Retigabine (Trobalt, Potiga) — General Discussion

[dan]

I understand you don't use antidepressant anymore but how long and how much did you take of it in your life?

He said above, he used antidepressant for 3 days.

 

[NGC891]

@ Christian78
We all support you .
I hope you will get better quickly.
We all have ups and downs.
It could be an interaction between Trobalt and Diazepam you take.
How long you take Diazepam an trobalt at the same time?

1) Diazepam appears to be part of the drug could generate tinnitus (see p11 )
http://hearinglosshelp.com/articles/pdf/TinnitusDrugList2013.pdf

2) Extract from: https://www.epilepsy.org.uk/info/treatment/status-epilepticus

Treatment for status epilepticus

The following information is about the treatment of status epilepticus in the UK. The treatment in other countries may be different.

When a person has status epilepticus, a medical professional will usually give them an injection of the drug diazepam, either at the scene of the seizure or in hospital. Where diazepam is not suitable, other drugs, such as buccal midazolam, can be used. (See below.)

An interaction between Trobalt and Diazepam may be possible because both seem to have an effect against epilepsy.

@ Christian78. Take care of yourself .

 

[SteveToHeal]

not still, but as my condition became worse i will have to, I dont beleave tinnitus will be any less that before starting meds, maybe only stronger, as he is becoming or something is happening, i have a hard time to sleep and i hear it much stronger

Does other do detailed update every weeks or something?

Hi Christian78. I am very sorry to hear it is not working for you. Please take care of yourself and let us know how you are. I know what it is like to be in that hopeless despairing place. I think we have all been there / are there. I am still there most days. I am trying ever so slowly to take a new approach and a move towards habituation, until a drug comes along that can relive all our suffering. Let us know how you are doing.

 

[SteveToHeal]

If that is the case try AM-101, if that doesn't work, than please consider SoniModul! In Swiss or do TRT or ACRN.
6 Months is not long don't give up! Think about Dr. Naglers case or many others!

Ok I read you got T from anti depressant in may so you have suffered ototoxic damage.

When you got T in september 2013 did you keep taking antidepressant until may 2014?
Are you now taking any form of antidepressants?

Please tell me what you take from medicines now including alchohol and cigarettes

I just had a look at SoniModul and Jeanmonod website. Is he proclaiming to cure t with his techniques? Has this already been discussed elsewhere on the board? As is off topic.

 

[Markku]

I just had a look at SoniModul and Jeanmonod website. Is he proclaiming to cure t with his techniques? Has this already been discussed elsewhere on the board? As is off topic.

Here is more about Dr. Jeanomonod and HIFU:

https://www.tinnitustalk.com/thread...igh-intensity-focused-ultrasound-surgery.276/

 

[Hengist]

It is nice to hear that @Mpt is now without tinnitus but how can we be sure that it is entirely due to retigabine and that he is an example of average person here. It does not seem that anybody else who has tried retigabine has had such an excellent reaction to the drug.

On the other side of things I do not think that anybody should be dissuaded by mixed and bad experiences of other users here, it looks like this shotgun drug is an unpredictable tool which will likely have a tolerable positive effect on your illness, it seems that I got the worse end of all who have tried and reported with immediate worsening, but it seems to have gone away after a while.

With Christians worsening and desperation I think we can all connect on some level and we have all thought about the one certain off switch. For those who eventually opt for this conclusion of their illness the rest of us cannot have anything else but respect because it takes guts to make that final step and to go into something unknown. If this illness is so bad that people cannot function than tolerating torture is a submissive cowardly thing to keep doing. Rebeling against it and not taking it even for a second longer is the brave step. Unless you have a huge family or some impressive life mission closely ahead of you than you have little to lose. The only interesting idea here would be to maybe cryopreserve yourself for one day when they do actually find the cure. However that would require a very calculating mindset and effort which would be movie worthy.

However I would not advise doing it right now as it may be that in a few years there will be some kind of a medicine to address this issue.

 

[Champ]

This thread is making me believe more and more that Autifony's drug will more likely handle the problem for more people.

It's entirely possible that Retigabine, at a point, begins to work less effectively on tinnitus as the ear signals become less pronounced in the Kv7 channels. If the Kv7 channel is fixed, I'd imagine it would influence the Kv3 channels and potentially slap them into proper working order, and the potassium channels will continue working properly indefinitely - i.e. no more tinnitus.

