Migraine

Bella!!!!

OK. Now I want you to call your doctor as soon as you finish reading this because you saie you've noticed a change in your nearsightedness. That's myopia, and Topamax can actually cause myopia in some patients. That should reverse if you taper off it. Enough is enough. Please call your doctor and bring this to his attention at once?

quote:

Originally posted by goodqueenbess:
P.S. I forgot (how typical!) to mention a problem I experience on nearly a daily basis. It's not severely troubling, but I didn't have it before Topamax. About once a day or so, I'll have a little bit of loss of balance. If I'm standing in place, I may have to back up and regain my balance. If I'm walking, I may sway in my walking slightly as though I'm drunk, but only for a second (I don't think anyone notices but me.) At first I thought it was just "one of those things," but when it kept occuring I attributed it to the Topamax. I believe this may be the side effect they refer to as ataxia?

I also have noticed my near-sightedness has suddenly turned much worse, to the point where I have to focus and re-focus and look a few times at words at times in order to read them. This is not continual, but occasionally throughout the day. This really alarms me given the visual warnings about Topamax, but when I read about the visual warnings, they seem much more severe.

When I said in my previous post that "my drive to keep pursuing combinations of trials of preventive I've tried before is at its wits end" I meant that I've haven't seen ANY results in over 10 years, but I HAVE HAD tons upon tons of terrible side effects. That is what is beginning to bother me so badly.

I'm defintely going to taper off Topamax and look forward to seeing my doctor.

Actually, people having good results at 50mg/day is NOT rare. It occurred regularly in clinical trials.

quote:

Originally posted by goodqueenbess:
Migraineur...I know each person's experiences can be so radically different, but our experiences with Topamax seem a bit similar.

I, too, would like to taper down, but I DID do okay "enough" at 25 mg. My seriously problematic issues didn't start until I hit 50 mg. I had some very annoying side effects even at 25 mg, but not to the point where I felt like this.

I've read where some people can respond to even 50 mg per day of Topamax. Probably rare, but it can happen. Perhaps 25 mg of Topamax with another preventive would also work. I look forward to seeing my doctor. Thanks for your note.

Thanks, Teri. I'm calling the neuro now. You're an angel.

quote:

Originally posted by shrinkgirl:
I've been on Topamax for about 6 months, and I've tolerated it well, with moderate success in helping my migraines. It has helped the intensity and and has also made me more resistant to triggers like weather and crying. I did not have most of the cognitive side effects, but did have problems with sedation and the tingling in my feet. I take 150 mg/day, and for a long time, I only took 50 mg in the morning and the rest at night, because I was in a haze for about 4 hours after my morning dose. But those side effects wore off after about 4 months, and I'm now able to split my dose equally. I have noticed a very slight, but rather annoying effect on my driving, which has not worn off.

Have you tried Zonegran yet? This is another anti-seizure drug that is weight neutral and has a pretty decent side effect profile. A number of people here have had some success with it. I may try it myself at some point if my current regimen doesn't result in some improvement in the next couple months.

Robin

quote:

Originally posted by goodqueenbess:
MY QUESTION IS....are these side effects unhealthy (memory loss, tingling feet, dizziness, etc.) or just majorly annoying? Should they be gone by two months? THANKS!

I just finished reading up on the side effects of Zonegran & noticed that although it is another drug for epelipticy it does not have all those devastating side effects like Topamax.
The only side effect I found sort of "funny" if you want to call it that was "Unusual Thoughts." Does this mean I am going to start having wonderful sexual fantisies.

My next Neurologist appt is not until the end of April. Will be bringing this drug to my doctor's attention.

You're very welcome. Please keep us posted?

quote:

Originally posted by goodqueenbess:
Thanks, Teri. I'm calling the neuro now. You're an angel.

I was on Topamax for about 5 months and had pretty much all the symptoms that have been described here. I have been off of it for the last 5 months and still have issues with word-finding and memory loss.

I did find that taking potassium supplements (with doctor prescription) helped immensely with the word-finding, memory issues and tingling. With the exhaustion, drinking an electrolyte drink (like Gatorade) helped alot. My family seems extremely sensitive to an electrolyte imbalance that is just now being attributed to Topamax (hard to get doctors to listen to that though).

