Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
how do you mean, you done washout and then your tolerance went away?
could be i got kidney stone
Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
1MW
Member
- Nov 25, 2014
- 614
- Tinnitus Since
- 2008 but cured and relapsed from benzos
- Cause of Tinnitus
- ssnhl/benzos/unknown
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
well my t is terible but i use trobalt to sleep
he knocks me definitely for 8h and afternoon 2h.... I am afraid what if i stop how will i sleep. I wonder what if i would stop daily dosages and stay only on 400mg night dosage...
this i have never said....
When i and Viking were on good terms and he was at monastery in Italy, he spoke with his neurologist, and he said to me to try to stop trobalt totally for 2-3 days.
it was january 2015, @amandine remember i was in emotional huge distress and anyway i tried that to see will i get back this if i stop and what happen i don't 3 days without trobalt cold turkey and then after that started parestesias all over body and restless leg syndrome....
I stopped it and then started on legs like ants under my skin very painful not just uncomfortable and then it move and took lower part of legst too, then added feet and hands from elbow to wrist, and it spread to my back, and the under eyes on face, and forehead and than back head. 20 days there were cowlings, and only while i walked there would be no paresthesia. I consulted my own friends who are neurologist i Austria and Croatia and they told me that trauma of stopping this medicine too fast can cause permanent nerves damage and cause restless leg syndrome + paresthesias, and it was noticed that this has happened and it is documented in GSK doctor journals (place where doctor report side effect to company) for Retigabine drug, because they called and asked and they said this is likely possible to be triggered and never stopped.
So all you read on peaco of paper in box is not the only thing. People often think they can play with trobalt like aspirin but i know i had terrible january and february and i stabilised dosage and it became ok.
Now i do use to little trobalt to be compared to one before, so i can write clear. I think u can notice it. Before i wrote, and i just swallow entire word and nothing has any meaning. Now my swedish is ok, and english, or much better.
and even this lowering is causing me to get SMALL CHUNKS of paresthesias over body.
Member- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
monacco
Member
it's been 5 days without salt
the result was interesting with trobalt, so this drug works better with diet free salt.
the result was interesting with trobalt, so this drug works better with diet free salt.
- Jan 3, 2015
- 635
- Tinnitus Since
- 04/21/2014
- Cause of Tinnitus
- Sensorineural hearing loss right ear.
I'm also an advocate of wine (red or white) after 2 glasses my T virtually disappears ! I think the important thing is not to over do it - relying on alcohol is s very bad idea. But my understanding is that alcohol works on the same receptors as benzos so when I have a bad T day a glass or two of wine with my evening meal settles it right back down again. Thankfully, as time goes by, my bad T days happen less and less.
If only we could get Shiraz in tablet form . . . !
Try taking Resveratrol.
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
I don't think that's going to work, I'd bet dollars to donuts that the reason wine "works" is the increase in GABA-mediated inhibition as a result of ethanol's action on chloride channels...
- Jan 3, 2015
- 635
- Tinnitus Since
- 04/21/2014
- Cause of Tinnitus
- Sensorineural hearing loss right ear.
Hmmmmm? Let's all lease a vineyard and conduct our own clinical trials. Even if it doesn't work for everyone, it would fun trying! };-)
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
I'm down. I have a green thumb.
Let's do it in a legal-weed state so we can have a dual-purpose vineyard and also experiment on CBD's effect on tinnitus
Tony Joy
Member
i agree with needing to go to a high dose, but i think some people are tapering up way too slow. you want to undo the pathogenic plasticity, and slow moves are less likely to counteract the (new) homeostatic response than big ones.
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
well i had side effects but i am sensitive to medication. i needed one month to gain effect on tinnitus, but first 2-3 weeks it was almost nothing , it had some effects, but best was one and half months after.
but when i go down i get parastesias when dosage is not stable... but this is normal phenomenon that does not happen to all
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
On reflection I think it's inappropriate for these threads to be in 'treatments' and not 'alternative treatments'.
