getting off Topamax

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Re: getting off Topamax

Post  living on Mon Nov 26, 2012 1:48 pm

DragonHeart wrote:I'm not sure if anyone is still reading this thread but here goes...

Anyway, I should get onto the topic of migraines. I had a lot of headaches as a kid. Sometimes I would even stay home from school because of them. I always thought I grew out of them, but now that I am getting off of the Topamax I have been getting horrible headaches and neck aches almost every day. I'm not sure if they're just tension headaches because I just started my 3rd year of college and I grind my teeth a lot.. Or that it turns out that I have had a migraine problem and Topamax was helping all along.


Hi Dragon,

Just wanted to congratulate you on being free of seizures! That's wonderful. With regard to your neck and headaches, I recommend that you invest in seeing an osteopath/physiotherapist because it sounds like you have some serious tension problems in your neck. That's a very solid trigger for headache and migraine and if you can become more aware of how to release that tension before it builds up to such a severe level you may find you become more free of migraine/headache. Good luck!

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Re: getting off Topamax

Post  ConcordGrape on Sat Dec 01, 2012 7:06 am

I find this thread really inspiring.

I've been on Topamax for 3+ years and always thought i was the only one with a "positive" experience. I tapered up fine. My headaches went away. Other than minor tingling, there really wasn't a major issue.
But then I remembered the cognitive side effects. Topamax makes you so slow, you can't remember how you are off the medicine. I began taking it when I was in my final year of undergrad, and I believe the meds did affect the progress of my classes.
After you're used to Topamax its REALLY hard to know what's normal anymore--because that is the norm.

I am looking forward to getting off of it. My neuro has been advising me to stay on it for some time now "because your headaches could get worse". Well I'm ready to make that leap, especially since I've just suffered through 1 semester of grad school of almost consistent daily migraines. I think it's safe to say the Topamax is not working anymore, and my headaches can't really get much worse.

As far as tapering off, I've done it before without side effects. Maybe a little weight gain, as I lost a lot of weight when I first tapered up.
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Re: getting off Topamax

Post  tdu on Sun Dec 02, 2012 6:50 pm

I really NEED weight gain. I started losing weight extremely quickly while on topamax. My food intake didn't even really change that much, but literally within 6 weeks I had almost everyone I know commenting on how skinny I looked. This really freaked me out because this was not 'skinny' as in a compliment. I have always been very lean anyway, but I lost enough weight that I looked sickly. In 2 months I lost 2 pants sizes, and none of my jeans would fit. It goes to show how sensitive some people are to some drugs I guess.

The problem is, I am having a tough time getting the weight back on, and I really need to. For a body type like mine, gaining weight is tough. When you drastically lose that much, it makes it worse. I guess for anyone losing weight it sounds like a silly problem, but it's not fun.

On the bright side, I have been feeling a fair amount better than last time I posted. My memory is still absolutely horrid. But anxiety problems and weak feelings are quite a bit better.

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Re: getting off Topamax

Post  ConcordGrape on Sun Dec 02, 2012 10:09 pm

tdu:
I can relate, as I have a smilar body type. I could wear jeans i hadn't worn since high school when I first went on the drug. But after being on it for so long, my weight stabilized around normal.
As far as gaining weight goes, try eating more frequent meals and just adding a little bit more food to them--not so you're completely full--maybe a spoonful or more than you would normally eat. The anxiety could also be adding to your weight issues. When I get really stressed out, I drop weight like crazy, even if I combat it by doubling my food intake. So I guess my best advice is to try to maintain a balanced lifestyle/not worry about the weight, and it will come naturally.
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getting off of topamax

Post  ccrou on Mon Dec 10, 2012 11:52 am

After taking topamax for 9 years I developed raging anxiety. I felt like I couldn't get a deep breath. My neuro wanted me to up my dosage from 100 to 125 a day. I had never felt like I got any relief from the drug so I decided to change Doctors. New Doctor felt that the Topamax could have caused the anxiety. It took me a while to taper off because I would have these weird "falling" feelings when I would wake up. Like a falling out of the bed dream. I was both happy and mad that my migraines improved drastically when I got totally off of the drug. Mad that I had stayed with the same nero for so long. It took almost a year for the anxiety to improve. I am happy to say that I FEEL GREAT. I had no idea how "dull" I was on the topamax. My hair has also gotten thick again. I realize that topamax helps a lot of people, but it obviously wasn't the drug for me. My best advice is if it isn't working, don't keep taking it!