I eventually quit Topamax because of these symptoms, though mostly because I just felt sick most of the time. I was also scared to drive, for fear of injuring someone since my depth perception was becoming worse and worse (to the point that I was bumping into curbs and once another car when parking). It was also hard to refocus my eyes (eyesight would remain blurry for 1/2 hour or more) if I spent extended lengths of time doing focused distance work (I like to knit).

I do not want to talk anyone out of Topamax if it works for them (my dad is having good effects on it, even with the side effects). Just thought I would share what I learned from taking it myself and my family taking it.

Hi smartcat and welcome MyMigraineConnection.

Thank you for sharing you story with us. It is important to realize that each person reacts differently to medications. Some people have great success with one med while others are unable to tolerate them.

We look forward to hearing more from you.

Hello and welcome!

Thanks for a great post. The point about potassium supplements prescribed by your doctor is a good one. Sorry the Topamax didn't work for you. I tried it and absolutely would not drive while taking it. Felt that I was too dangerous.

Have you found effective preventives yet?

quote:

Originally posted by smartcat:
I was on Topamax for about 5 months and had pretty much all the symptoms that have been described here. I have been off of it for the last 5 months and still have issues with word-finding and memory loss.

I did find that taking potassium supplements (with doctor prescription) helped immensely with the word-finding, memory issues and tingling. With the exhaustion, drinking an electrolyte drink (like Gatorade) helped alot. My family seems extremely sensitive to an electrolyte imbalance that is just now being attributed to Topamax (hard to get doctors to listen to that though).

I eventually quit Topamax because of these symptoms, though mostly because I just felt sick most of the time. I was also scared to drive, for fear of injuring someone since my depth perception was becoming worse and worse (to the point that I was bumping into curbs and once another car when parking). It was also hard to refocus my eyes (eyesight would remain blurry for 1/2 hour or more) if I spent extended lengths of time doing focused distance work (I like to knit).

I do not want to talk anyone out of Topamax if it works for them (my dad is having good effects on it, even with the side effects). Just thought I would share what I learned from taking it myself and my family taking it.

I began taking Topamax in Feb. 2005 as a way to bring my disease under some kind of control, not knowing if it would work or how it would work for me. I began with the normal "intro" doses to work up to the 100mg level. My DR. said we may be able to stop at 50mg, but he just figured with my history, I probably wouldn't respond at 50mgs. With each dosage, it took my brain 3mos to go thru the intro phase and then adjust to the the new drug level, before we (my Dr. and I ) could tell if I was getting any help or not. i had terrible cognative effects, blurred vision, memory loss, extreme fatigue, taste aversion, medical anorxia, heat intolerance, the tingles, many things. It was tough, scary and not fun. But my Dr. monitored me. We worked to find the theraputic dose for my brain, one that worked with my individual brain chemistry,and as we did many of the side effects began to drop off as my brain adjusted and brain chemistry began to be more "normal". My dosage is 300mg daily, 100mg am -200mg pm. It does not stop me from having migaine attacks. I have severe migraine disease, often status migrainus. it has stopped the status migrainus from weekly/monthly to maybe a few times a year. And the level of pain with attacks is not as high most often, abortives work more readily than pre-topamax.I make sure that my potassium levels stay suffient which wards off the tingles for me (talk to your doctor first before taking supplements) because I take such a high dosage.I'm writing this because Topamax IS a strong drug, but that doesn't mean be scared of it. It does mean understand and learn about it. Some people may say, 300mg are you crazy!!! No, I'd be crazy not to use what worked for me. We are all individuals. Sometimes, even though we don't like it, it may take a while to find what works for our bodies. Some drugs take a while for our bodies to adjust to before you and your doctor know if they are going to work, like topamax.It took 12 mos to go thru all the dosage levels, giving my brain time to adjust before reaching the 300mg dosage. i've been on that for a year now, but it was at least 6mos. of being on that dosage (3mo for brain to adjust, 3mos to see if attacks were being affected and side effects were dramaticly different) before i knew it was worth the staying on and the money. it's possible that I'll have to go off of it or it could stop working for me as my disease progresses, but for now i don't live in the ER.

Welcome to MyMigraineConnection kenkay. It certainly sounds like you have a handle on Migraine disease and are working with a doctor who listens to you. As you know that is so important.

What is Status Migrainous? Please be careful when it comes to this condition, it can increase your risk of stroke.

We look forward to hearing more from you.

