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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Topamax side effects question
(Message started by: washed-out on Mar 21st, 2008, 4:39pm)

Title: Topamax side effects question
Post by washed-out on Mar 21st, 2008, 4:39pm
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... :[

Title: Re: Topamax side effects question
Post by thebbz on Mar 21st, 2008, 5:48pm
http://psyweb.com/Drughtm/jsp/topomax.jsp
dopeymax :P
all the best
thebb

Title: Re: Topamax side effects question
Post by beachmusic on Mar 21st, 2008, 6:40pm
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!!!

Title: Re: Topamax side effects question
Post by Kirk on Mar 21st, 2008, 7:09pm
  One of the things I hate about Dopymax, is walking into a room and forgetting why I'm there.

[smiley=smokin.gif]

Title: Re: Topamax side effects question
Post by Superdave on Mar 21st, 2008, 7:47pm
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 ;;D

Superdave

Title: Re: Topamax side effects question
Post by MR_JESTER on Mar 21st, 2008, 8:34pm
I tried TOPOMAX with my last cycle.
I suddenly knew how a person with ALZHEIMERS feels.
I couldn't remember anything!!

Title: Re: Topamax side effects question
Post by washed-out on Mar 21st, 2008, 9:15pm
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 :D) preventative for CH, but it worked the best for me so far : P

Title: Re: Topamax side effects question
Post by Trooper on Mar 21st, 2008, 9:20pm
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.

Title: Re: Topamax side effects question
Post by EstieSA on Mar 22nd, 2008, 6:02am

on 03/21/08 at 21:20:45, 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.....


Which one did she put you on?

Title: Re: Topamax side effects question
Post by beachmusic on Mar 22nd, 2008, 7:11am
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  ;;D  ;;D
Good luck to you!!   Mary Ann

Title: Re: Topamax side effects question
Post by CostaRicaKris on Mar 22nd, 2008, 11:14am
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.

Title: Re: Topamax side effects question
Post by jschneider1 on Mar 23rd, 2008, 6:54am
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.

Title: Re: Topamax side effects question
Post by beachmusic on Mar 23rd, 2008, 7:49am
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

Title: Re: Topamax side effects question
Post by CostaRicaKris on Mar 23rd, 2008, 2:31pm

on 03/23/08 at 07:49:01, 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.


Yeah... that sounds familiar

Title: Re: Topamax side effects question
Post by kcopelin on Apr 16th, 2008, 5:27pm
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.  [smiley=huh.gif]

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

Title: Re: Topamax side effects question
Post by CostaRicaKris on Apr 16th, 2008, 6:55pm
Topomax as an abortive? [smiley=huh.gif]

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

Title: Re: Topamax side effects question
Post by Gator on Apr 16th, 2008, 11:03pm

on 03/23/08 at 07:49:01, beachmusic wrote:
My present doctor doesn't allow questions...


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?


Title: Re: Topamax side effects question
Post by beachmusic on Apr 16th, 2008, 11:24pm
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

Title: Re: Topamax side effects question
Post by kcopelin on Apr 17th, 2008, 10:37am
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

Title: Re: Topamax side effects question
Post by washed-out on Apr 17th, 2008, 12:54pm
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 ;-)

Title: Re: Topamax side effects question
Post by Giovanni on Apr 17th, 2008, 4:56pm

on 03/21/08 at 19:09:15, Kirk wrote:
One of the things I hate about Dopymax, is walking into a room and forgetting why I'm there.

[smiley=smokin.gif]


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

Title: Re: Topamax side effects question
Post by kcopelin on Apr 25th, 2008, 2:27am
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  >:()


Title: Re: Topamax side effects question
Post by TomM on Apr 28th, 2008, 4:32pm
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

Title: Re: Topamax side effects question
Post by beachmusic on Apr 28th, 2008, 4:50pm
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

Title: Re: Topamax side effects question
Post by kcopelin on Apr 28th, 2008, 5:31pm
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

Title: Re: Topamax side effects question
Post by washed-out on Apr 29th, 2008, 1:49pm
To be honest I haven't reported any weight loss... (which would be actually good for me).

