Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
Member
@Mpt Hey matt i just had one question. As far as your mental sharpness have you noticed any changes, are you still able to think clearly at work and on other parts of your life. I only ask because it seems to be one of the side effects and i was thinking of waiting until i retake my LSAT in december, but we both have had t for a similar time period and i guess there is the possibility of acute vs chronic the chronic thing. Anyways hope all is well and any thoughts would be greatly appreciated.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
Well, this certainly is the fastest growing thread ever, I think.
As a general rule, I am always impressed by people who are willing to take a risk, and who end up being rewarded for it, @Mpt
This is as it should be.
I have already stated in the second post in this thread - many pages ago
- that I am not really considering the long term use of drugs of any kind to treat tinnitus. Especially brain chemistry drugs (because of side effects).
However, as it happens, I had two doctors visits today. One at my GP and the other at the ENT surgery clinic I have been visiting over the past year, Acquaklinik. My GP visit today was about my upcoming clinical evaluation for HIFU treatment in Switzerland; I needed to see her in order to get my head measurements for the EEG scans that will be performed. When my (new) GP realized my next plans for tinnitus treatment, she began to become a little anxious (no GP wants to see their patient go for brain surgery, after all - and not without exhausting all options). She strongly urged me to reconsider alternatives such as TRT and cognitive therapies. I rejected her thoughts without the blink of an eye, and told her the continuous insistance on these therapies was the main reason I fired my previous GP (= her colleague). It was then that I thought I might just mention the idea about Trobalt - basically for the hell of it (ie. if my new GP really wants to help, then why not try Trobalt for eg. two weeks and see what happens). I am based in Germany, and my GP had never heard of this drug, and she couldn't find it on the official drugs list. She then went on the Internet and she found out that the drug has been taken off the market - and to the extent that it is still in use - it comes with a specific warning label (because of the side effects which have already been mentioned in many other posts here ie. eye-sight changes and blue-coloring of the skin). To her knowledge, she is therefore not able to prescribe it - even though she wanted to (but she was also a little insecure about prescribing it as she is a GP and not a neurologist). But just to be sure, she has referred me to a professor of neurology here in Leipzig, Professor Strauss, with her recommendation of off-label use approval. But if Trobalt really has been taken off the market, then I don't think it will make a difference that I go see a professor so-and-so, because that will not change anything.
I am not really that interested in going through with this (I am already pursuing different options). But if there is a strong interest from other members, then I will do it (provided I can, of course). It could - I suppose - at least be interesting to see if the effects continue to last after ending the medication.
Anyway, I just wanted to share the insight I had gained from the day, today. Not much, I know...
EDIT: I should add, that my GP did mention something called "The International Pharmacy"; not sure what the hell that is. But she thinks I can get it legally from there. I will try to find it more, if necessary (basically that was the reason she referred me, I think...).
As a general rule, I am always impressed by people who are willing to take a risk, and who end up being rewarded for it, @Mpt
This is as it should be.
I have already stated in the second post in this thread - many pages ago
- that I am not really considering the long term use of drugs of any kind to treat tinnitus. Especially brain chemistry drugs (because of side effects).However, as it happens, I had two doctors visits today. One at my GP and the other at the ENT surgery clinic I have been visiting over the past year, Acquaklinik. My GP visit today was about my upcoming clinical evaluation for HIFU treatment in Switzerland; I needed to see her in order to get my head measurements for the EEG scans that will be performed. When my (new) GP realized my next plans for tinnitus treatment, she began to become a little anxious (no GP wants to see their patient go for brain surgery, after all - and not without exhausting all options). She strongly urged me to reconsider alternatives such as TRT and cognitive therapies. I rejected her thoughts without the blink of an eye, and told her the continuous insistance on these therapies was the main reason I fired my previous GP (= her colleague). It was then that I thought I might just mention the idea about Trobalt - basically for the hell of it (ie. if my new GP really wants to help, then why not try Trobalt for eg. two weeks and see what happens). I am based in Germany, and my GP had never heard of this drug, and she couldn't find it on the official drugs list. She then went on the Internet and she found out that the drug has been taken off the market - and to the extent that it is still in use - it comes with a specific warning label (because of the side effects which have already been mentioned in many other posts here ie. eye-sight changes and blue-coloring of the skin). To her knowledge, she is therefore not able to prescribe it - even though she wanted to (but she was also a little insecure about prescribing it as she is a GP and not a neurologist). But just to be sure, she has referred me to a professor of neurology here in Leipzig, Professor Strauss, with her recommendation of off-label use approval. But if Trobalt really has been taken off the market, then I don't think it will make a difference that I go see a professor so-and-so, because that will not change anything.