We're talking about using extremely dangerous drugs off-label, and the only clinical data which supports this is animal models.
All I know for sure is that this drug damaged me, pretty quickly and alarmingly, and I would not take it again for any reason.
We're talking about using extremely dangerous drugs off-label, and the only clinical data which supports this is animal models.
We don't actually have any idea how any of this works. There's literally no dataset here, we have a bunch of anecdotes, people have different experiences, and if you asked these questions to career drug designers and pharmacologists they would tell you that we're waaaay into the deep end of hypotheticals and if/thens.
All I know for sure is that this drug damaged me, pretty quickly and alarmingly, and I would not take it again for any reason.
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
re-ignition of a long-standing but long-dormant chronic pain/neuralgia issue with my pelvic floor muscles. Of course, I'll never know with 100% certainty that trobalt was responsible (without taking it again, which you couldn't pay me to do), but the timing coincides 100%, my primary care doctor thought that was the likely explanation, and some of the muscles involved are exactly the ones I'd expect based on my understanding of how potassium channels work in the bladder, so...
...it walks like a duck and says quack.
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
thanks; super shitty for sure, but I guess I did read all the warnings and do all my research, anyway.
The bright side is that this has reminded me that my tinnitus is kind of small potatoes compared to some of the other problems I have/had, and assuming that I'm able to get a decent resolution on this with some patience and expensive physical therapy, I think it may end up being a useful experience w/r/t dealing with my T...
(don't get me wrong, my tinnitus sucks, but I've dealt with it for years without missing work or taking benzos, and both of those things have happened in light of all of this nonsense...)
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
If it was extremely dangerous, Trobalt would not exist as medication unless prescribed for a terminal disease like cancer (which it isn't). Doctor or not, pharmacist or not, I would rather take a 3-month course of Trobalt than a 3-month course of steroids. And so if you classify Trobalt as "extremely dangerous" I do not know what terminology you would apply for steroids. Not to mention chemo-therapy...
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
I'd call all that shit "extremely dangerous", ATEOS. As a general rule, I don't take prescription drugs if I can avoid it.
I don't know if I'd rather take trobalt or prednisone for 3 months, anymore than I know if I'd rather cut off my right foot or my left foot. I do have a relative with an autoimmune problem who has been taking low-dose prednisone for rather a long time; the side effects are shitty, but definitely less disabling than Trobalt was for me at a glance.
I personally don't think "is a drug widely prescribed?" is a very good metric of safety. On the one hand you have things that get out in the wild and then cause catastrophic problems (lol Fen/Phen!) -- on the other, you have stuff like benzos which are commonplace and yet still extremely dangerous and destroy lives.
If a drug was extremely dangerous it wouldn't be allowed just like ATEOS says. Or at least not unless it's take it or die. Some drugs can however have side effects which can unfortunately be pretty severe in some people. But if Trobalt was a drug where all too many users had such severe side effects it would be banned pretty quickly.
I am sorry you had so severe side effects but I think you must have been one of the unlucky ones that responds very poorly to this drug.
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
Eh, I think this has become a semantic argument about what "extremely dangerous" means, so, we don't need to agree on it. From my viewpoint, a lot of widely used/prescribed drugs are "extremely dangerous". I don't think that's very controversial. Like, is heroin "extremely dangerous"? If so, then implicitly so is any narcotic of equal strength, which includes hundreds of millions of prescriptions a year in the US alone. Based on extensive experience and study, I would call benzos "extremely dangerous", and Xanax is the most commonly prescribed drug in the US.
Anyway, my anecdote aside, my original comment here stands: this thread should be in "alternative treatments", not in "treatments". Having it here implies that this is an accepted approach with good evidence to support it. That is not true.
Ok I understand. But as far as I know there are no real treatments for tinnitus so if we are to use that standard then I think there are a lot of posts in the "treatments" section that would have to go as well.
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