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Need help in deciding on trying Topamax

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Posted 10/14/2004 2:21 AM (GMT 0)
My family doctor wants me to try the preventive medicine Topaxax.  I have read the side effects and they scare to me death.  I would like to hear other peoples experience with Topamax and maybe this will help me feel a little better.
Posted 11/4/2004 6:57 PM (GMT 0)
I've had a difficult time with Topamax s/e's....mostly the memory issues. YOu can read the PDR list of side effects. However, even with the difficulties, I still think it was probably worth it. Some people say Zonegran is slightly better. It's a similar medicine. My doc disagrees with this. But like I said, others have told me differently. I am trying to reduce my Topamax dosage to keep the s/e's at bay. It's a very tricky drug and there are days it drives me really crazy. The s/e's are very tough fir me. Other's have not had such a difficult time. You never really know. It's just that migraines are really awful too. Don't forget to take CoQ10. STudies show that it helps migraine patients and it is natural. This might help you be able to take less prescription meds.
Posted 12/17/2004 6:15 AM (GMT 0)

I have taken Topamax for a few years now, just recently quit...as I needed to try something else. I will tell you that with Topamax I did have some memory issues and tingling in my arms and more so my legs.

Keep in mind that I know SEVERAL people that have had a serious reduction in migraines while taking Topamax.

Talk to  your doctor, see what they recommend and remember if you do start taking it...you can weigh out the benefits with the side effects and you can always stop taking Topamax (loving called "dopamax") if it is not providing you with relief or there are too many unwanted side effects from it.

Sara

Visit my website, and sign the guestbook (We are working on email support for those who are too far to attend...)

http://home.insightbb.com/~shelbyville-headachesupport/headachesupport.index.html

Posted 12/29/2004 9:29 PM (GMT 0)
I just today saw your question re: Topamax, and wish I'd seen it sooner. I've been a psychiatry RN for 23 years, and took Depakote for migraines before Topamax was available. Recently I was diagnosed with Fibromyalgia, and it turns out that the Migraines I started to suffer in the 90's were just an early stage of my FMS complex, the other things have finally come in now. Anyhow, I had to choose between Neurontin for Fibro pain and continuing to be on Topamax for my migraines, because they both do about the same thing. Topamax also treats FMS pain. I chose to stay on the Topamax, because it has been a lifesaver for me. If I didn't take it, I'd be disabled with migraines, and OBESE from the Depakote. I'd put on 40 pounds with it, and it all came back off with the Topamax, PLUS I got GREAT headache control. From one or two every two week to one every 4 months or so. It's awesome. I do not have much in the way of side effects. A seldom and slight tingle in my fingers is NOTHING compared to the stroke-like pain of migraines. A little memory loss, which I may not even have, is NOTHING compared to the agony of my left eye feeling like it's going to rupture. PLUS both tingling and memory loss/confusion ARE part of Fibromyalgia so it would be premature of me to blame those on the Topamax. For breakthrough migraine pain in the occasional headache brought on only as a delayed reaction to very severe stress (my dad's funeral) I use Maxalt. Other meds have come and gone in favor, but I still find sublingual Maxalt to be the most reliable. But one must use it and get in the bed, don't take it and stay up or it's wasted. Well, that's my vote. But I'm not a spook about side effects. I'm a pretty brave old broad. Like to avoid addictive meds, but believe in using things if they work, not in suffering, and not in using unproven and untested things. I'm still going to take a little Aleve, at least until they pull it. Wish you well. Take care. Pammi
Posted 1/26/2005 2:52 AM (GMT 0)
My daughter, at 16, was put on Topamax Sprinkle Caps last year. She has: PDD; Migraines (constant) with Auras and Sound Sensitivity; Epilepsy with what can only be described as occasional hallucinations; Dysgraphia; Dyslexia and a laundry list of other neuro problems.

It saved her life and our sanity as far as the headaches and seizures go. She takes no other meds and is using Topamax as a Monotherapy.

Are there S/E's? Sure, but so far we have managed to work around them and they don't outweigh the positive effect it has had on her life. Starting the drug, she was 'drunk' for about 6 days. I am talking staggering, silly, falling down, jumbled words, laughing out loud 'drunk'. The Docs warned us about this and we were prepared, although surprised by the intensity of the effect of Topiramate. After 2 weeks, she was pretty much back to her old self. Language was jumbled for about 4 weeks, although it wasn't that bad... generally a totally unrelated word used or she would occasionally just forget what it was she was saying.

