Flupirtine — Another Potassium Channel Opener

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

    1. lapidus

      lapidus Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      That's odd. @FERNANDO GIL has also had contact with ATTEOS and apparently ATTEOS' T is 70% lower now because of LLT. Why will he start this stuff in the middle of his LLT healing? How does he know that his 70% lowering is from LLT and not from this stuff then?

      And yes loco, keep in touch with him and report back to us :)
       
      • Agree Agree x 1
    2. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      See information page
      Update... I have been on 400mg dose for 4 days now. I have timed the increase to 600mg to coincide with the first day of the weekend (ie. tomorrow). I am not too sure of Flupirtine's therapeutic potential as a "tinnitus combatant" - the drug has been around for quite some time now, and the first studies - in relation to tinnitus - were done already more than 10 years ago. However... more than anything is the importance of dosage rather than duration of treatment. So unless I have actually tried the daily 600mg daily dosage, I will never know the drug's actual potential.

      I did track down a 2006-paper on a treatment protocol trial for Flupirtine in relation to tinnitus - and carried out by none other than the well-known (tinnitus) neurosurgeon, Dirk De Ridder:

      http://www.ncbi.nlm.nih.gov/pubmed/17114151

      However, as can be seen, the study only used a maximum daily dosage of 200mg Flupirtine (in all cases). The study should - as a minimum - have put the various groups of patients on daily dosage of 200mg, 400mg, and 600mg, respectively. With just one group of volunteers using a daily dosage of 200mg, they might as well not have done the experiment in the first place; seems like one of those LLLT studies designed-to-fail, in my opinion. Problem is... this study was done - in part - by Dirk De Ridder, and that causes me a "headache"...

      Flupirtine is kind of a special drug - it is a fairly strong analgesic, but it neither belongs to the opioid- nor the NSAID-group. It is a unique painkilller (and muscle relaxant). It is generally well tolerated - except for one specific side effect: liver toxicity.
       
      • Informative Informative x 1
    3. SoulStation
      No Mood

      SoulStation Member Ambassador

      Location:
      New York
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Noise / Possible Medication
      Good luck with this. Thanks for the update.
       
    4. Juan Carlos
      Whistles

      Juan Carlos Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      02/2014
      Any update? after reading the experience from Christian78, its worth considering other drugs with less side effects than retigabine
       
    5. tomm
      Thinking

      tomm Member Benefactor

      Location:
      London, UK
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Acoustic trauma (club drumming)
      • Good Question Good Question x 1
    6. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      See information page
      I am going to wait a little before doing a proper update. There has been a lot of information to take in due to my consultation with Prof. Jeanmonod in Switzerland.

      I seem to have seen some improvements, but the improvements do not appear to be directly correlated with the medication being present in my blood. A recent paper on the pharmacology of potassium channel openers - http://www.ncbi.nlm.nih.gov/pubmed/24681057 - reveals that this class of CNS medication does have theoretical potential when it comes to treating tinnitus, but that dosage is somewhat important. In this respect, Trobalt has a better treatment potential than Flupirtine. But Flupirtine has a better overall safety profile than Trobalt (except for liver toxicity). It is easier to achieve a therapeutic effect with Trobalt (against tinnitus). To achieve a similar therapeutic effect with Flupirtine, I estimate "informally" that I would need to exceed the maximum daily allowed dosage of 600mg. I need to decide whether it would make sense to do a quick increase to 700 or 800mg for a couple of days.

      The aim is to observe a decrease in tinnitus while being on the medication (so that I know where the decrease in my tinnitus is coming from).

      The more I read about Flupirtine, the more interesting this unique drug appears to be. It is currently (also) being investigated as a potential treatment option for other neurological diseases such as MS, Creutzfeldt-Jakob's disease, and ALZ.
       
      • Informative Informative x 8
      • Like Like x 2
      • Agree Agree x 1
    7. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      See information page
      Besides @Denny who does not appear to be signing in on the forum anymore, does anyone know if this board has a pharmacist on it? By "pharmacist", I mean someone with a MSc degree in pharmacology (not a pharmacist assistant).

      Thanks.
       
    8. Juan Carlos
      Whistles

      Juan Carlos Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      02/2014
      I was getting informed about Flupirtine and found this document, that says the followring
      So, even it has less "number of side effects" than Retigabine, the liver toxicity its a very serious thing. Even in the case it works better for Tinnitus, wich is not proved and everyday we have more evidence than Retigabine kills T, I wouldn't give a try, "liver" is the most important organ to "live"

      It hasn't been tester for long periods of time, they always speak about Weeks, while Retigabine has been tested up to 4 years on maximum dose (yes, also with some bad side effects in some cases of very long term intake, wich is not necessary for tinnitus aparently)
       
      • Agree Agree x 1
      • Optimistic Optimistic x 1
    9. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      See information page
      ...Agreed - and that's why you will have seen me mention "hepatotoxicity" in just about all of my posts!
       
