One Person's Cure: Pentoxifylline, Piracetam and Supplements (P+P+S)

Discussion in 'Support' started by Manuel Tissm, Nov 27, 2014.

tinnitus forum
    1. Manuel Tissm
      Angry

      Manuel Tissm Member

      Location:
      Portugal
      Tinnitus Since:
      07/2014
      Cause of Tinnitus:
      Acoustic trauma
      Hi,

      Anyone tried this ?
      http://www.dailystrength.org/c/Tinnitus/forum/14351845-95-tinnitus-cure-2-x

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      Original Post:

      Hello all, dear tinnitus sufferers.

      I have found cure for my tinnitus (in the sense that it's permanent).
      Even though it doesn't cure 100% of it, it still reduces it by orders of magnitude, or at least this is what it did for me.
      So I am writing it here now in hope that it can work for somebody else.

      I know it sounds like I'm trying to sell something, but it's not the case. What I describe doesn't imply any meds, supplements or books sold by me.

      Firstly, the story.

      - - - The story - - -

      In the year 2006 I had to take a strong dose of ketoprofen for 2 weeks. I had the very bad idea to go to the disco various times for long hours in those days. I did not know/realize the ketoprofen and the disco would "interact": the leaflet only mentioned pharmacological interactions... and with the knowledge I had at that time I couldn't guess that. So I developed a significant tinnitus (I skip some details here) and when I realized that, it was already loud.

      The next months were the worst of my life: I couldn't sleep, I couldn't study, I couldn't think of anything else then the tinnitus. I was near to suicide. BTW it's not true, what some people say, that once you get asleep the T won't wake you up. I definitely was waking up in the night because the T volume had raised, and there was no way for me to get asleep again until it lowered again, all by itself, and every time I did not know how long I would have had to wait, in the middle of the night, before being able to sleep again. Luckily after some time I discovered the untuned radio trick on the internet and this certainly helped at least with sleeping... but not with studying for example, and I was still desperate.

      So in the months after the "trauma" I tried zillions of meds and supplements: I tried everything I could find related to tinnitus (I was almost ready to die in the attempt)... everything that was cited as potentially beneficial in at least one publication in pubmed, in at least one website, or in at least one post in the tinnitus forums and newsgroups. If I couldn't find exactly that substance, I tried to get a hold of at least 1-2 other substances in the same class.

      I even tried auditory retraining CDs, and I even personally wrote software to synthesize various sounds and sequences of sounds (sweeping sounds in particular) to try to provoke residual inhibition or re-train the brain or at least move the T frequency a bit from where it was, but
      nothing really improved the situation.

      I won't list here all things that I tried, but I'll mention a few of the most famous ones that I tried and *didn't work* (not even a bit):

      - - Ginkgo biloba: up to 360mg/day, which is probably above the maximum safe dose.
      - - Vinpocetine: up to the maximum safe dose (which I don't remember right now).
      - - Hydergine: ditto.
      - - Nimodipine: 30mg x 3/day liquid form.
      - - N-acetylcysteine: I remember taking at least 6g/day (2g x 3/day), maybe more.

      These were all tried for significantly long periods, like 3 weeks or more, in approximately this order, and starting soon after the trauma.

      And here are the two most famous remedies I *did not try*:

      - - Systemic cortisone: I did not learn about this within the time frame in which it's deemed effective (as per the standard medical protocols).
      So, late for late, I decided I would have tried it as very last medication, since it could have serious permanent side effects. Luckily I found something that worked before it.

      - - Hyperbaric oxygen therapy: because it apparently there wasn't a facility within the medical jurisdiction where I lived, and outside that one bureaucratic problems seemed to be huge, so I postponed also this one to the end of the list.

      So after having seen some 6 (or was it 8) ENT doctors, after having tried DIY desperately for 9 months in a few cases almost killing myself, after having prayed endlessly (thanks to God!) I found the cure.