I'm assuming the Kv3 ones that Autifony has identified as targets are noticeably active throughout the lifetime of tinnitus. The Kv7 channels probably don't matter as much after a point. Assuming the Kv3 channels get hit with the drug to get them to operate properly, I'd imagine the end result would be similar to the result that @Mpt has had. Diminished to completely squashed tinnitus.

This is all just speculation. Of course, Autifony would know the answers to this better, but as an armchair pharmacist, I believe this would make the most sense.

 

[rtwombly]

For those who eventually opt for this conclusion of their illness the rest of us cannot have anything else but respect because it takes guts to make that final step and to go into something unknown. If this illness is so bad that people cannot function than tolerating torture is a submissive cowardly thing to keep doing. Rebeling against it and not taking it even for a second longer is the brave step.

At least you came around to say it's a bad idea but the quoted line of reasoning is insulting. I can understand a person's decision to take their own life if they can see no way out of a difficult situation, but it has been conclusively proved that it is possible to live a full and productive life with intractable tinnitus. What tips people over the edge is not the tinnitus exclusively but the emotional reaction to the tinnitus. Dr Nagler is right about that one. You don't have to be miserable and suicidal with tinnitus. That doesn't diminish anybody's suffering, and it shouldn't stop researchers from pursuing a cure, it's just a fact.

I think one of the worst elements of this illness is that it can take you straight from carefree to living under a rock. It's sudden onset depression. Let's just put this out there: depressed people don't think rationally. I know I didn't when I was depressed. Back in January and February my constant fantasy was that I would get into a car accident and die. I wasn't going to take my own life, but I heartily wished that chance would take it from me. Yesterday I was telling my new doctor about how I've gotten much better in the last eight months, how my tinnitus is lower and my outlook is better. He asked if that made me optimistic that the tinnitus will go away. You know what? I couldn't say yes, because I can't tell how much of my improvement is lower tinnitus and how much is higher mood. I can't distinguish between the two. How did I get to this state of mind? I took Remeron, an anti-depressant, for months. I kept trying everything I found in this forum that anybody said helped. Very nearly literally everything.

If you - Hengist, Danny Boy, Christian, Eric - any of you who are complementing calling it big quits, have not done EVERYTHING, then you're not ready. You can't quit before you've tried everything. And once you think you've tried everything, come on and post what you've tried and we'll tell you what you've missed. I'm on Nexium right now. I've been to three chiropractors with three different techniques. I've bugged two doctors and a PA for Retigabine. And I'm not CLOSE to done. I don't have anything like the amount of money ATEOS is able to expend on his treatments (and I'm sure he makes sacrifices) but I find new things to try at least once a week.

Let's ditch this end-it-all talk, eh? We're on a thread with people who had an untreatable disease and found a treatment, referencing another thread about a treatment that could be even better, on a forum built by people who have suffered as we have and in many, many cases have risen above it. How ridiculous would it be for us, who have rational reasons to believe we're around the corner from a cure for a condition Aristotle wrote about, that plagued the ancient Egyptians as it plagued Beethoven, to give up when we're this close. I don't care if "this close" turns out to be eighteen months or four years. In nineteen months or four-years-and-a-day it'll seem like nothing, like a bad dream.

We don't need ultimatums for the researchers and we don't need them for ourselves. Pessimism is not bravery and suffering is not surrender. C'mon, forward! There's plenty to see and plenty to do. Go do it!

 

[undecided]

I totally agree with everything @rtwombly wrote.
Before even thinking about calling it quits, I would indeed try everything I could get my hands on.
For example, everything on this list. There are some nasty stuff in there with some even nastier side effects but at the end of the day, anything is better than slashed wrists.

Back on topic, Retigabine is indeed starting to look like a one hit wonder... I'm skeptical about going on it for two months, then finding out it poops out.
I am becoming more interested in the Sulpiride + melatonin experiment. I already bought a box of Dogmatil and I just don't know what to start next... Retigabine or Sulpiride?

Damn, tinnitus makes life interesting sometimes.

 

[Christian78]

Ok; here is the deal; stop taking diazepam as it is a Benzodiapine; clearly you are sensitive to these kind of drugs.
Than also start tapering of with trobalt.

I understand you don't use antidepressant anymore but how long and how much did you take of it in your life? As these are benzodiapines we need to eliminate this from your system..

Best Robb

You are relly smaty pants

I am slowing with benzos, abrupt stop of benzos cause tinnitus, heart attack and other problems. So yes I am taking them down monthly 1 mg less. But dont come again now and be smarty and say it is all 3 mg of diazepam know that i mg clonazepam/xanax is equal 20mg diazepam!

