Coping With Epilepsy Medikidz Comic Book Explains Epilepsy
Sponsored Advertisement
 

Go Back   Epilepsy Forum > Peer Support > The Kitchen


Reply
 
LinkBack Thread Tools
  #1  
Old 09-14-2011, 06:40 AM
Joined the Party
 
Join Date: Sep 2009
Posts: 86
Thanks: 9
Thanked 7 Times in 7 Posts

Finally got onto Topamax


Anyone got any tips or warnings?

I'm starting 2 weeks on 25 MG in the AM with reducing my Keppra to 750 MG AM and 1000 MG PM

Then 2 weeks 25 MG AM + PM and Keppra 750 MG AM + PM

Then I'm going back to my doctors and sorting out decreasing further till I'm off the Keppra

I read a thread earlier about nausea on topamax when you're starting off? I wasn't warned about this :{ But I did only get help from my GP in the end, she was very helpful and his written to my old specialist to try and get her to continue to see me instead of my new ignorant one

I've had a bit of a bad time recently with an ex partner/good friend being hit by a train on Friday and really having someone just listen to me about my medication really helped so I don't want to be brought down again with any surprise side effects x


Oh, I'd just like to add I took my tablets around 2 hours ago (2nd day now) and I feel really odd, as if I'm sort of dizzy and lightheaded but not full on, really weird feeling. Not sure if it's connected but it feels like my laptop is moving away from me, how weird.

Last edited by rhiz; 09-14-2011 at 06:59 AM.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #2  
Old 09-14-2011, 08:07 AM
Super Moderator / Thank You Queen
 
Join Date: Jun 2005
Location: Massachusetts
Posts: 7,568
Thanks: 206
Thanked 1,911 Times in 1,636 Posts
I haven't tried Topomax, but the weird sensation you describing sounds similar to what I've experienced when transitioning (either up or down) on Lamictal. I would notice it particularly while looking at the computer, when I moved my head in one direction while scrolling on the computer in a different direction. It was a bit like sitting in a stopped train while seeing a moving train, or having a mild version of "the spins" you an get when you're very tired or inebriated.

So you might chalk it up to your body adjusting to the new med. There may be side effects, and they may go away over time. Unfortunately there are no guarantees that your experience on Topomax will be the same as anyone else's... You can search CWE for comments about Topomax using the search button at the top, and may also be interested in this site: http://www.askapatient.com/viewratin...5&name=TOPAMAX
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #3  
Old 09-14-2011, 10:40 AM
Aicila's Avatar
Weaving the Community Fabric
 
Join Date: Apr 2010
Location: New Mexico
Posts: 177
Thanks: 5
Thanked 20 Times in 13 Posts
Topamax did not work for me, but I read a lot about it and it has worked for a lot of people. I wish it did work for me because it is my miracle migraine drug but I couldn't handle the side effects of it.

I also had some of the wierd sensations when transitioning up and down topamax. On the way down it was way worse, but the fact that I was also increasing 2 other meds could have added to the effect. I have been stable on these levels for a couple weeks and the only time I seem to notice the wierdness now is when I am really tired. So either it is starting to go away or I am getting used to it.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #4  
Old 09-14-2011, 10:57 AM
Cint's Avatar
CWE Supporter
 
Join Date: May 2008
Location: Littleton, CO
Posts: 1,802
Thanks: 162
Thanked 489 Times in 366 Posts
I'm taking Keppra + Topomax for over 10 years now, so have had time to get used to both of them. I'm on a lower dosage of Topomax than initially because it did make my depression worse, although it is also used for bi-polar patients. It is also Dopemax 'cause it can make one more "spacey" than some of the other meds. It does make me tire easy.
__________________
"The Golden Rule is that there are no golden rules."
~George Bernard Shaw
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #5  
Old 09-14-2011, 03:27 PM
Weaving the Community Fabric
 
