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washed-out
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Topamax side effects question
« on: Mar 21st, 2008, 4:39pm » |
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Hey.
I have been taking Topamax for one month now. During first four weeks it was only 25mg for the night. However, it helped me pretty much, I would say 70% relief (not that "hard" attacks and less frequent), while Isoptin (Verapamil) didn't help at all. During first days I had to "pee" very much (like 20 times per day) but after one-two weeks it was OK. As I am taking it for the night, I feel pretty bad in the morning (it's hard to wake me up, it feels like my head weighs 20 kg. Anyway during the day it is acceptable.
Today I took 25mg in the morning, for the first time and I feel pretty bad. Well it's not about memorizing/thinking but I feel pretty "sleepy" (I didn't sleep good last night tho), like with low BP.
Do you think that this side effect can disappear after some time? (2-3 weeks) Well I should be "used" to that medicine after one month but on the other hand my body isn't used to it during the day... :[
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| « Last Edit: Mar 21st, 2008, 4:45pm by washed-out » |
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beachmusic
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Re: Topamax side effects question
« Reply #2 on: Mar 21st, 2008, 6:40pm » |
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I second the name dopamax!!! Been on it 3 months now but at a much higher dose(200 mg), all taken at bedtime. Side effects have not decreased.
Good luck!!!
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Kirk
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Re: Topamax side effects question
« Reply #3 on: Mar 21st, 2008, 7:09pm » |
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One of the things I hate about Dopymax, is walking into a room and forgetting why I'm there.
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Superdave
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Re: Topamax side effects question
« Reply #4 on: Mar 21st, 2008, 7:47pm » |
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Washedout glad to hear your getting some relief, Have'nt seen you around in a while.
Can't help you with your question, dopamax and I didn't get along very well.
But your english gets better all the time 
Superdave
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Wow! you mean it's just in my head?
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MR_JESTER
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Re: Topamax side effects question
« Reply #5 on: Mar 21st, 2008, 8:34pm » |
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I tried TOPOMAX with my last cycle.
I suddenly knew how a person with ALZHEIMERS feels.
I couldn't remember anything!!
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washed-out
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Re: Topamax side effects question
« Reply #6 on: Mar 21st, 2008, 9:15pm » |
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But I guess you all tried much bigger dozes? (150-200mg)
My neurologist said that "final goal" is 3x50mg but we didn't expect that just little 25mg could help. I think that I will try that 2x25mg for next two weeks and we will see. Maybe I will just stay with 25mg for the night, it brings quite impressive relief.
Still I don't know what else from preventives I can try... I know that (dihydro)ergotamine isn't "normal" (can't find proper word - Topamax works  ) preventative for CH, but it worked the best for me so far : P
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Trooper
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Re: Topamax side effects question
« Reply #7 on: Mar 21st, 2008, 9:20pm » |
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Dopamax just made me stupid and sleepy and I too found it very hard to get up in the morning. If it is working ok for you and the only real side effect is that you are sleepy maybe the side effect will go away. I can't really say because I only stayed on it for a month. When I finally got in with a Nuero she took me off Dopamax (that is actually where I first heard the name) and put me on different anticonvulsant med that actually worked and had less side effects. If the side effects are really bothering you go back and talk with the doc. there are other options out there.
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EstieSA
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Re: Topamax side effects question
« Reply #8 on: Mar 22nd, 2008, 6:02am » |
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on Mar 21st, 2008, 9:20pm, Trooper wrote:| ... she took me off Dopamax (that is actually where I first heard the name) and put me on different anticonvulsant med that actually worked and had less side effects..... |
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Which one did she put you on?
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beachmusic
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Re: Topamax side effects question
« Reply #9 on: Mar 22nd, 2008, 7:11am » |
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If you are getting results @ 25 to 50 mg per day that is good. The side effects I would think should improve over time. Perhaps ask doctor if you could take full dose at night??
BTW I also noticed the need to pee frequently esp in the beginning!!! Drink lots of water because a side effect of
Topamax is kidney stones.
My son takes 200 mg and says he notices zero side effects, I on the other hand am tremendously dopey. But I am still weaning off the Depakote also and a newbie to both. Headaches are better, but hey I do have an empty bladder
Good luck to you!! Mary Ann
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CostaRicaKris
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Re: Topamax side effects question
« Reply #10 on: Mar 22nd, 2008, 11:14am » |
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I take 200 mg a day of Topamax when in cycle and yes, sometimes I forget what a word means or how to spell a very common word but I don't get sleepy. I used to get the tingles but not anymore. It doen't make me sleepy. Soda tastes awful. Keeps the pain at bay for the most part, so I'm okay with it.