    10. Juan Carlos
      Whistles

      Juan Carlos Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      02/2014
      yes, i read it of course, that's why i wanted to check how serious is that toxicity and now i see is quite serious

      My opinion: In the case this was the last resort in the world about Tinnitus and had very severe one, i would give a try. But having some alternatives, for example retigabine wich is really working, or in some future time Autifony, or for some people now Tibetan herbs agar35, i think it doesn't worth to try and risk a healthy liver wich could be a very big problem, much more serious than T from a health viewpoint.
       
      • Agree Agree x 1
    11. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      See information page
      "Mini"-update...

      I took my 2nd 400mg Flupirtine slow-release tablet yesterday evening before bedtime (knocks you off to sleep and helps reduce the feeling of sluggishness that a person would experience one or two hours after intake during daytime hours).

      This morning, like yesterday morning, I definitely woke up with just about no tinnitus on the right side (= morse-code + low volume pulsatile/rythmic high pitched but unmaskable sound). My left-side tinnitus is a pure tone EEEEEEEEEEE-sound - and that sound is still present at the moment. Not much reduction, if any, I would say. This is probably why I haven't really felt an improvement in my own subjective terms earlier on, because my left-side tinnitus is the tinnitus that I developed most recently (and which therefore has my mind focused on it non-stop).

      I will be taking two 100mg pills today in order to increase the daily dosage to 600mg (today). Tomorrow, I will decide whether to go to 700mg or not. There is no tappering requirement involved with Flupirtine (which is one of the topics I'd like to ask a pharmacist about - ie. if Trobalt and Flupirtine have similar CNS impact on Kv7.x channels, then why is there a taper required for one - and not for the other; is it due to the patient profile and not the drug itself ie. epileptics vs non-epileptics, for instance...?).
       
      • Like Like x 2
      • Informative Informative x 2
    12. Viking
      No Mood

      Viking Member Benefactor

      Location:
      Italia
      During the year 2008 i tried Efiret for max 4 weeks (flupirtina) under De Ridder advice without significant results. Trobalt work better than Efiret but unfortunally i can't take it for more than 2 weeks before start to have kidney problems :cry::cry::cry:
       
      • Informative Informative x 1
    13. Juan Carlos
      Whistles

      Juan Carlos Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      02/2014
      hey, where that kidney problems attached to Trobalt? I dont remember to read it as a side effect. Did u had kidney problems before taking Trobalt?
       
    14. Viking
      No Mood

      Viking Member Benefactor

      Location:
      Italia
      No. I never had kidney problems. I made two attempts with Trobalt. the first time in about a week I had the problem of painful urination and a slight pain in his right side. with echo Doppler examination showed small calcifications renal then suspended the Trobalt and I solved by drinking lots of water and eating without salt. After about a month I started the Trobalt and after 10 days, at a dose of 100x3 day, I started to have a problem of incomplete emptying of the bladder. then again I had frequent urination and slowly perineal pain in the stretch. I had to pause it but looked very effective, even though I was pretty drunk. :cry:
       
      • Informative Informative x 1
    15. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      you maybe need to ease with milk and a oxalates like black tea, as stones are Calcium oxalate, more magnesium to bind calcium.... maybe i say ...

      And urination well, did you sit to pee or sit to pee? sit is natural position. i wonder why not lower dosage like 250...
       
    16. Viking
      No Mood

      Viking Member Benefactor

      Location:
      Italia
      Not sit. If i sit is more bad. 250mg is too low dosage to be an effective treatment. Minimum efficacy start with 100x3. Better was 100 + 200 + 100 + Clonazepam.
      I have read this: http://www.vertigo-dizziness.com/english/tinnitus/is-it-possible-a-recovery-from-tinnitus.html

      i'm very courius what mix of drugs used to treat it? Their statistics are staggering!
      Showed 61% to full restitution of tinnitus
      30% an important decrease of the symptom Which Allows People to follow a normal lifestyle.
      9% of cases do not show any improvement in symptoms or Reasons on Which consultation was originated....
       
    17. Carlos1

      Carlos1 Member Benefactor

      Location:
      Boston
      Tinnitus Since:
      08/2013
      Cause of Tinnitus:
      Root Canal
      Viking that's a very interesting article ...how can we find more about that type of treatment ?
       
