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Topamax and thyroid

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50 Side Effects posted for Topamax

November 17th
2008
7:33 AM

i was put on topamax for migraines back in aug 07.

well, i stopped it like 5 months ago. (2june 08) i still feel "out of it" like i'm here but im not. headaches came back but i would rather deal with them than all these side effects. i got severe panic attacks and nervousness, MAJOR HAIR LOSS, AGORAPHOBIA (FEAR OF LEAVING MY HOUSE CUZ IM SCARED TO HAVE ANOTHER PANIC ATTACK), i constantly feel dispatched from my family (i have 3 boys and a husband) every day i feel sick or tired, or both. which led me to stop the meds. (25mg am and 25-50mg pm) i weaned off over like 2 weeks (on my own cuz the neuro told me not to stop it and its all in my head.

i had to quit my job cuz of the panic attacks that just happen for no reason.

i still feel all the side effects even though i have been off topamax. hair loss, panic attacks, depression, "high" feeling all the time, cant hold a normal conversation. i have changed soooo dramatically from when i first went to the neuro and started this HORRIBLE DRUG. poor concentration, i don't feel like i want to be involved in anything- i just wanna lay on the couch with an ice pack on my head. i don't know what to do. my neuro doesn't know i stopped the drug and i was so mad at him for putting me on it that i didn't go to my last appt. now i have to wait until January to see him.

-- By purplerose81379 | Reply | (1) replies | Private Message me

September 26th
2008
11:06 PM

I have been on Topamax since Jan of 08 for complex partial seizures. I was very pleased with it at first but started having
some more unpleasant symptoms. My hair recently started falling out about two months ago in massive handfuls! I was
and am very upset about it. I did have the tingling in the hands and feet when I first started taking it and I don't drink sodas
at all which I did all the time before. I did not lose weight at first but did a couple of months ago when I got very ill with a GI
problem. I actually lost about 20 lbs in about a month. This is when my hair started falling out. I have had a lot of labs
drawn and my TSH was undetectable but my thyroid levels (T3 and T4 are normal) and my antibodies are normal as well so,
there is no telling what is going on?? I just want off of this medication before I am bald!!

-- By ajac199197 | Reply | (1) replies | Private Message me

September 19th
2008
9:42 PM

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!

-- By fornickels | Reply | (4) replies | Private Message me

September 9th
2008
2:31 PM

I started right out 3 years ago on 100 mgs. and within a couple weeks migraines were virtually gone! I thought it was a miracle! Only slight side affects for a couple years and only an occasional migraine but not a three day long one. So, I figure, small price to pay for all that relief, right? Now, for the last 6 months or so I'm falling apart! My memory is just gone! Sometimes I'm afraid to leave my house because I'm afraid I'll forget my way back home! I can hardly concentrate long enough to put a meal together and it just took me 4 tries to remember how to spell concentrate! Thank Goodness for spellcheck! I've lost 42 lbs. that I can ill afford to lose and I now I have started to have these anxiety things that I've never had before. I feel scared and nervous and no idea why. I was on a couple of drugs for allergies, a couple for arthritis and a vitamin. I dropped everything except the Topamax and the DR. put me on a 1/2 mg. Zanax twice daily for anxiety which seems to do nothing except make me sleepy. Now it seems all these side affects have just bloomed and I have this constant ache over my right eye which isn't a migraine but never goes away. I'm afraid to just stop the topamax because of what I've read about suddenly stopping. Doctors are no help, they won't even admit there is a problem. They just wanted to check my thyroid.It was fine.

-- By southernred3 | Reply | (3) replies | Private Message me

June 27th
2008
5:58 PM

I started Topamax in November of 2007 the usual 25mg and worked my way up to 150mg. I have always had pretty thick hair and now have hair loss in the widows peak and top part of my hair. Needless to say I am devastated. I have cut myself down to 50mg in the am and 50 mg in the pm. My Neurologist states that she has not heard of hair loss but even this web site and the drug company states that it can cause hair loss. I have with the help of a very good massage therapist determined that my migraines are cervical so I am seeking a second opinion and taking myself off this drug. Not worth the hair loss if I don't need to be on this drug.

