Migraine

I'm on Topamax too - 300mg at this point. It was the last boost AND some other things I think that really helped me though. (In the past couple months I've also given up my BCP - 2nd try - (though first was before Topamax I think?? - maybe not but it was a different brand), and I've been doing accupunture for 3 months now. Can't be sure if the accu is really doing anything to be honest, but I guess it hasn't hurt. I'm focusing my visits on my neck pain at this point and tapering them down so we'll see.

Fortunately I've done great on Topo and honestly, I'd be scared to stop taking it for fear of the evil headaches coming back! I do have some word forgetfulness, though my mom bought me memory books way back in college in the late 80's so I guess I was dopey with out the "dopamax"! And I did have some tingling that now only bothers me when it's really cold and my hands are warming up after a walk. Kind of like they've fallen asleep and waking up.

I'm not on any other preventives per se, just allergy/asthma meds, and pepcid/prilosec when my stomach acts up and vitamins and such, so no expected interactions that way.

Oh and I lost weight at first, though we were having a walking contest at work and I was going to the gym alot since I was working very PT and could usually manage to exercise around lunchtime after my headaches calmed a bit. So that contributed too. But now I eat like a horse again and have to work to keep the weight down. I needed to drop the weight at the time so it was a blessing.

I did go slowly. Tapered up to 100mg the first year, 200mg the second year, now 300mg since Nov. I have found I get good results for oh, 6 months or so then the effect wore off. I'm just terrible about going back to the doctor for help. Now I'm much more educated and learning to take better care of myself since finding this board a few months ago.

Good luck and I hope you find a combination that works for you!
Diane

quote:

get sleepy in front of the TV at night BUT
along with far fewer migraines, my blood pressure which was high also dropped to normal range. I question whether it's making me a tad bit weepy/sad at times

I'm so glad I read this. This is exactly why I sought this board out. I've been on Topamax for about a month now. My dog died w/in this month and there's been a million and one things going on, but really, I'm not a crier. I've been crying for almost no reason. This morning I cried twice. My poor dh was like, "What just happened?"

I am going to bed very early, can't stay up and watch tv with him either so I think that's effecting our relationship... which makes me cry.

I used topamax for a few weeks. At 75 mg it helped my migraine but also caused shortness of breath and heart palpations and insomia. I felt like I was on speed and was only getting 3 hours of sleep a night. I am off it now and feeling normal but now have migraines again!

Smiley, Topamax and other anti-convulsant meds can definitely impact mood. See this link:

TOPAMAX Oral

In which you can find the following passage:

quote:

This medication rarely may cause mood or behavior changes, such as anxiety, agitation, hostility, pressured/rapid speech, or thoughts of suicide. Tell your doctor immediately if you develop unusual (possibly sudden) mood changes.

So please have a talk with your doctor.

I was on Topamax (100mgs) for approximately 4 1/2 years. Last year I decided to quit because I was tired of having one foot inside of an Alzheimers Rest Home & the other foot on a banana peel.

I still have a few residual side effects from this drug but, not as bad as when I was taking it. When I asked my neurologist about this, she confirmed there were no studies done on the effects of this drug after long use & the age of the person.
I have kept my weight off along w/the other strange side effect-my body is very well toned w/o exercising. I am down to 125lbs at 5'8.

If you can stand the side effect, then go for it!

Good luck!

I'm a newby on this board and Topamax. I'm doing pretty well although I did call my dr today to see about a dosage increase. I have recently be diagnosed with chronic migraines and Topamax is the first daily med I have been put on. I start 2 months ago at 25mg am and pm and am now at 50 mg am/pm but still have noticed the past 2 days that the dull migraine is coming back. It sounds like I have room to work with.

Numbness and tingling in the beginning (for about 2 weeks with each dosage increase), loss of words/spelling, tiredness, but other than that the side effects really have been fine so far. I've lost a couple of lbs but that is also something I've been trying to do so I don't feel that is from the med. I really don't feel like I've lost my appetite but I don't feel like I need to eat as much. It could be a mental thing, though too.

A friend of mine on the other the hand has had severe weight loss. I'm actually getting very concerned. She has gone from 133'bs to about 90 lbs. She seriously looks like she has an eating disorder (she claims it is from the meds entirely). People do not blieve her.
I've already told my husband not to let that happen to me. She does not look good at all (and she still gets migraines). But she is affraid to gain her weight back.

I was on it for a few months. For the first time ever, I had "real" migraines (I mean with head pain). Actually I woke up with a headache the second day of meds and I still have it I also had trouble spelling, which I know sounds bizarre, but it happened. And of course the tingling, which I was willing to put up with if it turned out to be my miracle drug!

That said, it seems to work wonders for some people. Maybe you're one of them!

Hi, Michiganderrdh, welcome to the forum. We're glad you found us.

Here's an article that may be of interest to you. I'd encourage you to share it with your friend, and ask your friend to join us on the forum, as well.

Migraine Preventive Medications - Too Many Options To Give Up!

Have you had a chance to take a look at the Start Here folder? If not, please take a few minutes to read the information there. It will help you to get the most information and enjoyment from your use of the forum.

Welcome again!

Welcome to the forum!

I'm glad to hear you are doing well on the Topamax.

As far as your friend, I can see how Topamax can make her lose a lot of weight. She should really talk to her doctor. Weight loss is a possible side effect....sometimes it's severe.

And, if she is still getting very frequent Migraines, she may need to try something different, add something......But, she really needs to go to a doctor about the weight issue. 90 lbs is not healthy!!!

