yes my brother told me this befor. am 101 is not interesting according to my brother. certain ENT there said him that a tinnitus is not an ear disorder but it's a brain disorder. he said that autifony is promising.
sorry for my poor english.
Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
yes my brother told me this befor. am 101 is not interesting according to my brother. certain ENT there said him that a tinnitus is not an ear disorder but it's a brain disorder. he said that autifony is promising.
sorry for my poor english.
If this is true, this is quite a bummer for AM101. Could be totally speculative though...
I have one question for Τrobalt users: Is the improvement permanent? Or does it have ups and downs? I mean you go from 6 to 4, from 4 to 3, do you remain there or perhaps you go back to 6 some days and again down later?
And also, what happens when you stop taking it? Do you go back to the way you where before?
I have one question for Τrobalt users: Is the improvement permanent? Or does it have ups and downs? I mean you go from 6 to 4, from 4 to 3, do you remain there or perhaps you go back to 6 some days and again down later?
And also, what happens when you stop taking it? Do you go back to the way you where before?
MemberNo one knows. It is still tested here by the members.
What seems to be common, is that after around one hour of taking the pill, T goes down. It lasts 2-3 hours and slowly comes back. No one is permanently cured yet, except member mpt.
From all I have read, I doubt AM101 will be a success story. As you said, T is a brain thing.
SoulStation
Member
Um...no but its a step in a direction where there is new treatment.
@Markku could you please provide a public trobalt FAQ for the forum so we don't have as many repeated questions about this drug?
Did it really give you relief or only surgery did? how would you rate the 3 most successful treatments that you have tried? 1) Surgery 2) Retigabine 3) Tegretol and would you care to give them numbers please? Your case is like a guideline for others you know, you have tried nearly EVERYTHING!
It is not easy to answer. My condition has changed for the worse as a result of the improper use of hearing aids. In any case, if you have a clear diagnosis of neurovascular conflict,you have many drugs choices available. Surgery should always be the last resort. Does not guarantee results, and the data in the literature are in conflict. In my case it worked gaving partial relief.
With regard to drugs: Tegretol gave relief. Other (Gabapentin, Lamictal, Topamax ... etc.etc) not.
When I got worse in 2013, I made several attempts pharmacological. The most valid but with the huge problem of physical and mental addiction was Clonazepam.
Trobalt was excellent with low doses 100x3. It has much higher success rate than Tegretol in tinnitus disease but we have not officially papers about it. Unfortunately, due to significant side effects, I could not continue and I'm trying another way Keppra but it is too early to talk about results.
Whatever you're taking, if it does not work, follow always made by a neurologist of confidence. Do not go it alone.
Among the other drugs that have given temporary relief, only to lose effectiveness mysteriously, there is Cinnarizine or even better Arlevert or Arlevertan...dependig by your country (Cinnarizine + dimenhydrinate). is successfully used for Meniere's disease. It acts as a calcium antagonist on CNS suppressing hyperactivity coming from the periphery (Labyrinth).
I can not give advice because I'm not a doctor, but I'm sure you have a good chance of being able to find relief. Tinnitus is a multifactorial problem. I doubt that we will have a single pill that will solve our problem.
In case of conflict neurovascular rest of the opinion that the Tegretol was the best. It is no coincidence, it is a drug of choice for the treatment / pain of trigeminal neuralgia (who result a problem related to vascular conflict between the facial nerve VII and bloodvessel. The trigeminal nerve is the seventh cranial nerve very close to VIII (where you have the problem). You could benefit from them. Talk with your neurologist. The Trobalt is completely different.
The last important thing: neurovascular compression not ever is cause of tinnitus. All can born with a NVC on evidence on MRI scans but not ever it cause tinnitus...then: Make an ABR exam. If the waves IPL I and III are altered the conlict could be real the cause of your tinnitus. Another thing: have you got some TIC or Hemifacial spasm or sudden and fluctuanting hearing loss? To predict better the results of eventual surgery make also a Stellate ganglion blocking on the side of tinnitus and other test with intravenous lidocaine! Complete this step. Is most important for you if you are going on surgery.
