eye that won't let you keep your eye open. I was just describing that to my doctor the other day. I hope you are feeling better!

I'm on my 7th day of Topamax. I have noticed the carbonation thing and maybe, big maybe a tad bit of a decrease in my appetite but nothing to get excited about. No headaches though so that's good!

No more migraines for you now, ya hear!

Keeping my fingers crossed for both of us!

 

[piratesmate]

DD saw the replacement neurologist down at CHOP last week. They decided to take her off the Topomax because she's having so much trouble doing her schoolwork - even when she doesn't have the migraine. They replaced it with Virapimil, even though the Topomax won't be finished for another 3 weeks. They told her she'd lost 14 lbs since July 1st. I was surprised that was all, as she hasn't been eating much of anything all summer.

They also had her take 3 doses of Imitrex (9am, 9pm & 9am again) to see if they could break this migraine. (She's had it since the 7th.) It seemed to get worse while she was taking the Imitrex & Reglan (for stomach upset). By Friday is was back to the same level as before Imitrex...but still too bad to go to school.

I'm waiting for a call back to see what's next...but they'd told us we couldn't try anything else until Weds again. I'm not crazy about the DHE, but I'm afraid that's the only thing that will work. If they don't do that on Weds, the school is going to put her on homebound instruction...of course I don't know what good that's going to do - she can't read or think!

They talked about referring her for biofeedback, but we're still waiting on a call about that as well.

I sure wish they could find a good way to prevent or even treat these!

 

[BibbidiBobbidiBOO]

They talked about referring her for biofeedback, but we're still waiting on a call about that as well.

I sure wish they could find a good way to prevent or even treat these!

A migraine since the 7th of Sept? Bless her heart. That sounds horrible.
You mentioned biofeedback, have you ever heard of neurofeedback?
http://www.eegspectrum.com/ I don't know anyone that has used this for migraine, but if you go to the frequently asked questions section, migraines are mentioned. I considered this before we discovered the root of most of DS's headaches. I read SO much during that time. Good luck to you and her.

 

[disneymama73]

DD saw the replacement neurologist down at CHOP last week. They decided to take her off the Topomax because she's having so much trouble doing her schoolwork - even when she doesn't have the migraine. They replaced it with Virapimil, even though the Topomax won't be finished for another 3 weeks. They told her she'd lost 14 lbs since July 1st. I was surprised that was all, as she hasn't been eating much of anything all summer.

They also had her take 3 doses of Imitrex (9am, 9pm & 9am again) to see if they could break this migraine. (She's had it since the 7th.) It seemed to get worse while she was taking the Imitrex & Reglan (for stomach upset). By Friday is was back to the same level as before Imitrex...but still too bad to go to school.

I'm waiting for a call back to see what's next...but they'd told us we couldn't try anything else until Weds again. I'm not crazy about the DHE, but I'm afraid that's the only thing that will work. If they don't do that on Weds, the school is going to put her on homebound instruction...of course I don't know what good that's going to do - she can't read or think!

They talked about referring her for biofeedback, but we're still waiting on a call about that as well.

I sure wish they could find a good way to prevent or even treat these!

Aww, good luck! It's so frustrating, I know. I hope they find a way to help your DD. Keep us posted.

I had another one yesterday.

 

[klmall]

piratesmate - So sorry to read about all your daughter's problems. I had a few spells years ago where my migraines lasted two weeks and they were miserable days. The only thing that broke those spells were really heavy duty painkiller injections that put me to bed and sleep for 24 hours. Then I would wake up cured and could go back to work.

I can't imagine being young and trying to go to school with migraines since mine didn't start until my mid-thirties. I'm in my upper fifties now and still get them but nowhere near as badly or as often as I used to. And I'm still waiting for them to end as all the doctors said they would since there is no estrogen in me now!!!!

Good luck and I'm saying a prayer for you and your daughter that her headaches will clear! There's got to be some help, somewhere!

 

[Tigger&Belle]

I had another one yesterday.

No! I was so hoping the Topamax would end yours, but I suppose it's still an improvement, isn't it? Are you tracking when you're having them, what you're eating, etc to see if there's a pattern and any triggers that you can figure out? It's a little easier to do when there aren't as many headaches.

I thought of this thread when I was discussing migraines with another mom at soccer practice yesterday. The other parents were probably getting a kick out of listening to us. We were like this: the whole time, discussing our triggers, history of migraines, etc. What a sight we were. Only someone who has migraines or another chronic health problem would have understood.

 

[cheshirekitty]

My experience with Topamax was awful. I started the beginning of January because I had a constant migraine since Dec 2nd. It did nothing for me but give me side effects. I hope it works for everyone here on it...I hear it does wonders for some people.

I'm still not completely over this migraine...some days are better than others but we all fight through, right? Luckily, I finally have a boss who understands. Some people are so ignorant.

 

[disneymama73]

T&B -- Oh yes, it's still a great improvement! I went for 2 mos with no migraines! But to have 2 in 3 days is more of my old pattern. So I'm going to call my neurologist. It is def stress-related. I'm having lots of probs at home. I've also been staying up way too late, but that's another thread.

And I agree with you -- unless you have migraines, or another chronic health prob, ya just don't understand.