questions about topamax

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dsj
New Member


Date Joined Mar 2007
Total Posts : 6
   Posted 3/26/2007 11:45 PM (GMT -6)   
I just started taking topamax this week and have been trying to find out as much about it as I can and Im just wondering  about a few things: 
 why are a lot of people saying not to get too hot on this medication?
 also I find that I get extremely tired lately is this a common side effect? also is  irriatibility  a part of this or is this just me?
why do people recomend drinking so much water?
 

holmesla
Regular Member


Date Joined Jan 2007
Total Posts : 196
   Posted 3/27/2007 6:23 AM (GMT -6)   

Fatigue is a very common side effect. When I was put on it, even at a low dosage of 25 mg, I was quite tired all the time. I am now taking 100 mg a day and to offset the fatigue my doctor put me on Cymbalta, an antidepressant, which actually helped with that.

Irritability is also something I experienced along with depression, but this too can be a side effect of having a headache. This is also something that can be alleviated by the antidepressant.

As far as the water consumption, I think it is because there is a chance of kidney stones, for people who have the history of kidney stones, but I am not sure.

Don't let people scare you into not taking the drug. Everyone is different. It may work for some people and not for others.

Good luck with this drug. I hope it works for you. I cannot say if it works for me. My headaches are caused by a car accident and is due to referred pain from my neck. I can say that I am getting better. But I cannot sy if it is from the medication or from the physical therapy or both.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 3/27/2007 6:25 AM (GMT -6)   
Hi dsj,

I am on Topamax too. As far as I know you cannot regulate your body temperature on this med very easily so you are unable to sweat properly so keeping cool is important in hot conditions!

Tiredness is a side effect as is irritability, and you should drink lots of water to prevent kidney stones.

Hope this helps, if you need any further information please talk to you Doctor!

take care

Ann
Co-Moderator of the Migraine/Headache Forum


sylvie74
Regular Member


Date Joined Mar 2007
Total Posts : 443
   Posted 3/27/2007 7:08 AM (GMT -6)   
I'm taking 25mg a day for chronic pain relief, some of which does include frequent headaches. I started at 25mg, went up to 50mg for a few days, then had a weird reaction (I think partly because I was sick anyway at the time) and so I have stayed at the 25mg dose. (Although it's not helping as much as it used to). I have been very light-headed, so my neuro said it's very important to drink lots of water. Also, it's important so you don't develop kidney stones, which is a very serious possible side effect with long term use. Frankly, that's the last thing I want to develop! Also, I have lost over 10 pounds since taking this medication. I was about 125 when I started taking it, and am now about 112 or so. It's important to note if you have any change is your vision or any sensations like eye pain. I take my med at night, because it does make me pretty tired. It can make you feel like you have pins poking your hands and feet- I did when I went up to the 50 mg dose. I actually felt like my hands were the size of boxing gloves. It was freaky!!
(undiagnosed) chronic pain, for nearly 10 yrs and counting..


sldrswyfe
New Member


Date Joined Mar 2007
Total Posts : 1
   Posted 3/29/2007 10:00 AM (GMT -6)   
I take topomax...and it makes me feel extremely bad...out of body like, irritable, have diffculty with speech.  I am going to try it at night...it does make me exremely edgy...and makes my heart race.  I have chronic clusterheadaches...that's why it was prescribed...but everyone is different...it could make a very positive difference for you.  Good luck

kendyg
New Member


Date Joined Mar 2007
Total Posts : 3
   Posted 3/29/2007 8:56 PM (GMT -6)   

I love this website:

http://www.crazymeds.org/

 

It's for mental health problems but covers many of the drugs we take for migraines.  It will make you laugh and give you info on the drugs you are taking.


CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 3/29/2007 11:30 PM (GMT -6)   
Welcome DSJ,
 
RUN, RUN AWAY VERY FAST!!!!
 
Ok, this is just my personal opinion but, as I have posted numerous times in this forum, TOPAMAX is TOTAL POISON!!!  skull   I took this medication for less than a year.  I titrated(changed) dosages up and down, at one point I was taking 400mg per day!!!  At that point, I was encountering significant brain damage.  I lost my short-term memory, I could not form complete thoughts, I could not complete full sentences or even remember the names of simple items.  I had difficulty writing or carrying on a conversation.  All my cognitive abilities were severely impaired.  I stopped taking Topamax over two years ago.  I still have not regained much of the abilities the Topamax took away, especially my short-term memory.  And on top of everything, it didn't do a darn blasted thing to prevent my migraine attacks.
 
If you scroll down through previous topics in this forum you will find numerous threads about this drug, as there are many people inquiring about or reporting their own experiences with Topamax.
 
Best of luck and keep us up to date on how you do.
Leigh Ann cool

"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett


Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 3/30/2007 9:06 AM (GMT -6)   
Hi sldrswyfe,

Welcome to Healing Well. Sorry to hear you have Chronic CH! Have you tried any other preventatives for your CH other than Topamax?

take care

Ann
Co-Moderator of the Migraine/Headache Forum


dsj
New Member


Date Joined Mar 2007
Total Posts : 6
   Posted 4/4/2007 8:06 PM (GMT -6)   

Well just to give a little update on my experience with topamax.  I have now been taking it since March 19 and boy am I tired.  Even if I sleep well at night I seem to hit some sort of a brick wall and there is no second wind.  I am finding that when I get tired thats it - I have to sleep.  I hope that this will go away soon!!

