Flupirtine — Another Potassium Channel Opener

Discussion in 'Treatments' started by Mikel, Jul 29, 2014.

    1. Pleasure_Paulie

      Pleasure_Paulie Member

      Location:
      Australia
      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Noise or maybe... unicorns!
      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 :)
       
    2. Emmi
      Not amused

      Emmi Member

      Tinnitus Since:
      November 2015
      Cause of Tinnitus:
      Noise Exposure
      @undecided

      did you continue to use Flupirtine since it seems to work quite well for you? I am thinking about trying this as well.
       
    3. undecided
      Breezy

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      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...
       
    4. Pleasure_Paulie

      Pleasure_Paulie Member

      Location:
      Australia
      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Noise or maybe... unicorns!
      I used it and even at 400mg it did not assist. I had not side effects though :) So it may not work for everybody.
       
      • Helpful Helpful x 1
    5. undecided
      Breezy

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      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.
      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...
       
    6. Pleasure_Paulie

      Pleasure_Paulie Member

      Location:
      Australia
      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Noise or maybe... unicorns!
      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!
       
      • Agree Agree x 2
    7. undecided
      Breezy

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      @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.
       
    8. Pleasure_Paulie

      Pleasure_Paulie Member

      Location:
      Australia
      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Noise or maybe... unicorns!
      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.
       
    9. 1MW
      No Mood

      1MW Member

      Tinnitus Since:
      2008 but cured and relapsed from benzos
      Cause of Tinnitus:
      ssnhl/benzos/unknown
      Where can I get some boxes of flupirtine?
       
    10. Pleasure_Paulie

      Pleasure_Paulie Member

      Location:
      Australia
      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Noise or maybe... unicorns!
      It doesn't do anything but cause liver damage. Why would you want some?
       
    11. 1MW
      No Mood

      1MW Member

      Tinnitus Since:
      2008 but cured and relapsed from benzos
      Cause of Tinnitus:
      ssnhl/benzos/unknown
      Because in my case it works very good.
       
    12. Jerad

      Jerad Member

      Location:
      Ohio; United States
      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.
       
    13. JPGL
      Frustrated

      JPGL Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Hearing loss? Noise? Stress? Unknown
      Flupirtine is not viable because, as I understand it, it can damage your liver.
       
      • Informative Informative x 1
    14. Jerad

      Jerad Member

      Location:
      Ohio; United States
      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?
       
    15. bobthebuilder
      Tired

      bobthebuilder Member Benefactor

      Location:
      northeast US
      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      amitriptyline, stress, sleep dep, ptsd (?)
      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.
       
      • Informative Informative x 2
    16. Matchbox
      Wishful

      Matchbox Member

      Location:
      BC Canada
      Tinnitus Since:
      August 2020
      Cause of Tinnitus:
      Noise Induced, Prednisone (drones), Barotrauma (distortions)
      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.
       
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    17. Jerad

      Jerad Member

      Location:
      Ohio; United States
      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.
       
      • Agree Agree x 1
    18. Jerad

      Jerad Member

      Location:
      Ohio; United States
      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.
       
      • Good Question Good Question x 1
    19. bobthebuilder
      Tired

      bobthebuilder Member Benefactor

      Location:
      northeast US
      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      amitriptyline, stress, sleep dep, ptsd (?)
      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.
       
      • Agree Agree x 2
    20. Jerad

      Jerad Member

      Location:
      Ohio; United States
      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. :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.
       
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    21. Ela Stefan

      Ela Stefan Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Ear Infection
      Has anyone had success with Fycompa (Perampanel)? Can it be bought without a prescription or do you need a prescription (off-label)?
       
    22. bobthebuilder
      Tired

      bobthebuilder Member Benefactor

      Location:
      northeast US
      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      amitriptyline, stress, sleep dep, ptsd (?)
      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.
       
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    23. bobthebuilder
      Tired

      bobthebuilder Member Benefactor

      Location:
      northeast US
      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      amitriptyline, stress, sleep dep, ptsd (?)
      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).
       
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    24. Ela Stefan

      Ela Stefan Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Ear Infection
      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?
       
      • Informative Informative x 1
    25. JPGL
      Frustrated

      JPGL Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Hearing loss? Noise? Stress? Unknown
      They withdrew Trobalt in 2017 and then Flupirtine in 2018? The only two potassium channel openers there were. Why did they do this? What sense does it make?
       
      • Good Question Good Question x 1
    26. Ela Stefan

      Ela Stefan Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Ear Infection
      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.
       
      • Good Question Good Question x 1
    27. Jerad

      Jerad Member

      Location:
      Ohio; United States
      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.
       
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    28. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Hall of Fame Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      12/2013
      • Good Question Good Question x 1
    29. Star64
      Kick ass

      Star64 Member

      Location:
      Melbourne Australia
      Tinnitus Since:
      2001
      Cause of Tinnitus:
      Noise induced
      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.​

      The article notes drugs both suspected and known for causing hearing loss and tinnitus.
       
    30. Ela Stefan

      Ela Stefan Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Ear Infection
      upload_2022-4-27_18-48-51.png

      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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