Maybe you want to pass along this site to her?

See ya around!

quote:

Originally posted by michiganderrdh:
I'm a newby on this board and Topamax. I'm doing pretty well although I did call my dr today to see about a dosage increase. I have recently be diagnosed with chronic migraines and Topamax is the first daily med I have been put on. I start 2 months ago at 25mg am and pm and am now at 50 mg am/pm but still have noticed the past 2 days that the dull migraine is coming back. It sounds like I have room to work with.

Numbness and tingling in the beginning (for about 2 weeks with each dosage increase), loss of words/spelling, tiredness, but other than that the side effects really have been fine so far. I've lost a couple of lbs but that is also something I've been trying to do so I don't feel that is from the med. I really don't feel like I've lost my appetite but I don't feel like I need to eat as much. It could be a mental thing, though too.

A friend of mine on the other the hand has had severe weight loss. I'm actually getting very concerned. She has gone from 133'bs to about 90 lbs. She seriously looks like she has an eating disorder (she claims it is from the meds entirely). People do not blieve her.
I've already told my husband not to let that happen to me. She does not look good at all (and she still gets migraines). But she is affraid to gain her weight back.

Topamax is one of the few drugs I can take and tolerate, but it's been a long, hard road. The first neuro I saw threw 200mg at me and said "call me in 4 months". I thought I was going insane. I couldn't remember my children's names, I lost 30 lbs., I called my husband by the dog's name (fortunately, he was okay with that and answered me) and I was a mess. The final straw was when I was going to get a hair cut and I forgot where the salon was on my way there. I don't see that dr. anymore.

My current neuro started me on it again, on very low doses (15mg at a time) over a very long time. I'm now up to 80mg, split into 2 doses. I lose a word now and then but it's not bad. I have tingles in my feet but that's manageable. And I call everyone by their right names.

I know when my Topamax dosage gets too high, because I cry and have mood swings. My neuro knows that's when it's time to lower my dosage. So far the 80mg seems to be working.

I still have frequent migraines, so my doctor and I are searching for another drug to add to the Topamax. I will say that the migraines are less severe on the pain scale and respond much better to any abortive I may take.

I hope it works for you.

Karen

I took Topamax twice and had to discontinue after several months being unable to go any higher than 50 mg. I've listed my lingering side effects here, but the most prominent were extreme forgetfulness, feel dopey, extreme fatigue, and blurry vision requiring an opthalmologic checkup for glaucoma. I was okay, but the opthalmologist said I had become either temporarily or permanently more nearsighted as a result of the Topamax, as he had tested me just before I used it and my script had changed. He told me to come back after I hadn't been on it for some time.

It was only after reading these posts (am I still forgetful?!) that I remembered the REAL reason that prompted my going off. I have major depression and no antidepressant does anything more than bring me to a level point from the deepest point of depression. When I was on Topamax and on a level point with an antidepressant, my depression severely worsened. It was all too much, because at 50 mg the Topamax was having no effect anyway, so it was discontinued.

I wish it had worked because I've heard of some success stories here.

I was on Topamax for almost a month. I started with 25mg a day and still had my weekly migraine. Went up to 50 mg and still had my weekly migraine. The side effects weren't too bad at this point, terrible taste in my mouth, some foods didn't taste the same. A little bit of tingling in my hands but that went away.

I went up to 75mg and that is when my problems started. I couldn't eat. My stomach felt nauseous all day every day and I had diahrea. I did loose weight which was great because I had gained about 10 lbs. while taking amitriptyline. But like I told my DH, it is easy to loose weight when you can't eat anything. I can't see taking a medication that is going to make me feel that bad.

I am now trying a beta blocker and am hoping that it will work with few side effects. If not, then I guess I will go on to something else. Actually the amitriptyline worked great but I couldn't deal with the weight gain. I felt wonderful but was down because I was getting fat.

Janey

Hi Trish,

I was on Topamax for almost three years when the the med stopped working for me. It did wonders while I took the medication and I actually had very few side effects except for ONE! I developed kidney stones, lots of kidney stones. I've had one surgically removed and I currently have many in each kidney. Now I see a Urologist every six months (more if I'm in a lot of pain). If I were asked to start taking Topamax again I'd have to say no. My side effects just aren't worth it.

I'm currently on a large dose of Singular...five tablets a day. The jury is still out on this drug. I see my neurologist at the beginning of September. I'll be able to tell you more then.

Candy

After dealing with a period of greatly increased migraine activity (weekly or more) and a rather unexpected MRI/MRA result, my neurologist prescribed Topamax. I started at 25 mg in the morning and eventually ramped up to 100 mg daily, splitting the dose with half in the morning, half before bedtime.

Before going on topamax, I had resolved to change my eating habits and had already begun to lose weight. During the loading phase, I began to lose faster and right now am at about the lower limit my pcp placed (which is being co-ordinated with my neurologist). At 6' 1" I have gone from 172 to 160 since June - as I noted, this accelerated after starting topamax in July.

No migraines so far (since July) but there have been two episodes where I am sure had I not been on the topamax I would have had a full episode migraine (pain, side effects, the whole deal).

The side effects have diminished the longer I have been at target dose, but the forgetfulness, dry mouth and the tingling can be annoying - especially if I fall asleep and forget to take my bed time dose and have to double up the next morning. I am feeling generally better though and the side effects are diminishing so I am trying to ramp up my activities and "push through" the side effects a bit.

I retain an appetite - just can't seem to retain weight - or water!

Hi, pepe le pew! Welcome to the forum family.

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