dgn, how did 100mg do for you? Is the T low or lower? Are you experiencing any side effects? Thanks for the updates

So side effects, just started on 100 mg.

So far, not really impressed. How about you ?

DGN, I'm not sure why you say this med is strong. It is just a seizure med, given at an AVERAGE of 500mg to people with seizures. 100mg is not much at all! It would not stop anyone's seizures at that level, most likely, and I doubt it would stop anyone's T at that level either. I began to have it lower my T at about 350mg, and it did not make me stupid or groggy like gabapentin (another seizure med) did when I took IT at levels given to people with seizures.

Pramipexole is a stronger med (for Parkinson's) and, again, it was given to T people in clinical trials AT THE LEVEL given to Parkinson's patients, and it helped their T (in large numbers). People who take it for T take it at levels given to Parkinson's patients, not 1/5 the dose like you are doing with Myso (100mg vs 500mg)

I am not saying Mysoline will work for everybody, but I am saying if you try it, at least give it a chance at the level that MOST people take it (which is 500-750mg). If you aren't having any side effects, then why will your doc not let you slowly increase it to AVERAGE levels? If you don't want to go up to the average levels that the med is given, then it prolly isn't worth trying, though I suppose there is always the *chance* it might help you at 1/5 the dose (100mg instead of 500mg). My guess, though, is our T brains need the GABA and glutamate-inhibition that 450-500mg provides (as indicated in clinical trials about GABA and glutamate-inhibition on T); my guess is that lower than that just isn't nearly enough of what our T brains need, so it isn't going to work at that level. It's just a drop ion the bucket. :)

If taking seizure meds at typical levels make you nervous, and you are willing to wait for other solutions to come along in a few years, I understand that. Not everyone is willing to take meds. That's fine. I'm just saying *if* you try Mysoline, give it a chance at TYPICAL levels that are given to people with seizures. T and seizures (and Parkinsons) stem from the same part of the brain...

I had side effects from gabapentin and, later, from Pramipexole. I didn't have any side effects from Trileptal (another seizure med I took at average doses as people with seizures), but even taking Trileptal with Klonopin together didn't work as well for me as Mysoline. At 500mg Mysoline, I've had no side effects. (A bit of constipation at first, but that's really rare--like 2%--and that cleared up--maybe wasn't even related, IDK.)

If you are willing, please see if your doc will let you go to "seizure level" on Myso and see if it helps. It's not really *that* powerful of a drug in the sense that many people have taken it safely for many, many years. My super-super-smart doc here (one of the smartest docs I have EVER had, esp about meds--and due to my other health issues, I have seen A LOT LOT LOT of docs in my life, including crazy-smart neurosurgeons in Chicago!) had no problem at all with letting me work up on the Myso to the average level given to seizure patients. Oh yeah, and my OTHER doc who used to be a pharmacist and also knows a lot about drugs had no problems with me being on Myso at 500mg for my T either. This other doc was the one who gave me steroids and other things early on for trying to manage my T, and when I said I was on 500mg Myso because of the GABA and glutamate inhibition and it seemed to be helping, agreed that it made sense...

I'm not trying to talk you into it if you don't want to (even though it may sound like it, lol), I'm just saying I don't think you should be worried about trying 450-500mg for awhile if your doc will let you.

Mc, I have my GP appointment Nov 8th to see if she will let me try this medication in the hopes that I have as good of results as you have. Thanks for keeping us posted.
Sue

McMurdo, you have to understand that we we are using something for something we don't have.


So, I just want to be careful. I am at 125 mg

I am still at 125mg

It works, but not perfect

It works?! You're getting results at 125mg? On a scale of 1 to 10 what would you say your T normally is and where has the mysoline placed it? I know many say we shouldn't rank but I'm just trying to get an understanding. Anyhoo it doesn't really matter I suppose as any improvement is good! So glad for you!! I have an appointment with my GP Nove 8 to talk about Mysoline and I'm hoping she doesn't give me a hard time.
Sue

DGN,,, Please be a little more specific here.." It works but not perfect" leaves too much to the imagination.. Are we talking a 20% volume decrease?.. 50%?.. Please help us out here..
by this time you should be on 125 mg 3 x day.. Are you just taking 125 at bedtime?... Please let us know... bob

More details please DGN?

Details, YES!!

Sorry guys, I went up to 250 mg, it did not work as expected.

For a while I thought saw somehting, but the realality is, it just did not bring down my T down on a consistent level.

It was up and down.

450 mg might just work. McMurdo is doing that amount, and it works every day for her.

I not willing to go past 250 mg. So I stopped it.

I'm thinking about trying it but what is the reason(s) for you to stop at 250mg's ? I need to know this to make my decision one way or the other.

DGN, how long have you been on 250? I see on 10/20 you were on 125 and on 250 you said 250 was not working. First, you should only increase by 50mg every three days--it is a seizure med, so you have to go up and down slowly, like you would with gabapentin (also a seizure med). Second, it can take a few days for you to build up enough of it in your bloodstream to notice a difference. Did you give the 250 a full three days to see if it worked.? (I still think that is too low--the therapeutic level for Mysoline is 450-750mg, but you never know...250 is worth a try if that is only as far as you want to go. Just be sure to give it a few days to build up in your system.)

If you are stopping it, back off it slowly (50mg every 2-3 days). But I'm sure your doc told you that,

Oops, I mean on 10/23 you said 250 was not working....

dgn58, Really need to know why you stopped at 250mg when maybe a 500mg dose would have worked. You have quite a few people that would like to know. Were all lab rat's when it comes to tinnitus. Did you feel bad? Make you tired? Insomnia,etc.??