    18. Viking
      No Mood

      Viking Member Benefactor

      Location:
      Italia
      I'm searching on pubmed by name of authors but i don't find more. Tomorrow i will call
       
    19. SethL
      Thinking

      SethL Member

      Location:
      Central Coast CA
      Tinnitus Since:
      09/14
      Cause of Tinnitus:
      Unknown-woke up one day with it
      @Viking
      Were you able to get through to anyone from the article above? I read through it and looked at their presentation slides as well. They definitely promote utilizing more than one drug to treat T.
       
    20. tomm
      Thinking

      tomm Member Benefactor

      Location:
      London, UK
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Acoustic trauma (club drumming)
      How are you getting on with the flupirtine @attheedgeofscience ?

      Any difference on the left side pure tone?
       
      • Good Question Good Question x 1
    21. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      See information page
      UPDATE

      The concept of the heterogeneity of tinnitus is uncommon knowledge amongst medical professionals, but well known amongst researchers of tinnitus. I have since the beginning of my ordeal assumed (= "known") that there is likely to be both a cochlear and a neurological component to tinnitus. It is for that reason that I did both two stem cell treatments and cold laser therapy in order to target the cochlea and the repair, thereof. I also focused on the neurological aspect of tinnitus by visiting the Swiss neurosurgeon, professor Jeanmonod, as well as looking into a possible pharmaceutical treatment (Flupirtine).

      I am not sure where to "place" this update as I have been doing both LLLT and Flupirtine during the past 8 months. At this point I seem to have entered a new stage of progress. I am having days such as today where my right side (and life-long) tinnitus is 100% gone. In the past, I would generally notice my left side tonal eeeeee-tinnitus more whenever my right side tinnitus would be gone (or nearly gone). However, this has now changed (at least on some days). Today, for instance, my improvement is approximately R/L = 100%/75% (and I am even having brief periods of 5 to 10 minutes where it is about R/L = 100%/90%).

      I have decided to do another round of Flupirtine to try to "cement" the improvement so that my tinnitus level does not fluctuate from day-to-day (i.e. yesterday it was about R/L = 50%/50% which is what I consider to be my baseline improvement i.e. it never gets worse than this). Flupirtine is quite an interesting drug and chemically similar to Trobalt. Its pharmacological profile along with similarities/differences in relation to the suppression of tinnitus can be found in literature such as:

      http://digital.library.unt.edu/ark:/67531/metadc287994/m1/1/

      The treatment of tinnitus is - for the reasons mentioned above - likely to require a multi-faceted approach (which is also exactly what I have done). With more than one variable at play, it is - however - difficult for me to pinpoint where my improvement has come from - but "something" is happening. On days such as this one, I can definitely feel my energy-levels picking-up; it's like being born again. Or almost!

      I will see how I get on in the coming week; Flupirtine does not require tapering (unlike Trobalt), but treatment cycles should be kept short due to liver toxicity (which may develop rather suddenly). I will consider seeing a neurologist here in Germany in relation to a prescription of Trobalt (depending on how I get on in the coming week). On days like this, I sense that "victory" may be near.

      attheedgeofscience
      19/FEB/2015.


      Relevant links/sources

      Research papers on inner ear hair cell repair using cold laser:

      http://synapse.koreamed.org/DOIx.php?id=10.3342/kjorl-hns.2009.52.1.19&vmode=PUBREADER
      www.ncbi.nlm.nih.gov/pubmed/24343446


      Clinical trial examining the use of stem cells for restoring auditory function in children:

      https://www.clinicaltrials.gov/ct2/show/NCT02038972?term=hearing+loss+cord+blood&rank=2


      "Justification" of a cochlear component to tinnitus (from the Auris Medical Q&A):

      Literature documenting the specific pathological processes that occur in the cochlea (along with the unique repair mechanism that takes place following inner ear hair cell death; this includes the notion of scar tissue - a topic I commented on before in a few of my posts):

      http://bmb.oxfordjournals.org/content/63/1/25.full
       
      • Informative Informative x 3
      • Optimistic Optimistic x 3
      • Winner Winner x 2
      • Like Like x 1
    22. marqualler
      Nerdy

      marqualler Member Benefactor

      Location:
      Minneapolis, MN
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Ear infection / Mild Noise Induced Hearing Loss
      Thanks for the update @attheedgeofscience -- this sounds fantastic. Would you mind sharing what your LLLT dosages and Flupertine dosages have been?
       
