posted 03 January 2005 01:56 AM           

I started Topomax the beginning of November. I am currently experiencing severe gastro intestinal bloating and was in the ER twic last month. Doctor's couldn't figure out what was wrong, then noted that I had "back up". I have never had a problem before with this but I can tell you what, if it happens to one person on the side affects, it's me, and constipation is one. There are also issues with fatigue, irritability, severe loss of appatite. I just keep dropping weight [ I don't need to, I'm under 118 now and still losing]. I have stopped taking the drug myself and am going to see a stomach specialist tomorrow to rule out diverticulitis [my Mom had it]. I am so sick and had so much pain this holiday I put myself on a liquid diet until tomorrow-- it seems to be helping, but I am exhausted and praying for relief. I've asked all the doctor's I've seen, and two ERs if my symptoms could be related to the drug I am on and they all poo pooed my suggestion. My advice is read all the fine print and go very slowly. It has many bad side affects that might crop up [double vision] Stay hydrated because it's known to cause kidney stone.... and the list goes on.

PS. I was put on this for chronic migraines from car accidents suffered in the past five years [head injury in 2000]after losing my circulation to increased doses of Imitrex.
Hello everyone. I'm 57 and going to start Topomax. i'm nervous about the side effects. My neurologist recommended it, because I've been using Excedrin for 20 yrs. I was up to 6 to 8 excedrin a day and ended up in the hospital last week with a bleeding ulcer. so, no more excedrin, but my head is killing me. should I bite the bullet and start my topomax? Pat[/QUOTE]

posted 09 January 2005 10:30 PM            

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Originally posted by Lorrie:hello my name is carmen and im on topomax but right now 50 mg is not working so they are giving me 100mg for winter, but for me the food taste bad and im very moody, and sleepy that does not go away my doctoc told me i will wish you good luck
I am just going to be starting on topamax, so am glad to hear you have been headache free with it. First I have to gradually decreasee off of amitriptyline, and that has been a challenge (that is making me irritable/anxious and having difficulty sleeping.)

I will be interested to hear how you are doing, and hopefully your side effects go away and the stuff still works. Good luck!
Lorrie

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posted 09 January 2005 10:35 PM            

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Originally posted by egantwin:hey ther i just wanted to agree with you in what you were saying i have neurofribromatosis and i had 15 migrain a week, i started with topomax made me stop some of the migrain but im always wanted water, and, the food for me taste weird and im alwas tired but then im on 125 mg now but only because it is winter but boy im so happy, ladyluck from canada
Dear Lorrie, Well, It's been a couple of months for me. Unfortunately, I had a cluster of migraines during the week of my last period. I was up to 100 mg per day at that point and my neurologist thought I was doing good and wanted me to go up to 150 mg. It's been 2 or 3 weeks since then. I'm up to 150 and the side effects I was feeling (irritibility, some gas pain, some other minor things) have subsided pretty well. I still feel some tingling in my arms and legs once in awhile but it doesn't really bother me much.
I've had only one migraine in the past few weeks. I took an imitrex early and it went away quickly and completely. Normally that would be the start of a few days worth of headaches. I'm thinking I may need to go up a little more in dosage (to 175 or 200 maybe) My doc says they find the medicine most effective between 100 and 200 milligrams. I'm going to wait until I go through my next period and see what happens. Then I'll talk to him. I wish you continued success with your trial. Do you have any side effect complaints? If you do, hang in there. You'll prbably get used to them. I wish you many migraine-free days, weeks, and years! SIncerely, Eileen

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posted 09 January 2005 10:39 PM            

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Originally posted by Sue:dear sue yes after you take topomax you will not drink cokr or anythinh with fiz again i no the feeling good luck
I started taking Topomax about a week ago and immediately noticed that carbonated beverages taste flat. Only other side effect is that I feel quite tired/fatigued, but happily, no migraines since I started taking it.

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posted 12 January 2005 08:51 PM           

Anyway, I write to say to those of you who are starting out, if you can hang in there with the early side effects, they will pass. I take a small dose of 25 mg twice a day. But I should inform you that I also take 100 mg of zoloft in the a.m. and 100 mg of seroqual in the p.m. to help me sleep at night. But all I can tell you is that once I started topomax, 3 days later I had relief. The pain was gone!