Maybe not enough big doze yet? I've been taking 25mg for 2 months and now 2x25mg. But somehow it helped me pretty much, despite terrible side effects...

Btw do you know where does that weight loss come from? I mean - does topiramat change metabolism or doesn't want to eat much while taking it? (actually my apetite is even bigger :<)

Title: Re: Topamax side effects question
Post by beachmusic on Apr 29th, 2008, 2:54pm
I know some of us love the idea of losing some weight but trust me if you are experiencing "terrible" side effects on 25-50 mg. you will not like what will come with upping your dose.

But to answer your question~~~~ I believe the weight loss is due to a general loss of appetite.  Seriously, it is like that part of the brain just shuts down completly.  There have been times that I did feel more hungry but for the most part I cannot stand the mere thought of food.
I read where a mother of three young children actually had to set an alarm clock in order to remember to her feed her babies :o :o
Damned if I want to go back into a new cycle though!!!

Title: Re: Topamax side effects question
Post by TomM on Apr 30th, 2008, 9:21am

on 04/28/08 at 16:50:28, beachmusic wrote:
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

Hi Mary Ann. I tapered down to 25 mg/day and have ramped upto 75 mg/day. The most I ever took was 100 mg/day and it did wonders. I lost about 40 lbs and have kept it off. My appetite disapeared and that has taught me to control HOW huch I eat. In the beginning, the thought of eating was not there so it was easy to loose weight.
I have a rather stressful job working in litigation keeping a large DC firm's databases up and running. I must say, the cognitive loss factor is tough but I am dealing. I take plenty of notes and ask questions. Luckily for me, I have a very good reputation at my office so if I call back and ask for a repeat no one questions me why.
The tingling stuff has mostly gone away. It was merely annoying.
The soda taste...so what. I switched to water. Better for me anyway.
Here is a strange one. I don't sweat as much. I'm the guy who would sweat in the middle of winter just thinkinga bout slpitting firewood! Don't get me wrong, I still lose about 5 pounds [no lie] when I cut the grass in the middle of July but otherwise not like I did before.
Hope this helps!
TomM

Title: Re: Topamax side effects question
Post by beachmusic on Apr 30th, 2008, 9:25am
Tom,

Have to say I am 100% freezing all the time and that is not normal for me so I can relate to what you said
But I still have a q....
you said when you tapered off the topamax you went right back into a cycle.  How long did it last, and or how quickly or how well has starting the topamax helped with eliminating it or controlling it?
Basically I want to begin tapering off of the topamax but am very frightened of new cycle, and or the ability for the meds to work again.
Thanks for your help.  Mary Ann

Title: Re: Topamax side effects question
Post by TomM on Apr 30th, 2008, 9:36am
Sorry, misinformation. I started my down taper 4 months ago but this is my "season" for my cycle. So I am not surprised but shdows showing up and a few Kip 4's.  I got hit with a Kip 4 in the office about an hour ago....
I feel the cycle is coming no matter what. the Topamax has lessened the pain but not made it PF.
Does that help?

Title: Re: Topamax side effects question
Post by beachmusic on Apr 30th, 2008, 9:42am
Yes and thanks.
I am sorry you are getting hit again :( and I do believe I did misunderstand you.  
I thought you felt it was due to tapering off the Topamax that you started a new cycle.  Of course we never know these things.   But it gives me some hope that maybe just maybe I can get off this drug or atleast lessen the mg.
Good luck pf days to you!!!!  Mary Ann

Title: Re: Topamax side effects question
Post by TomM on Apr 30th, 2008, 9:52am
I'll take a the Kip 4's with the side effects of Topamax over weeks of kip 10's anytime.  :)
But, that's just me.

Title: Re: Topamax side effects question
Post by beachmusic on Apr 30th, 2008, 9:57am
I hear ya and agree fully!!  

Title: Re: Topamax side effects question
Post by washed-out on May 10th, 2008, 12:11pm
After two months I am going to stop my treatment with Topamax... Or I will stay at only 25mg for night... (and I will still have horrible problems with waking up).