I hope to be helpful
Best regards
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
I spoke with pharmacist and they said it is normal that person can get after few months worsening of sife effect like headaches, being zomby as medicine settles in (killing higher brain functions) while tinnitus can become stronger as that part of brain get used to the suppressing medicine so it becomes immune sort to say.
I am still on 300, and it hits me more and more, today i was all day heavenly sedated, i have t but i control it, it seem to react on specific sounds (it was never before like that), i must somehow end this horrible medicine to the wash put but rage of tinnitus becomes terrible
only if i could be in coma and they slow down medicine and then we start form start.
Why did you stop it?
In my country Cinnarizine 's brand name is Stugeron. Tried it for 2 months continuously. Didn't make any real difference.
In this post alone, you have given much more useful advice than all my ENTS (9) and neurologists (2) I've visited combined. Changed them all, imagine a few of them didn't even bother looking into my ear, or took a quick peek!!!
Don't know what these are, what is an ABR exam? What kind of doctor does these?
Also, I must find a doctor to know about these things, nobody I've visited seemed eager to deal with such things or even aware of them.
I have no TIC or spasms, no fluctuating hearing loss. My tinnitus is a high pitched constant noise (about 15000 Hz-CRT TV noise-like). I fluctuates making sudden small changes in pitch but mostly remains there in the high area. I also have a shell sound (lik Mpt's) that I hear, mostly when my basic high pitched TV-T lowers in volume (sometimes this happens, happened a lot during HBOT therapy). The sound of shell and feeling is like that Mat described in his initial posts. And also, a Morse code that is constant and unchangeable but not that annoying. Perhaps mine is due to acoustic trauma, I did suffer exposition to loud noise (loud alarm noise near me) for a minute or so that is why I am considering Retigabine. But my audiogram shows a gradual drop in highs (6000 and above) that is why a doc said it is not acoustic trauma but nvc as my ear- MRI indicates...
I think you should stay sedated until they find a cure.I spoke with pharmacist and they said it is normal that person can get after few months worsening of sife effect like headaches, being zomby as medicine settles in (killing higher brain functions) while tinnitus can become stronger as that part of brain get used to the suppressing medicine so it becomes immune sort to say.
I am still on 300, and it hits me more and more, today i was all day heavenly sedated, i have t but i control it, it seem to react on specific sounds (it was never before like that), i must somehow end this horrible medicine to the wash put but rage of tinnitus becomes terrible
Tegretol gave relief.
Why did you stop it? ...because the relief became incostant after 2 month. Incresing the dosage...no change...i was going for surgery!
ABR exam is the Auditory Brainsteam Response who help to indicate an alteration on the VIII auditory nerve due to neurovascular compression. It is a sort of EEG but exclusive for the auditory nerve.
Anyway...morse code tinnitus (Typewriter tinnitus) is the most common symptom of a neruovascular disorder of the AICA artery. Better results with surgery could be obtained when AICA (antero-inferior-cerebellar artery) or PICA(posterior-inferior-cerebellar artery) artery are involved.
best wishes
Soo happy for you. To me a few hours of peace will be nice. I will start my pills on Monday the 23rd. I have a few things to do and some guests coming over for dinner tomorrow and Sunday is the Firehouse Christmas party and we wont miss it! After that I can slow down and maybe this will be a Christmas gift for me. One thing I must say, I was happy to see how small the pill is...I can actually swallow a small pill like that. I usually have trouble with big pills... Happy day to all.
Come on my friend, hang in there. This community shows GREAT potential, and it is a light of hope for all of us. It is understandable how you feel though, believe me, it is sad but true. But we must not give up. This terrible condition makes doctors obsolete and on the other hand this forum MUCH more helpful than them. Even if you feel hopeless, we all have a purpose here. Plus reading and writing is something we can manage despite our monster that ripped us of other pleasures!
