Yeah, Namenda did this to me - real low to no effect - I have some entries in my public journal while taking this but not doing the TRT at all - I was so excited and then I had to go through a period of depression - because i needed Namenda to be the answer - and be consistent - low tinnitus everyday and it wasn't and that sucked.

this is so hard -

Bob you have a great doc.

My doc said the exact same thing when I asked for lidocaine - he's like, no way - who told you to ask for lidocaine?

If you doc will let you try anything - look up the Campral study - my doc said no - some people taking campral 3 x a day - reported lower tinnitus -

I wanted to try it - I would have to become an alcoholic - and then go back and ask for it -

yeah, I should tell my doc I'm kicking back a case a week - but then she would take my xanax away and my ambien xr away - and call my husband and maybe the psych ward - yeah, ditch that plan - don't want to do that -

I'll just see if anyone on the board ever comes along and says they had campral or not.

Bob, bTW - you have a thinking doc - if he says no to campral - well, there's a good reason - my doc says no one out of three times I beg - so I can't really tell if its life or death - or she doesn't know enough about it - like your doc - to make an informed decision - she never offers to look things up - she may - but doesn't offer.

I hope you find what works for you - what side effects you'll put up with to get relief -and you never run into more harm than you've had -

winterbridge: man, the warning label you typed up is on my aspirin bottle - what's a tinnitus sufferer to do out here?

I'm with Sue and Mandie--when something works and then doesn't, I get really bummed. : (

The Campral thingie--a lot of docs won't give it to you (including one of my ENTs) because the clinical trial was so small--25 people--even though it had a fairly good success rate (76% I think. Maybe 56%, not sure) for lowering T. I saw a video online from a news station of an older woman whose doc put her on Campral--she has had T for 30 years--and it helped her.

Another doc I came across online said he will give it to anyone who asks (he doesn't offer it on his own to them)--he has given it to about 20 patients and it has helped 3 or 4. Much lower stats than the trial of 26 done in Brazil.

But the Oregon Health Sciences just finished a Campral study and hopefully the results will come out before too long...

Bob, thank you for updating us on how the new med is making you feel. You are great about keeping us posted!

Mccurdo - your research skills are phenomenal - yeah, I would have tried it and come back to the board - but they won't let me.

Im not giving up on it and in fact I do believe it still works. Its not a silver bullet but I have no doubt that Im a little better since Ive started taking it. I have daily periods of low volume and the pitch is usually lower as well. It also seems to help more with my anxiety than the klonopin did. There are some side effects but so far they are minor. Today is the first that I haven't taken Klonopin but I guess the day isn't over yet.

MandieGrace I did mention Campral to my doctor and he considered it but would like to try other options first. He asked me to bring in any articles or studies on it. I need to find the results from that Oregon study. I thought someone posted it on another forum but I need a better source than that.

Mandie--Aww, thanks, but you have me beat at research hands down!

Bob--The Oregon trial just finished--the results are not out yet. At best, you could take him the trial of the 25 people in Brazil.

I asked my psych about Trileptol and he said that since T comes for the epilepsy center of the brain, Trilepto; made a lot of sense for T. He said if the Gabapentin/Klonopin combo stops working for me, Trileptol or Xanax are options we can try.

About Campral, he said though the study is small, like alcohol, it suppresses the glutamates in the brain. Problem is, when the alcohol wears off or you stop taking the Campral, the glutamates come rushing right back. He didn't offer to let me try Campral (I told him about the Oregon Health Sciences clinical trial that had just finished), but he also didn't act like he'd refuse me if I wanted to give it a go someday.

He was iffy about oral steroids, though figured a couple rounds of them MIGHT "settle" something irritated in my ears since my infections, since the 2 steroid shots I'd had had helped for a bit, but not the full time they were supposed to (but took my T to zero for hours both times).

He said an antiviral was something else he also considered, but he did not offer to write a script for one. Hmm. I see a Neuro-otologist on the 17th, I'll bring up the question with him.

I'm now taking 300mg 4 times a day. Spreading out multiple dosages seems to have a better effect. Pretty much all of the side effects I mentioned are gone.

If I was going to put a number on it I'd say I'm 50% better.

The pitch has been constantly lower throughout the day and my anxiety has pretty much disappeared. The volume fluctuates but it is usually lower than a day without Trileptal. Since the pitch has become low and constant and my anxiety is gone I find that I'm able to forget about the tinnitus more often.

Bob--That is great news!! : )

Thought I'd provide an update.

I'm up to 1500mg a day which is 300mg x 5. I spread it out through the day. My tinnitus seems to go about 50% lower about 20 minutes after I take a pill and the effect might last 2 hours. My Doc said it shouldn't be working like that but facts is facts. He thinks my liver might be removing it super fast my my system which is why the effects disappear so fast. Chances are that over time 1500mg wont be effective and I'll need to go even higher to get the same effect.

High 5 to Bob!

What is the maximum dose you can take? It's so hard to be on this never ending roller coaster. I hope this continues to work for you.
Sue

Over 1500mg and you need regular blood work but my doc says kids with seizures take up to 2600mg.

I think BobsDream once said that 4% of all carbamazepine prescriptions written were for T, so it seems it is indeed helping some T people. But as you say, Tham, Trileptal has fewer serious side effects than Tegretol.

Bob--what side effects do you have/did you have from Trileptal? Are you still taking 300mg x 5?

I'm at 900mg now.

Trileptal gave me some nasty side effects in the beginning. Extreme hunger, extreme drowsiness, and acid reflux. Those all faded away after a few months and actually my regular acid reflux is better now. I don't have to take Prilosec anymore. Cognitive dulling is possible but not really noticeable at 900mg.

BobsDream,

I am glad to hear that you have found something that works for you at least for awhile. Trileptal like any other antiseizure medicine does take awhile to build up in your system. The only reason I know this is because I have epilepsy and I am on medicine for it right now. You might ask if they have an extended release tablet that will last longer during the day. Good Luck