Migraine

Every individual reacts differently to topamax. I have read horror stories and then have read miracle stories of people who are finally rid of horrible migraine headaches.

I have been on topamax for 4 weeks and have been increasing the dose gradually. I have had some side effects mostly a few days after I have increased the dosage each week but I have also drastically decreased my migraine headaches. I no longer have 5 migraine headaches every week. I have actually had a week headache free and usually only have one migraine a week. What a difference.

The side effects I have experienced are metallic taste of carbonated beverages, some fatique, dizziness, nauseous, weight loss,lack of appetite and short term memory loss. I have spoken to people who have been on this drug for years and many have said that most of the side effects go away once you are on the drug for a few months.

This drug is not for everyone but for the few who can take it, it is a life saver!

I'll chime in here to say that, at least for me, very slow titration has been the key. When I first started on 12.5 mg in mid-March, it knocked me out. Exhaustion, couldn't think straight, dizziness, the whole shebang.

Within a month or so though, I had no side effects whatsoever! So I increased to 25 mg a week ago, and I'm feeling the same original effects but am hoping they'll go away again.

It's extremely tough, and while I'm absolutely not tooting my horn about my occupation or anything my law practice has been greatly suffering for the past few months due to, first, untreated migraines, now topamax side effects.

At this point, I've made the not-so-happy decision that I will allow it to continue to suffer for as long as it takes (within reason!)to get back up to a therapeutic dose of topamax. I'm reducing my hours (and income!) so that I can muddle through the side effects.

Anyway, for me at least, I'm hoping that toughing it out and giving it time enough for the side effects to wear off will be worth it in the long run. As my (recently late and dear) mom would always say, "You play the cards you're dealt." I don't really like my hand lately, but I don't have a choice in the matter either, so "them's the breaks" I guess! (forced smile there)
Beth

My wife has been taking topamax for quite a while as a mood regulator together with anti-depressant drug. Do any of the users of this news group have read any report about the possibility of topamax causing pulmonary thromboembolism? If so, I would like to read more about that. The reason for my request is that my wife has recently developed pulmonary thromboembolism,and so far we have not been able to identify the reason/cause of this problem. She does not fit in any possible profile. Thanks for your comments and help.

Hi Walter! I read your post and thought, Topamax has that as a side effect, it must if DVT is a side effect. It can cause clots, kidney stones, among other things. I found this website with a little update through the fda - you have to scroll down but it does mention pulmonary thromboembolism as a possible side effect. Here is the link if you would like to see for yourself. - still I would not say that it was definatly caused by the Topamax, that is obviously for a doctor do decide or tell you about. Hope this helps! Take care!
Eileen
http://www.fda.gov/medwaTCH/SAFETY/2005/jun05.htm

Walter, I'm so sorry to hear your wife is suffering with this. I didn't do any research on Topamax, but I do know there's at least one psych journal article linking Remeron and Risperdal (antidepressants) use with pulmonary embolism as a very serious side effect.

Which antidepressant is your wife on?

Topamax side effect I've had, right from the start, is a dry cough, ONLY AT NIGHT. It wakes me up at least twice a night, & goes away if I chew up a cough drop. It's ruining my sleep. Of course, I forgot to tell my neuro about it, as I was so delighted with the decrease in frequency & severity of my migraines.
Recent side effect (I think) is depression & fatigue. These are partly due to my DH totalling my pickup, which I dearly love. Of course, we're not going to get enough for it to get anything like it, & we really need a full-sized truck anyway (it was a 2000 Dodge Dakota Quad Cab). And, we're coming up on the end of the school year, so are in a madhouse of activity, including statewide standardized testing starting next week & running for 3 weeks.
Am going back to bed.
Rebecca

quote:

Originally posted by newbattleaxe:
Topamax side effect I've had, right from the start, is a dry cough, ONLY AT NIGHT. It wakes me up at least twice a night, & goes away if I chew up a cough drop. It's ruining my sleep. Of course, I forgot to tell my neuro about it, as I was so delighted with the decrease in frequency & severity of my migraines.
Recent side effect (I think) is depression & fatigue. These are partly due to my DH totalling my pickup, which I dearly love. Of course, we're not going to get enough for it to get anything like it, & we really need a full-sized truck anyway (it was a 2000 Dodge Dakota Quad Cab). And, we're coming up on the end of the school year, so are in a madhouse of activity, including statewide standardized testing starting next week & running for 3 weeks.
Am going back to bed.
Rebecca

You too!!!! I only got this strange side affect 2 months ago.
I am currently being weaned off of Topamax after being on it for 4 1/2 years.
My Neurologist didn't relate this cough to Topamax. Couldn't explain it though.
My Neurologist did mention, when Topamax was being tested, there were no testers in *my age group* (I am 56) nor any going through peri-menopause or in menopause.
Another reason why I was being taken off.

I am a smoker who just had a complete physical done which included a 4 hour stress test which I passed w/flying colors. Lungs are clear, heart arteries not clogged & all the blood tests confirm I am still going through peri-menopause w/low colesteral to boot!

Except for the migraines, the Topamax side effects I am healthy as a horse.

Hi. I've been on Topamax for about 2 months. I'm taking 50 mg twice a day. The only side effects I have, now that you mention it are the tingly feet. Is it that I'm on a lower dose than most? Or am I just lucky? I had the loss of words for the first couple weeks only until i got used to it. now i notice that when i'm overtired I get that way as well, but that's it.
Also, I'm hoping for the weight loss that comes with it! but that hasn't happened either!! I am going to ask my Dr. to increase it a bit as it has only somewhat helped my migraines...but any help with migraines is good help. can anyone help?

how much topamax are you taking?

quote:

Originally posted by bsr:
Every individual reacts differently to topamax. I have read horror stories and then have read miracle stories of people who are finally rid of horrible migraine headaches.

I have been on topamax for 4 weeks and have been increasing the dose gradually. I have had some side effects mostly a few days after I have increased the dosage each week but I have also drastically decreased my migraine headaches. I no longer have 5 migraine headaches every week. I have actually had a week headache free and usually only have one migraine a week. What a difference.

The side effects I have experienced are metallic taste of carbonated beverages, some fatique, dizziness, nauseous, weight loss,lack of appetite and short term memory loss. I have spoken to people who have been on this drug for years and many have said that most of the side effects go away once you are on the drug for a few months.

This drug is not for everyone but for the few who can take it, it is a life saver!

Hello and welcome!

Here's the deal on the dosage of Topamax for Migraine prevention. It's recommended that it not be increased more than 25mg per week and be taken in split doses as you take it. The suggested top dosage range for Migraine is 100mg twice a day. However, if that dosage is helping, sometimes a higher dose is tried. If the higher dosage doesn't make a difference, it's recommended that you go back to 100mg twice a day and add another medication or, if you and your doctor want to find a single medication for prevention, you taper off and try something else.

On the tingles -- you might want to talk with your doctor about a potassium supplement. This will often help, but shouldn't be taken without talking with your doctor.

On the weight loss issue, it's a potential side effect. The majority of patients do not lose weight. Those who do, lose an average of 2.3% of their starting weight before the effect levels out. If you were going to have this side effect, you probably would have by now.

Hope this helps!

quote:

Originally posted by balts:
Hi. I've been on Topamax for about 2 months. I'm taking 50 mg twice a day. The only side effects I have, now that you mention it are the tingly feet. Is it that I'm on a lower dose than most? Or am I just lucky? I had the loss of words for the first couple weeks only until i got used to it. now i notice that when i'm overtired I get that way as well, but that's it.
Also, I'm hoping for the weight loss that comes with it! but that hasn't happened either!! I am going to ask my Dr. to increase it a bit as it has only somewhat helped my migraines...but any help with migraines is good help. can anyone help?

Here is a question - I just started back up on the Topamax this week, I'm on the 25mg right now. Does anyone else have wierd dreams with this stuff? Is it just me? Before I went back on it, I never remembered my dreams or anything, now I remember them and have them every night. Anyone else?