 

[Hengist]

At least you came around to say it's a bad idea but the quoted line of reasoning is insulting. I can understand a person's decision to take their own life if they can see no way out of a difficult situation, but it has been conclusively proved that it is possible to live a full and productive life with intractable tinnitus. What tips people over the edge is not the tinnitus exclusively but the emotional reaction to the tinnitus. Dr Nagler is right about that one. You don't have to be miserable and suicidal with tinnitus. That doesn't diminish anybody's suffering, and it shouldn't stop researchers from pursuing a cure, it's just a fact.

I think one of the worst elements of this illness is that it can take you straight from carefree to living under a rock. It's sudden onset depression. Let's just put this out there: depressed people don't think rationally. I know I didn't when I was depressed. Back in January and February my constant fantasy was that I would get into a car accident and die. I wasn't going to take my own life, but I heartily wished that chance would take it from me. Yesterday I was telling my new doctor about how I've gotten much better in the last eight months, how my tinnitus is lower and my outlook is better. He asked if that made me optimistic that the tinnitus will go away. You know what? I couldn't say yes, because I can't tell how much of my improvement is lower tinnitus and how much is higher mood. I can't distinguish between the two. How did I get to this state of mind? I took Remeron, an anti-depressant, for months. I kept trying everything I found in this forum that anybody said helped. Very nearly literally everything.

If you - Hengist, Danny Boy, Christian, Eric - any of you who are complementing calling it big quits, have not done EVERYTHING, then you're not ready. You can't quit before you've tried everything. And once you think you've tried everything, come on and post what you've tried and we'll tell you what you've missed. I'm on Nexium right now. I've been to three chiropractors with three different techniques. I've bugged two doctors and a PA for Retigabine. And I'm not CLOSE to done. I don't have anything like the amount of money ATEOS is able to expend on his treatments (and I'm sure he makes sacrifices) but I find new things to try at least once a week.

Let's ditch this end-it-all talk, eh? We're on a thread with people who had an untreatable disease and found a treatment, referencing another thread about a treatment that could be even better, on a forum built by people who have suffered as we have and in many, many cases have risen above it. How ridiculous would it be for us, who have rational reasons to believe we're around the corner from a cure for a condition Aristotle wrote about, that plagued the ancient Egyptians as it plagued Beethoven, to give up when we're this close. I don't care if "this close" turns out to be eighteen months or four years. In nineteen months or four-years-and-a-day it'll seem like nothing, like a bad dream.

We don't need ultimatums for the researchers and we don't need them for ourselves. Pessimism is not bravery and suffering is not surrender. C'mon, forward! There's plenty to see and plenty to do. Go do it!

You see, even if there would be certain evidence that sure cure would come in a year... your tinnitus could become 2 times worse, or 3 times, or 10 times... it could get to the point where you cannot take it for 1 second more. Tinnitus is almost universally well handled, we on this forum are people who have it bad. It is extremely easy for me to imagine that someone who has their tinnitus volume extreme does not even care if the cure will come. Just one hour inside the head of that person is too much. So in such cases it is logical to understand that things like "depression" and "trying everything" is meaningless. Besides, most people who successfully end their life in response to a disease are not those who are depressed or have melancholic tendencies but those anti-social people who are really cold and emotionless, they have a cold calculating distance and are able to assess their situation much less emotionally than others.

I do not really understand why are you trying to be all motivational about this. If you put someone through torture for years and later release them, they are not the same people, they are not stronger, they have not "won", they are just toys and now badly damaged toys. Some people just don't wanna be toys even for a short time.

 

[Christian78]

I am forced by a friend @dan to publish my experience in a detail:

I was to urologist because some pain in urethra that shows 2 day an vanished and my orange urine.
I took medicine 1h before next events:

So yes i started on my bus station buss 99 and went 5 station to realize i should be going in opposite direction.
I step off in a middle of cross street. My mobile said I went in wrong direction and i should take bus 25. So I take buss 25 and i go with him 8 station in right direction. To my surprise I arrived to Eketregatan. I could get there with my usual bus 16 that goes every 4 minutes but well, I had to change 2 buses and get lost.

I must say when a Trobalt hits me like drug I feel exactly like a SHEEP in A DESERT STORM!