-- By summergrl | Reply | (3) replies | Private Message me

April 30th
2008
10:51 PM

I took Topamax for 6 months. I am a control freak by nature and really liked the drug at the start when I took 25 mg.; however, like most people who take Topamax know, you increase the dosage until you get to 100 mg. By the time I got to 75 mg. I was a basket case. I did lose weight and I was really calm; however, I thought I had Alzheimer's. My short term memory was shot and was slowly effecting my long term memory. I was constantly at a loss for words and stuttering all the time. For someone like me who is extreme control freak this was very debilitating. I also had constant tingling on my nose (I know weird) and my fingers. My husband begged me to stop taking Topamax because he could see the difference in me. Like everyone else my Migraines completely went away and so I thought the benefits outweighed the side effects.. The doctor said that maybe 75 mg. was to high so he put me back to 50 mg. It didn't change. Finally after 6 months I was almost a vegetable. I stopped talking which is extremely unusual for me. I stopped hanging around my friends and family and wouldn't deal with my kids. My daughter finally came up to me and said I don't know who you are, but I want my mommy back. That was all I needed. I weened myself off and within 2 months was back to normal. Unfortunately, my migraines came back full force 4 days a week. The good news is that about a year later I was having a physical and the doctor said that my thyroid was off and needed to start taking Synthroid. I have to say I couldn't believe it, but ever since I started taking Synthroid my migraines have completely gone away. From having them 4 days a week to maybe have 1 or 2 a year since being on Synthroid. I have been basically Migraine free for almost 2 years. I highly recommend that people, especially women, talk to their doctor to see if their thyroid could possibly be causing migraines. I have had migraines since I was in college 20 years ago.

One thing I do have to say is that the company that manuf. Topamax listed all the side effects. It did say that Topamax could possibly cause Neuropathy, loss of memory, weight loss, etc... It also stated that the symptoms should disappear after 6 weeks; however, it some cases they didn't. I respect that they were honest with their research and were very clear in the side-effects. I have many friends who use Topamax and thank g-d for it everyday. They had no side effects from the drug and have been living happy lives.

-- By texdog | Reply | Private Message me

March 30th
2008
5:43 PM

I have been on Topamax for several years now for crippling migraines. I now take 125 mg at bedtime. I once tried to take myself off of it but, the headaches came back worse than ever So... I went back on. some say that it works because migraines are like a type of seizure. I sure don't know but I'll do anything not to have them like I used to. Recently at night my arms and legs get numb; sometimes one side sometimes both sometimes all I feel is my trunk. It is really scary, but more scary for me is the headaches with the intense nausea that accompanies them. You just can't function. Lately I also feel very tired too! Every one tells me it is just stress from work and "perimenopause" (just what I need more hormonal fluctuation to cause headaches) I really wonder if all this increased fatigue could also be the Topamax ... I mean I could easily sleep 11 hours per night if you let me! Has this happened to anyone? Did perimenopause complicate your treatment?

-- By tiredalways | Reply | (1) replies | Private Message me

January 27th
2008
1:09 PM

I was on Topamax for 10 days with a few minor side effects but nothing serious enough to quit it. My husband and I went to the library about 6pm. I am 46 and never wore corrective lenses but was noticing that the shelves farther away were blurry, I didn't worry too much since I had been having ongoing thyroid problems and figured my eyes were swelling (though that normally happened only in the mornings). By the time we got home and were sitting down to dinner I noticed that when standing in the kitchen the people in the other room were completely blurry. By 11 pm I could only see clearly within 18 inches of my face.

I awoke at 2 am with a severe headache and almost complete blurriness, I had to hold the pill bottle very close to my eye to be sure it was correct and even then could not be sure. My husband gave me the meds and I went back to sleep. I didn't wake up until 1pm!!! When I awoke all light was painfully bright and I could see NOTHING clearly! I was rushed to the hospital and was diagnosed with acute angle-closure glaucoma caused by TOPAMAX!!!

Thankfully the docs were able to reverse the symptoms but said one more day I would have been permanently blind. My eyesight has never returned fully, though I can function just fine and do not feel depressed about it.