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jschneider1
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Re: Topamax side effects question
« Reply #11 on: Mar 23rd, 2008, 6:54am » |
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Topmamax was my maintenance med, for 3 years. Im a chronic ch sufferer. Off peak cycles I took 200mg per day.On a flair up I have been as high as 700mg. This peak run Im on now, Im off the Max and switched to lithium. It always made me tired, hard to drive to work if over 20 miles, even after 6 to 8 hours sleep, my wife says it also makes me mean. If it works,use it, if you could find something else, do so.
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beachmusic
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Re: Topamax side effects question
« Reply #12 on: Mar 23rd, 2008, 7:49am » |
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hey jschneider1
200mg for me and the whole family says it makes me mean and ultra sensitive. I don't doubt them. I cry all the time and in between wish I had a baseball bat. Add 50 year old female hormones to the pic and it isn't pretty.
Question for you, or anyone. I have heard lots of folks mention upping their dose when cycle starts and then stopping or lowering when cycle ends. My present doctor doesn't allow questions and at this point is not touching the dose. Just curious if that is something I could hope for. When cycle finally breaks I would love to go off until the beast returns. Then do you have to taper up again or just start full guns.
To quote my doctor ( he will not alter meds for 8 to 10 weeks and do NOT call in that time either" needless to say I am still searching high and low for new doctor!!!
Thanks Mary Ann
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CostaRicaKris
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Re: Topamax side effects question
« Reply #13 on: Mar 23rd, 2008, 2:31pm » |
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on Mar 23rd, 2008, 7:49am, beachmusic wrote:hey jschneider1
200mg for me and the whole family says it makes me mean and ultra sensitive. I don't doubt them. I cry all the time and in between wish I had a baseball bat. |
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Yeah... that sounds familiar
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kcopelin
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Re: Topamax side effects question
« Reply #14 on: Apr 16th, 2008, 5:27pm » |
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Okay, just saw a new neurologist this morning. Had my HA diary with me, research on olanzapine, and a very concise and complete description of the headaches, all meds ever tried, their effcacy and what I'm taking now.
Basically, the O2 stops headaches but they return about 20 minutes after I stop. I cannot take triptans, so I am looking for an abortive that I can take when I begin the O2. Olanzipine might work...
Well, neuro grunts alot, asked when this cluter started-I said Feb 2005, he said "No, this cluster cycle" I repeated Feb 2005 I am now chronic. He grunted. Asked about pred tapers told him I did three at the beginning (Feb 2005  ) and now have osteopenia which rules out pred now.
Showed him the research on olanzipine...he grunted...  said he'd not heard that one, but would look into it. I reiterated that I need some abortive help. He prescribed Topomax.
CRAP. Will be drinking lots of water and I assume my family will have even more entertainment in their lives. 
I'll give it a try, but he doesn't want to see me for three months. I had really hoped for a more responsive compassionate doctor.
C'est la vie...there are other neurologists in this town-one other one at least.
PFDAN
kathy
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CostaRicaKris
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Re: Topamax side effects question
« Reply #15 on: Apr 16th, 2008, 6:55pm » |
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Topomax as an abortive?
I agree, time for a new doctor.
Kathy, the O2 doesn't always work for me, I try to increase my chances by slamming an energy drink as soon as I turn off the tank. I'm not familiar with Olanzipine, I take Imitrex if my O2/Rockstar combo doesn't do it.
Good luck
PF wishs
~Kris
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Re: Topamax side effects question
« Reply #16 on: Apr 16th, 2008, 11:03pm » |
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on Mar 23rd, 2008, 7:49am, beachmusic wrote:| My present doctor doesn't allow questions... |
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WTF? And you go to him, why?
Kathy, there's no need in waiting for dimwad to do whatever research that you already know he's not going to do. Can you get your regular doctor to prescribe the olanzapine? You'll know in a few doses whether it works for you. I had my doc write the script and then I had the pharmacy just give me like 10 pills. This stuff is kind of expensive and there is no need to pay for a whole lot of something that ain't gonna work. I tried it and adjusted the dosage in accordance with the recommendations on Dr. Rozen's paper. Once I found it to work, I went back and picked up the rest of the prescription.
Just curious, was this guy a VA doc?
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beachmusic
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Re: Topamax side effects question
« Reply #17 on: Apr 16th, 2008, 11:24pm » |
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I go to him because I have no other options!!!! My pcp fired me, grrrrr, and I am and patiently waiting to be accepted with a new neruologist in this wonderful city of Richmond, VA
I am a raging maniac with cluster headaches that is about to have a full blown manic attack, I am over medicated and under treated. On top of that I cry ALOT, I can be really really mean and get very confused, wanna talk......
Actually I am getting better, but still.......waiting to see new doctor with great anticipation!!!!