So there I was on Eketregatan a big place, several buses but was not close to my doctor. I know i lost time, and i know where i should come but i did not know HOW to get there. I know there is line of 3 different trams passing that way and i run down to trams. And I take first on that came because it is just few stations back. And I was there in few minutes. After it i came out and up on a street where i find a lady delivering post and I jump her with a question where is Lundby hospital, and jumps back, look at me... me the lost sheep... and say just go down ant there is hospital. And i run down and there was a guy he told me next building and on underside is enter. (just to say i was in same hospital 2x before). So me a half shaved sheep arrive on a spot, enter inside and without a breath said that i must go to urologist because i am late. And some cute blue eyed guy told me to breathe and it is ok, he took me 100 kr and said i go on lvl 2 and it is ok.

I took elevator and came up, deep breathing, calm down, deep breathing red in face, like a every ordinary half shaved sheep that have been chased by big bad wolf.

There is sit in waiting room. I listen. There is no tinnitus. I place fingers on ears, still no tinnitus. But me, the sheep had to put plugs in ear to hear is there my dear life long friends, my only love my T, and for 10 seconds there was no tinnitus, and well i poped up right plug and ... well there was t in my right ear from pop up sound... lucky me...

Dr check was ok, he said no immediate danger of death, or in other words i got some muscle pinched.

Then I, a sheep, nice cute sheep, bit lost, but well, no one is perfect decided that it is time to go on lunch with Antonio as we agreed 3 days ago... (and mistakenly called him yesterday that i am coming so he was polite to say, i can come over, but lunch is tomorrow on Friday or that said today...).

I again took my smarty pants mobile who told me to take bus 25 that goes to him. I got out of building but i forgot I was not on Eketregatan any more, but 3 stops along a road at hospital, and is said station F. And then i went looking, i must say me vision got much worse in last 4 weeks with trobalt, bit hard to notice 50 cm high letter F.

Hej, but there is was, few run over the red light and one green and i was there. THE sheep got to a right place and just needs to enter a buss. Bus was there in 2 minutes, I sit and i look, and i look trough window. Gray sky like when you go to funeral, and that rain, you know small little rain, you don't see it until it hits you, and in 3 minutes you are wet... Trees with few yellow leaves, a dark road, funny Swedes rebuilding a cross street they built last year.. hey but that is life. And then I past university hospital, and i know from a memory i am somewhere there close to Linneplatcen.

And then it was nice, warm in bus, but we were going away. I stood up and ask nice lady driver are we going to Linneplatcen. She took a deep look at me , bit dropping her jaw, and said: Well we are coming from Linneplatcen...

Bleee, bleeee, a sheep cant do anything else, specially if it half shaved so this cold wind get to her bones. I asked her what to do, she said, get of and get on opposite side of a road and wait for bus 25. Bleeee..... me, a cute nice white as cheese sheep jump happy of the buss and look and the other buss station. Happy run over the street, and SURVIVED ...

I been waiting buss 25, but i could take buss 65 and 671. And yes, i took buss 671... Buss took me to linneplatcen...
But i forgot, my friend lives in linnegatan some 600 m away...

What i could do is take any tram going down that alley. And I almost took one that was goin in 3rd direction, but there was GOD who prevented me to get inside on time so tram went away.

I seen tram number 6 orange, I know he goes down the alley. I took it and went down 2 stations. Some 1,5 months ago I helped this friend to move in this apartment and I know very well entrance from caring 20 boxes and 2 beds and tv, pictures mirror etc.. entrance did not had steps and it was close to Spanish restaurant on corner .

But sheep has small brain and bad eye sight so it can to get lost easily... I wen up they alley 200 m and could not recognize entrance. And I went back, slowly drugging leg after a leg almost back to station, and few second before calling Antonio and there it was, number 25! this time not bus 25 but entrance 25, and i went in. I spend a few hour speaking and going to dinner, and they separate and i went back home, tram 6 safe one!, and then buss 16 home

And here i was left at 11, and succeeded to come at 19, so just 8 h later, a small sheep found it ways back, with a small assistance of TROBALT.


So well now you know how is to eat trobalt.
@dan forced me to write how does it look like, btw t was on 10-20% during my sheep period.

bleeeeeee

Christian

 

[rtwombly]

Besides, most people who successfully end their life in response to a disease are not those who are depressed or have melancholic tendencies but those anti-social people who are really cold and emotionless, they have a cold calculating distance and are able to assess their situation much less emotionally than others.

I don't know where you get this idea. If a person is cold and emotionless, why should they be upset about a disease? This seems contradictory to your statement that we should respect people who make this decision.

If you put someone through torture for years and later release them, they are not the same people, they are not stronger, they have not "won", they are just toys and now badly damaged toys. Some people just don't wanna be toys even for a short time.

