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Title: Topamax users...what side effects did you have? Post by nancyc on Aug 31st, 2004, 1:39pm I am on the way to the Neuro today with some rough side effects..had to cut back and getting hit again...doing so messed up my 2 year pf combo....Seems like all of a sudden I am having some of the serious side effects from the stuff...I started out with a small dose but had moved up to a larger one as I was having some breakthrus....Then, I started having anxiety, muscle rigidity, and now periorbital pain....Anyone else experience any of these side effects? :)nancyc |
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Title: Re: Topamax users...what side effects did you have Post by Rock_Lobster on Aug 31st, 2004, 6:57pm My general Topa side effects: A bit harder than usual to concentrate A bit lethargic Big on taking naps Overall feeling of mental slowing My head stopped hurting Was taking 50mg in the AM & 50mg in the PM. Found that 100mg in the late PM worked just as well, and I had fewer noticeable side effects in the waking hours. But I did really stupid things in my dreams. ;) |
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Title: Re: Topamax users...what side effects did you have Post by UN_SOLVED on Aug 31st, 2004, 8:00pm KIDNEY STONES TWICE THE FIRST TIME REQUIRING SURGERY !! 11 Months of TOPO got me nuthin but PAIN !! Unsolved Hope you do better. You'd better be drinking alot of water !! Topamax & Kidney stones About 1 in 50 adults taking Topamax have developed kidney stones. They are more common in men and in those who have had them before. They also may be more likely to occur if Diamox (acetazolamide) or Zonegran (zonisamide) is also taken or if the ketogenic diet (a special diet sometimes used to control seizures in children) is followed. Topamax therefore should be used cautiously in people taking Diamox or Zonegran or using the ketogenic diet. To help prevent kidney stones, drink plenty of water, juice, or other fluids (8 glasses every day for adults). Sharp pains in your side or lower back may signal the onset of a kidney stone. Consult a doctor immediately or go to the emergency room. |
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Title: Re: Topamax users...what side effects did you have Post by Giovanni on Aug 31st, 2004, 8:41pm I made it to forget my own name stage and quit. John |
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Title: Re: Topamax users...what side effects did you have Post by Lizzie2 on Aug 31st, 2004, 9:01pm Hi Nancy, What did the doc say about the side effects? Eye pain with topamax can be scary... The visual side effects don't happen very often, but if they do, they have to be addressed right away. I took topamax on two separate occasions. The first time, I stopped it after only a few weeks. I was just on 25 mg and then because of numbness and tingling in my feet, I went off it. I then was put on it again several months later and stayed on it for over 2 years. I went up to 375mg. My neuro told me to increase my potassium intake (through diet), and the numbness and tingling went away. I had some weight loss with it. The most significant side effect for me was memory/concentration loss. I was put on Concerta to help combat this, and it really helped me a lot. Unfortunately, topamax did not help me..at all. So I went off it after over 2 years of staying on it..for no apparent reason! hehe Good luck! Lizzie :) |
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Title: Re: Topamax users...what side effects did you have Post by nancyc on Aug 31st, 2004, 10:01pm He does not feel it is the topamax....He wants me in the hospital...started to admit me tonite as i did not get out of his office until after 6pm...but I begged him to wait until the morning as I had to get Toby to my son's house. I got hit 7 times in the last 24 hours and took 1/2 imitrex each time...My Doc and I both are alittle worried about that one...but he knows I cant stand the pain...he has witnessed one of my attacks before. Please say a prayer that tonite will be better for me..If not, and if you dont hear from me tomorrow, then you will know I am in the Baptist Hospital in Columbia, SC...love you guys, smiles,nancyc |
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Title: Re: Topamax users...what side effects did you have Post by Rock_Lobster on Aug 31st, 2004, 10:09pm Hmmm... note that Topa has a therapeutic window. Some have a worsening of attacks above a certain limit. Lizzie reminded me of a side effect: Loss of appetite Food taste different... usually for the worse And... All carbonated beverages taste like ass |
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Title: Re: Topamax users...what side effects did you have Post by UN_SOLVED on Sep 1st, 2004, 8:49am LOL Rock ! I remember that year now. I was confused all the time, forgetful and clumsy. I'd eat anything since all food and beverage tasted like 'ass'. I still had massive headaches everyday and night. Then came the fun part ~ The STONES !! Unsolved |
