Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
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So according to your experiences, I should try taking high dose (900mg-1200mg) for 2months?
For now I've done 1,5 months with really slow taper up (about 2,5 weeks) and 3 weeks with fast taper up. I didn't feel any gradual improvement after I got to the max dosage.
I am afraid of the max dosage ...mostly because of the drugged effect . Might be making a mistake there ?
There's info on prices somewhere in this thread.
I only remember that 84x200mg is around 110 euros!
i like the idea of a fast taper up. it's what Mpt did. you are trying to undo the pathogenic plasticity. i like zimicheal's analogy of 'busting the doors down'.
2 months might be a bit long, i would try for a month or so on that dose and see if anything significant is occurring.
i think everyone's tolerance is different. that's why i suggest getting to a dosage that you can handle, and then staying there. i would also suggest 'pushing the envelope'.
Last night I got so annoyed about my tinnitus and about the fact that trobalt(my last hope) doesn't work, so I took 400mg as a single dose. 30 minutes later I felt very sedated, I tried to listen to my t, I plugged my ears and I could hear only one sound and I felt like it comes from the center of my brain. Now, I don't know if it really did something or I was too sedated to be aware of the other sounds.
Strange thing that happened and I am curious if someone who tried trobalt experienced this too...I don't even know how to call it "Closed eyes hallucinations"? I was in front of my laptop and when I closed my eyes for a few seconds I could still see the screen, same thing happened with my phone, when I closed my eyes I could see the screen for few seconds...
Now, I really don't know what to do next, to carry on at a lower dose? Or stop? Because I have myopia at my both eyes, so I can't risk to ruin my vision even more. It's weird it affects my vision after 3 days, because I heard that only after 6 months it can do that..
Strange thing that happened and I am curious if someone who tried trobalt experienced this too...I don't even know how to call it "Closed eyes hallucinations"? I was in front of my laptop and when I closed my eyes for a few seconds I could still see the screen, same thing happened with my phone, when I closed my eyes I could see the screen for few seconds...
Now, I really don't know what to do next, to carry on at a lower dose? Or stop? Because I have myopia at my both eyes, so I can't risk to ruin my vision even more. It's weird it affects my vision after 3 days, because I heard that only after 6 months it can do that..
- Jan 25, 2013
- 3,596
- Tinnitus Since
- 2008
- Cause of Tinnitus
- TMJ disorder, airplane barotrauma, noise exposure.
It's not a hallucination exactly. It is after image. Seeing after images after looking at bright light/object is quite normal. And it is more apparent in low light conditions. Under the effect of Trobalt they may get stronger because your neurons (or maybe even photoreceptors?) are running a bit slow if that's a right description.
Most likely after images you described have nothing to do with retinal pigmentation which is a side effect of Trobalt.
This makes me thinking. I have no tonal T, but a head sound. It is like my head is buzzing with high-pitched tones. Cannot be directed to any ear. I guess, tonal would be if you hear a concrete beep tone in one ear.
Also my head sound stays the same the whole day, from 1st to last second. Sometimes I am lucky and it is less loud. But it is always there. Last time I took Trobalt (200mg), my volume decreased from maybe a 10/10 to a 4/10. But I was also sedated. So I am wondering if Trobalt can do something on the head noise.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
@Martin69, we are trying to "figure out our tinnitus" as @Dr. Nagler would say. There is of course a dichotomy between head noise and tinnitus stemming from the ears. Still, it all amounts to speculation.
But here is a thing which isn't speculation: very shortly - most likely tomorrow - we will deliver a very potent message of awareness of tinnitus research - specifically that related to SF0034. Some members may already have seen a preview of it, in fact...!
But here is a thing which isn't speculation: very shortly - most likely tomorrow - we will deliver a very potent message of awareness of tinnitus research - specifically that related to SF0034. Some members may already have seen a preview of it, in fact...!
ATEOS, first of all thanks again for your amazing work you do here. This means a lot for many of us. I am curious, hopefully something positive somehow. If it helps for research, I will give Trobalt a longer try. Problem for me is that I already have (for many years now) higher liver values (no one knows why). And I need being very careful with meds. Also if 200 mg sedate my already, what do 1200 mg to me? Of course if I could kill T or lower it, it will be worth it. But, like many here, no one knows if you are even worse after the trial. On the other side, no risk, no success.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
I wouldn't enlist as a guinea pig unless you want to: we need better data before an assessment of Trobalt can be made in terms of efficacy vs. chronicity and other variables...