It sounds like you are describing a religious crisis here. Nobody is keeping us as prisoners to tinnitus. Nobody is playing with us like toys. I'm sorry you have such a grim world view. Pressing on even when you feel damaged is valuable because people are valuable. Is the man with one eye less worthy of respect and kindness because of his deficiency? Are all his achievements less worthwhile because he is not a two-eyed man? A long-distance runner does not win the race by quitting when he is tired or thirsty or in pain. He wins by persistence despite these impediments. I hope you'll get some help, Hengist. I responded to you mostly because I think your comments could be destructive to others, but if they reflect your own frame of mind, I hope you'll do the right thing for yourself and seek professional counselling. I've been an optimist all my life and I needed help to get out of the deep dark place I was in some months ago. We all need help sometimes.

@Christian78, that was quite an odyssey! It seems like there was some good in all the bad, with your tinnitus being lower. We certainly do need a more reliable medicine and one without these side effects. I worry about keeping my job if I ever do get a prescription.

 

[attheedgeofscience]

So well now you know how is to eat trobalt.

For what's worth, taking Flupirtine is nothing like that. Very little sluggishness now. Basically I am 95% "myself" - but I have also adjusted the time at which I take my slow-release tablet: instead of taking it midday with a meal, I now take it before bedtime. I will tell you: those 400mg pills knock me off to sleep so well, and then I sleep for 10 hours straight. And when I wake up, I feel sooooo good...

The only real side-effect with Flupirtine is liver toxicity.

 

[Hengist]

I don't know where you get this idea. If a person is cold and emotionless, why should they be upset about a disease? This seems contradictory to your statement that we should respect people who make this decision.


It sounds like you are describing a religious crisis here. Nobody is keeping us as prisoners to tinnitus. Nobody is playing with us like toys. I'm sorry you have such a grim world view. Pressing on even when you feel damaged is valuable because people are valuable. Is the man with one eye less worthy of respect and kindness because of his deficiency? Are all his achievements less worthwhile because he is not a two-eyed man? A long-distance runner does not win the race by quitting when he is tired or thirsty or in pain. He wins by persistence despite these impediments. I hope you'll get some help, Hengist. I responded to you mostly because I think your comments could be destructive to others, but if they reflect your own frame of mind, I hope you'll do the right thing for yourself and seek professional counselling. I've been an optimist all my life and I needed help to get out of the deep dark place I was in some months ago. We all need help sometimes.

@Christian78, that was quite an odyssey! It seems like there was some good in all the bad, with your tinnitus being lower. We certainly do need a more reliable medicine and one without these side effects. I worry about keeping my job if I ever do get a prescription.

From statistics. Just google it. They might get upset less but their pain and quality of life goes down the same and they do not have the positive emotional reinforcement that other people get from being hopeful, optimistic and supported by their family and friends. You might see special emotional reasons to continue and to fight, you might feel defiance but they don't.

 

[SoulStation]

From statistics. Just google it. They might get upset less but their pain and quality of life goes down the same and they do not have the positive emotional reinforcement that other people get from being hopeful, optimistic and supported by their family and friends. You might see special emotional reasons to continue and to fight, you might feel defiance but they don't.

This thread is not about suicide. Please stay on topic or take it to another thread.

 

[Tinnitus Talk]

This thread is not about suicide. Please stay on topic or take it to another thread.

Agreed.

From now on, back to topic, everyone.

 

[Martin69]

For what's worth, taking Flupirtine is nothing like that. Very little sluggishness now. Basically I am 95% "myself" - but I have also adjusted the time at which I take my slow-release tablet: instead of taking it midday with a meal, I now take it before bedtime. I will tell you: those 400mg pills knock me off to sleep so well, and then I sleep for 10 hours straight. And when I wake up, I feel sooooo good...

The only real side-effect with Flupirtine is liver toxicity.

And what does it do on your T?
Does it reduce it? Or is it just for sleeping?
Just curious.

 

[Christian78]

Well what i noticed and you know how long i am using 300 x 3 mg per day is that, 2 weeks ago Monday i had incident, took medicine but then i could not remember did i took it, i took 300 mg, then after 2,4 h i took 200 mg, and with medicine falling apart in blood fast and maximum dosage of 400 mg (800 in blood) i had somewhere in blood 700 mg. But i had a strong side effects very hard one, and it passed... Tuesday had problem breathing neurosis etc. after that moment my side effect just went from some 30-1,5 after exposure to 5-6 h.

It made me like depressed, also can be strong weather change. And side effect get you so drugged I think that you can not pay attention on t even if it is stronger in that state.

