Hi chelscole. Yes I had a short spell on this drug, back before they knew what was wrong with me and thought it was migraine.
Oh yes, I remember! The first two days were ok, then by day three I was sliding off the chair.It was like being permanently drunk! I hated it and gave it up after a few days.
I wasn't safe to be left on my own.

Are you experiencing the same symptoms? Or, is it actually helping you?
Sorry i cant add more.
But, welcome! Cath

Hello Cath

yes i am experiencing the same symptoms plus a few more shortness of breath fast heart beat etc i hate this med i feel like it isnt doing anything because im still getting the head aches i still cant do normal things without my head hurting but my neurologist is making me stay on it till i can see an neurosurgeon on the 9th

and also thanks for responding so fast :)

Hi again, is that the 9th of Jan?
That means you will be feeling lousy all thru Christmas?
That's not good news.
Has your dr tried you on Diamox?I know its not a lot better but at least you could start at a low dose?

Have you told your neuro about the tightness in your chest, shortness of breath? I don't think they would be too happy about that. Push that point.
Other wise I wish you feel better soon. Cath

i was on Diamox first and that didnt work too well lol and yes the 9th of jan so x-mas will suck this year and i told the doctor and he said give it some time its been a week and it hasnt gone away so i dont know what to do so i guess i have to just wait it out..............

Don't wait it out. It won't get better, sorry to say.. this drug isn't one that your body acclimates to. It was absolutely terrible for me- I was on it for about 6 months. My memory became so bad that I would forget to eat, shower, go to class, etc. Was always tired, dizzy, heart palpitations... I got the "just give it a chance", so I stayed on it way longer than I should have. It was really poisonous for my body.

You mean DOPAMAX? Topiramate is the generic name but the brand name is Topamax - doctors (at least a neurologist I met once) called it Dopamax because he said it makes patients dopey....nice huh?!
Anyways this stuff makes me confused, a little depressed becaused I'm so confused and can't remember anything, I always feel like I'm slightly lost and floating off somewhere I have come to fondly call "Mandy land'. . . which can only be found when I am on this drug!!! I swear really...I went off of it for three months because I hated feeling lost and ditzy all the time but then my migraines got worse so I caved and asked to go back on it. I'd rather be a little lost than in constant pain I guess.
I now make lists when I go anywhere just to be sure....if I were still in college or anything this would never fly with this drug because it gives me such memory issues. Some doctors will admit up front to this others will tell you its in "your head"....
This med, along with Botox treatments has helped me, until the cold Wisconsin winters hit, then the pain gets worse again.
Hope your doing well,
:) Mandy

I'm on it for the second time now. The first time I was on it, I started on a Friday night because I was warned about the side effects and I was hoping to avoid feeling dumb. No such luck. I went to work on Monday morning in a call center and took some calls and was doing ok for an hour or so and then the stupidity hit. I forgot my name. My supervisor was listening in on the call and burst out laughing. Thankfully the gentleman I was talking to was very understanding after I explained and remembered my name.
I got to do training for the last 7 hours of my shift, but I have never in my life felt as dumb as I did that day having to explain to that caller and then several supervisors why I could not remember my name.

Thankfully it does help me since I cannot tolerate Diamox. I also don't have the side effects as badly anymore and I am on 200 mg a day again.

I was on topamax twice. the first time I was real stupid and got hostile with nasty pins and needles. I think it might have helped the head pain so tried it again tapering the dose up very slowly. Still couldn't do it. Again pins and needles and then real stupid. I had to fight for my job so had to get off it.
If you are having SOB and fast heart beat though, you need to call ur doc and get off of it. Those are serious side effects which you don't play around with. OK? Don't mean to scare you but all meds can cause serious side effects and/or allergic reactions. Your sx sound serious! Plz let us know what you do. Nancy

My daughter has been on 100 mg daily for a year. She had tingling and spasms for the first few months,still has a memory problem sometimes, but thank goodness for the blackberry and notes. . The key to starting this med was startring slowly, 25 for a week, 50 bfor a week and then 75 and then stayed at a 100. She takes the 100 at night before bed so that most side effects are reduced while awake. He said drug stays in system for 22 hours so once a day is the key.
She swears by this drug. She has lost 45 pounds, no more paps and headaches are mostly gone. Only gets a 10 about once or twice a month. The rest are milder.
I wish you luck with it. It has helped my daughter. f

I am on Topomax now 100 mgs a day and 3000 mg of diamox talk about forgetting things, not knowing things I've known for my entire life and the worst thing not being able to go to the bathroom for 3 weeks. UGH, but I have to say, it does help and I am down to may be 4-5 level 10 headaches a month. The rest of the month my headaches are just milder.

I am on it, I am now on 50 mg and take it at night. I started at 25 mg. I still have headaches and have pins and needles. The Diamox was horrible for me. I have noticed being in sort of a "fog" and I am also short of breath at times too, but have not noticed it much...I thought it was more of a post surgical thing.

I almost wonder if I need more since my head and ears still hurt, but am scared because I can not go without knowing what is going on.

Tonia

Well I initially started out on Diamox and then they added the Topamax (but whomever mentioned the pseudonym of Dopamax is correct lol as that is what I was told by my PCP). But I will say that NR #1 (or Idiot number 1 as I like to think of him) is the only that started on conction from hell is the one that had me on all of this stuff and I couldn't think straight, I couldn't remember left from right, and I think I was too disoriented to really notice the headaches as I was so far removed from my head to really pay attention to what was going on with my head. But I knew one thing. I absolutely, positively HATED the Diamox, but NR #1 SWORE me up and down that it wasn't the problem but that were were going to start to slowly wean me off eventually becasuse it has too many long term effects. Well I took myself off of everything and immediately my memory got better.

So I followed up about a month later and he decided to stick with the Topamax only but this was his dosing schedule take 25mg at bedtime for 4 days, then take 50mg at bedtime for days, then 75mg for 4 days, then 100mg for 4 days. well after I hit 75mg once again I HATED it so I stopped taking that and for about 3 months stopped seeing him and stopped any and all meds. When the headaches and pressure got worse I when to my PCP and he put me back on the Topamax but taking on 25mg at bedtime to reduce the muddiness that's often associated with the Topamax (since I'd be asleep) and I really don't have any/many memory problems. Now as an asthmatic, I can't say that I've ever experienced any breathing problems either, or if I have I might have associated it with my asthma and used my inhaler to loosen up my chest muscles. But I will also say this, with the 25mg, I still experienced slight nausea and I still have constant headaches (I'm assuming that's a part of this condition that simply has to be dealt with, I did feel some slight relief from the pressure behind my eyes) but as of the last week or so, the pressure got worse so I upped my dosage to 50 mg at bedtime and if the pressure still gets worse I'm going to see if maybe Lasix might not be a better alternative for helping this condition out some, maybe even coupled with the Topamax, since the major problems that I have with the Topamax are the night photophobia and nausea, with minimal mind muddiness.

Hope this helped. I know I can be long winded, I've been like that all of my life.

No you helped out a lot thanks so much

Hi chelscole. I've been on Topamax since Sept. 16, 2011 after 9 months of Diamox without relief. It has helped me tremendously! I have slight short term memory issues that I've been able to deal with using notes and my calendar on my phone for everything! I titrated up very slowly to 100 mg and still had "breakthrough" headaches". So, my neuro upped the dose twice til the 150mg seemed to do the trick. I know many people have had bad experiences, but I just wanted to tell you about one good one. But, the others are right, you should tell the doc about the chest pain right away! Good luck.