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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Topamax trip
        
(Message started by: MarkV on May 23^rd, 2003, 9:59pm)

Title: Topamax trip
Post by MarkV on May 23^rd, 2003, 9:59pm

Its been over 2 months now on topamax. I started it because depakote stopped working. I'm chronic but on topamax only get a minor hit once a day now. Its the best any drug has done for me !!!

The down side, I still have a hard time concentrating, still slightly in a fog most of the time during the day. But its getting better since I started topamax.

Does anyone have long term experience with this stuff? From the archives, it all seems like you either wig out all together or you seem to have major success and never post again.

Whats up???? I posted previously, and it seemed like most here did not have any first hand experience with this drug.

Again, I'm having great suppression of my headaches, but I hope the long term brain lock subsides.

Anyone?

MarkV ???

Title: Re: Topamax trip
Post by cbolony on May 24^th, 2003, 6:04am

MarkV i seen some members post about topamax.
you are going to have to go to the search button and type in topamax for there post.I my self take verapamil and imitrex injections.I hope this helps you stay PF

Title: Re: Topamax trip
Post by middlecook on May 26^th, 2003, 8:24pm

I took topamax for several mos. a couple of years ago, I am sorry to say I had to stop taking it because I couldn't handle the fog I was in and needed help taking care of my children, but I seem to be very sensitive to meds. So maybe it will go away for you.

Title: Re: Topamax trip
Post by nancyann on May 27^th, 2003, 11:48am

I am currently taking Topomax since the begining of April. I am up to 125 mg. I do not seem to be having any side effects other than it seems to be making me slightly sluggish and my short term memory is slow. However I am just taking my time. It however is not really helping with the HA or maybe it is. I don't really know what is because I'm on so much stuff. I do know that it is helping with the seizures that i am having though.
\
Good luck to you.

Title: Followup
Post by MarkV on Jun 4^th, 2003, 8:07pm

Finally started getting used to it (3 months now?). Its working great for me. Headaches are very infrequent.

I still have a little hard time focusing when I read something like directions on how to transform a transformer toy for my son or something like that, but its not bad at all now. I also still get very minor anxiety attacks, but nothing like what I got before.

If time works its course, I think the side effects will get more and more minor as I get used to topamax.

Just an fyi if topamax is on anyone's potential future drug trial and error list -

Good luck to all,

Mark

Title: Re: Topamax trip
Post by Roxy on Jun 4^th, 2003, 9:32pm

Glad it's working for you Mark. Topomax did absolutely nothing for me, so I guess you are one of the lucky ones. Only thing that has helped me is shrooms.

Tracey

Title: Re: Topamax trip
Post by nancyc on Jun 7^th, 2003, 9:54pm

Mark, i was on topamax about a year ago and had bad side effects from it..mainly in a bad bad fog...have been on gabitril for about eight months now and started getting hit bad about a month ago...so my neuro added topamax to the gabitril...i am on topamax 50mg...this time i am not in a fog at all and have been on it since wednesday...seems to be helping already...today was the best day i have had in a month...praying it will continue...by the way, Barb D has been on topamax for years now..she is on a dose of 100mg as she is not getting hit at this time...and has not had any problems that i know of..if you want to talk to her, email me OK? smiles,nancyc ps..my neuro said they call topamax, dopeymax LOL. cause of the mental confusion it causes for some many people.

Title: Re: Topamax trip
Post by Frank on Jun 7^th, 2003, 11:00pm

I was on 75mg for about a month. I had memory loss and found it difficult to function at work. I couldn't organize my thoughts well enough to remember what I was supposed to be doing and could not prioritize tasks... I didn't accomplish much of anything. Not good for an engineer working on a hot project.

Title: Re: Topamax trip
Post by MarkHW on Jun 11^th, 2003, 10:10pm

I only went 10 days on it... I was on 25 mg and couldn't function. I felt like I should sit in a corner and drool.

I'm a business analyst that does database work and just couldn't function.

It didn't seem to help my clusters at all either. Many drugs don't hit full effect for a while, but I had none.

Mark

BTW... I tend to have a low tolerance for drugs that cause tiredness or confusion. I was only on .5 mg of sansert a day because any more caused me to be too tired and groggy to function.

Title: Re: Topamax trip
Post by Charlie on Jun 12^th, 2003, 6:55am

Yer not alone. I took Topamax for my epilepsy. Best anti seizure drug I ever had. Unfortunately, it turned me into a cabbage. It made me forgetful, unsure of myself and worried about something that so far as I know, didn't exist. Too bad too as it worked so well. Wish I hadn't had to knock it off.

