Pleasure_Paulie
Member
I thought I would use up the rest of my box and had 400mg this morning. No effect on Tinnitus, it maybe even made it slightly louder 
Flupirtine — Another Potassium Channel Opener
- Thread starter Mikel
- Start date
@undecided
did you continue to use Flupirtine since it seems to work quite well for you? I am thinking about trying this as well.
did you continue to use Flupirtine since it seems to work quite well for you? I am thinking about trying this as well.
undecided
Member
It has been shown that it is a toxic substance for the liver (they found that out 30 years after being on the market with countless generics circulating as well, gee, talking about being overprotective).
If you plan on trying it, you should (after having agreed with your doctor) do liver exams before and after.
I used it for the indicated duration (two weeks), I had no problems whatsoever while using and after having used. Nowadays, if I'm having a really bad crappy day, I may pop 300mg once and I'm good.
But that's me and it could be a whole different case for you...
If you plan on trying it, you should (after having agreed with your doctor) do liver exams before and after.
I used it for the indicated duration (two weeks), I had no problems whatsoever while using and after having used. Nowadays, if I'm having a really bad crappy day, I may pop 300mg once and I'm good.
But that's me and it could be a whole different case for you...
Pleasure_Paulie
Member
I used it and even at 400mg it did not assist. I had not side effects though
So it may not work for everybody.
undecided
Member
This seems to be the case. These drugs may be less potent when T is related to acoustic trauma or anxiety or whatever. Nobody knows, because nobody is bothering to put some real research on the matter.I used it and even at 400mg it did not assist. I had not side effects though
But there are people who might benefit greatly from using them and get their life back in order. That's a good thing, right?
It's all I'm saying...
Pleasure_Paulie
Member
Anybody that benefits in anything with this condition is a good thing. The total random results each of suffers achieve depending on difference medications does not make me feel hopeful about future treatments though!
undecided
Member
@Pleasure_Paulie
Just a suggestion (don't expect any rocket science here, merely an alternative way to take the medicine which might be more effective - for me, it is).
You have the dope (flupirtine) in capsule or pill form?
If it's the capsule form, fill a glass with, say OJ or water, and empty the contents of 3-4 (300-400mg) capsules in the liquid.
Since the flupirtine dust despises water solubility, stir with a spoon until it finally decides to mix with the water or the juice. Then drink it (the capsules are useless gelatin anyway, throw them in the bin). Refill the glass with water to make sure you get all the dope (some of "the final product" tends to just stick around the bottom or the sides of the glass).
Worth a shot.
Just a suggestion (don't expect any rocket science here, merely an alternative way to take the medicine which might be more effective - for me, it is).
You have the dope (flupirtine) in capsule or pill form?
If it's the capsule form, fill a glass with, say OJ or water, and empty the contents of 3-4 (300-400mg) capsules in the liquid.
Since the flupirtine dust despises water solubility, stir with a spoon until it finally decides to mix with the water or the juice. Then drink it (the capsules are useless gelatin anyway, throw them in the bin). Refill the glass with water to make sure you get all the dope (some of "the final product" tends to just stick around the bottom or the sides of the glass).
Worth a shot.
Pleasure_Paulie
Member
I finished my box from the Russian doctors unfortunately
But on the same note, there is actually no reason why flupirtine should have any efficacy. It works on a different channel to that of Trobalt.
Pleasure_Paulie
Member
- Sep 16, 2021
- 465
- 39
- Tinnitus Since
- 2002
- Cause of Tinnitus
- Medication ototoxicity
Bump on this thread. Has anyone else explored Flupirtine and its effectiveness for tinnitus?
It looks like it has the potential to be toxic to the liver if using long-term and is generally recommended for only a few weeks, but perhaps using for a few weeks during the acute stage of tinnitus could reverse some of it or help? Anyone have any insight? I'm about 3 months in from a tinnitus worsening.
@Padraigh Griffin, have you investigated this drug? I know you keep up with and research potassium channel modulators a lot.
It looks like it has the potential to be toxic to the liver if using long-term and is generally recommended for only a few weeks, but perhaps using for a few weeks during the acute stage of tinnitus could reverse some of it or help? Anyone have any insight? I'm about 3 months in from a tinnitus worsening.