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Re: getting off Topamax

Post  tdu on Mon Dec 10, 2012 11:58 am

ccrou wrote:After taking topamax for 9 years I developed raging anxiety. I felt like I couldn't get a deep breath. My neuro wanted me to up my dosage from 100 to 125 a day. I had never felt like I got any relief from the drug so I decided to change Doctors. New Doctor felt that the Topamax could have caused the anxiety. It took me a while to taper off because I would have these weird "falling" feelings when I would wake up. Like a falling out of the bed dream. I was both happy and mad that my migraines improved drastically when I got totally off of the drug. Mad that I had stayed with the same nero for so long. It took almost a year for the anxiety to improve. I am happy to say that I FEEL GREAT. I had no idea how "dull" I was on the topamax. My hair has also gotten thick again. I realize that topamax helps a lot of people, but it obviously wasn't the drug for me. My best advice is if it isn't working, don't keep taking it!

Ya I don't post anything I post to try to convince people not to try it. You should try anything that could help. I just post my experiences, and if anything just a warning to monitor yourself closely while on it. The 'impulsive thoughts' side effect was so bizarre and unlike anything else I have experienced from any other med (or in my life in general). It's good to know that things like that can happen so you can identify them.

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Re: getting off Topamax

Post  Sarah2589 on Tue Feb 12, 2013 4:28 am

I can recommend a reputable pharmacy (Topamax) - onlinecheappills.com I recieved my pills within one week of ordering them.
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Re: getting off Topamax

Post  amoobaa on Tue Feb 19, 2013 1:41 am

awesome! I came off two weeks ago. Still getting anxious occasionally but My severe anxiety/depression went away almost instantly and was able to leave the house on my own again.
and my negative thoughts/beliefs went away too. Although still get down but at least I know its a "natural" down and not drug induced.
good luck x

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Best Way to Come off Topamax?

Post  stevieb on Sat Feb 23, 2013 7:45 am

Anyone know the best way to come off Topamax?
I absolutely hate this stuff. I'm starting to get really bad mood swings and depressive thoughts so right now I need a clear head.
I'm on 50mg in the morning and the same at night. I'd really appreciate any help from anyone who has had the same probe. Many thanks guys!

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taper down off topamax

Post  Sadie6 on Tue Mar 05, 2013 7:40 pm

stevieb wrote:Anyone know the best way to come off Topamax?
I absolutely hate this stuff. I'm starting to get really bad mood swings and depressive thoughts so right now I need a clear head.
I'm on 50mg in the morning and the same at night. I'd really appreciate any help from anyone who has had the same probe. Many thanks guys!

Hey,
I had similar side effects from topamax, as well as weight loss, hair loss, i would forget where i was when i was driving and trouble speaking. I was on 100mg for migraines. I have been tapering down, i started last month, at first my dr. said to go down by 50mg but i had awful withdrawl side effects, terrible panic attacks, i couldnt eat or sleep, really upset stomach for days, shaking & sweating, uncontrollable crying, i was really miserable i thought i would die. When i asked my dr. what to do she suggested i go back up to 100mg and just stay on it. Since topamax wasnt helping my headaches (i went from headaches 3-4 times a week to daily headaches at 100mg) and the side effects were killing me that was not an option. My dr. doesnt believe the topamax is making the headaches worse and doesnt believe i'm experiencing withdrawl symptoms or anxiety bc 'topamax doesnt cause headaches or anxiety'. So i went to my pharmacist who helped me with a tapering schedule, (& suggested i get a new dr.) from 1-50mg i switched to 2-25mg pills (one in day & one in night) until the withdrawl subdued a bit (about 2 weeks) then cut 1-25 in half in the day & 25mg at night still for a week, now im on 1-25mg at night only. I still cant sleep or eat really, but the anxiety & panic attacks are much less severe. Next week i hope to go down to 12.5mg, my pharmacist even gave me a pill cutter to make it easier. Everyone is different so 25mg or even 50mg might be ok for someone, and it might be too much for someone else. You have to take it slow and be careful, you can have seizures from the withdrawl. There are tapering instructions on the internet, the site wont let me post the link.
Sorry for the huge post, i know this has been an awful experience for me and im furious my dr did not warn me what a dangerous drug this is and is refusing to help me get off it now. Topamax has really messed up my life, i hope this can help someone.