After that she was functioning beautifully. The headaches stopped immediately for her. She did experience breakthrough at 3-4 weeks, but was on such a low initial dose we could bump her up a pill easily and successfully.

One thing we were NOT warned about in the beginning and it is critical: The body does not regulate to heat once one is taking Topamax. Heat and exposure to sun is a major issue as the individual can easily become overheated. Water, water water, shade, shade, shade, cool, cool, cool is the mantra.

Carbonated soft drinks and sodas taste totally disgusting to her now. If she is tired/stressed/overwhelmed, when she takes a pill she gets 'stoned' for a short while, and then the sensation wears off. If she is rested and unstressed, there are no S/E's when she takes the pill. No diet or food problems, no tingling ever experienced.

It works differently for everyone, depending on their health, other medical issues or meds and anything/everything else that can play a role. The most important thing is to be informed and have an MD who is informed and not just jumping on the "new and improved" bandwagon.

My daughter calls it Dopamax and swears by it. And, she is going away to College in the Fall... 5 states away. So for us, it has been a good thing.
Posted 2/3/2005 9:36 PM (GMT 0)
I was on topamax, I had some tingling in my face and feet. I had an upset stomach feeling for a few weeks but that went away. The only reason I got off of it was because it made me a real witch!! I was out of control. One min I was laughing and the next I was screaming. Plus I got several UTI that were caused by the topamax. Plus there is the worry of kidney stones. I guess all meds have their ups and downs you just have to decied what you can live with. I would still be on it if it didn't make me a witch.

 

Ashley

Posted 2/3/2005 9:41 PM (GMT 0)

Ash~

I can't imagine you being a witch devil

I know I was though, the bad thing is that I was on it a long time before I realized that was the problem. I thought I was just evil by nature!!!! ha ha

I had quite a bit of relief with Topamax and I am going to go back on it regardless of witchy-ness or not...I need some help right now. My migraines are out of control.

Sara

Posted 2/6/2005 8:42 PM (GMT 0)
 

eyes  Hi there I'm new too. I.ve been on topamax(dopamax)love that one! for over a year now and I feel like a total psyco *****. One day Im fine and a few days later I want to curl up and die. I have really notice my vision has gone for pot,and the tingling is definately there,and curiosity how is your S drive kinda personal I know but doesn't help to ask. If anyone can give me insight/advice/ideas write back before I go crazier. confused

Posted 2/9/2005 12:20 AM (GMT 0)

DizzyM~

I don't mind talking about that...I am a very sexual person by nature and during Topamax I didn't have much of a decrease in drive-if any! Some other medications have made a difference, mostly anti-depressants (with the exception of Wellbutrin) have sexual side effects.

I noticed more than anything that I was moody...which probably ruined my man's sex drive!!!! ha ha

I also had "pins and needles" and memory problems. I do have to say that I got off Topamax within the last few months, so I could try something else....and I have had more migraines now that I did with the "dopamax" ...so I am going to get back on the wagon soon! I say give it a try, see how things go and if the side effects out-weigh the benefits then move on to something else...Always talk to the Dr. First!!!

Keep us posted on how you're doing. I know meds can be tough, but some times it's worth sticking it out!

Sara

Posted 3/17/2005 8:32 PM (GMT 0)
I've been taking Topamax for 18 months and can't imagine life without it. I struggled through volumes of migrane meds before finding this little gem. Has it completely eliminated my migranes? No, so I take Frova as an add-on for the intense days. The only S/E's I've experienced are weight loss (which hey, I needed to lose some weight anyway LOL). I've encountered memory issues, but since I struggle with Fibromyalgia I can't really say if it's this med that's causing the issue or the Fibro. I've adapted by buying a palm pilot and using it to keep me on track with what I'm to do or where I'm supposed to be throughout the day. My family has learned to deal with my forgetfullness and help me handle my bad pain days.

Good luck in your decisions regarding this drug!