I decided to start to tapper to minimum lower dosage to give my self a chance to recover a little from this medicine but day before yesterday i tried and yesterday avoiding to have concentration in blood 300 but 220-260 and i had strong reaction of tinnitus that came back imminently.

So i suppose i will have to tray to tapper 50 mg per dosage, except evening dosage that remains 300, to avoid so sudden reaction even tho the change was not so strong.

entire point is: side effects are to hard to tolerate but going lower make it unbearable.

CAN SOMEONE GIVE LINK TO BENRYU TAPERING SHEMA

 

[Danny Boy]

Well what i noticed and you know how long i am using 300 x 3 mg per day is that, 2 weeks ago Monday i had incident, took medicine but then i could not remember did i took it, i took 300 mg, then after 2,4 h i took 200 mg, and with medicine falling apart in blood fast and maximum dosage of 400 mg (800 in blood) i had somewhere in blood 700 mg. But i had a strong side effects very hard one, and it passed... Tuesday had problem breathing neurosis etc. after that moment my side effect just went from some 30-1,5 after exposure to 5-6 h.

It made me like depressed, also can be strong weather change. And side effect get you so drugged I think that you can not pay attention on t even if it is stronger in that state.

I decided to start to tapper to minimum lower dosage to give my self a chance to recover a little from this medicine but day before yesterday i tried and yesterday avoiding to have concentration in blood 300 but 220-260 and i had strong reaction of tinnitus that came back imminently.

So i suppose i will have to tray to tapper 50 mg per dosage, except evening dosage that remains 300, to avoid so sudden reaction even tho the change was not so strong.

entire point is: side effects are to hard to tolerate but going lower make it unbearable.

CAN SOMEONE GIVE LINK TO BENRYU TAPERING SHEMA

Thing with trobalt is, you need to use it till you are at the optimum dose. The hyperactivity is found to be gone at doses of 1200mg...And I suspect it's the same dosing as autifony's new drug 4 tablets a day at 300mg.

 

[rtwombly]

@Christian78 Please help me (us) to understand.

You're saying that your side effects have been very bad recently especially when you take a dose too close to your previous dose, correct?

Are you currently having good results for your tinnitus, or any benefit at all?

Do you have any means to help you take your medicine on time? For instance, if you have an iPhone: https://itunes.apple.com/us/app/medcoach-medication-reminder/id443065594?mt=8, or for Android: https://play.google.com/store/apps/details?id=com.medisafe.android.client&hl=en.

Your current dosage is 300mgx3/day, and you are planning to reduce to 250/250/300?

What is your dosing schedule, and do you have any time that you could extend the distance between doses. For instance, if you wake up at 8am and take your first pill, then take your second pill at 3pm and your third pill at 10pm, that would give you an even seven hours between pills during waking hours, with one 10 hour gap from 10pm-8am. You could increase that gap to eight hours by taking a pill at 8am, 4pm, and midnight, but that might interfere with your sleep.

Also, do you find any correlation between activities, food, or other medications and when your side effects are especially bad? it might be worth your while to keep a food journal. I remember having an allergic reaction after taking a medication I had been on for weeks and eating a meal I had eaten many times before, evidently because there was some chemical reaction in the combination.

 

[SteveToHeal]

For what's worth, taking Flupirtine is nothing like that. Very little sluggishness now. Basically I am 95% "myself" - but I have also adjusted the time at which I take my slow-release tablet: instead of taking it midday with a meal, I now take it before bedtime. I will tell you: those 400mg pills knock me off to sleep so well, and then I sleep for 10 hours straight. And when I wake up, I feel sooooo good...

The only real side-effect with Flupirtine is liver toxicity.

Is there any way to counteract the liver toxicity with a liver cleanse or anything like that? 95% "myself" sounds amazing. Do you put that down to taking Flupirtine? I know you do LLLT too. What i would do for a good sleep!

 

[Christian78]

Thing with trobalt is, you need to use it till you are at the optimum dose. The hyperactivity is found to be gone at doses of 1200mg...And I suspect it's the same dosing as autifony's new drug 4 tablets a day at 300mg.

@Christian78 Please help me (us) to understand.

You're saying that your side effects have been very bad recently especially when you take a dose too close to your previous dose, correct?

Are you currently having good results for your tinnitus, or any benefit at all?

Do you have any means to help you take your medicine on time? For instance, if you have an iPhone: https://itunes.apple.com/us/app/medcoach-medication-reminder/id443065594?mt=8, or for Android: https://play.google.com/store/apps/details?id=com.medisafe.android.client&hl=en.