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Re: getting off Topamax

Post  MARTYANN on Fri Apr 19, 2013 6:01 pm

Found this thread when looking for info on Topamax. I was diagnosed with Meneire's Disease about 14 years ago. After a particular bad vertigo episode that lasted several weeks at the end of 2012 my ENT sent me to the neuro with the suggestion that I was having migraines without the pain. My nuero put me on Topamax in the middle part of December. Around Christmas I developed a cold or an upper respiratory infection and started having headaches which I thought were the result of a sinus infection. After suffering for a couple of weeks I went back to the neurologist who put me on a combination of compazine, prednisone and valium which I could not tolerate. I had taken Valium for years for vertigo issues but the compazine and prednisone were killers. He then sent me to a headache specialist as my headaches were daily. I describe them as having a hat on that is to tight and by the end of the day the pain level is not unbearable but is definitely uncomfortable.
I had a history of migraines in my younger years but they stopped when I was in my early 30's. I am now 60. I have a family history of migraines. These are quite different then what I experienced in my younger days. I have not worked since these started. Not to get into all the details, but these have definitely disrupted my life, though the pain is significant the other symptoms are debilitating
I was already on gabapentin for other health issue so now with topamax as a preventive and no relief our next step was to try trigger point injections with no results. We are now waiting on approval from insurance for Botox injections.
Since I did not start having pain symptoms until about 3 weeks after I started taking Topamax I am wondering if am the unusal animal that am having a reaction to the medication. I have been known to have reaction to medications before. Just recently I was given Tramadol for pain (not the headaches), I have taken 25 mg tramadol before, but this.time it was 50 mg. I woke in the middle of the night itching and discovered I was covered in hives. Has anyone else had similar reaction to Topamax, which is headache, anxiety, easily agitated, fatigue, general overall feeling unwell, head pressure (like head in vise), bending over or standing up gives me a few seconds of immense pain. I seem to adjusted to the tingling and the stupidity factor, it seems to have evened out and doesn't bother much any more. Sorry this is long. Just hoping for some insight. Thanks

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Re: getting off Topamax

Post  Migrainegirl on Sat Apr 20, 2013 1:46 pm

Hives is definitely a sign of an allergic reaction. You should call your doctor ASAP. He will likely want you to discontinue taking and possibly start you on prednisone. If you cannot reach your doctor go to an urgent care center or ER. This can get much worse and progress to closing off airways.
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Re: getting off Topamax

Post  MARTYANN on Sat Apr 20, 2013 2:00 pm

Oh went off the Tramadol immediately as it was only needed temporarily for eye pain due to eye infection. Could not do the prednisone as I am allergic to that also! Lucky me~. As you can see why I have concerns to my possible reaction to the Topamax.


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Hi everyone

Post  Alonna on Sun Apr 21, 2013 3:39 pm

I started a discussion- Botox for migraine side affects? And how do you kick Topamax. I was wondering if anyone can relate to some of the issues I'm having. If you notice the tread and have time to read it let me know. It discusses some issues I'm having with side effects from Botox for chronic migraine but also side effects from stoping Topamax and trying to get back off.
Thanks Smile
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Re: getting off Topamax

Post  Platypus on Mon Apr 22, 2013 1:56 am

@MARTYANN fatigue is most definitely a Topamax side effect.

Are you still on Compazine daily? That is highly unusual and one I would suggest reviewing if you are.
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Re: getting off Topamax

Post  MARTYANN on Mon Apr 22, 2013 9:39 am

No longer on Compazine. I had extreme vertigo issues with it after only one day of taking it. It was part of a 2 week "cocktail" mix of prednisone, compazine and valium that my neuro used for sudden onset of migraines. I had no relief. I have used valium for years prn for vertigo issues. It was then I was referred to a headache specialist. Valium is the only thing that gives me any relief at all and that is only on occasion but down side of that if I take 10mg it often makes me drowsy not always, I think that part of that is the migraine. The headache specialist pretty much went straight to Botox as the answer.... Noting that if the topamax and gabapetin is not working that other options not likely to work and at my age likely to give me side effects I would not care to deal with. Of course I have to go through a certain protocol required by insurance before they will approve the Botox. Oh and I have been seeing a pain management doc. Pretty much going through the motions to get to the botox. We are now working on a letter of predetermination to speed up the process as I need to get my life back. Just trying to figure out what triggered this. We are thinking issues with pcp tinkering with thyroid medication. Mad I have hashimoto's disease and my THS numbers were not at the levels (to low) she thought were desirable Rolling Eyes (all though I thought things were fine) and as a result things got out of whack and we still have not my numbers under control. I just have wondered if others may encountered issues with topamax. As my headache pain, head pressure, general feeling unwell, lack of energy, etc did not occur until after being on the Topamax for about 3 weeks.

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Re: getting off Topamax

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