@Padraigh Griffin, have you investigated this drug? I know you keep up with and research potassium channel modulators a lot.
Member
- Sep 16, 2021
- 465
- 39
- Tinnitus Since
- 2002
- Cause of Tinnitus
- Medication ototoxicity
It looked like the consensus was that it could be "safe" if only using for a short trial (weeks) and my thought was would it work to reverse tinnitus onset if taken in the acute stage? For long-term use, that wouldn't work because of liver toxicity, but maybe it would help those new to tinnitus to permanently undo or reverse it? What do you think?
- Jul 22, 2018
- 49
- Tinnitus Since
- 03/2015
- Cause of Tinnitus
- amitriptyline, hidden hearing loss, whiplash (?), stress (?)
It can damage your liver, but as an uncommon side effect, not as a rule. Many chronic users of Flupirtine suffer no hepatotoxicity, while some short-term users suffer serious injury (even acute liver failure) from a few weeks of use. Luck of the draw (or maybe more like Russian roulette).
A couple studies demonstrating safety of long-term use:
On the adverse reactions and efficacy of long-term treatment with flupirtine: preliminary results of an ongoing twelve-month study with 200 patients suffering from chronic pain states in arthrosis or arthritis
Long-term-treatment of chronic pain patients with flupirtine--on hepatotoxicity and persistent effectiveness from 7 months to 22 years
Am considering trying it after washing out from other medication trials. If it doesn't help after a few doses, then no harm. If it does help significantly, then I would probably pursue long-term use, with monthly hepatic function bloodwork.
Best to wait for the revised ones from Xenon.
They will come out for sure. Just a matter of when. Passed Phase 2 for epilepsy with flying colours.
- Sep 16, 2021
- 465
- 39
- Tinnitus Since
- 2002
- Cause of Tinnitus
- Medication ototoxicity
@Matchbox, since I might be in the "acute" phase, being about 3 months since my latest worsening, is there a chance that Flupirtine could permanently reverse it?
I guess my concern is that waiting for XEN1101 or another could take years, and by then I'd be in the chronic stage. I'm assuming that a potassium channel modulator will help those that have chronic tinnitus, but that it act more like a Tylenol that has to be taken daily to relieve a headache. Which is fine. I wouldn't mind taking a drug for life if it works and keeps working, meaning I don't reach tolerance. As long as it keeps working. That's what's important. I saw some people say that they reached tolerance on Trobalt and it quit working a few months in. So that's a concern. Even if it's somewhat hard on the body, I don't mind taking a drug for life. I'd rather live 20 good years than 40 miserable. This tinnitus is really bad so I'm desperate. I'm getting the high frequency, pulsating hiss that zaps, too — feels like electricity and causes physical sensations of pain. Not maskable either.
- Sep 16, 2021
- 465
- 39
- Tinnitus Since
- 2002
- Cause of Tinnitus
- Medication ototoxicity
Did you ever try Trobalt and if so, did you have tinnitus reduction? I'm still thinking about trying Flupirtine.
- Jul 22, 2018
- 49
- Tinnitus Since
- 03/2015
- Cause of Tinnitus
- amitriptyline, hidden hearing loss, whiplash (?), stress (?)
I didn't unfortunately. Agree with you, would rather take the drug for life if it works, even if it means shaving some years off.
Been following Xenon Pharmaceuticals' XEN-1101 as well - will probably take another 2 years to get to FDA approval, from what I can tell. Promising but also depressing to keep sitting around waiting.
- Sep 16, 2021
- 465
- 39
- Tinnitus Since
- 2002
- Cause of Tinnitus
- Medication ototoxicity
Are you still thinking of trying Flupirtine? I am 3 months in from my latest tinnitus worsening. It's so intrusive right now that it's often electrical in feeling, like currents running through the ears. And it has zaps that cause physical sensations of pain.
So I was thinking about trying Flupirtine in hopes that it might undo some of this before it becomes permanent. I dunno if such a venture would work, but the alternative—living with this nightmare—seems unreasonable. I've read studies that indicate Trobalt was successful in permanently undoing tinnitus in the acute stage. So perhaps Flupirtine would be, too.