I am not really that interested in going through with this (I am already pursuing different options). But if there is a strong interest from other members, then I will do it (provided I can, of course). It could - I suppose - at least be interesting to see if the effects continue to last after ending the medication.
Anyway, I just wanted to share the insight I had gained from the day, today. Not much, I know...
EDIT: I should add, that my GP did mention something called "The International Pharmacy"; not sure what the hell that is. But she thinks I can get it legally from there. I will try to find it more, if necessary (basically that was the reason she referred me, I think...).
Hi ateos. I think it is just off market for germany, so would it be possible for you to get a prescription in another country? I think a short course just to see its effects would be a good idea before going under the knife.Well, this certainly is the fastest growing thread ever, I think.
As a general rule, I am always impressed by people who are willing to take a risk, and who end up being rewarded for it, @Mpt
This is as it should be.
I have already stated in the second post in this thread - many pages ago
However, as it happens, I had two doctors visits today. One at my GP and the other at the ENT surgery clinic I have been visiting over the past year, Acquaklinik. My GP visit today was about my upcoming clinical evaluation for HIFU treatment in Switzerland; I needed to see her in order to get my head measurements for the EEG scans that will be performed. When my (new) GP realized my next plans for tinnitus treatment, she began to become a little anxious (no GP wants to see their patient go for brain surgery, after all - and not without exhausting all options). She strongly urged me to reconsider alternatives such as TRT and cognitive therapies. I rejected her thoughts without the blink of an eye, and told her the continuous insistance on these therapies was the main reason I fired my previous GP (= her colleague). It was then that I thought I might just mention the idea about Trobalt - basically for the hell of it (ie. if my new GP really wants to help, then why not try Trobalt for eg. two weeks and see what happens). I am based in Germany, and my GP had never heard of this drug, and she couldn't find it on the official drugs list. She then went on the Internet and she found out that the drug has been taken off the market - and to the extent that it is still in use - it comes with a specific warning label (because of the side effects which have already been mentioned in many other posts here ie. eye-sight changes and blue-coloring of the skin). To her knowledge, she is therefore not able to prescribe it - even though she wanted to (but she was also a little insecure about prescribing it as she is a GP and not a neurologist). But just to be sure, she has referred me to a professor of neurology here in Leipzig, Professor Strauss, with her recommendation of off-label use approval. But if Trobalt really has been taken off the market, then I don't think it will make a difference that I go see a professor so-and-so, because that will not change anything.
I am not really that interested in going through with this (I am already pursuing different options). But if there is a strong interest from other members, then I will do it (provided I can, of course). It could - I suppose - at least be interesting to see if the effects continue to last after ending the medication.
Anyway, I just wanted to share the insight I had gained from the day, today. Not much, I know...
EDIT: I should add, that my GP did mention something called "The International Pharmacy"; not sure what the hell that is. But she thinks I can get it legally from there. I will try to find it more, if necessary (basically that was the reason she referred me, I think...).
Hi Cullen,
I definitely notice being more tired at night, and after I eat lunch at work I get a little tired for 30 mins- an hour, which never really happened before, but that's about it really. No dizziness, vision stuff, etc. All else being equal, you're right it would be best until you are done with the test to try out retigabine. You could always take the october lsat if you are concerned about a few more months making a difference. I took the LSAT a second time over 10 years ago now and really got in a groove studyging for it, did about 3 hours a day for 3 months, just doing sets, and raised my score 9 points, which as you know is significant. I actually pulled out an old lsat guide is still had and did the logic game problem sets a few times after I got tinnitus because I thought it would help my mind gett off of the noise-- and it did help a little-- so focusing on something like LSAT prep is definitely good in and of itself, but I think it will probably be good for your tinnitus too.