I have found that right now I'm taking the right cocktail (medicine combination) for all my health troubles. 2004 was a good health year. No hospital stays, no bouts of depression, etc. Thank God, I'm maintaining.

posted 16 January 2005 08:58 PM            

Calico: I can share that Topomax has been originally given to me for Migraines but has inadvertantly helped me with my chronic back pain. This however took a while to work, and it didn't happen until I was at a specific mg, for a good amount of time. For me, this medicine is so foreign to the system that it is agitating each time I move up on the dosage. Therefor, the side effects can sometimes side track my awareness of the progress it is making for me. But - it has really been worth it, over all. I did want to mention though, in terms of the weight gain, that my primary physician, who specializes in women's medicine (and I am not saying this directing it towards your gender - I can't tell which you are - but more because it is an area that is easier for women to experience due to their physic), did warn me that in the same way that Topomax desensitizes the taste buds for hunger, it can also do the same for fullness. It also slows your whole system down, including your ability to burn calories. She cautioned me to watch my eating habits, and that I needed to eat, but also had to tell myself when to stop; due to the fact that I might not be able to feel when I am full - like my feet and hands (and maybe like what you are experiencing in your face sometimes?). Maybe this will be helpful, I hope? Also, I use "post it notes" to remember to drink plenty of water - it is so important in preventing kidney stones - that seem to be a very prevalent side effect on Topomax. Most importanty, stay on the boards - you will find people here that use this medicine everyday that can relate - and you too may be able to help someone!

Filo: I am worried about you. Can I urge you to get a second oppinion right away? Maybe print what you wrote on the board and give it to your Dr? I am not a doctor, but chest pain and dizziness does not sound good to me. Also, it sounds like you have a lot of responsibility, beyond just yourself. Does your Dr. understand this? They need to understand these things, right along with your immediate symptoms - especially if you have 3 children and lack that immediate support system that you sound like you really could use right now. Sometimes it can be easy to forget that we are trying to get healthy and we start to accept abnormal things that can do us more harm (see some of the conversation under "Topomax and Resistance Re: hiding in the dark"). CHEST PAIN IS NOT A NORMAL OR SAFE side effect! I would call your Dr. or the ER for that right away (like when you are reading this - even if you are not feeling it at the moment) and ask them what they think you should do. Will be thinking of you and sending strength and good karma your way.

Best Regards,
RJ

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Originally posted by Calico:
Hi, I have just found this site for the first time last night and to say the least it is very interesting and informative. I am 35 years old and have been on Topomax for approx. 3 1/2 months now, starting out at 25mg. and working up to 100mg., I was given the med. for carpal tunnel syndrome mainly, but was told by my neurologist that it would also help my migrains, "after your body adjust to the side affects of tingling in your arms and feet" Well to make a long story short my body has not adjusted to that side effect, when I finally got to 75mg. I stayed there for a month, then got brave enough to increase the amount to 100mg and the tingling was not only in my hands and feet but also in my face and to the point that all day long I felt like my whole face was numb, so I lowered my dose back to 50mg. and am at least able to deal with it. I have only had 2 migraines in the 3 months, my carpal tunnel is still terrible, and I have actually gained about 15lbs. I am one who needs to loose several pounds, not gain, and NO my eating habits have not changed any, there is not obvious reason for gaining ANY weight. Any suggestions would be greatly appreciated.

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posted 19 January 2005 11:17 AM            

I expierence some blurred vision, which is no biggies, but if it gets where you can't see at all, or if you feel like your eyes are goin to pop I'd be worried.

Sounds like you're titrating rather quickly though. I.e. It took me 2 months to get to 200 mgs. Generally my doc gave me a good 2 weeks in-between titrations to get used to the Topamax in my blood level....and to let the SE's subside enough to function. Lethargy...yeah you'll have that. It does help to take it at night, but to be honest....once they have you on the higher doses you'll learn to just live with it. (It will get to a point where they will start split dosing where you will take 1/2 in the am and 1/2 in the pm) Good news is it gets better......I poseted in the public forum ....you might want to check it out.....I cant' remember what I named it, but it was something along the lines of if the SE's really wear off or not.

posted 23 January 2005 03:46 PM            

DJ! Glad to hear things are working better now that you are dosing at night. Don't know what to say about the weight thing......What are you eating when you're eating? Are you compensating? Sometimes my body craves things like mass amounts of peanut butter now at times when I do eat...which isn't often....well we all know Peanut butter is high in fat and protien....get it? Just a thought.------ Oh, Yeah almost forgot, Topamax makes the metabolism go faster, not slower.