hey all-


I just came out the back end of a wicked visit from the beast. After having the 666 removed from my forehead from popping Relpax like tic tacs and being pumped with Dilaudid at the ER for two days straight (the second day which did zilch) I am now four days into my Topamax escapade.

Besides feeling like I am having a continuous manic episode I have to force feed myself betwixt said episodes of exhaustive behavior. I have noooo appetite. I think I'm, even wearing my two year old out!

I usually awaken at 5:00 with a runny nose and the skewer in the left eye. Now I have the runny nose but no skewer. Instead a weird burning sensation at my hairline above my left eye. The only way to describe it is like acupuncture gone awry. I still wake up, I still have a runny nose and eye, but no screaming headahchay. Feeling just restless would be nice.

I've tried Verapamil but it didn't work for me. I don't know if I can handle this Topamax crap. Did anyone else feel like this? Does it level out after a wee while?

Marie  :D

Got O2?

        Potter

What dose of topamax are you on?

And yes that's about the normal feeling.  I had been hurting so damn long and had tried about everything under the sun (including surgery) THEN we tried topamax and almost immediately the pain stopped.

At first I kept thinking something was missing - I had the symptoms, but not the pain. I didn't miss the pain, but after having it for so long it was like something was just missing (only way I know to describe the feeling). I really was afraid to do anything for fear it was just a false alarm and Mr. Demon was just playing with me. Took about three weeks for me to figure out that the topamax was actually working.

I did learn to take it at night (didn't have the side effects that some people experience). Appetite loss is one of the side effects. You'll probably have some listlessness for a little while (that's why I say take the WHOLE dose at night - you'll sleep most of it off).

I've been on it since 99 and it's been my miracle drug. I still have high cycles, but for the most part I stay fairly sane. Tried getting off of it a couple of years ago and that was a BIG mistake. Won't do that again any time soon.

Let me know if I can help you get thru the first few weeks -- that's the hardest part. But don't miss the pain .. enjoy the PF time..

Hugs BD

Hi there.

Thanks for the help. I'm heading to my neurologist in a few minutes. It's good to know that others found it weird at first. So I'm assuming you don't feel so overly energetic (not in a good way) after a while.

It's also weird having all the symptoms but not headache.

And, I'll get an oxygen tank!

Tanks! (Sorry!)
Marie

Oh, Barbara. Thanks so much. I'd gladly take any hand-holding.

I'm reaaaaally scattered right now.

My dose is 25 mg for now.

Marie

Quote:

Insane in the membrane!

Pardon my ignorance, but what does that mean?

Brew,
Insane in the membrane is a lyric from a song.  The name of the band escapes me at the moment, but I believe it means "crazy in the head."

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so, so sorry.

And I'm so sorry, too. I don't do video links (they're verboten while using my company's computer).

Marie,

That's a really low dose, but it's great that it killed the pain (I started out on 75mg). Take it at night (regardless of what the directions say). You'll probably sleep off the weird effects.

A lot of people call it Dopamax but they usually take it in the daytime. I've never had that side effect. My memory gets a little vague at times (but I'm old -it's never been great  :) ). Other than that the only side effects I've experienced is weight loss (and I haven't found a downside to that one).

The only complaint I have about it is the expense of it. But I'll do without something else to get it.... My maintenance dose is 100mg per day right now.

PM me if you need help with it...

Hugs BD

Marie, I second what Barbara has said, both the good and bad in re Topamax. The first 2-3 weeks are the worst. If you can get through those the side effects begin to ameliorate. I lost about 15 pounds and basically was eating a lettuce leaf for dinner. But then my appetite began gradually to return. The mind.... well that takes a bit longer. I'm hoping to be able to think again one day soon.

Hang in there. It's a great drug when you consider the alternative, that cheery agony that we all know so well!

PFDANs, kiddo!
David

Ahhhhh,

Topamax.