-Matt
Hi all my friends
I want share a little update. I know it's too soon but today (first day of trobalt) it is happen a strange fact never happened with previuos medicaments. 3 hours after i take trobalt i have a small sudden hearing loss (i specify that i'm a suffers of hearing loss on high frequency) on the right side with a very loud tinnitus...after 5 seconds the hearing return and the tinnitus is lowered with a different tone like dc current always lowest in the course of the day and centralized at the center of the head. More sedation. Better tolerability. I hope this is a good sign. Usually I always tend to get worse instead today is stable. Consider i'm unfortunally depending of rivotril. If I hadn't the problem of Rivotril i will increase the dosage but the doctor don't wont. He don't know and never have prescribed retigabine... he did it because he is a friend and know my painful condition.
Thanks to all for the support in my life!
i will update
I want share a little update. I know it's too soon but today (first day of trobalt) it is happen a strange fact never happened with previuos medicaments. 3 hours after i take trobalt i have a small sudden hearing loss (i specify that i'm a suffers of hearing loss on high frequency) on the right side with a very loud tinnitus...after 5 seconds the hearing return and the tinnitus is lowered with a different tone like dc current always lowest in the course of the day and centralized at the center of the head. More sedation. Better tolerability. I hope this is a good sign. Usually I always tend to get worse instead today is stable. Consider i'm unfortunally depending of rivotril. If I hadn't the problem of Rivotril i will increase the dosage but the doctor don't wont. He don't know and never have prescribed retigabine... he did it because he is a friend and know my painful condition.
Thanks to all for the support in my life!
i will update
Probably The International Pharmacy is a pharmacy of an indipendent state. For example, in the past 2008 De Ridder prescribed me the Flupentixol and i bought it in Belgium but when i was finishing the pills discovered that it was not available in my country (Italy). I had to turn to the international pharmacy of the Vatican City. The same in Liechtenstein, San Marino etc...Well, this certainly is the fastest growing thread ever, I think.
As a general rule, I am always impressed by people who are willing to take a risk, and who end up being rewarded for it, @Mpt
This is as it should be.
I have already stated in the second post in this thread - many pages ago
However, as it happens, I had two doctors visits today. One at my GP and the other at the ENT surgery clinic I have been visiting over the past year, Acquaklinik. My GP visit today was about my upcoming clinical evaluation for HIFU treatment in Switzerland; I needed to see her in order to get my head measurements for the EEG scans that will be performed. When my (new) GP realized my next plans for tinnitus treatment, she began to become a little anxious (no GP wants to see their patient go for brain surgery, after all - and not without exhausting all options). She strongly urged me to reconsider alternatives such as TRT and cognitive therapies. I rejected her thoughts without the blink of an eye, and told her the continuous insistance on these therapies was the main reason I fired my previous GP (= her colleague). It was then that I thought I might just mention the idea about Trobalt - basically for the hell of it (ie. if my new GP really wants to help, then why not try Trobalt for eg. two weeks and see what happens). I am based in Germany, and my GP had never heard of this drug, and she couldn't find it on the official drugs list. She then went on the Internet and she found out that the drug has been taken off the market - and to the extent that it is still in use - it comes with a specific warning label (because of the side effects which have already been mentioned in many other posts here ie. eye-sight changes and blue-coloring of the skin). To her knowledge, she is therefore not able to prescribe it - even though she wanted to (but she was also a little insecure about prescribing it as she is a GP and not a neurologist). But just to be sure, she has referred me to a professor of neurology here in Leipzig, Professor Strauss, with her recommendation of off-label use approval. But if Trobalt really has been taken off the market, then I don't think it will make a difference that I go see a professor so-and-so, because that will not change anything.
I am not really that interested in going through with this (I am already pursuing different options). But if there is a strong interest from other members, then I will do it (provided I can, of course). It could - I suppose - at least be interesting to see if the effects continue to last after ending the medication.
Anyway, I just wanted to share the insight I had gained from the day, today. Not much, I know...
EDIT: I should add, that my GP did mention something called "The International Pharmacy"; not sure what the hell that is. But she thinks I can get it legally from there. I will try to find it more, if necessary (basically that was the reason she referred me, I think...).
Dear friends:
i must remove rivotril. It cause an excessive sedation with trobalt. The result is good: this morning the right ear is tinnitus free. Left ear have "typewriter tinnitus" low loud. Hoping... According with my neurologist I will take the trobalt before the night.
Thanks All
Ivan
i must remove rivotril. It cause an excessive sedation with trobalt. The result is good: this morning the right ear is tinnitus free. Left ear have "typewriter tinnitus" low loud. Hoping... According with my neurologist I will take the trobalt before the night.