Retigabine restricted to last-line use! https://www.gov.uk/drug-safety-upda...last-line-use-and-new-monitoring-requirements
- Mar 16, 2015
- 200
- Tinnitus Since
- 12/2014
- Cause of Tinnitus
- Neuronmodulation suggests noise induced?
I understand the desperation,i'm just not that desperate to try anything yet.
Unless there's a drug that has been tested and approved,but still though,
look at the side-effects list of approved drugs.I know a lot of it is mere
covering a broad spectrum to avoid accountability,but still.
Be very careful about drugs meant for other conditions.
Unless there's a drug that has been tested and approved,but still though,
look at the side-effects list of approved drugs.I know a lot of it is mere
covering a broad spectrum to avoid accountability,but still.
Be very careful about drugs meant for other conditions.
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Danny got 40 boxes from me
well pick outside city and it should be ca 50 € per 82 pills of 100mg
I am severly sensitive to meds and after 1,5 year i did not got blue, and when i stoped i got back to where i was before just that i could not remmber what was during usage, it erases memory so it is hard to stress yourself
trobalt taking 50mg morning 100 middle in a day , 150 mg before a sleep.
somewhere at 18:00 taking 200 carbamazepinum ( do not sure if it helps but i think so )
sometimes 25mg zolpidem for sleep.
before i took trobalt( in september) sleep was 3 hours per night. T about 8. and it was almost imposible to live .
now T is about 3-4. and it is possible to live a normal live. do not know for how long.
i am afraid to icrease trobalt dose for i working as music teacher and my tinitus reactivating during work even i working with R25 filters. and i afraid that if i icrease dosage then small doses can do not work . and yet one reason it is a bit expensive.
somewhere at 18:00 taking 200 carbamazepinum ( do not sure if it helps but i think so )
sometimes 25mg zolpidem for sleep.
before i took trobalt( in september) sleep was 3 hours per night. T about 8. and it was almost imposible to live .
now T is about 3-4. and it is possible to live a normal live. do not know for how long.
i am afraid to icrease trobalt dose for i working as music teacher and my tinitus reactivating during work even i working with R25 filters. and i afraid that if i icrease dosage then small doses can do not work . and yet one reason it is a bit expensive.
Hunszi
Member
- Apr 26, 2015
- 71
- Tinnitus Since
- 2015 (got worse in 20,21)
- Cause of Tinnitus
- Noise induced
Hi guys,
This is a huuuge post, I don`t really have the time or patience to read all 228 pages, so actually I have just one question.
Does Trobalt works? I read some post, someone stated yes, someone stated no...so what`s the truth?
This is a huuuge post, I don`t really have the time or patience to read all 228 pages, so actually I have just one question.
Does Trobalt works? I read some post, someone stated yes, someone stated no...so what`s the truth?
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
I have personally suggested that the thread is discontinued.
Your post is a good reason why that is.
Mithrandir
Member
- Nov 17, 2015
- 336
- Tinnitus Since
- 10/2015
- Cause of Tinnitus
- Acoustic Shock Disorder (TTTS)
I read the pages cause I want to save my life of this burden & I'm interesting by trobalt. I know the journey in Hell will be long. If someone want to heal with one clap of hands... (not to close of my ears plz), I think it's not possible but let the thread continues ?!
@Hunszi
In short it is trial and error.
One user (mpt) seemed to be cured by taking it for around 3 months.
Danny Boy has a reduction of volume after 8 months taking it.
Some have/had a temporary effect during taking Trobalt.
Some have/had no effect.
My impression is (since I was there from day 1) that Retigabine/Trobalt has an effect.
But no one knows any dosage or any length of taking it to see a real improvement - if at all.
Since there is no medical, scientific trial with Trobalt, we do this ourselves here.
So it is trial & error.
In short it is trial and error.
One user (mpt) seemed to be cured by taking it for around 3 months.
Danny Boy has a reduction of volume after 8 months taking it.
Some have/had a temporary effect during taking Trobalt.
Some have/had no effect.
My impression is (since I was there from day 1) that Retigabine/Trobalt has an effect.
But no one knows any dosage or any length of taking it to see a real improvement - if at all.
Since there is no medical, scientific trial with Trobalt, we do this ourselves here.
So it is trial & error.
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Then I am sorry. I had the impression that he had a larger volume reduction after longer time taking Trobalt.
Does anyone know if the efficacy of Trobalt has anything to do with how long a person has had T? I would assume the longer someone has T the further it develops in the brain?
So @Danny Boy whats the verdict on your experience with Trobalt?
Reading between the lines here doesn't look promising!
Reading between the lines here doesn't look promising!
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