Both Verapamil and Topamax give me terrible side effects even on small doses, I can't take steroids because of weight and some other health problems so conclusion is simple: nothing left for me.

Title: Re: Topamax side effects question
Post by washed-out on May 10th, 2008, 12:15pm
After two months I am going to stop my treatment with Topamax... Or I will stay at only 25mg for night... (and I will still have horrible problems with waking up).

Both Verapamil (IT DIDN'T HELP AT ALL) and Topamax give me terrible side effects even on small doses, I can't take steroids because of weight and some other health problems so conclusion is simple: nothing left for me.

Title: Re: Topamax side effects question
Post by beachmusic on May 10th, 2008, 3:13pm
I understand and cannot take the steroids either.  What other things have you tried?  o2 or triptans etc?   There have to be some other tricks left for you.  How about some of the non traditional treatments..... ;)

Title: Re: Topamax side effects question
Post by washed-out on May 10th, 2008, 4:20pm
Can't take triptans (Imigran) either... Unfortunately :( Because of some small problems with blood flow in heart (thats something like "heart block" but something less serious, it was visible on one EKG and wasn't on another).

I think I will try Lithium, maybe small (safe) doze will hape me.

Title: Re: Topamax side effects question
Post by lennycohen on May 10th, 2008, 4:41pm
While I've been on Topamax for a while, my main preventatives have been liithium and Depakote - and what really broke my cycle was 4 IV courses of Depakote spread about a week apart - I've been pain free for about 2 months, and I'm tapering off the lithium and Depakote - so there's othere things besides Verap and Topamax -----

Title: Re: Topamax side effects question
Post by tonyonly on May 17th, 2008, 1:50pm

on 03/21/08 at 20:34:24, MR_JESTER wrote:
I tried TOPOMAX with my last cycle.
I suddenly knew how a person with ALZHEIMERS feels.
I couldn't remember anything!!


OMG, this is THE one. I live in Finland, here this one is called TOPIMAX. I felt like 80 or 90 year old 24/7 and I'm in my thirties, I didn't remember anything in close past (like what happened 5 minutes ago) and with a higher dose it became very difficult to even speak. The frightening bit is that I didn't notice much of these changes myself but the people around me did...never again. My doctor told me to "keep eating it, you will get used to it" - yeah right, didn't want to get used to that. I don't know how they can prescribe something like this to anyone!

Title: Re: Topamax side effects question
Post by sandie99 on May 17th, 2008, 5:04pm
My dopeymax treatment didn't last long, but it was painful enough. I got hit more frequently and didn't recall a thing - that was especially brilliant, because I had plenty of essays to write!

My "fave" part was doing to a department store's music department and wondering why I was there... :-X
Luckily, my doc allowed me quit the med soon after that.

I know that topomax has helped some of us in here, but it was no good for me.

Sanna

Title: Re: Topamax side effects question
Post by Balanchine on May 17th, 2008, 8:31pm
wait... why did I hit reply again....?

No, I knew that! It was the igloo made of rice cakes of course! Twas brillig and the slithey toves, dammit!

Seriously. Started Topamax 5 days ago and I think it's finally kicked in today, when I went from 25 mg to 50, because yesterday I was hovering between kip 6 and 10 for, oh, maybe 9 hours straight until around 3 a.m. and today I'm just fine although please don't ask me my name or even what class of mammal I belong to.

I feel sleepy, stupid and drowsy... kind of like half the seven dwarves. But considering the alternative I think I'll take it. Was taking notes from a guy I work for this morning and had to have him repeat some stuff but he understood. Just will have to buckle down and drink more coffee and hope the cycle ends eventually or I become a barnacle, whichever comes first.

David

OH and PS, I've lost about 7 pounds since Tuesday

Title: Re: Topamax side effects question
Post by judyjudyjudy on May 17th, 2008, 8:33pm
I'm naturally spacey but Dopeymax at 100 mg turned me into a certified space cadet first class.  Not only just silly spacey, but I truly lost the ability to concentrate.  I normally am an avid reader, and MUST have at least two books to read at all times.  I couldn't concentrate to read anything longer than a newspaper article the whole time.  



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