Hope that something is happening, especially with this drug sooner than the companies can provide for us is something really exciting. Personally, I do dream of a new scientific discovery that is (finally) put to test and apply succesfully in human beings. Let's hope this day comes closer and closer. A human being has already tried something really promising if succeed, the virus thing. Could turn everything around that one...
undecided
Member
The results are very encouraging but don't get too excited...
I've been on RTG since the start of November.
The high that I get in-between doses is nice and RTG lowers or kills the T for some time.
But I very seriously doubt whether it has any sort of permanent effect.
Plus some side effects are rather nasty. Plus I never intended to get "high" from drugs in order to better enjoy my life.
I've been on RTG since the start of November.
The high that I get in-between doses is nice and RTG lowers or kills the T for some time.
But I very seriously doubt whether it has any sort of permanent effect.
Plus some side effects are rather nasty. Plus I never intended to get "high" from drugs in order to better enjoy my life.
what dose are you taking?
i understand different doses achieve diff results
anybody know about Dannyboy?
apparently it's turned his life around for the better.
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
Getting high is a temporary fix, and something you may have to pay a big price for later. You can't possibly take this drug forever. The party has to end at some point.
good point.
but trobalt seems to be doing more than getting people high
there have been solid reports of tinnitus and hyperacusis levels lowered
maybe, properly managed, trobalt could bring long-term relief
this is why i've considered it as part of a rotation regime
maybe even the new autifony drug will be a long-term treatment protocol
under good management, the party might go on
how is your T right now telis? wishing you wellness
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
Maybe your rotation regime might be a valid plan, I don't know. But taking this stuff regularity on a long term basis (based on reports here) doesn't seem like it's going to be tolerable without running into some serious health issues. And as far as permanent effects I'm more than skeptical.
MemberYou're not being difficult at all. Thanks for considering my question. I really don't ask very many - but if you don't have an opinion, you don't have an opinion. I'd much prefer you say that than try to conjure up one!
Dr. Stephen Nagler
It's a difficult question for me - and a very personal one
My issue with prescribing Retigabine off-label can be summarized as follows ...
Having considered everything I know about the drug and the history of medical approaches to tinnitus in general, I honestly do not believe that Retigabine has any pharmacological efficacy whatsoever against tinnitus. I strongly believe that what is being experienced on this board is a combination of placebo effect, coincidence, desperation, wishful thinking and mob mentality. But that said, I do not know it to be the case; I just strongly believe it to be so. There is one thing I do know for certain, however, and that is what it is like to truly suffer from tinnitus. Because that is precisely what I did in 1994-1995, and it left an indelible mark upon my soul and upon my being. So the real question for me has to do with compassion. Do I prescribe a drug that I do not believe has efficacy against tinnitus, one that has some very impressive side-effects, purely because a person who is suffering as I once suffered wants it. The answer is not easy, at least not for me.
So I have made an appointment with my own internist, an individual whom I hold in high regard, to get his thoughts on the matter.
Dr. Stephen Nagler
A professional approach would be welcome Dr. Nagler. Many Doctors think the way you do, that is why they do not prescribe Retigabnie. It is however ludicrous that all of them prescribe some other drugs, with less sideffects that do absolutely nothing and just say to you that you should keep taking them for 1 year or indefinitely. Who says that Cinnarizine, Betaistene, Ginkgo, or other anticonvulants does anything at all for this condition?
AICA is involved in mine. It is responsible for contact in the entrance of the acoustic pore. My 3rd tinnitus sound is like a telegrach or morse code sounds. It is more like a note that has pauses, not clicks or heart bits... I don't know if this qualifies as a "Typewriter tinnitus". And it is not the major bothering sound in my T, that is the constant steady high pitch of crt-TV like sound (15500Hz) that sometimes fluctuates.
To be honest, I would say a typical Doctors attitude has led him to this conclusion!
(no disrespect meant)
If you search Typewriter Tinnitus on pubmed you will certainly found the relationship with NVC and the effectivenes of Tegretol on it. When you describe "telegraph" you are talking about the Typewriter tinnitus who is the most responsive with tegretol or surgery. Now i'm from a slowly mobile phone. When return at home i will give you many officially papers about it. You can find it easy
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