I also am very irriatable, not all the time, but wow when it comes on there is no stopping that either.  I have no patience and everything starts getting on my nerves. Thank God this seems to be a random thing as opposed to every day.

I was told that one of the side effects was loosing weight but so far I have gained 5 pounds so that doesnt help.

Another thing I've noticed about topamax is that it is actually causing me headaches.  I have recently(Jan) been diagnosed with migraines with aura, so my migraine situation is a little different then most of you guys who suffer on a regular basis.  My migraines are not as frequent but they are very dibilitating in that when I lose my vision I get the panic attack and anxiety.  I have been getting them on an average of one a week so I need to find some way to deal with this and I was hoping Topamax would work but so far it has not stopped the migraines I have still had three while taking the med plus now I have had a headache (bad one) for 6 days straight.  I am blaming this on the medication and if things dont change by Monday I will try and talk to my Dr about stopping it. 

 I have read that this medication sometimes takes time to get into your system but does anyone know roughly how long you should give it to see if it is the right med for you?

Oh yeah and least I FORGET, I seem to be getting ditzy,  my memory is now a joke(literally)and I feel really not connected sometimes.  And the tingling  in hands, feet and face, wow I really hope this works.


nhkat
Regular Member


Date Joined Jul 2006
Total Posts : 22
   Posted 4/5/2007 6:31 PM (GMT -6)   
I was on Topomax two different times, it never seemed to help my migraines at all. At the same time I was taking it I was having severe sinus headaches and infections that didn't want to go away, I ended up having sinus surgery. I went off the topomax because it wasn't helping the headaches. My pain dr. put me back on it (started me at 100 mg) for fibromyalgia pain, and not only did it not work but within a week I had a horrible sinus infection and sinus swelling.
Come to find out this is one of the side effects of Topomax and one of the main causes of my earlier sinus issues, so if your sinuses bother you, be careful with this med.

kymark
Regular Member


Date Joined Dec 2005
Total Posts : 86
   Posted 4/6/2007 8:07 AM (GMT -6)   
DSJ,

I've posted a link on this forum a couple of times to a study on chronic tension headaches that found topamax doesn't have full effectiveness until 3 months or more until you get to your full dosage. That was my experience as well. I don't know if the same is true for classic migraines, but since docs seem to think the various types of headaches are related, it seems likely. If you'd like to see the study, email me and I'll send you the link to the article, although it doesn't say much more than I've said here.

When I was starting on topamax, it made my headaches worse for a while too. After several months, however, I got significant relief. Unfortunately, as has happened with every medicine which has ever helped me, the effectiveness seems to have worn off. I see my neurologist next week and we'll decide what to try next. I'm leery about increasing the dosage any more -- I can't remember names at all anymore, which gets pretty embarrassing. On the other hand, I did appreciate losing most of the weight I gained from years on amitriptyline. I'm on day 4 of a nonstop severe headache and ready for some relief, so I hope my doc has some ideas of what to try next.

Good luck!

mrsghost
New Member


Date Joined May 2006
Total Posts : 15
   Posted 4/9/2007 4:55 PM (GMT -6)   
I took Topamax for a short time, but couldn't handle the side effects. I had the tingling sensation in my hands- which was annoying but tolerable. But, when I lost time while I was driving, I was done! I had been kind of spacy, but one day I realized I had passed my street and had no idea I had driven that far! I get the aura's and never drive because I don't want to put anyone in danger. So, there was no way I could take this med. It's just too risky!

Volleyballer
New Member


Date Joined Apr 2007
Total Posts : 5
   Posted 4/19/2007 8:51 AM (GMT -6)   
eyes  I am new to a diagnosis of Cyclothymic/BiPolar II disorder and have just started tomapax as a possible med for treatment.  I'm taking 25mg a day and not having any side effects but am wondering if this is an accurate dose?  As of right now, she has me continuing on the 25mg a day for a full month.  I am wondering if anyone has any experience in initial dosing of this medication and if this seems accurate? I am in total acceptance of this diagnosis and am looking for some type of relief, thanks for any helpful input !! 

CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 4/19/2007 9:29 AM (GMT -6)   
Welcome to the board Volleyballer,
 
I'm so sorry to hear about your diagnosis, but I am more sorry that you have been prescribed TOPAMAX.  I rant and rave about this medication, as it did so much damage to my memory function and cognitive abilities.  I got up to 400mg per day, which was outrageous.  The senile old doctor thought I should move up to 800mg per day.  I was already a zombie at the lower doseage.  I stopped it two years ago and never regained all my brain function, expecially short term memory.
 
The standard starting med for Bi-polar is Lithium.  Did your doctor mention this as a possibility, or did he rule it out?  I would seriously have another converation with your doctor about your meds.  TOPAMAX works for preventing migraines for some people, but I think the risk of side effects, sometimes permanent, just isn't worth the chance.  This is just my opinion, but read through some of the TOPAMAX strings for some other opinions.
 
Good luck and let us know how you are doing.
Leigh Ann cool

"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett


Volleyballer
New Member


Date Joined Apr 2007
Total Posts : 5
   Posted 4/19/2007 10:48 AM (GMT -6)   
Thanks so much for your thoughts on the Topamax, I have gone to other websites and have been researching information regarding Topamax and it seems to be used more for migraines than Bi-Polar disorders. My doc was trying to stay away from Lithium because of the necessary blood draws to stay at a "safe" dosing. But maybe it's something that we need to reconsider. I'm finding that I'm impatient with the process of getting on the right medication and right dosage, but I'll keep plugging away at it !!
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