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Title: Re: Topamax users...what side effects did you have Post by clavers on Sep 1st, 2004, 8:57am I was insane for about three days (literally), then I lost my sense of taste and felt awful. I continued to take the crap for about three months, it never did a thing to ease the CH's. |
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Title: Re: Topamax users...what side effects did you have Post by toolong on Sep 1st, 2004, 9:47am Tried Topamax per witch doctors orders.After third day on medication,I got lost at a place that I've worked at for 32 years.Totally confused,didn't know my name...took about 48 hours to get it out of my system.Witch doctor gave it to me as a sample and did not give me any warning of what possible side effects to expect.I would be very cautious with this stuff.I've heard it is [smiley=gocrazy.gif] the new wonder drug for migraines.But a tab of LSD would be safer. |
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Title: Re: Topamax users...what side effects did you have Post by mynm156 on Sep 1st, 2004, 10:33am It made just about everything taste like ASS I had slurred speech and physical hallucinations. Drowsy MYNM156 |
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Title: Re: Topamax users...what side effects did you have Post by Jonny on Sep 1st, 2004, 11:16am on 09/01/04 at 10:33:24, mynm156 wrote:
ROTFF!! ;;D .....................jonny |
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Title: Re: Topamax users...what side effects did you have Post by Karla on Sep 1st, 2004, 4:23pm Controlled seizures that were being caused by another medicine I was on. Controlled my mood and stabalized that and helped with depression. Made me dumb as a doorknob around 200mg and I went up to 600mg at one time and 200mg at another time. Both times they made me stupid. They can cause kidney stones? Some kind of stones, anyway. You need to drink lots of water while on it. Good luck! |
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Title: Re: Topamax users...what side effects did you have Post by Sophie on Sep 20th, 2004, 1:26am I'm new at this, but the main reason I joined in was to see what anyone had to say about Topamax. I'm on my 3rd week of 100mg and doing ok---just a couple break thrus. But I don't feel right---and very concerned about side effects in the long run. Should be happy--but feel down and have a dull constant regular headache. I'm due to see the Dr. next week----and would like some education before hand. I am not chronic. I'm in the 4th month of this episode---so it's time for it to go away. Would you stay on this drug all year----it makes you feel like a vegtable? or should I be grateful for the relief and follow Dr.s advice??? [smiley=huh.gif] |
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Title: Re: Topamax users...what side effects did you have Post by nani on Sep 20th, 2004, 1:39am Be well, Nancy. [smiley=hug.gif] [smiley=hug.gif] |
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Title: Re: Topamax users...what side effects did you have Post by Charlie on Sep 20th, 2004, 9:49pm I took it for my epilepsy. It worked wonders. Unfortunately, it made me forgetful and a teensy paranoid. I'm not one to worry much but this drug made me nervous. It also caused a ringing in my ears that was like Westminster chimes. LOUD. I had to quit. On the other hand, it's a hell of a diet pill and some people have no serious side-effects. I'm hoping you're one of them. Charlie |
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Title: Re: Topamax users...what side effects did you have Post by JennyWV on Sep 22nd, 2004, 1:18pm Hi all.... I've been on Topamax for a month now. Started at 50 mg/day, am currently on 100 mg/day, moving up to 150 mg/day tomorrow (I think). Always thirsty, have lost some weight (no clue how much because I'm too tired to even stand on a scale). Holy cow, is narcolepsy a side effect? I have never been so constantly tired in my entire life. I have no energy at all. Haven't had any headaches, but that could be because all I do is sleep. [smiley=sleep.gif] |
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Title: Re: Topamax users...what side effects did you have Post by nani on Sep 22nd, 2004, 7:40pm OK _ I have a question. [smiley=huh.gif] Have those of you who think stuff tastes like as ever actually tasted assor is this just a guess? [smiley=laugh.gif] |
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Title: Re: Topamax users...what side effects did you have Post by unsolved1 on Sep 23rd, 2004, 8:36am on 09/22/04 at 19:40:04, nani wrote:
Taste like your ass [smiley=laugh.gif] unsolved |