Your current dosage is 300mgx3/day, and you are planning to reduce to 250/250/300?

What is your dosing schedule, and do you have any time that you could extend the distance between doses. For instance, if you wake up at 8am and take your first pill, then take your second pill at 3pm and your third pill at 10pm, that would give you an even seven hours between pills during waking hours, with one 10 hour gap from 10pm-8am. You could increase that gap to eight hours by taking a pill at 8am, 4pm, and midnight, but that might interfere with your sleep.

Also, do you find any correlation between activities, food, or other medications and when your side effects are especially bad? it might be worth your while to keep a food journal. I remember having an allergic reaction after taking a medication I had been on for weeks and eating a meal I had eaten many times before, evidently because there was some chemical reaction in the combination.

My hyperactivity is long gone. I am behaving like drunk lunatic now after taking dosage for 5h. Before it was 30 minutes. My tinnitus is getting out of trobalts grasp.

after one time taking 2 doses to close my brain was fried and now it is behaving like drunk all the time, when i take pil it make me terrible for 6h not initial 30 minutes!

Benefit, yes my t is lower, side effect I dont know my name, where and why i live, what i am doing and what i am supposed to do, i can not hold thing in my hand, i dont heave streng neather posibility to do or see clear. I dont have me, but i dont have tinnitus, I am zombie without tinnitus, or quite low tinnitus.

250+2250+300.

I am zombi cant aswer so many questions sorry.

I am not idiot, I take my pill on time. And you are making me idiot by reminding me to install baby watcher. I have ONLY ONCE made mistake. And here on this place it is criminal. When you make mistake only once, then it will be repeated all the time, and on every post it will be Christian is taking every dosage double etc.

I shall not update you any more on my progresses. I am not obliged, and it makes me feel really bad, and I feel interigeted, wronguly accused :

"especially when you take a dose too close to your previous" (happend once)


What is your dosing schedule, and do you have any time that you could extend the distance between doses. For instance, if you wake up at 8am and take your first pill, then take your second pill at 3pm and your third pill at 10pm, that would give you an even seven hours between pills during waking hours, with one 10 hour gap from 10pm-8am. You could increase that gap to eight hours by taking a pill at 8am, 4pm, and midnight, but that might interfere with your sleep.

Also, do you find any correlation between activities, food, or other medications and when your side effects are especially bad? it might be worth your while to keep a food journal. I remember having an allergic reaction after taking a medication I had been on for weeks and eating a meal I had eaten many times before, evidently because there was some chemical reaction in the combination.[/QUOTE]

person does no understand i have side effects, obviously or i am stupid, how will i remember to make journal??? Person is insisting on something i wrote i cant do. Person definitely do not read what i wrote.

 

[Christian78]

Thing with trobalt is, you need to use it till you are at the optimum dose. The hyperactivity is found to be gone at doses of 1200mg...And I suspect it's the same dosing as autifony's new drug 4 tablets a day at 300mg.

How can we speak about new drug from autifony when they dont even answer emails. Get real, there is no such thing as NEW DRUG FROM AUTIFONY!.

Second they said their drug will be like 10x stronger?!? but autifony is in shadow, windrown from testes in usa, windrow international participants and became too silent to be considered realistic any more. I wish it was but i am now really pessimistic about them and if they continue like this it may take years and years to make something. If they do exist then at all.

 

[Christian78]

@Christian78 Please help me (us) to understand.

You're saying that your side effects have been very bad recently especially when you take a dose too close to your previous dose, correct?

Are you currently having good results for your tinnitus, or any benefit at all?

Do you have any means to help you take your medicine on time? For instance, if you have an iPhone: https://itunes.apple.com/us/app/medcoach-medication-reminder/id443065594?mt=8, or for Android: https://play.google.com/store/apps/details?id=com.medisafe.android.client&hl=en.

Your current dosage is 300mgx3/day, and you are planning to reduce to 250/250/300?

What is your dosing schedule, and do you have any time that you could extend the distance between doses. For instance, if you wake up at 8am and take your first pill, then take your second pill at 3pm and your third pill at 10pm, that would give you an even seven hours between pills during waking hours, with one 10 hour gap from 10pm-8am. You could increase that gap to eight hours by taking a pill at 8am, 4pm, and midnight, but that might interfere with your sleep.

Also, do you find any correlation between activities, food, or other medications and when your side effects are especially bad? it might be worth your while to keep a food journal. I remember having an allergic reaction after taking a medication I had been on for weeks and eating a meal I had eaten many times before, evidently because there was some chemical reaction in the combination.

i use it like that: 8am, 4pm, and midnight, but that might interfere with your sleep.