Hope you had better luck.

Charlie

Title: Re: Topamax trip
Post by MarkV on Jun 13^th, 2003, 9:12pm

Charlie and all, the more I'm on it, the more the side effects go away. Its been 3 1/2 months or so now and the fog has cleared. I've noticed though that if I get a bad nights sleep that I have a little more concentration problems during the next day, but I would say with a good night's sleep I'm 90% back on the mark (pun intended). Hope to get closer to 100% the more I get used to the med...

Thanks for making me feel that I'm not the only one with the side effects to cope with -

8)

Title: Re: Topamax trip
Post by Koda on Jun 25^th, 2003, 2:26am

Hi
I took Topomax for almost a year- I had two cycles during that time and didn't have a chance to get off it. My Doc didn't want to change anything, so we added meds instead of taking me off Topomax. It helped for a while, so I wanted to keep on it... but little did I realize-

First of all, when I would wake up, I couldn't see. I got tracers for about half an hour, and my vision was all screwy- HEADS UP- in case you didn't know, Topomax is NOT GOOD if you have glaucoma in your family history. I went and got all the tests at an eye doc, nothing wrong but temp side effects.

Secondly, because I was on it so long, I actually FORGOT what it was like to NOT be on it. I became severly depressed- this "fog" you guys talk about completely took over my life. I thought I had some kind of emotional problem, I had lost the drive and interest in everything. Moved slowly, accomplished little, I lost friends and a job because I JUST DIDN'T CARE. I finally told my doc that I thought I was going crazy, and he took me off it immediately. I didn't believe it would change anything, mind you I still thought it was a mental thing- but I'll be damned, two days later I woke up in the morning and the strangest thing happened- I COULD SEE- colors were brighter, I was not groggy, for the first time in a year I actually FELT ALIVE, felt like a human, felt my limbs and breathed the air... I can't explain the immediate and powerful change...

Just be careful, and mindful of the changes you are going through- not just physically, but mentally and emotionally. I truly feel that I lost a year of my life because of that drug- I will try anything else in the world to alleviate my CH without going back there. Topomax was my personal hell.

But for those of you who have found success- as with any other treatment, best of luck and congrats!

Koda

Title: Re: Topamax trip
Post by Iactivist on Jun 25^th, 2003, 11:51am

Mark,

I am just starting my second round of Topamax treatment. I stopped for a few months after a successful year because I wanted to see if I still needed it. Like many others, I was and am concerned about reflexive chronic use of this class of drugs.

However, Topamax is an effective preventative for me, and I am starting it up again. In my experience (and as the many posts make clear) we are all sensitive to greatly varying degrees. Starting slowly is key for those new to it... perhaps 25 mg/day steps up per week, or every 2 weeks. 100 mg./day as a goal seems right for me. At that level I get relief and initial side effects faded away.

I have to say that like some others I too was bothered by side effects. For me, I experienced being 'cold,' and had some grogginess. Those went away. I also lost 22 pounds (grin), and continued to have some minor tingling of my extremities. Also, for me, Topamax is not a sex-killer.

My point is that, for many of us, ramping up slowly is key, as is sticking with it long enough for the bad effects to fade. For others, apparently there's just too much negative effect to outweigh benefit.

I hope this helps you and others.

Title: Re: Topamax trip
Post by NotH20 on Jun 26^th, 2003, 3:48pm

Hey MarkV - guess I got to this post pretty late....

I have to agree with Iactivist - a slow increas in the dosage is the key. My last cycle (which has been 1.5 years ago ;D ) was my first experience with Topomax. I used this with a very slow increase. Later the doc added Keppra which can be increased at a much faster rate. I was on Topomax for about 3 months and during the later part of the treatment started experiencing most of the side effects. In the beginning it was the foggy feeling and being very unsure of my self. Towards the end of my treatment I saw "bugs" in the kitchen every single morning. They weren't really bugs, but every morning when I walked into the kitchen (where there was more light) I saw these vertical squiggly lines on the perimeter of my vision in both eyes. Then those lines started appearing many other times throughout the day. Also, the tip of my nose tingled - as if a long hair was tickling the end. I constantly rubbed my nose trying to remove this hair ???

I would have to say that the Topomax most definitely helped me - and will use it again with my next cycle. In addition to the Keppra and Topomax, I was also on Verapamil and in the hospital with DHE IV drip for 6 days....WOW I was pretty messed up! ;)

Hope the meds continue to work for you,
Mia