Member- Jul 16, 2014
- 113
- 34
- Tinnitus Since
- 02/06/2014
- Cause of Tinnitus
- Labyrinthitis (Inner ear infection)
Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
No it's not licensed for tinnitus, it would have to be an off label prescription.My doctor won't let me have it. Apparently it's not licensed to be used for tinnitus in the UK
I went to a local pharmacy in a pharmaprix shop, could not do more standard than this lol, they did not have it in store, but told me that they could order it if I have the doctor prescription.
They looked for potiga 100mg & 200mg *_*
What's wrong with Calgary ?!
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
My doctor won't let me have it. Apparently it's not licensed to be used for tinnitus in the UK
Epilepsy medication falls within the scope of a neurologist. Your average GP would probably be willing to prescribe such medication for standard purposes also, but for experimental purposes, you would need to see a neurologist.
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
I just phoned pharamprix here in calgary, they told me the drug is not avail in Canada becasue of the potentially dangerous side effects, basically banned here in Canada. And and that the only way to get it is to go to the states (or somewhere else that the drug is approved)with my perscrition from here and have it co-signed by a a doctor in that country.
Double checked, actually you're right: http://www.hc-sc.gc.ca/dhp-mps/prodpharma/sbd-smd/drug-med/sbd_smd_2012_potiga_134659-eng.php
The drug was removed in 2013 from Canada, I called back the Pharmaprix I went to, and I asked the girl to double check this time and she confirmed me your information. They probably did not check the first time (I am so pissed) I went there and just say as a standard answer, "they could order it". What a lack of professionalism.
Anyone knows if it's available in France?
I am going there in a month, I could try to get it .
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
Man! Frustrating!
If we go to another country, can we bring it back across the boarder?
I am slightly concerned about the fact that this drug seems hard to get prescribed.
Usually they are willing to give you all kinds of poison.
Will my dick fall off or something ?
Usually they are willing to give you all kinds of poison.
Will my dick fall off or something ?
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
We should start a business, and smuggle potiga from the US, I suggest the following technic:
http://www.vice.com/read/pen-pals-the-stinky-buttpocket-part-one
SoulStation
Member
I'm going to try and get this from three of my doctors but am considering going to see a neurologist. I honestly am not expecting to get it but I figure it's worth a shot. If my doctor was willing to keep me on Benzo's for 4years+ why wouldn't she let me try this...LOL I can't think that this could be as bad as Benzo's as far as getting on/off of it.
Update: As Potiga is indeed not available in Canada anymore (fuck my life), I am lucky to have family in Europe, they are going to try to bring me back the drug.
Here is what my family doctor in Europe suggested:
Trobalt 50 mg 84 /1 box
Trobalt 100 mg 84 /1 box
Trobalt 200 mg 84 /2 boxes
Here is what my family doctor in Europe suggested:
Trobalt 50 mg 84 /1 box
Trobalt 100 mg 84 /1 box
Trobalt 200 mg 84 /2 boxes
I am still kind of curious as to why it is not available...low sales and little use or serious side effects ?
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
Serious side effects is what the pharmacist told me. Eye pigment change, blue skin. All the things we all know about and seem to be willing to chance.
All side serious side effects were reported after 4 years of treatment.
https://www.epilepsy.org.uk/news/news/trobalt-warning-effects-skin-and-eyes
- Jan 25, 2013
- 3,596
- Tinnitus Since
- 2008
- Cause of Tinnitus
- TMJ disorder, airplane barotrauma, noise exposure.
I am seeing my psychiatrist tomorrow and will get his opinion on Retigabine (Trobalt, Potiga) His nurse already told me he is not familiar with Retigabine, but at least I will see what he says, good or bad. I would think he would have a good risk/reward opinion of the drug. I know quite a few of us are desperate, but caution is needed. I will also try to talk to the neurologist I last seen. He seems pretty open minded to tinnitus sufferers.
From everything I have read, no one has actually lost their eye sight from it, and like @benryu said it was after very long term use, which hopefully we wont have to go through. Another article i read said, some of the people had vision of less than 20/20... WTF does that mean, i have pretty bad eye sight already, anyway im not saying it wont have any effects but none of this is proof that it is dangerous.
Table 4 in this link shows the AE from trials.
http://www.rxlist.com/potiga-side-effects-drug-center.htm
http://www.rxlist.com/potiga-side-effects-drug-center.htm
Yes but if it keeps my tinnitus away, I'd plan on it for life.
So I would be interested in long term effects.
The bluing is associated with duration. Other side effects, like urinary retention, could affect someone much sooner.
I think it makes sense to find the lowest effective dosage instead of ramping up right away to a high dose. Tinnitus is not epilepsy. Perhaps, a low dose will do it for most people!
I think it makes sense to find the lowest effective dosage instead of ramping up right away to a high dose. Tinnitus is not epilepsy. Perhaps, a low dose will do it for most people!
I found this 2011 reference. And I can't find a drug listing so I'll presume the drug is not available.
Grey01234
Here is the information that I have read about Maxipost and Retigabine on the internet.
http://archervox.blogspo...erimental-medicine.html
http://www.ncbi.nlm.nih.gov/pubmed/11378159
http://jpet.aspetjournals.org/content/314/1/282.short
http://www.ncbi.nlm.nih.gov/pubmed/21640740
http://www.pnas.org/content/97/8/4333.full
I e-mailed Dr. Salvi about Maxipost and doing clinical trials on human. He e-mailed back and said the drug was experimental and there are no plans to do human trials. I also e-mail NeuroSearch the drug manufacturer they stated they have no plans for clinical trials, but they are still in collaboration with Dr. Salvi. Retigbine yielded similar results. Wish they would do a human trial with Maxipost. Darn, darn, darn
Source: http://www.actiononhearingloss.org.uk/community/forums/tinnitus.aspx?g=posts&t=7354
I agree, a treatment for the life is one possibility, but I see a major difference with epilepsy.
Epilepsy is most of the time Genetic or assiociated with structural brain issues (eg: head injury, tumor, congenital malformation, etc..)
T. is not genetic and the auditory system is not being affected nor different from a healthy individual. (For common T. such as the ones caused acoustic trauma as eg) Only inner ear is fucked, and hair cells are only the trigger of T. through glutamate releases and the main modulator for the quality of hearing. (AM 101 is glutamate blocker tackling the first issue, for the second issue it's still pretty long term but indepent to a T. cure)
In other words, from a scientific point of view (or at least the actual scientific POV as it could change in a few years), T. is more a particular state than a permanent restructuration. Indeed the damagerd part (inner ear) is not causing permanent damage the auditory system in the brain but altering its normal flow.
That being said I believe it's not likely that a treatment should be taken for the rest of our life, but more for a few (months/years) in order to revert for a normal state and wait for plasticity to stabilize in the desirable state.
Depending on how long you had T. it will certainly take more time, but I don't see today any scientific evidence indicating the contrary.
(Now if it's a treatment for life, I would certainly not give a single shit about that as long as it works lol)
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
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