    23. locoyeti
      Sunshine

      locoyeti Member Benefactor

      Tinnitus Since:
      2/2014
      that is great news @ateos. i don't like to push solutions onto others because there is so much we don't know and there is a lot of uncertainty, but given that there are no real treatments for tinnitus and the positive (non-placebo) results from RTG i think it's clear that Kv7 modulators are the way to go. i really hope more people try RTG or Flupertine so we can get some more data. i look forward to your updates.
       
    24. lapidus

      lapidus Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
    25. locoyeti
      Sunshine

      locoyeti Member Benefactor

      Tinnitus Since:
      2/2014
      i haven't looked into Kv3 yet, but if i'm not mistaken keppra is a Kv3 modulator. i think the jury is still out on those, i think only one person said he had improvement on keppra. i hope Kv3 modulators eventually work out (aut0063), but i think there is a big distinction between Kv7 and Kv3, and there is much more info on Kv7 at this point in time. at some point i would like to dive into the Kv3 literature though, its just that i have seen so much improvement from the Kv7.
       
      • Agree Agree x 1
    26. lapidus

      lapidus Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      It's only @Viking so far who have tested Keppra and it didnt have any effect on his T but his H vanished. Other than that you're right, kv3 seems to be undiscovered territory but hopefully Autifony knows what they're doing.
       
    27. Philip83
      Jaded

      Philip83 Member Benefactor

      Location:
      Swede living in Austria
      Tinnitus Since:
      2001
      Cause of Tinnitus:
      Noise trauma from loud moped (2001) Noise blast (2014)
      I second this. What LLLT -clinic did you visit and what were the specs/duration (nr of sessions and per session) of the treatment? I'm currently looking into maybe trying this. Thanks!
       
      • Good Question Good Question x 1
    28. Zimichael

      Zimichael Member Benefactor

      Location:
      N. California
      Tinnitus Since:
      (1956) > 1980 > 2006 > 2012 > (2015)
      Cause of Tinnitus:
      Ac. Trauma & Ac.Trauma + Meds.
      Loco...Before you dive into Keppra be sure to check back on the thread as I covered a fair amount of ground there trying to figure out just what it "was/is"...Kind of hard to be sure actually as sources gave different answers.
      However I agree that there is scads more info on the Kv7's than the Kv3's for some reason. The difference in published articles/info./volume between the two classes is huge.
      Pity, seeing as AUT00063 is Kv3.

      Best, Zimichael
       
      • Agree Agree x 1
    29. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      See information page
      UPDATE

      Since my last update, I have been taking 400mg Flupirtine in the slow release tablet form. I take it just before bedtime as I might as well benefit from the sedation effect it has (Flupirtine is an analgesic/muscle relaxant) - however, I don't have problems to get to sleep otherwise (in general I take no medication for sleeping).

      As I have previously experienced when taking Flupirtine, my right side tinnitus is pretty much eliminated; this would also happen from time-to-time even without being on Flupirtine as my right side tinnitus tends to have a cyclic pattern to it with a cycle of about 3 to 4 days. However, the last four days have been totally steady (right side) with an improvement of about 85% to 100%. So there is no doubt that Flupirtine does "something".

      This morning, I woke up with a distinctly low left side tinnitus, as well. In fact, the first 10 minutes, I was essentially cured. It has started to pick-up just a tiny bit, but my left side tinnitus is no longer the usual tonal eeeeee-sound (more like a soft "electric hum", if that makes sense...).

      It is by no means time to open the champagne bottles just yet; I am simply reporting what I experience, as I experience it...

      Side-effects? Well, Flupirtine is very well tolerated by myself. I don't get anything close the side effects I have read about in the accounts in the main Trobalt-thread (and Flupirtine does act on the same channels as Trobalt). The only side-effects I experience is a mild sluggish feeling, slight cognitive impairment, and I notice I tend to write words that shouldn't be there or that make no sense. For example, in the sentence above, "This morning, I woke up with...", I initially wrote "This morning, I would up with..."; also my spelling is not as good as it would be when not taking Flupirtine.
       
      • Like Like x 5
      • Optimistic Optimistic x 3
      • Informative Informative x 2
      • Agree Agree x 1
    30. Mo_Mo

      Mo_Mo Member

      Tinnitus Since:
      25/11/2014
      Cause of Tinnitus:
      Unknown, Started A Week After A Cold
      @attheedgeofscience many thanks for the update, are you also still doing LLT? Or have you stopped LLT? Also in the past 8 months what has been you cycle of using flupirtine are you using it for a week each month? Also sometimes with trobalt users they experience spikes then a reduction, you had mentioned that you got a beep that was different than T similar to the one you got when you did stem cell, was this a one time experience or do you go get this beep from time to time with flupirtine
       

Share This Page

Loading...