Boy I had the list of symptoms/side effects: pins & needles on my body, my ataxia got worse (never had a good sense of balance), word recall got much worse (always had some difficulty), memory has been severely affected, poor appetite (I'm down to 100 lb which is crazy), dysgraphia/handwriting got worse, confusion, fogginess/zombiness, I already have no depth perception due to an eye condition (but I ended driving on sidewalks from time to time which I have never done before), but increase blurriness/on off, asthma got worse, increased hypnogogic hallucinations, severe sleepiness & increased disrupted sleep, felt kidney stones at beginning & had to drink lots of water since...increased anxiety, basilar migraines have been debilitating (lasting 2-3 weeks at a time.
The only thing that it helped with was my morning headaches. I have become more sensitive to my triggers and now I get stiffening/seizing in my limbs with sudden, intense headaches...this also happens at night & I wake up frequently...relaxation techniques have helped somewhat. I also have become more senstive to smell & get burning smell/taste from time to time. It also increased my GERD, nausea & dry eye.

Just annoying? Well one thinks getting fired, becoming incompacitated for the majority of the month, wondering if I can function at job again (I am a teacher and therapist which requires strong cognitive skills), having difficulty getting through day to day, having my sleep problems & basilar migraines go out of control, getting slight one sided weakness, still having cognitive problems (6 days after last dose), low impulse control, increased worsening of executive function skills, & developing new weird problems such as stiffening/seizing of limbs & waking up vibrating just annoying...

Yes, in my experience Topamax did something weird to my sleep...I always had vivid dreams & hypnogognic hallucinations, but it was like a kailedescope in my brain or as if I was tripping on LSD.

I wonder who was in there trials? I'm suspecting that Topamax does something weird to people with basilar migraines, AD/HD primarily inattentive, partial seizure disorders (that are not temperal lobe epilepsy) & mild cerebral palsy. It certainly magnified all my previous conditions tenfold & has made me much worse. It makes me question if Topamax can cause brain damage in certain people.

BTW, I was on 100 mg at my max...I had major side effects right away on 25. I was on it for almost 4 months. I drank lots of water & was careful of my electrolytes (was tested,no deficiancy) so that not the cause of all my symptoms... My doctor pushed me from 50 to 100 in one night & when I was having a severe basilar migraine, the doctor said to take a triptan, which ended up causing me to have a "seizure like" episodes where my arm clenched up w/electric bolts at work which got me terminated.

I took my second dose of Topamax last night, 25mg. I got sicker than a dog, not being sure if I had the stomach flu or what was going on. I am not going to continue the medication. Who needs to feel like this on a nightly base? I am supposed to increase it weekly by 25 mg until I hit 100 mg. By then I will probably be bedridden and not able to function or work. This is a very powerful drug and screws majorly with your brain. It's an anti seizure drug and unless your migraines cannot be treated with Maxalt or Imitrex...I'd stay away from it. I certainly will.

Hi Suze. Welcome to the forum - glad you found us.

You raised a good point regarding topamax or the flu. How do you know which one you had? Yes, Topamax is a powerful med, but to say it "screws majorly with your brain" is not really fair. This drug has given many people their lives back, from a Migraine point of view. Taken under doctors instructions it helps many, many people.

The POTENTIAL side effects are just that, potential. The FDA would never be able to approve any drug if everyone suffered every potential side effect all the time. Remember, it can take 6-12 weeks to reach the proper dose of any drug, also as long for the potential side effects to go away.

Just some things to keep in mind when talking about medications. What works great for some may not work for others, but many, many people need more than triptans included in their preventive plan.

Please keep us posted on how you are doing, and we hope to hear more from you.

I have been on Topamax for quite some time now and take 100 mg per day. I thought my side effects would never go away! But now every day is a wonderful day. I wake up migaraine free and live a normal life. Yes the side effects were a menace for a while and when I entered this forum I was concerned and had a few that I was concerned about. But they have now subsided and I could not be happier, I have also now switched jobs and I also wonder if that had anything to do with it. I would recommend to anyone that had severe migraines such as I had that could at least deal with the minor side effects, not anything such as sickness that it was much worth it to be where I am at today!