Yes I did before the diamox... I still do at times but not as bad as before. It got worse with Topomax!!!!
My job requires my to use my brain. I would find that I couldn't process things as fast. Which that would lead to frustration. I use to be able to multi-task at work. Now I can't....
My sleeping habits are much worse.... My husband says I toss and turn ALOT and breathe really loud (he says it not snoring just breathing) and he can't wake me at all...

Jazzy:

As you guys already know I was started off on a fairly high dose of Diamox (1500 mgs.). It took a little over a month for me to begin feeling "well" with this dose.

While I can absolutely tell you that prior to the Diamox I had memory problems from the IIH, I can't recall having memory problems when I started using it.

However, I can tell you that my husband had made a comment to me this week that I seemed to be doing better. When I asked in what way, he said that I seemed sharper and more present. He said that before I was kind of absent and my memory wasn't that good.

Of course, now they have upped my dose again, so......what was I saying??? (LOL)

Not sure if in all that rambling I answered your question, but, I hope it helps.

-MM3

Jazzy,

I dont know if this helps or adds to the confusion but now that I am off Diamox (was on 1500) my mind feels more clear and I am right now evaluating my memory problems because when on Diamox I definitely had memory issues, word finding issues, dyslexic issues and my wife even caught me shuddering on multiple occasions. Also though during the time I was experiencing all these issues I had IHH pressure headaches so I dont know if it was because of the pressure or the Diamox or a little bit of both.

Ill let you know if I start getting a lot better know that I am off Diamox.

Hope this helps,

TJ

Don't know if this adds at all to the conversation, but my best friend was taking Topamax for her seizures. She had to stop becasue she was in law school and needed her brain. When I began to take it, she told me about the cognitive side effects and how, after long term use, you don't get your brain back to the way it was. Scary.

It's called Dopamax for a reason. I was completely non functional when on that stuff. Just like all the other meds, some of us handle it better than others........

Permenant brain issues is way too scary for me.

I had no idea Topamax had permanant effects on your brain's cognitive ability, etc...
I developed an intolerance to Diamox and can no longer take it, and Topamx seems to be the only drug that helps with headaches.
Even after my decompression surgeries, my doc still wants me to stay on the med.

I'm new here (but I've read all of the previous posts!), but this is an issue I've really been struggling with a lot. I was only diagnosed with PTC 2 weeks ago, but my memory/concentration issues started at least 5 months ago when my symptoms dramatically increased in severity. I homeschool my kiddo's, so this has been an especially problematic issue, and one made worse by the Diamox it seems. I've noticed since being on Diamox that I often stumble over words while reading aloud and have poor word retrieval in general conversation. Also while reading (to myself), I often have to re-read things a number of times to "get" what the author is saying, because I'm having a hard time concentrating. It makes work VERY difficult as well. I used to be quite a multi-tasker, now I struggle to get through the simplest things. My doctor just added Topamax to the mix Friday, which is discouraging.

Jazzy,
My memory got worse with the drugs, but everytime my pressure would go up my memory went...I had the same side effects on both Diamox and Topamax...but I had them without the meds too....now I am on an anti anxiety/muscle relaxant and its KNOWN to cause short term memory issues, and those are much worse, I forget things I just did or was just told, minutes later.

Charlotte

Welcome to the group KSMama!

I completely know what you mean. My friends and family have taken to finishing my sentences for me cause I can't ever find the word I'm looking for. It's like we're playing Super Password or something and everyone knows what I'm trying to say but me. And it takes me forever to write these posts, because I go back and re-read them to make sure it makes sense.

It's been about 7ish months now. It's quite enough that we have to approach life differently because of chronic pain and fatigue. But it's also the little things you have to get used to... like forming sentences, remembering people's names, and tolerating the head washing basin at the beauty salon. I HATE THAT THING! It's excruciating.

Thank you all for your posts. I remember when i was taken off of Diamox my memory improved but now it is getting worse again. I had no idea that topamax could cause perm. cognitive deficits! Scary to think drugs could potentially do that.

I am seeing a new neurologist Friday so I am going to ask her...I also have some balance issues, not bad, but every now and then I tend to walk sideways into the wall (thank God for wall, lol), but I can walk a straight line if I concentrate (my NS had me do that one before my surgery and he had to hold my hand for balance).
I'll tell you what she says.

Jazzy

Well if my post above is any indication of what being off Diamox is like then we are all in trouble. I really dont have some new disease called IHH but I guess you all figured out what I meant.

Hey MM3 did you catch any other new words in there?

Bax, I have an idea. If you want to eliminate that excruciating experience I will lend you my shaver and you can just give yourself a cut when you need one. Might not be the same look you are sporting now but

Jazzy, Good luck with the new Doc.

KSMama, Welcome.

Lucy, We need to find out more about long term effects of Topamax. I would hate to see those side effects become permanent in anyone.

Morning everyone!

Thanks, TJ! Actually, my hair is already practically shaved in back, I'd just need to take shave off that pesky long stuff in the front I keep feeling the need to dye.

Jazzy... let us know what your doc says about the Topamax. I like to think my BFF is a good source, but even she would admit to being a "hot mess."

Thanks for the welcome TJRasta & Bax...and Jazzy I'd be curious to know what your neuro says about the Topamax as well (seems to me I've read something similar online). I just got back from an overnight hospital stay because of it (at least I think that was the culprit) & every doctor I dealt with seemed shamefully ignorant about the medication.

Hi Bax and KSMama,
sorry, I tried tompamax once and I couldn't tolerate it so I never took it again (it made me feel like I had taken acid, though I never have, just what I've seen from movies), I've only taken diamox...until I couldn't tolerate that either anymore, and Lasix. So....I won't be talking to my new neuro about it. Sorry again, but hope you are both doing well. Blessings, Jazzy

Jazzy: I have a replica of your memory problems. I also have problems with my short-term memory problems, my spelling have changed dramatically (nobody understands me, not even my own husband) and I have serious troubles finding words all the time (and sometimes the word comes back all of a sudden few days later, when I'm no longer trying to remember it). The point is that this began some months before my PTC was diagnosed and long before I was started on Diamox.