I've been on Topamax for almost two years now, 50mg. When I started it, I was moving from Depakote which was horrid to this new one. My neurologist gave me this enormous laundry list of possible side effects from the cognitive ones, to the tingling, to the taste changes, to possible mood difficulties, to glaucoma. The neurologist told me that if I experienced any of these and they became too much or if I experienced any of the cognitive/mood effects to call them immediately and immediately discontinue taking it.

It scared me pretty bad. I told everyone including my boss what was about to be happening because my job is one where I have to be able to hear what my client is saying and repeat it back exactly. Loss of word finding would have been disastrous.

As it turned out, all I really had to worry about was severe lack of appetite (I dropped 60-80 lbs in less than five months; I call it even since Depakote gave me those pounds almost as fast), the tingling which went away after about three to four months, and the taste alterations - I really miss pop, hotdogs, and pizza.

I can increase my dosage to 100mg if I need too with my neurologists approval, but so far it hasn't been necessary. And Topamax allows me to look forward to a good two to two and half migraine free weeks every month. Previously, I was lucky to string five days together. And when I do get attacks, they are greatly reduced in severity. I can sometimes control them just with OTC meds.

LONG POST!!!!!!

I started medical school in August of 2006 taking a daily 300mg dose of Topamax to prevent migraine. When school began I couldn't understand why I was unable to concentrate, remember things I had just heard, bring words to my mouth, pay attenting,etc. I was having major cognitive problems. This was NOT normal for me. I was usually a student that could go to class and soak in all of the info with little studying required. I could barely pass with a tutor. I was beginning to think I just couldn't cut it in medical school, regardless of my past academic sucesses.
I started to do some research on Topamax and found many testimonials like the ones on this site and was actually relieved, maybe I wasn't stupid, maybe it was the STUPIMAX! I tapered myself off of the medicine and felt like I had come out of a cloud. I had my brain back (as well as my 5 day a week headaches)! However, by this time it was the middle of October and I had an uphill battle on my hands regarding my academics.
The administration suggested that I take a medical leave of absence until August to get my migraines under control. This way I can go back and redo the semester with the opportunity to do my best. Topamax caused me my first semester of medical school and $10,000.
I am now traveling from Louisville to Chicago (5 hours or a plane ride) to the Diamond Headache Clinic to try to get these under control so I can try to focus on learning how to take care of others rather than being ill myself.
Good Luck to all of you and be careful with those side effects. They can be as bad as the headaches.

Welcome to MyMigraineConnection. What an awful thing to have gone through. Migraine disease at its best is a manageable condition, at its worst debilitating. Thank you for sharing your experience with us.

It may be of some consolation to know that some of our members travel over eight hours to get to their headache specialists. Do you already have an appointment with the Diamond Clinic? Would you let us know how you make out there. Something to keep in mind is that there are over 100 different medications to prevent Migraine attacks. For more info click here:http://www.helpforheadaches.com/articles/prev-meds.htm

We look forward to hearing more from you.

I really hope you find something that works for you. It sounds as though I am fortunate on two counts when it comes to Topamax:

1. It doesn't seem to hit me cognitively

2. My neuro seems to be very familiar with the possibility and will not hesitate to rotate me to something else should those effects start

Keep working on different approaches and hopefully you'll find something soon. I know what it's like to try to hold down college with barely controlled migraines.

Hello,

Wow! What a relief to find this forum today. I just started taking topamax about 10 days ago--I've been avoiding it for a month as i'm in school and the "doped-to-the-max" possibility has terrified me. The poor med student, i can't even imagine!!!

Anyway, I started at 25mg and I feel like I'm lost in a fog of confusion. I take it at night because I fall asleep right after taking it, and the fog doesn't usually clear until late afternoon next day. I'm supposed to increase my dosage by 25 mg/week which seems outrageous at this point considering.

i have 2 questions: do some people experience that the side effects go away after awhile (it doesn't seem so from the postings) like anti-depressants or should i just assume this is how it will be for the duration?

Also, I have menstrual migraines that don't seem nearly as debilitating (about 4-5 days each month, i'm miserable but can almost function) as the others here. My neurol. advised that i can probabably take topamax for 2-3 months and that it will "reboot" my system knocking out the migraines for some time. Has anyone ever heard of this? It seemed particular to menstrual migraines. Thank you!!!

Lauren