Since it's a seizure med, you have to work your way up. I went up to 500mg, but backed off a little when I had a reaction to another (not my usual) generic for it. (I take the generic made by Qualitest--so far, no problems with that one.) Now my doc writes my scripts for "Mysoline generic, Qualitest brand" so Walgreen's doesn't give me the other brand of generic (which gave me a headache and stomach ache). I now take 400mg which seems to be keeping my T just as quiet as the 500mg.

Oddly, I always wake up with T, but most of the time, it will stop after I'm up and moving around for 30 mins or so. On the Trileptal/Klonopin mix I was taking before, I would wake up to quiet days or T days and was stuck with that--good or bad--all day (I'd have about 5 quiet days a week), so it still takes me minute not to freak out when I wake up to T on the Myso; I have to remind myself that in all likelihood it will go down/stop, and most of the time, it does.

I really enjoy reading your posts, you very informative.

Julie, my biggest worry from the start, with all these different meds, are the fact that if you are taking a medication that works for your T, which is great, what are these meds doing to your system, in regards to what the meds are actually being used for.

I read a very good article from a doctor, who really cares about people with T

His article was great, and mention several meds that can help your T.

But his concerns, were about the long term effect on your system.

Yes, meds taken long term are always a concern. But many people take seizure meds for years and years and years. I have a wonderful doc who is extremely smart, and he always warns me about side effects to watch for. I was more worried about Pramipexole--a Parkinsons med (also taken for restless leg syndrome)--than any seizure med. Even gabapentin is a seizure med, but many, many people take it and for many different things (not just seizures) for a long, LONG time.

But we all know T is a jerk and has a way of ruining things that seem to work in the beginning. I have only been on Mysoline for about six weeks, so we will see.

A PhD in the pharmacy department at the university in my town is planning to write an article and hopefully get it published about my success (i.e., total quiet on most days) with Mysoline and hopefully that will cause more people to try it and see if they also have success. As this guy said, this is often how we find out about things that work for difficult-to-help illnesses.

What are the meds the doctor mentioned for T in the article you read?

Julie

PS: 400mg (which I take) is an average-to-low dose. 750mg is considered a high dose, but some people need that to control their seizures.

And you are right; every person must weigh for themselves whether they are willing to go the meds route for their T at the risk of possible side effects and/or possible long-term issues. I have already weighed that decision. Having a super-smart doctor you really trust helps. :)

L-baclofen for one. I will find the other ones, and let you know (I had them written down).

Are they the ones along the right side of this page?

http://www.tinnitusreview.com/l-baclofen/41/

Julie

I am up to 1200 mg Gabapentin and 1 mg af Ativan per day. I hate relying on pills but the T is overwhelming without the meds.

Here is an interesting article:

http://www.sciencedaily.com/releases/1999/04/990408071223.htm

Pat

So Julie, does the mysoline completely take the noise away when it goes after the 30 min? Are you experiencing any side effects from it? Are you taking other meds along with it? Thanks. This is fascinating and our results are intriguing.

Interesting, Pat. Hair cell regeneration are why I thought stem cells might help in the future, plus they could fix whatever has gone haywire in our brains.

Geo--if you are already on seizure med (gabapentin), maybe see if your doc will switch you to Mysoline (I use the generic by Qualitest--the other generic made me sick [headache, stomach ache], but everyone is different). Its action is a little different in the brain/body than gabapentin. If your doc will listen to anectdotal successes (many docs won't), tell your doc someone in your group is having success with Mysoline and maybe he/she will let you try it. I'd like to hear if others have success with this med. I DID have to cut back on the Klonopin I was taking, but it wasn't hard to do because the Mysoline helped so much. I can take up to 1/2 a Klonopin pill .,5 mg?), but I rarely do. Benzos like Klono and Xanax and Ativan increase the GABA in your brain, which is probably why they help T (trials have shown that increases in GABA helps lower T volume), and Myso does the same thing (in creases GABA). Plus Myso ALSO reduces glutamate in the brain--another thing that has been shown to help T in some people.

I had originally asked my doc for phenobarbitol when I read it increases GABA and reduced glutamate, but he said let's start with Myso--rather than being straight phenobarbitol, it turns into phenobarbitol in your system.

Erik--Yes, it takes it away completely or so quiet that I have to listen for it. Because I am so used to (after 2 years of this) waking up and hearing my T and knowing that meant a bad T day if I heard it (on the Trileptal/Klono combo, some days I woke up to silence), I instantly panic--"Oh another bad T day! UGH!" I have to remind myself that on Myso, it will likely go down. So my doc said I could take 1/4 to 1/2 of a Klono before bed if I want and that might help with the panic/anxiety every morning. It does, but it doesn't seem to be helping lower the T at all. I still wake up with the noise and after 30-60 minutes, some coffee, getting moving, etc., the T stops.

So far, no side effects. I had bad side effects on Pramipexole, so I am keeping a sharp eye out for any problems.

No Julie, I will find the other list, from the article, which my doctor had reviewed with me.

Julie

I believe you said you have been on this about 6 weeks. Keep us updated on your progress. I wonder- Is this something that you have to take daily to have in your system all the time for it to work, or something that you can take as needed? I have some days where the whole day is pretty good and I have some like the past couple where it is loud and annoying. It would be nice to have something on standby to take just for those bad days.

Erik--It is something you have to take daily, I am pretty sure. But I have no proof of that. That method would be worth experimenting with--and if you do, please let me know because of that PhD who wants to write a paper on the success of Mysoline for my T--If it works for you in any fashion (even on an as-needed basis), I am sure he would like to know (keeping all names anonymous). :)

Things that lowered my T on an "as needed" basis are green tea (or green tea pills), turmeric/curcumin pills, red wine (like green tea, it lowers your blood/brain sugar), helichrysum oil (a few drops under my tongue and rubbed on the back of my neck--expensive, but I get mine from anandaapothecary.com--best grade and cheapest I've found, but still not cheap. I know it sounds WEIRD that a natural plant oil would work for T, but it does mine.), and l-tryptophan (though this one makes a lot of people sleepy--it's the stuff in turkey that make's you sleepy). There just are not a lot of things that help T on an "as needed" basis, sadly. :( Not even all these things still help me--green T and turmeric no longer do. And if sugar doesn't spike your T, some of them (red wine, green tea) prolly won't help yours, either. Oh, Klonopin will sometimes lower my T when I take it "as needed," but not always.

I will continue to keep you updated on my Mysoline results. :)

Julie, how is the mysoline going? Still getting good results?

Hi Erik!

Yes, still getting good results as long as I take the generic by Qualitest. I'm at just about 8 weeks of taking it now.

I still can't nap or eat sugar--tried to do both and they instantly spiked my T, per usual before the Mysoline. Not a 9 spike, but about a 6 in volume, so no fun. :(

Erik, I think I asked you a question in the Texas A & M thread?