Join Date: Feb 2011
Location: Baltimore, MD
Posts: 387
Thanks: 55
Thanked 33 Times in 33 Posts
Send a message via AIM to msuder0583
I am on 400 mg of Topamax a day, so my side effects are pretty severe. I really don't know if you will experience the side effects I have, but it is also possible. I noticed a ton of weight loss; about 50 pounds. Mood swings, depression, i space out, lack of motivation, displacement, slurred speech and bad memory are the worst side effects. And you also have to make sure you drink alot. especially drinks with electrolytes in it, because you lose alot of fluids and salt
__________________
"You will see that we are one, and life flows within and without you" - George Harrison

"A true friend stabs you in the front"

"Why do today what you can put off until tomorrow, however what is today but yesterday's tomorrow?"
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #6  
Old 09-14-2011, 03:37 PM
Joined the Party
 
Join Date: Sep 2009
Posts: 86
Thanks: 9
Thanked 7 Times in 7 Posts
Thanks guys, I do love some of the names these drugs get by the users haha

I will be taking 200MG when I get to my full dose apparently so I'm hoping mine won't be too severe, however when I was on Keppra I put on around 60 pounds quite rapidly (horrific for an 18 year old girl) so I probably won't be too upset by any weight loss, I was warned to drink a lot of water as I will feel thirsty but there is also apparently a threat of kidney stones or something? from a lack of water. So I will definitely make more of a concerned effort with water

I'm thinking now these weird feelings may go away when I get used to the Topamax! There is also the fact I'm weaning myself off Keppra too so I guess that isn't gonna help
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #7  
Old 09-14-2011, 03:43 PM
Weaving the Community Fabric
 
Join Date: Feb 2011
Location: Baltimore, MD
Posts: 387
Thanks: 55
Thanked 33 Times in 33 Posts
Send a message via AIM to msuder0583
Well I wasn't fat to begin with so it put me a little underweight. I'm about 6' 165 right now. So maybe a little less than 50 pounds. But it does kill your appetite. I'm also on Keppra. Hasn't caused any weight gain for me. Maybe because of the Topamax. Who knows. Yeah because of the Keppra you may have Keppra-rage. Topamax does make you feel weird though at high doses. There are times when I can move my body parts but it feels as though they aren't connected to my body. And also, I will be driving down the road and all of a sudden I will forget where I am for about 45 seconds and won't recognize any of my surroundings. According to my neurologist, it is because of the Topamax
__________________
"You will see that we are one, and life flows within and without you" - George Harrison

"A true friend stabs you in the front"

"Why do today what you can put off until tomorrow, however what is today but yesterday's tomorrow?"
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #8  
Old 09-14-2011, 03:48 PM
Joined the Party
 
Join Date: Sep 2009
Posts: 86
Thanks: 9
Thanked 7 Times in 7 Posts
Yeah, I have Kepprage all too often. These days I don't "feel" at all, I can't feel love or pain or emotions properly, they're all just stunted off. All I ever feel is irritated by EVERYTHING and if the teeniest thing doesn't go my way.. bam.. I'm off like a rocket! I also sleep for around 12-18 hours of the day when I can which is awful but if I don't then I'll drop off anyway and Keppra was never good for me. When I switched from Lamictal to Keppra my seizures changed from the myoclonic jerks I'd had for years, to full tonic clonic seizures as soon as I stopped the Lamictal, but apparently my neurologist didn't see that as a big enough sign that the medication may not of been a good match, and I've had break throughs every few months ever since :/

I'm hoping the side effects of Topamax are going to be less life impacting, the main ones I've heard about are taste related and the tingling feelings with the dumbness too, however my short term memory is already absolutely awful the past few years and I forget what I'm saying mid sentance already, so no doubt I won't notice the difference!
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #9  
Old 09-14-2011, 03:53 PM
Weaving the Community Fabric
 
Join Date: Feb 2011
Location: Baltimore, MD
Posts: 387
Thanks: 55
Thanked 33 Times in 33 Posts
Send a message via AIM to msuder0583
That's actually funny cause you've been on every medication that I am currently taking. Lamictal, Keppra and Topamax. To be perfectly honest with you, switching to the Topamax is not going to change those things that you listed very much. You are still going to be lazy, your memory and dumbness is still going to be present. You will lose the constant feeling of anger though. I hate that with the Keppra.