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Title: Re: Topamax users...what side effects did you have Post by nani on Sep 23rd, 2004, 8:51am Oh I don't know. I'm guessing mine would be very sweet...just like me [smiley=laugh.gif] |
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Title: Re: Topamax users...what side effects did you have Post by nancyc on Sep 25th, 2004, 9:31am ;;D :o |
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Title: Re: Topamax users...what side effects did you have Post by reptile on Oct 1st, 2004, 12:29am Topomax at 150 mg/day was the fucking scariest med I have ever taken. Knocked the CH's out, but made me SO stupid, SO depressed and SO emotionally uneasy that I was actually happy to go off of it, even if it meant going back to daily battles with the beast. God it was wretched. HOWEVER, I am now taking 12.5 mg one day and 25 mg the next, along with 9 mg of Melatonin before bed and for several days now have been mostly pain free. I still get weird mood flashes that I know are the topo, and I feel a little disoriented and slow/stupid several times a day--but those side effects SEEM to be be getting better. FYI, I am also taking verpamil and indicin as preventatives. I feel for all you guys and include everyone in my daily healng meditations. |
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Title: Re: Topamax users...what side effects did you have Post by WuWei on Nov 23rd, 2004, 9:32pm According to the manufacturer, patients are supposed to start at 25 to 50 mg of topamax a day, then add 25 to 50 more per week. Unfortunately doctors sometimes start patients at 100 mg because that's one tablet size, and lots of people have problems with that. Some people get relief from as little as 25 or 50 mg. If someone is totally devastated by strong CHs, then maybe they want the higher dose and don't care about the side-effects. But other people who need to function at work and have milder or less frequent headaches might ask for a smaller dose if they have problems. I took it during my last cluster which was #10 clusters sometimes six a day. Topamax broke the cluster within 48 hours. There were a few headaches in the next week but it was over. I am chronic and used topamax at another time for milder clusters. It wasn't very helpful and I did have symptoms like others have reported here of anxiety and forgetfulness. The food taste was the most amazing one. Most things were just tasteless or tasted slightly bad, it it tough to describe. But carbonated soda pop was absolutely awful. Drinking liquid chalk would be the closest way to describe it. |
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Title: Re: Topamax users...what side effects did you have Post by markg111 on Nov 24th, 2004, 1:34pm my SE's included: tingling in the feet and hands loss of appetite food tasted like crap vision seemed to be staggered .... no longer on it.... I didn't notice any improvements...was taking 150mg a day |
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Title: Re: Topamax users...what side effects did you have Post by allan_r on Nov 25th, 2004, 9:27pm I started a month ago having lost the effectiveness of verapamil -- the headaches switched to chronic nine months ago. So far, the topamax gave a week or so of what is best described as mental slowness- i felt a second behind the world for the first week on the medication. The tingling in the lips and extremities was intermittent and went away after the first few weeks. I am currently raising the dose 25 mg per week to 200 per day 100 at night. 100 am. It has seemed to tamed the CH -- no full blown headaches, which have come nightly--- mostly 7-9 pm and have either been mildly annoying or, like now, have been very symptomatic with eye watering and short bursts of intense pain (akin to contractions ?) every few minutes). This lasts up to one to two hours. No analgesic seems to help. No pacing or emergency room required and my wife and child can stand me at least. Oh for the bygone days of the twice annual visits. At least they went away. Then only lasting side effect has been the taste issue. I believe this is caused because the drug actually alters the ph balance of your body, making it slightly more acidic. I may be wrong, but that is what the neurologist told me. Hope that you are having luck with the med Nancyc. I know this reply is months after the original post. |
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Title: Re: Topamax users...what side effects did you have Post by nancyc on Nov 29th, 2004, 12:27am Allan, great to hear you are having good results...I came off topamax only to have to go back on it again..I was getting slam dunked....I came off the topamax and my duragesic patch and had to go back on both of them...nothing else seems to help at all...but i am only on 50mg a nite now...I cant seem to go any higher cause of the side effects..the only problem is my neuro is insisting I go higher no matter what the side effects are...I am thinking about changing docs now..I am FED up with doctors who think they know it all...I would love to put about 200mg of topamax in his coffee and see him function at work LOL....smiles,nancyc :D |