 

[Christian78]

I shall not update you any more on my progresses. I am not obliged, and it makes me feel really bad, and I feel interigeted, wrongfully accused for something that can happen to anyone like me forgot did i took dosage once and well it is my problem. I will not update any more. I will participate in talk. I am sorry i relly not fell well when someone makes entire list like homework like @rtwombly asked. I always feel obliged to reply but i can not any more.

 

[SteveToHeal]

I dont have me, but i dont have tinnitus, I am zombie without tinnitus, or quite low tinnitus.

Hi Christian - Firstly, I am sincerely sorry to hear about these crazy side affects you are having from Trobalt. That can not be pleasant. I can't imagine it can be helpful for you studying either, if you are battling to remember things.

However, it is quite remarkable that your tinnitus is quite low. That i would say is a win. However, the side affects you are having sound really awful and (I am sure you know already) I would taper off.

Thanks for all your feedback.

 

[Danny Boy]

Hi Christian - Firstly, I am sincerely sorry to hear about these crazy side affects you are having from Trobalt. That can not be pleasant. I can't imagine it can be helpful for you studying either, if you are battling to remember things.

However, it is quite remarkable that your tinnitus is quite low. That i would say is a win. However, the side affects you are having sound really awful and (I am sure you know already) I would taper off.

Thanks for all your feedback.

It does sound awful...But if he carries on, this reduction may be permanent, like other users.

 

[Christian78]

Hi Christian - Firstly, I am sincerely sorry to hear about these crazy side affects you are having from Trobalt. That can not be pleasant. I can't imagine it can be helpful for you studying either, if you are battling to remember things.

However, it is quite remarkable that your tinnitus is quite low. That i would say is a win. However, the side affects you are having sound really awful and (I am sure you know already) I would taper off.

Thanks for all your feedback.

what studies, i can remember how to make meal, i make write lists as i remember what to buy in shop or do i have to buy something, i go to toilet and forget thing, and then back and forth 20 times before i remember. and many say "ah it happen to me too", but now 30 times in one day!!!!!!!!!!!!

Thank you Steve for support (hug)

 

[Juan Carlos]

My hyperactivity is long gone. I am behaving like drunk lunatic now after taking dosage for 5h. Before it was 30 minutes. My tinnitus is getting out of trobalts grasp.

after one time taking 2 doses to close my brain was fried and now it is behaving like drunk all the time, when i take pil it make me terrible for 6h not initial 30 minutes!

Benefit, yes my t is lower, side effect I dont know my name, where and why i live, what i am doing and what i am supposed to do, i can not hold thing in my hand, i dont heave streng neather posibility to do or see clear. I dont have me, but i dont have tinnitus, I am zombie without tinnitus, or quite low tinnitus.

250+2250+300.

I am zombi cant aswer so many questions sorry.

I am not idiot, I take my pill on time. And you are making me idiot by reminding me to install baby watcher. I have ONLY ONCE made mistake. And here on this place it is criminal. When you make mistake only once, then it will be repeated all the time, and on every post it will be Christian is taking every dosage double etc.

I shall not update you any more on my progresses. I am not obliged, and it makes me feel really bad, and I feel interigeted, wronguly accused :

"especially when you take a dose too close to your previous" (happend once)


What is your dosing schedule, and do you have any time that you could extend the distance between doses. For instance, if you wake up at 8am and take your first pill, then take your second pill at 3pm and your third pill at 10pm, that would give you an even seven hours between pills during waking hours, with one 10 hour gap from 10pm-8am. You could increase that gap to eight hours by taking a pill at 8am, 4pm, and midnight, but that might interfere with your sleep.

Also, do you find any correlation between activities, food, or other medications and when your side effects are especially bad? it might be worth your while to keep a food journal. I remember having an allergic reaction after taking a medication I had been on for weeks and eating a meal I had eaten many times before, evidently because there was some chemical reaction in the combination.

person does no understand i have side effects, obviously or i am stupid, how will i remember to make journal??? Person is insisting on something i wrote i cant do. Person definitely do not read what i wrote.

Hi, just want to make this post clear. So you said that because of one time double dosage, now you feel like drunk all the time, and also your T went down? it went up before that trouble right?
Maybe you should get advice from a neurologist - explain everything, or slowly taper off until you recover to normal state and then start from zero.
That double dose could make too much effect beyond T area
We appreciate your feedback, thanks for posting