Thanks All
Ivan
incredible. grande notizia! we now have a second case of profound improvement. going over your 'my story' post it seems as though you were suffering a lot, and for you to be tinnitus free in your right ear is fantastic. can you please clarify what you mean by 'low loud' in your left ear?
i am not a doctor but i agree that getting off of revotril might be a good thing (the two drugs may interact in unexpected ways). but since it is a benzo i would be mindful of the withdrawal issues.
I have tinnitus since 2006, worsened last year using the much acclaimed hearing aids (only for hearing) and after with white noise. Removed and destroied on th 13 november 2013... i want kill Jasterboff (he has stopped the research with his vaunted 80% success) and company... reducing the tinnitus as a SIMPLE SIMPTOM! I am disabled and i have used all existing "cure". Avoid psycho drugs! only cbt!
Actually, inspired by @Mpt and research on Autifony, i bought the trobalt 100mg 21 pills (11,40 Euro) and now (are 8:00 pm in Italy) the tinnitus is quiet. The right ear is yet free. On the left side i have a pulsatile but low tinnitus like the "type writer tinnitus". ti tii ti tiii ti tiii. It is coverable with soft music. Unfortunally I feel very weak because rivotril increases the side effects of trobalt (sedation) and migraine. This for me is only an experiment. Next week i will plan a "way" to wash out from rivotril and use only the trobalt. I have seen the plan of @benryu i and want act it without rivotril. in addition with this plan, approved by the national sanitary system, i can buy trobalt at a lower price. Now 84 pill 100mg cost 44,60 euros! I haven't a work...! This medication is unknow and is under close surveillance, though it has much fewer side effects than similar drugs that I have tried in the past (Tolep,Lyrica..avoid this...,Lamictal and other class of antidepressants like Cipralex and Zoloft). Repeat, for now is only an experiment, next week i reduce the rivotril and plan well only with trobalt.
I hope to have been useful
Ivan
Actually, inspired by @Mpt and research on Autifony, i bought the trobalt 100mg 21 pills (11,40 Euro) and now (are 8:00 pm in Italy) the tinnitus is quiet. The right ear is yet free. On the left side i have a pulsatile but low tinnitus like the "type writer tinnitus". ti tii ti tiii ti tiii. It is coverable with soft music. Unfortunally I feel very weak because rivotril increases the side effects of trobalt (sedation) and migraine. This for me is only an experiment. Next week i will plan a "way" to wash out from rivotril and use only the trobalt. I have seen the plan of @benryu i and want act it without rivotril. in addition with this plan, approved by the national sanitary system, i can buy trobalt at a lower price. Now 84 pill 100mg cost 44,60 euros! I haven't a work...! This medication is unknow and is under close surveillance, though it has much fewer side effects than similar drugs that I have tried in the past (Tolep,Lyrica..avoid this...,Lamictal and other class of antidepressants like Cipralex and Zoloft). Repeat, for now is only an experiment, next week i reduce the rivotril and plan well only with trobalt.
I hope to have been useful
Ivan
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
I will, still i will not take it for several weak, i would have to see neurologist... today is my first day of 200x3.
I know urinary retention / blood in urine is biggest problem and that is ok, only side effect is filling dizzy, list, strange vision, loss on cognition but last 60-90 min after taking dosage.
I believe tinnitus went down slightly but I am not definitive sure, all I am sure spikes dissapeared, but well i used 3 days 3x 100mg, today is first day 3x 200 mg , so to early considering that 100 mg 3 times a day is introduction dosage.
Yes, I think so! We're seeing the drug work on chronic tinnitus. That is even more extraordinary than acute tinnitus, and indicates we may all be cured through these KV3 channel inhibitors. BTW, @lapidus these drugs might also help with hyperacusis. I just saw some interesting research but will post later on.
It's Saturday and I've got things to do.
@Viking We are all so happy for you!!
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
Thank you for taking the time to update the board.
I have to say, Trobalt seems to be one of the most surprising developments in a long while. I know very little about brain chemistry drugs, I must admit. Being the person I am, I sometimes cannot help but wonder how these beneficial side-effects would have gone unnoticed ie. there must be epileptic patients out there, who also suffer from tinnitus, and who would therefore have seen improvements in their tinnitus (also). In such cases, the patients would normally - at some point - report such findings to their doctor. The doctor is then responsible for reporting such incidents to the pharmaceutical company and/or the country's health authority.