RacerRoni
Posted 4/4/2005 1:53 AM (GMT 0)
I was recently put on Topamax for migraines and bipolar disorder. It never even touched my bipolar disorder and I was so sick for weeks. I basically felt like I had the flu for three weeks. I stopped taking it and I still have problems with migraines. Any suggestions?
Posted 4/4/2005 8:44 PM (GMT 0)

Nuttyone~

Have you talked to your doctor? there are hundreds of possible preventatives that work for different people...some that even fight depression/bipolar. Just don't give up, there is always something else to try.

I will dig up my list and post here so you can do a little research on your own or just ask your doctor.

Hang in there and let us know how you are doing!

 

Posted 4/22/2005 12:01 AM (GMT 0)
I am new at this today. I just started topamax. I would apreciate a responce from someone as soon as possible please to let me know if the side affects I am having will usually lessen with time or do they usually stick around. I am taking topamax for constant migraines. I have been on many many drugs over the past 26 years and always had to stop because they either didn't help or the side effects were too bad. Depecote worked well for me if I wanted to be a very overweight zombee. I have not even reached the full dosage of this drug yet. I am in my second week working my way up. Should I stop now before I get hooked on it or should I stick it out for a little while longer?. I am scared of it. For one thing I have alot of trouble already with UTI's. I could really use some opinions on this thanks. Kit
Posted 4/22/2005 12:49 AM (GMT 0)
Kit...Thank You for stopping by. Welcome to HealingWell.com we are glad to have you!!!!

As for your question:
First of all do not change the dose, stop or start without your prescribing doctors ok. Second, with Topamax...give it time, it can be a great help to you IF you give it ample time. Please make sure you take it as directed with LOTS OF WATER. (that will help with UTI/Kidney issues-which I did have because I did not take with plenty of fluids)

Oh, just FYI...you don't get "hooked" per say on Topamax. You must taper up and down for safety, but not for addictive/dependent purposes.

I have to run but I look forwar to talking with you soon....
Sara...Forum Moderator
Posted 4/22/2005 1:29 AM (GMT 0)
Sarah thank you so much for your comments. I have to admit I am so afraid of this drug topamax. I am so drug sensative. For almost 2 years now I have learned the importance of drinking lots and lots of water. I got hooked on drinking a gallon of water a day and blieve me with this topamax I can tell I need it. I am still thursty at the end of the day. I have to run thanks Kit
Posted 4/22/2005 1:41 AM (GMT 0)

You are very welcome...as with everything else, if you run into anything funny...do not hesitate to call your doctor or pharmacist to ask about side effects. It's better to be safe than sorry. (Cheesy saying I know, but it's true)

Keep in Touch!

Sara

Posted 4/27/2005 6:41 PM (GMT 0)

dizzym,

I am not sure what all symptoms you have had but I was diagnosed with migranes by my family dr and then went to see a neurologist who checked me over for my headaches and then looked in my eyes and said I had intracranial hypertension, did a spinal type and it was for sure and they put me on topamax that day.  But the symptoms of this is awful headaches and vision loss and when I was reading your post this sounds just like what other people with this have described.  You might want to check into on the net.  It is something that dr's don't understand very well I was just lucky and got a dr they understands it.  But again not knowing what symptoms you have you might want to check this out since you do have headaches and vision problems, that is what mine started with and according to my doctor if not treated can cause blindness. You can email if you want to know more

[email protected]

"dopamax user and feel stupid most of the time"

dizzym said...
 

eyes  Hi there I'm new too. I.ve been on topamax(dopamax)love that one! for over a year now and I feel like a total psyco *****. One day Im fine and a few days later I want to curl up and die. I have really notice my vision has gone for pot,and the tingling is definately there,and curiosity how is your S drive kinda personal I know but doesn't help to ask. If anyone can give me insight/advice/ideas write back before I go crazier. confused