Taking Flupirtine for a short course and monitoring the liver with routine tests might be worth it since my circumstances are so dire. I dunno.
Those who caution against this obviously don't understand the implications of debilitating tinnitus. When it's this bad, you're kind of in a nothing to lose predicament in some ways. I dunno. It's a mess.
Has anyone had success with Fycompa (Perampanel)? Can it be bought without a prescription or do you need a prescription (off-label)?
- Jul 22, 2018
- 49
- Tinnitus Since
- 03/2015
- Cause of Tinnitus
- amitriptyline, hidden hearing loss, whiplash (?), stress (?)
I totally feel you brother. Am definitely planning to try it but unfortunately won't be able until late summer / early fall when I have a chance to travel and procure some abroad. If you are able to try it and report back before then, please keep us posted. I will do the same. I think the urgency is definitely warranted in your case in light of the research on tinnitus becomes a self-reinforcing loop after a few months. If you are able to disrupt the latest worsening now, maybe that will keep it from becoming chronic.
- Jul 22, 2018
- 49
- Tinnitus Since
- 03/2015
- Cause of Tinnitus
- amitriptyline, hidden hearing loss, whiplash (?), stress (?)
Ela - I would refer you to this discussion re: Perampanel. Haven't had any experience with it myself. It is also an anti-convulsant but of a different class than the ones we're discussing here (Flupirtine and Trobalt - both K channel openers).
Is Flupirtine still available in any European country? I just read a decision market paper where it said Flupirtine was taken out of the market as of March 23, 2018.
Can you order it online anywhere if you have a prescription from a European neurologist or any other doctor?
Can you order it online anywhere if you have a prescription from a European neurologist or any other doctor?
The paper I mentioned is in my language but it is a directive from the European Union so I think all the countries part of the European Union have to follow it.They stated they took if off the market because of the side effects.
Maybe someone here can check if Flupirtine is still available outside of European Union, in any country at all? I'm in Romania.
- Sep 16, 2021
- 465
- 39
- Tinnitus Since
- 2002
- Cause of Tinnitus
- Medication ototoxicity
Why do you have to get it abroad? I am researching and seeing some other comments on here about Flupirtine being discontinued. I'm in the United States. Now I'm wondering if it's even available. I didn't realize it was pulled possibly from the market. I guess I didn't dig deep enough. I did some research, but didn't find that yet.
Why aren't more people jumping on this?
The ubiquitous flavonoid quercetin is an atypical KCNQ potassium channel activator
Have you tried Quercetin?
Star64
Member
Hi Deb,
I have never tried it because a friend told me it was ototoxic years ago. This study says it has been identified as being a putative ototoxin but its ototoxicity has yet to be confirmed in vivo in mammals.
Detecting Novel Ototoxins and Potentiation of Ototoxicity by Disease Settings
Natural products come from a diverse array of sources, are accessible over the counter, and are often used as chemical scaffolds for drug development. Neveux et al. screened a library of 502 natural products in 2017 and identified nine putative ototoxins, including kaempferol and quercetin; two of the major components of the popular supplement Gingko biloba. Pharmacologic inhibition of the hair cell MET channel attenuated hair cell damage, suggesting that like aminoglycoside antibiotics, these plant flavonols entered hair cells in a transduction-dependent manner. However, ototoxicity of kaempferol and quercetin has yet to be confirmed in vivo in mammals.
Natural products come from a diverse array of sources, are accessible over the counter, and are often used as chemical scaffolds for drug development. Neveux et al. screened a library of 502 natural products in 2017 and identified nine putative ototoxins, including kaempferol and quercetin; two of the major components of the popular supplement Gingko biloba. Pharmacologic inhibition of the hair cell MET channel attenuated hair cell damage, suggesting that like aminoglycoside antibiotics, these plant flavonols entered hair cells in a transduction-dependent manner. However, ototoxicity of kaempferol and quercetin has yet to be confirmed in vivo in mammals.
The article notes drugs both suspected and known for causing hearing loss and tinnitus.
Is this Flupirtine? Found by a friend of mine in Pakistan, but can anyone confirm this is the right version? I can't understand why it has Paracetamol in it!
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