What I am really saying is: if the wheel has already been invented, then why is Autifony re-inventing it? [I am not expecting an answer from anyone here - just thinking out loud...]
I will go see the professor of neurology on Monday for an appointment; it's only 800 meters from where I live - compare that with the 9000 km I had to travel for both my stem cell treatments,
...! Worst case, I will get the drug from Switzerland via my father's GP who has been assisting me "on the sidelines" - shouldn't be a problem (I have already looked into that option).I am not happy about side-effects, but this is at least a step in the right direction.
A pleasant evening to everyone.
I agree and I have to refer a strange story that happened to me several times to see both live on the internet. I have a friend (known in the hospital) who is suffering from refractory epilepsy. When he has a grand mal seizure and resumes he has tinnitus. But for him, tinnitus is not a serious matter because in addition to being low volume .... after just ... disappears. He takes Keppra Tegretol + + Rivotril. I'm not a doctor but I've shot a lot and start to believe that we suffer from tinnitus we have an electrical imbalance in the brain. A kind of epilepsy only in certain places in the brain. When I bought Trobalt I saw that it is sold by GlaxoSmithKline and if I'm not mistaken is the same industry that is behind autifony. Maybe they're just improving your product. is only a hypothesis. Another experience I had about tinnitus and AEDs is that when a patient is cured immediately stops writing on forums and returns to his life. The doctors think they was lucky!Thank you for taking the time to update the board.
I have to say, Trobalt seems to be one of the most surprising developments in a long while. I know very little about brain chemistry drugs, I must admit. Being the person I am, I sometimes cannot help but wonder how these beneficial side-effects would have gone unnoticed ie. there must be epileptic patients out there, who also suffer from tinnitus, and who would therefore have seen improvements in their tinnitus (also). In such cases, the patients would normally - at some point - report such findings to their doctor. The doctor is then responsible for reporting such incidents to the pharmaceutical company and/or the country's health authority.
What I am really saying is: if the wheel has already been invented, then why is Autifony re-inventing it? [I am not expecting an answer from anyone here - just thinking out loud...]
I will go see the professor of neurology on Monday for an appointment; it's only 800 meters from where I live - compare that with the 9000 km I had to travel for both my stem cell treatments,
I am not happy about side-effects, but this is at least a step in the right direction.
A pleasant evening to everyone.
Thank you for taking the time to update the board.
I have to say, Trobalt seems to be one of the most surprising developments in a long while. I know very little about brain chemistry drugs, I must admit. Being the person I am, I sometimes cannot help but wonder how these beneficial side-effects would have gone unnoticed ie. there must be epileptic patients out there, who also suffer from tinnitus, and who would therefore have seen improvements in their tinnitus (also). In such cases, the patients would normally - at some point - report such findings to their doctor. The doctor is then responsible for reporting such incidents to the pharmaceutical company and/or the country's health authority.
What I am really saying is: if the wheel has already been invented, then why is Autifony re-inventing it? [I am not expecting an answer from anyone here - just thinking out loud...]
I will go see the professor of neurology on Monday for an appointment; it's only 800 meters from where I live - compare that with the 9000 km I had to travel for both my stem cell treatments,
I am not happy about side-effects, but this is at least a step in the right direction.
A pleasant evening to everyone.
To me it makes total sense, the drug is very recent, with a very low number of patients using it. It's actually used only when all other alternatives did not work.
Now let's just talk about the chances of having a patient with all the conditions below:
Epilepsy: 50M out of 7B (http://www.who.int/mediacentre/factsheets/fs999/en/)
0,7%
Using trobalt/potiga: 25% of the market and I am being super generous here (http://www.fiercebiotech.com/press-...ease-800-million-2016-primarily-due-uptake-pr), they forcasted to do 200M a year.
Tinnitus: 10% of the world population (http://www.theguardian.com/lifeandstyle/2008/apr/17/health-and-wellbeing-health)
Access to high level medicine: 30% of countries representing 4,5% of the world population, http://apps.who.int/medicinedocs/en/d/Js6160e/9.html#Js6160e.9
In touch with the company medical: they had roughly 3000 patients for the trial (including phase 1): 0.000042%
0.7% * 25% * 10% * 4,5% * 0.000042% = 0,0000000033075% chance
this assumes everyone is willing to give a fuck for other people, understand what's happening, etc..