I am currently maintaining a dose of 100mg per day. 50 in the morning and 50 at night. It's the best way for me to do it. Tried the all at night thing and It didn't work (mostly because I still forget to take them at times) better to forget half of your dose than all of it :P

The lack of an appetite is tough to deal with at first. I don't eat anything until dinner. Even then I am usually forcing myself to do that. I still get all of the symptoms and the occasional burn-through of a kip-8 in high cycle, but I can handle that with o2 or a Rockstar and some really loud Slipknot music at 150 decibles :D

I work in the telecommunications field, so I need my memory pretty sharp. It is not. I now carry a little pad of paper with me every where I go to take notes. I couldn't remember what 15-7 was last week, nor could I do it on my fingers. It made me mad, so I broke some Cat-5 modules and that made it better. I sometimes drive past my turn for work twice in the morning while looking at it before I remember to turn. It's the little things like that that drive me batty. They take some getting used to. I've only been on this stuff for about 2 months now. It's coming along now. I still get a little frustrated, but I just take a breath, call myself stupid, laugh about it, and move along. You have to make sure that you laugh about it for sure! The pain free time is bad ass!!!!

Hope all is well. Good luck and PFDN to you and yours!!

wrote on Jul 1^st, 2008 at 7:28pm:

Insane in the membrane is a lyric from a song.

I checked out that video. It is a stretch to call it a "song." But that's just my opinion.

Hah hah. That's hilarious about the Cypress Hill song! Yeah, I agree. But you have to admit it sure 'feels' like a CH!

Funny I thought I was the only one not wanting to eat anything until dinnertime. I've been rockin' the Red Bull in a serious way. Got hit two times today. Once in the midday sun at the playground. I thought I was going to die when my toddler refused to get in the car seat. Then she only slept for 45 mins. which got me through to the next one. It's really hard to power through these and 'pretend' everything is OK. What else can I do?

I'm concerned about my weight though 'cause I didn't have much to lose before I went on the Topamax. I'm eating pizza, chocolate, cookies, burgers, whole milk, yada yada and still, the waistband is loose.

Pretty soon I'll have to run around the shower to get wet.

I'm doubling my Topamax dosage on Thursday -- my birthday is Wed. -- God please don't let me get hit on Wed. Please! My husband's been brewing up some sorta secret plan up in his computer cave. I would hate to let him down.

Marie

wrote on Jul 7^th, 2008 at 9:25pm:

wrote on Jul 1st, 2008 at 7:28pm: Insane in the membrane is a lyric from a song. I checked out that video. It is a stretch to call it a "song." But that's just my opinion.

You're a brave man, Brew.....

Balanchine wrote on Jul 7^th, 2008 at 11:48pm:

wrote on Jul 7th, 2008 at 9:25pm: wrote on Jul 1st, 2008 at 7:28pm: Insane in the membrane is a lyric from a song. I checked out that video. It is a stretch to call it a "song." But that's just my opinion. You're a brave man, Brew.....

For checking out that video, or for stating my opinion?

No, no, for checking out the video!

OK, Update, the long and the short of it is: NOPAMAX.

This stuff ain't for me. Yesterday will be the last time I drive past my house!

Wish me luck!  :-/

I hear ya on that note, but I was driving through stopsigns.....NO GOOD. there has to be a better way.

Yeah, topamax really messes with your mind too much.  I was forgetting how to spell, names, I couldn't add...I felt stupid and my face and arms were tingling all the time.  To top it off, I had to pay for the medicine (so not cheap!) and it wasn't even helping at all.  I switched to lithium and it's been pretty good so far.  It took almost no time to take effect, the only side effects I've had is I'm thirsty all the time so I could drink a whole gallon of water in one sitting if I wanted to and I've never really been a chocolate fan but for some reason that's all I want to eat anymore (dark chocolate chex mix *drool*).  Oh, did I mention that instead of paying $93 for a ten day supply of topamax, I only pay $1 for a month supply of lithium (insurance covers it)?  I'm definitely glad I got off the topamax.

Forgetting how to spell or the meaning of words has been the worst for me. I was writing something at work and couldn't figure out how to spell the word 'future'  futere? furtre????  I majored in journalism for god's sake!

I still have an appetite on it, which I always thought was a bit weird for a former anorexic... I think running 30 miles a week means I work up an appetite despite the topamax.

~Kris

Last night I stood in my kitchen and forgot where I was! That was terrifying! I have to take care of my two year old. Next it'll be the gas and brake pedal. Nuh uh.

I'm off of it. Ack! And I had one big hand squeezing my head for two weeks anyway and a coupla big hits.

In addition, I've had a strange sensation in one ear since I've upped the dose -- like being in a plane that's losing altitude too quickly. Already my stomach is feeling a bit better and I'm looking forward to no longer trailing off at the end of my sentences.

Hopefully the folks who delivered my o2 tank this past week will finally remember to bring the mask!