When I was just on Lamictal and Topamax I had breakthroughs, but now that I am on Keppra in addition I haven't had any breakthroughs yet, so I'm really not sure. But Topamax is a very effective medication in my personal opinion. Plus you don't have to worry about getting headaches often
__________________
"You will see that we are one, and life flows within and without you" - George Harrison

"A true friend stabs you in the front"

"Why do today what you can put off until tomorrow, however what is today but yesterday's tomorrow?"
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #10  
Old 09-14-2011, 03:57 PM
epileric's Avatar
Super Moderator / Spaminator
 
Join Date: Dec 2007
Location: Ottawa, Ontario, Canada
Posts: 3,849
Thanks: 159
Thanked 719 Times in 605 Posts
Originally Posted by rhiz View Post:
I'm hoping the side effects of Topamax are going to be less life impacting, the main ones I've heard about are taste related and the tingling feelings with the dumbness too, however my short term memory is already absolutely awful the past few years and I forget what I'm saying mid sentance already, so no doubt I won't notice the difference!

They may be the same or they may be better or worse. If you look at what everyone says about any anti-epileptic drug here you'll see that everyone reacts differently and in different intensities.
__________________
"It's no longer a question of staying healthy. It's a question of finding a sickness you like." -Jackie Mason
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #11  
Old 09-29-2011, 02:05 PM
Joined the Party
 
Join Date: Sep 2009
Posts: 86
Thanks: 9
Thanked 7 Times in 7 Posts
Originally Posted by msuder0583 View Post:
That's actually funny cause you've been on every medication that I am currently taking. Lamictal, Keppra and Topamax. To be perfectly honest with you, switching to the Topamax is not going to change those things that you listed very much. You are still going to be lazy, your memory and dumbness is still going to be present. You will lose the constant feeling of anger though. I hate that with the Keppra.

When I was just on Lamictal and Topamax I had breakthroughs, but now that I am on Keppra in addition I haven't had any breakthroughs yet, so I'm really not sure. But Topamax is a very effective medication in my personal opinion. Plus you don't have to worry about getting headaches often
Thanks for your advice I've read about the dumbness + memory being quite a pain on Topamax but I'm used to them now and with my job it's not something I rely on, however the laziness and tiredness hopefully will be less severe so that's a bonus for me! And the anger too, hate that so so much.
Originally Posted by epileric View Post:
They may be the same or they may be better or worse. If you look at what everyone says about any anti-epileptic drug here you'll see that everyone reacts differently and in different intensities.
Well so far I've had weird sinus problems causing really quite bad pains behind my eyes (I thought they were eye problems but I went for a pressure test and it appears it could of just been sinus related) but they've already gone (woohoo)

However now I can't touch anything made of fabric or my own hair without my hands going either numb or developing pins and needles, quite an.... odd feeling I must say

Other than that I can't say I've seen much else with the medication, I think my Keppra changes are severely upsetting my body (as I'm decreasing the Keppra as the Topamax is increasing) and my weight is increasing morbidly and I'm very tired but I have been getting up at 6, working 9 till 6 and coming home at half 7 all week so that may be why too :P I'll see how I do next week as last week I was 1750MG Keppra + 50MG of Topamax, now on 1500MG Keppra + 100MG Topamax
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
Reply

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
Finally Trinity The Kitchen 1 09-12-2011 07:16 AM
Here I finally am motorbill66 The Foyer 6 09-01-2011 11:02 AM
Topamax Sprinkles Vs Topamax Tablets, Same? davidmc The Kitchen 2 05-06-2011 01:17 AM
Finally Saying Hello Addie The Foyer 25 04-27-2011 10:56 AM


All times are GMT -5. The time now is 09:09 AM.


Powered by vBulletin® - Copyright ©2000 - 2012, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 © Measuring Up. ALL rights reserved.