Posted 5/24/2005 7:04 PM (GMT 0)
I am new to this site - but I too have been on Topamax for over a year now.  The doctor today told me she wants to up my dosage.  I am still getting headaches and they have become more frequent again.  I have one a week for the past 3 weeks.  As for the side effects, I haven't really noticed any side effects from the Topamax.  To counter the headaches when I do get them, I take Frova.  It seems to generally work.  If I don't take it right at the onset though, nothing will work but a trip to the Emergency Room.  I have tried other preventative medications before I started the Topamax - Verapamil made me swell up like a ballon in my hands in feet.   
Posted 5/31/2005 2:17 PM (GMT 0)
I am on topamax 200mg daily, I had to build my way up to the dose. The side effects that I had are tingling in hands fingers numbness in face especially around mouth and nose,and weight loss i'd say about 25 pounds. As for the crying spells that others mentioned I had none of that it actually helped me with my depression and I was able to come off of prozac. I have been on it for over 6 months now and the tingling has gone away and the weightloss has platued...my my headaches have gone from 5-6 a week to 2 maybe 3 a week so it was made a great big difference in my life!! I take it a night before I go to bed. I hope you get the same results!! Good luck and let me know
jess:)
Posted 6/22/2005 9:17 PM (GMT 0)
I am on my second try at takihng topamax.  The first time I took it my dosage was very high.  I was feeling very run down and sometimes felt like I could not put one foot in front of the other.  My family doctor did blood work and my white blood count was down the drain.  He thinks the topamax did it.  I was taken off it completely and the blood cell count went back up.  During the time I took I saw no relief in the pain or reduction in the number of migraines.  I am going to a different neurologist now and he has started me on it again at a lot lower dose.  I feel okay but still no difference in migraines.  The only other thing I can tell you is keep well hydrated and stay out of direct sunlight except for VERY short periods of time.  Besides topamax I have taken depakote with no relief either.  I am new today and have a lot to read here so I may find the answer to this but what else is there to take to help with prevention?

Dan

Posted 6/22/2005 11:48 PM (GMT 0)
Dan, Welcome to HealingWell!!~ that's great advice on the Topamax! Thanks. I'm new to migraines, so I'm afraid that I won't be as much help as many of the others that are here~Just wanted to say hi! :)

Hugs, Teri :)
Posted 6/24/2005 1:57 AM (GMT 0)

Dan-

I have posted a whole list of possible mediations to discuss with your doctor. I will find that and post here also.

I have also been on Topamax (lovingly called Dopamax) twice now. The first time I started taking too much too fast-thanks to my not-so-knowledgable doctor. I felt numb in my arms, legs, feet and hands...I also had a hard time finding the right word and finishing sentences. I also had a little bit of problems with depth perception...I would burn my hand on the stove and hit my head on things...it was really goofy. However, the second time I took it I started at the lowest dose and very slowly increased. It took some time, but I did have a reduction in migraine frequency and severity (I noticed after my insurance ran out and i had to quit taking it) Good News is that I will have insurance again very soon and I am excited about starting back on Topamax, I need to start feeling better again.

Well, let me know how things are going with your treatment and how you are feeling.

Sara

Migraine/Headache Forum Moderator

Posted 6/24/2005 2:00 AM (GMT 0)

I will list a few things I have tried and you may ask the doctor about some of these or do a little internet research on your own.

Anti-depressants/SSRI: Wellbutrin, Zoloft, Prozac, Lexapro, Amitriptyline (Elavil), Noritriptyline (Pamelor), Norpramin, Sinequan, Tofranil, Paxil, Effexor

Anti-Seizure: Topamax, Neurontin, Depakote

Beta Blockers: Atenolol, Metoprolol/Lopressor, Nadolol/Corgard, Propranolol/Inderal, Blocadren

 

Calcium Channel Blockers: Cardizem, Cardene, Procardia, Nimotop, Verapamil/Calan

Triptans: Amerge, Axert, Frova, Imitrex, Maxalt, Relpax, Zomig

Ergots: Ergotamine, DHE Dihydroergotamie, Migranal

 

Others: Midrin, Duradrin

 

 

 

Ok, well that is a list I have put together. There are literally hundreds of combinations-and they all work differently for different people. Maybe you could take this list to your doctor and see what they suggest. I always do research on meds before seeing my doc. so I have an idea of what is available and possible side effects.

 

Sara

Posted 6/24/2005 4:44 AM (GMT 0)
I was recently was put on topamax for diabetic neuropathy and I'd be interested to hear if anybody else has been taking it for this or heard of anybody that has been taking it for that. 

Posted 6/25/2005 2:11 AM (GMT 0)

I have not heard of that...althought, I do know that Topamax is used for several different things...off label.

Sara

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