Chance of winning the lottery: 0.000007151% chance
So you are 2162 times more likely to win the lottery than having one guy able to report the positive impact of the drug to a relevant person.
we must consider that this product is getting additional therapy in epilepsy. never as a single therapy! My neurologist, who has nearly 40 years of experience, he has never prescribed. The studies have shown that me and my friend @Lep had made and granted an individual prescription waiting to better plan treatment. It's up studying the molecule!To me it makes total sense, the drug is very recent, with a very low number of patients using it. It's actually used only when all other alternatives did not work.
Now let's just talk about the chances of having a patient with all the conditions below:
Epilepsy: 50M out of 7B (http://www.who.int/mediacentre/factsheets/fs999/en/)
0,7%
Using trobalt/potiga: 25% of the market and I am being super generous here (http://www.fiercebiotech.com/press-...ease-800-million-2016-primarily-due-uptake-pr), they forcasted to do 200M a year.
Tinnitus: 10% of the world population (http://www.theguardian.com/lifeandstyle/2008/apr/17/health-and-wellbeing-health)
Access to high level medicine: 30% of countries representing 4,5% of the world population, http://apps.who.int/medicinedocs/en/d/Js6160e/9.html#Js6160e.9
In touch with the company medical: they had roughly 3000 patients for the trial (including phase 1): 0.000042%
0.7% * 25% * 10% * 4,5% * 0.000042% = 0,0000000033075% chance
this assumes everyone is willing to give a fuck for other people, understand what's happening, etc..
Chance of winning the lottery: 0.000007151% chance
So you are 2162 times more likely to win the lottery than having one guy able to report the positive impact of the drug to a relevant person.
did you notice if you have less paranoid thoughts / suicide? I am calmer and I have no more frequent urination. Of course, control the color and frequency just because the Trobalt could give problems in this regard. It may be that, like other antipsychotics or antiepileptics, it could be also prescribed as a mood stabilizer like lamictal and others. I was on various antidepressant.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
To me it makes total sense, the drug is very recent, with a very low number of patients using it. It's actually used only when all other alternatives did not work.
Now let's just talk about the chances of having a patient with all the conditions below:
Epilepsy: 50M out of 7B (http://www.who.int/mediacentre/factsheets/fs999/en/)
0,7%
Using trobalt/potiga: 25% of the market and I am being super generous here (http://www.fiercebiotech.com/press-...ease-800-million-2016-primarily-due-uptake-pr), they forcasted to do 200M a year.
Tinnitus: 10% of the world population (http://www.theguardian.com/lifeandstyle/2008/apr/17/health-and-wellbeing-health)
Access to high level medicine: 30% of countries representing 4,5% of the world population, http://apps.who.int/medicinedocs/en/d/Js6160e/9.html#Js6160e.9
In touch with the company medical: they had roughly 3000 patients for the trial (including phase 1): 0.000042%
0.7% * 25% * 10% * 4,5% * 0.000042% = 0,0000000033075% chance
this assumes everyone is willing to give a fuck for other people, understand what's happening, etc..
Chance of winning the lottery: 0.000007151% chance
So you are 2162 times more likely to win the lottery than having one guy able to report the positive impact of the drug to a relevant person.
I don't necessarily disagree with your logic. I was more thinking in overall terms and not associating it with statistics ie. tinnitus is known to be more prevalent in certain groups of people eg. people with neurological disorders. This combined with the fact that epileptic medication is usually prescribed by medical specialists, who are usually asked to report back on drug irregularities within the first years of a drug's introduction, would mean that such findings are normally observed at some point (given there are enough people, as you say...).
As a counter example, stem cells treatments - and there are only +20.000 of these to-date (for all kinds of diseases) - has 6 confirmed cases of tinnitus improvement. 5 out of the 6 were patients with tinnitus as a secondary symptom (and not the reason why patients sought treatment). That's how I became patient #7, and the first person in the world to do 2 stem cell treatments specifically for tinnitus (ie. as a primary symptom). [The combined improvement from the 2 treatments is/was approximately 50% in my case.]