Mary Ann
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| « Last Edit: Apr 17th, 2008, 6:52am by beachmusic » |
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kcopelin
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Re: Topamax side effects question
« Reply #18 on: Apr 17th, 2008, 10:37am » |
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Mike,
This was a "civilian" neuro-since Medicare and TriCare for Life kicked in I figured I could skip the hassel of bi- monthly trips to Sacramento to see Neuro residents. Unfortunately, my high hopes were totally dashed. This guy is an idiot. Just like Beachmusics doc, he doesn't even want to hear from me until 3 months have passed, unless the side effects are bad.
You're right-I had to shove my research headaches diary and description of CH/history/treatment history into his tightly clenched little fists. He had the bedside manner of House, only not quite as friendly and talkative.
From now on I want to know if the neuro graduated in the top third of their class or the bottom third-makes a difference I'm sure. Also, I think I'll start off right away asking if they believe that women can have cluster headaches and if they have ever heard of chronic clusters.
FAD,
PFDAN y'all
kathy
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washed-out
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Re: Topamax side effects question
« Reply #19 on: Apr 17th, 2008, 12:54pm » |
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Little update and advice (because I see that someone refreshed my topic):
even on 25mg/day I feel pretty bad (sleepy). Though it helps a lot I asked my doctor for Enerbol (I was taking it after bike accident some time ago), it's something like Nootropil (Piracetam).
And... my clusters started again. Hovewer, now I feel normal during the day. I ate a lot of "triger-food" last days and I think that it could bring my headaches back, lack of sleep too.
So what's the point? If you can, try Piracetam (I am switching to it tomorrow). It improves work of your brain. OF COURSE THAT'S ONLY FOR PPL WHO GET SIMILAR SIDE EFFECTS. I am going to go for Topamax 25mg in the morning and 50 for night + 'big' doze of Piracetam and I hope that it will be something that I was looking for 
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Giovanni
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Re: Topamax side effects question
« Reply #20 on: Apr 17th, 2008, 4:56pm » |
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on Mar 21st, 2008, 7:09pm, Kirk wrote: One of the things I hate about Dopymax, is walking into a room and forgetting why I'm there.
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I was in Washington DC to visit my daughter in graduate school and made a traffic circle--360 degrees and was headed back from where I came and didn't know it. I personally could not tolerate the drug. My hat's off to anyone who can.
John
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kcopelin
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Re: Topamax side effects question
« Reply #21 on: Apr 25th, 2008, 2:27am » |
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day ate uf topomack. see jane run. see spot run. look, i have 2 feet. kewl. my dawg likes me better now. so do my son and husband. i think like they do. oops, gotta go potty.
i saw my doctor about my hip pain. she said it was sciatica-i thought that was a city in new york. i told her about the topomack and she said she is on it 2. kewl. i trust her medical advise like totally now.
Okay folks, it's not that bad, really. Last night I increased my dosage by one half of a tab-not the 25 mg as prescribed. Low and slow was my doctors advice on increasing the dosage. Thought I would give it a chance to work but in the meantime I am trying to get in to see someone who will let me try olanzapine as an abortive...I really think that is my major need. In its favor, since I started on the topomax I haven't had a high level hit-nothing above a 7. That has been a week now. I have, however, had daily hits at least three a day-all between 3 and 6.
I wrote this at 8 am- by 3 pm it wasn't funny anymore. I had trouble picking my feet up (looked like the thorazine shuffle), and am in a continous state of anger and agitation. This ain't cool. Took one half a tab tonight and will do so for a couple more days then stop totally. No way is this worth it. My hat is off to anyone who can handle the effects of this medication.
PFDAN y'all
kathy (what are you looking at )
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TomM
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Re: Topamax side effects question
« Reply #22 on: Apr 28th, 2008, 4:32pm » |
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I started on Topamax about a year ago and have had every side effect. I'll take the side effects to stay out of cycle. I tapered down [much like a steroid] this spring and bam! A new cycle.
Again, which would you prefer [assuming it works] CH or the cognitive loss, tingling, and bad soda taste? I'd rather be PF, personally.
TomM
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| « Last Edit: Apr 28th, 2008, 4:43pm by TomM » |
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beachmusic
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Re: Topamax side effects question
« Reply #23 on: Apr 28th, 2008, 4:50pm » |
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Tom,
I would be so interested in your story. How many mgs. topamax you are taking and how long you were off before you got hit with a new cycle etc. Did you start it right back up again and if so did it work?
I am fixing to see my neuro again in a couple of weeks and was seriously thinking of tapering off myself but you now have me reconsidering. Last thing I want is a new cycle. I am on 200mg. all taken at night but the side effects and the weight loss are pretty extreme. Not to mention I am still having daily shadows. 
All ears here.... Mary Ann
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kcopelin
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Re: Topamax side effects question
« Reply #24 on: Apr 28th, 2008, 5:31pm » |
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I really am happy for those of you who can tolerate topamax. It really didn't give me PF time. Other wise, I'm with you, I'd deal with the dippiness, flat sodas and weight loss.
PFDAN y'all
kathy
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