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I was on topamax for about 2 years. I took it for frequent migrai...

Posted at 9:42 PM on Sep 19, 2008 by fornickels, #34706
I was on topamax for about 2 years. I took it for frequent migraines caused by my sinus's. I had all the normal side affects but got used to it after awhile. The only one i didn't get used to was the hair loss. During this time I started allergy injections and now i'm up to my maintenance level. So i decided to ween myself slowly off the topamax. I have been off for about 2 months now and I have been fine on the headache side, but i have started to get other symptoms (i think withdrawal symptoms). They have progressively gotten higher in number as the days go by. First my hair loss has not stopped. I gained about 10-15lbs, I am edgy and climbing the walls all day. I have a really hard time relaxing. I recently developed horrible insomnia, and about a week ago i started having digestive problems including water retention, bloating, gas, irregular bowl movements, and acid reflux. And I've recently had bouts of tightness in my chest and throat which make it difficult to breath (lasts about an hour). I didn't have any of these symptoms while i was on the topamax (except the hair loss), nor did I have them before it. I am seeing an endocrinologist in a few weeks to make sure nothing on that front is causing any of this, but i really feel it's from taking and going off the topamax. If you can find other ways to deal with your migraines, DO!
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Reply about 1 year ago on Sep 20, 2008 by fromonetofour, #12589

Listen Oh my I am still on the topamax grind
know your pain! Now what do you take for your allergies? I take Zyrtec D and flonase I still have problems and I have been on and off topamax.I try to take the minimum , they wanted me on 300mg and I take 50 to 75 mg a day. Yes the hair loss. I can help you. I am hairstylist. There are supplements. One I am looking into, another one that I don't know if you need a script but it is something I am looking into. Keep the low dose of topamax. I know its an awful drug but it saves us migraine sufferers. have you been to Mymigraineconnecton.com I do know of some good websites. Are you taking any other meds? Are you staying hydrated ? You need to drink plenty of water, it is really important. I would like to help you with the hair loss supplements. I am working on this this week.When I find out where we can order them from or if I have to order it for you I will let you know , If you are interested. I know what it is like to lose your hair, I see it all the time. Most importantly. I got on a Total health and Wellness plan this helped me with my headaches. I controlled my diet and I fueled my body with pure Nutrition and Wellness. This has made me and my family a whole new lifestlye!I can give you more info on supplements this week. ok. I am a mother of 4, A soon to be 8 yr old and 5 yr old triplets , believe me I had migraines.My Neuro told me to meditate! HAHA Anyhow If you want info on diet and waht to take for hairloss I will get it for you! Please stay on a low dose of Topamax really , i mean it! I've dealt with this drug for 4 yrs.

Lori

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Reply about 1 year ago on Sep 26, 2008 by fornickels, #12786

Hi, Thanks for your help but I will not stay on this drug. After two years I've had enough. The hairloss was just the tip of the iceberg. It completely messed with my spacial awareness, gave me vertigo and made me sound like an idiot. Fortunately I do not get migraines very much anymore even without the Topamax (which I've been off of for the last 4 months). The allergy shots i get once a month (maintanence dose) help and I also take Generic Zyrtec. So the migraines are very seldom now.
I am on some supplements for my hair loss, but I have an appointment with a thyroid doctor (I have had an ongoing thyroid issue for 10yrs) and hopefully that will help with the hairloss. To be honest, the weight gain after going off has been the toughest (and the dizziness) But i am dieting and working out, and it's getting better, just taking a long time for the withdrawal affects to wear off.
thanks
nicole

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Reply about 1 year ago on Oct 15, 2008 by redautumn, #13481

A dr recommended topamax to me to help with weight loss and I also have had migraines ... I have been on Amitryptiline for 4 years and have had very few migraines and no cluster migraines since i started taking it.
I used to have several migraines everyday and couldn't eat, sleep or live any sort of normal life. I was at the point that between may and sept/oct I would have so many that i couldn't work at all. I started getting them in high school
and had them so badly that I missed alot of school as well. I had no idea at the time that there were meds to control them and owe my sanity and life to the Amitriptyline (it may be worth a try for you ) I take mine at night and started with 50 mg and am at 100mg now but i am told that it may cause weight gain (it didn't with me) I also tried taking different foods out of my diet and fount in the end that for me they were linked to the barometer (weather changes) and my menstrual cycle. hope this may help and Good luck with everything,

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Reply about 1 year ago on Nov 28, 2008 by chellega, #14883

Has anyone noticed significant water retention when trying to stop topamax? I am trying to wean myself off of the medication so my husband and I can start a family, but each time I try I, swell up terribly. Within a week of reducing the medication, my fingers, hands, ankles, belly, and face get very swollen and I gain about 7-10 lbs in water weight.

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