So even with such modest numbers and highly experimental treatments as stem cells - which are aimed at other pathologies than tinnitus and hearing loss - it is possible to observe improvements (and to know about it!). If I didn't know about it, I would never have travelled down that path in the first place. And at this time last summer, I didn't know about Trobalt being effective against tinnitus - but, I did know about the potential effectiveness of stem cells. Calulate the odds on that...
I don't necessarily disagree with your logic. I was more thinking in overall terms and not associating it with statistics ie. tinnitus is known to be more prevalent in certain groups of people eg. people with neurological disorders. This combined with the fact that epileptic medication is usually prescribed by medical specialists, who are usually asked to report back on drug irregularities within the first years of a drug's introduction, would mean that such findings are normally observed at some point (given there are enough people, as you say...).
As a counter example, stem cells treatments - and there are only +20.000 of these to-date (for all kinds of diseases) - has 6 confirmed cases of tinnitus improvement. 5 out of the 6 were patients with tinnitus as a secondary symptom (and not the reason why patients sought treatment). That's how I became patient #7, and the first person in the world to do 2 stem cell treatments specifically for tinnitus (ie. as a primary symptom). [The combined improvement from the 2 treatments is/was approximately 50% in my case.]
So even with such modest numbers and highly experimental treatments as stem cells - which are aimed at other pathologies than tinnitus and hearing loss - it is possible to observe improvements (and to know about it!). If I didn't know about it, I would never have travelled down that path in the first place. And at this time last summer, I didn't know about Trobalt being effective against tinnitus - but, I did know about the potential effectiveness of stem cells. Calulate the odds on that...
I agree to some extent, but the time frame is pretty important too.
The article showing that some potassium channels were impacting T. is super recent (2011), vs the impact of hair cells death on T. has been mentionned as early as 1953.
Stem cells have been used for 30 years to cure various problems by "fixing cells" and it doesn't take a rocket scientist to extrapolate and guess that stem cell therapy could help T.
I think the odds for SCT are much, much bigger than for something as specific as Trobalt.
No offence, but it's the first time I see you around here, would you mind posting a picture of the drug boxes so we can have the confirmation that you're legit.
Thanks !
For legit in this photo you can see only a part of the various treatment performed (included a crazy attempt of surgery of skull base) without results and for long time. Miss in photo: Tolep,Lamictal,Topamax,Cipralex, Effexor,Solian,Flupentixol,Imipramine,Betahistine,Meprobamato, Melitracen, Flexiban (cyclobenzaprina ...parti al relief)Methilprednisolone,Glycerol, Lidocaine,Morphine (Relief), Cannabis (relief on tinnitus and depression), heroin (give relief but not advisable) the destroyed sound generators (the biggest joke/business in the history of tinnitus i think...). Variuos homeopatic remedies Note: The Cynazin (stugeron is an old molecule of 1955) give me a partial relief for 3 month it is a calcium antagonist. If someone would try it... zero side effect and low cost. Please stay away from antidepressants. are too advertised for money. I am convinced that they have helped to worsen tinnitus and condition of life bringing in a vicious circle . Trobalt give me sedation but at least they are "shiny" instead antidepressants.
Hoping to be of helpful!
Good night at all
Ivan
Hoping to be of helpful!
Good night at all
Ivan
@Viking it would be great to see if trobalt has continued positive effects on your tinnitus and possibly mood disorders too. Im convinced that I have severe tinnitus and hyperacusis as part of a group of symptoms I developed from taking or withdrawing from lexapro, remeron, lamictal, nefazodone and other antidepressants. So if trobalt works for you, and youre someone who has had bad side effects from ADs, that would make me optimistic.
Be optimistic! our body has some great qualities of self-healing. I had abandoned the motorcycle (for pay the cure). I do not get up out of bed more. I cried forever. Now I hope to weep for joy. Use any type of business that you think might help you. I know what pain is. The displeasure. I lost my job, girlfriend and more ... STRENGTH AND COURAGE!
Best Wishes i will pray for you
bill 112
Member
Guys it has to be said but if you consider the facts here,this might actually be the first condition where the people got so tired of waiting for a cure for their condition that they came up with one themselves.Will possibly be getting this drug soon but still dont know if its available here,anyway of checking before I make an appointment so I dont waste my time??
Will possibly be getting this drug soon but still dont know if its available here,anyway of checking before I make an appointment so I dont waste my time??Log in or register to get the full forum benefits!
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