Please, be very careful on Topamax. The stuff is dangerous to many people though a life-saver for so many others. Also, may I suggest to those with the tingling that you get your calcium levels checked as this is a classic symptom of low calcium. I just wonder how Topamax affects the other body systems, such as the adrenal and parathyroids.

-- By fibro_fog | Reply | Private Message me

March 23th
2007
8:26 AM

I had been taking topamax for 4 years for complex migranes and then stopped cold turkey after feeling like there was a tight band across my waist and watery diahrea and soreness in lower back , burning itchy pain..... went to the emergency room 14 times for them to tell me that I was crazy. I had a feeling like water was running in my head, normal cat scan of brain. water feelings throughout body... they still come and go but last a couple of seconds.... feels like sensory or nerve damage of some kind.... don't know if this is a side affect or not..... Doctor finally is getting something done. she checked my heart becasue I have MVP... and I am shedualed to get a mri of brain... I have a herniated disk in lower back, scoliosis, degenerative disk disease.... nuerologist checked for nerve damage due to herniation. won't hear back anything on that till after mri of brain. won't hear back about the heart till april.... Just found out that I am borderline hyperthyroidism... and the doc is sending me to a specialist. thyroid is inflammed and big.... My bones are crackly and pop alot and sore.... The water feeling and burning and tingling hands and feet scare me alot but I try to not think about it... Try to stay positive.. I am only 29.... I feel like I am 70 sometimes...... Does anyone have these symptoms after taking topamax...????? Yes I do have the thinning hair but that could also be the thyroid... and fatigue... problems sleeping and hot flashes. palpatations..... any help would be nice... Thank you,,,, love and light to all, jess

-- By karmaharley29 | Reply | (1) replies | Private Message me

January 7th
2007
5:31 PM

Hi-new here and new to Topamax! I am taking Topamax for BiPolar. I have tried a dozen different drugs and they all seem to make me gain weight. Thsi seems to not have that listed as a side effect. As a health careworker I am very dedicated to being on top of knowing the side effect of my meds. I have been having issues with hair loss and thought it was again issues with my thyroid but must have been the Depakote-still hasn't stopped-guessing it's not going to huh?
Anyhow, I have tingling in my face-anyone else??? I have found that soda tastes HORRIBLE! Not such a bad thing though! I have found that my appetite isn't too vast either.
Anyhting I should be seriously worried about???

-- By marguritamomma | Reply | Private Message me

January 5th
2007
12:25 PM

ALL, if you are taking TOPAMAX for migraines you need to read the article in last year's Science News where doctors have linked the migraines to a heart defect that is common in women and once corrected the migraines go away completely. Long term use of TOPAMAX may be detrimental to your health. I recently posted: My wife is experiencing massive hair loss. She had a metabolic panel ran on her to ensure it is not thyroid and is scheduled to see a specialist on hair loss next week. I just came off the National Institute of Health website at www.nlm.nih.gov/medlineplus/druginfo/medmaster/a697012.html where they list hair loss as one of the problems with the drug. They recommend that you see a physician immediately. My Wife's hair was literally coming out by the roots and since her hair is naturally thin it won't be long before she is bald unless she can get it stopped.

-- By johnpaul7 | Reply | Private Message me

January 5th
2007
11:53 AM

My wife is experiencing massive hair loss. She had a metabolic panel ran on her to ensure it is not thyroid and is scheduled to see a specialist on hair loss next week. I just came off the National Institute of Health website at www.nlm.nih.gov/medlineplus/druginfo/medmaster/a697012.html where they list hair loss as one of the problems with the drug. They recommend that you see a physician immediately. My Wife's hair was literally coming out by the roots and since her hair is naturaly thin it won't be long before she is bold unless she can get it stopped.

-- By johnpaul7 | Reply | (1) replies | Private Message me

July 7th
2006
10:07 AM

I have been on Topamax,50MG for a year. At first the tinglig in my fingers made me feel like I had Raynards Syndrome. So my doctor said to take it before bed. The migraines stopped, but after 6 months, I had a sudden loss of hair. My doctor thought it was thyroid. She does not seem to aggressive about helping me with it. She does not seem aware that it is associated with the Topamax. I am quitting it. I will find a way to deal with the migraines.

-- By smgrogan | Reply | Private Message me


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