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Title: Re: Topamax users...what side effects did you have Post by Pooh_Bear on Nov 29th, 2004, 2:40am I tried Topamax, Lithium, Prednisone......on and on, the only thing that works, and works WELL!! is ICE! I use 100% oxi on the rare occations that the ice won't work, ( once a month). I get 4 or 5 every night, so i keep ice in a thermos and grab a cube. By the time it melts, i am asleep. NO MORE PAIN!! After 10 years of this, its the only thing i have found that works. |
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Title: Re: Topamax users...what side effects did you have Post by clavers on Nov 29th, 2004, 8:52am Topamax made me literally insane for three days, then it destroyed my short term memory and my sense of taste. It did nothing to help my CH. |
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Title: Re: Topamax users...what side effects did you have Post by Apple on Dec 3rd, 2004, 3:52pm I know this is weird, but I would be happy if all that Topamax did is made things taste like you know what. (I'm a lady and I ain't gonna say it). It a weird ass, drug. Okay, I sorta said it. At least it helps my pain, so I'm putting up with it. The stuff is strange. |
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Title: Re: Topamax users...what side effects did you have Post by nancyc on Dec 10th, 2004, 1:26am Apple, ask your neuro to maybe switch you to Zonegram...it is suppose to be like Topamax without the side effects...I got mine to change me...Not sure if the side effects are going to be bad on this one but will let you know....smiles,nancyc PS i felt like a zombie on topamax! |
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Title: Re: Topamax users...what side effects did you have Post by roro on Dec 13th, 2004, 5:10pm Well I must be the exception. Its been two years three months since I started Topamax. At that time I was having CH 3 months on and 3 months off. In other words I had at least one CH every night for half of my life and it was getting really old. I had a lot of these bad side effects that many of spoke of. Dizziness, sort of being in a time lapse like I was living one second behind everyone else. This is not good when driving an automobile. I slowly ramped up the dosage as the manufactor suggested. By the time I got up to maximum dosage (100mg AM and 100mg PM) I was CH free and I had adjusted to the stuff. Compared to living through my college years this stuff was nothing. So maybe if given a chance to adjust others can get benefit from this. I haven't had a Cluster in over 2 years! ro |
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Title: Re: Topamax users...what side effects did you have Post by Apple on Dec 15th, 2004, 3:53pm It's a long story, but due to medical reasons, I probably can't take sulpher (sp?) drugs and I think Zonegran is in that class. Also, my doctor is unfamiliar with prescribing Zonegran is not ready to prescribe it to patients yet. But like I said, it's unclear if I can take it...so I guess it's moot. The Topamax makes me batty sometimes. And recently I've gotten some bladder infections and this is an "uncommon" s/e of Topamax that I've been worried about. This is a c.r.a.z.y. drug!!!! It does often help migraines though. BTW...ARICEPT helps a little with the brain fog when you take Topamax. Pass the word! |
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Title: Re: Topamax users...what side effects did you have Post by heprat on Dec 16th, 2004, 8:56am I've been on 50mg Topo since Dec 3 and started 100 mg Dec 14 and have not had any side effects that I couldn't just as easily attribute to not haveing a complete nights sleep since mid November. I've been following this thread and am no way advocating this or any other med...and most likely this is the delirium of having been beaten sevearly by the beast recently...but I find myself thinking...I'd gladly forget my name or get lost at work once in awhile if I didn't have to have these damn "headaches". Desparation sets in. |
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Title: Re: Topamax users...what side effects did you have Post by hdbngr on Dec 16th, 2004, 2:30pm At 200 mg I had the intelligence of a box of rocks, but it DID help with the headache's somewhat. Lost about 20 pounds, mainly because soda taste like Alka-Seltzer. I could handle these side effects, but when I experienced a kidney stone, I said NO MORE! I can think of about 100 other things I would do any day before having a headache and passing one of those jagged little suckers. |
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