      This was really exceptional at the 9th month IMO: everywhere is written that the amount of tinnitus that hasn't been cured within 3 months from the trauma is basically what will stay permanent throughout life. Well... I have good news: it's not true. At least in my case at the 9th month the tinnitus was still almost completely curable.


      - - - The cure - - -

      The cure I explain here is a mix of rheologically active substances, plus a few supplements. I'll explain. Firstly, this is the article that pointed me to the right direction:

      Pilgramm M, Schumann K. - "Need for rheologically active, vasoactive and metabolically active substances in the initial treatment of acute acoustic trauma." - HNO. 1986 Oct;34(10):424-8.
      Current link to abstract is: http://www.ncbi.nlm.nih.gov/pubmed/2432041

      It's amazing how in 1986 these two German scientists already had such a clear idea of what was needed for tinnitus. I feel like science has stepped backwards since then.

      They did a great job, they were much ahead of time, and they were totally right as per my experience. Just one last tiny step was missing: they didn't try to mix two rheologically active substances. This made a great difference for me.

      My method is made of 3 components: Pentoxifylline, Piracetam and Supplements (P+P+S)

      Let's see these one by one:

      The first rheologically active substance of this method is Pentoxifylline. This is taken straight out of Pilgramm-Schumann's paper.

      The dose: the dose of Pentoxifylline you need is the one that makes you significantly drowsy (but don't die for it). This is the technique I used to estimate the dose for myself and it's the same technique I suggest to you. At the beginning about 400mg were enough for me for feeling quite drowsy, but I am quite sensitive to medications so do your own evaluation. 600 is a normal dose; if you are still not drowsy at 600 I believe you need to go further up (but that's at your risk, like everything, sorry) I *don't believe* it will work if you are not drowsy.

      I took it at bedtime so that the drowsiness was not a problem, and actually helped for sleeping. Had I taken it during the day, that level of drowsiness would have been a problem.


      The second rheological substance you need is Piracetam.

      I was using Piracetam 2400mg at bedtime with Pentoxifylline as described, plus 2400mg Piracetam in the morning alone (no pentoxifylline in the morning). The Piracetam was in liquid form but solid form is probably the same (later on I tried solid form for recursions and it worked, see below for recursions). It's not possible to dose Piracetam by the side effects, because it hasn't got side effects, so I'd say your best bet is to try with 2400+2400mg. You could go higher if you want, as it's very difficult to harm yourself with Piracetam: e.g. for Cortical Myoclonus the therapeutic dose of Piracetam is usually 24grams/day; in some publication up to 45 grams per day were used. If you intend to use high doses of Piracetam (at your risk, like everything, sorry) you might want to buy it as a supplement powder instead of medication, for mitigating the costs.

      Please note that Piracetam + Supplements (without Pentoxifylline) weren't working for me, absolutely. I tried these at a high dose for a significant period of time and they really didn't work. So I suggest you don't waste your time and money on these two if you can't also get the Pentoxifylline.
      Pentoxifylline + Supplements instead did work for me a little bit when I tried them without Piracetam, but very slowly compared to full P+P+S.
      You could try to do without Piracetam but be aware that improvements could be so slow that you could build up tolerance to Pentoxifylline before it has done enough benefit. I think you should try to get hold of the three components simultaneously; the only one difficult to find is Pentoxifylline anyway.


      Now regarding the Supplements:

      I was taking the following supplements in 2006, and also later on during recursions (see below for the recursions), and I have the impression, based on some further tests on the recursions, that they were needed. So please add the following to the mix:

      - - multivitamin+mineral wide spectrum supplement like the "Centrum", at 400%RDA dose. Usually that means 4 tablets/day: 2 morning, 2 bedtime; this dose is not a problem for a short period of time like a few weeks or months; in fact our body can bear 400%RDA long term without problems. I have been taking 400%RDA for many years straight.
      - - fats at least 30grams /day (you can use olive oil to reach that amount, it's a good source).
      - - proteins at least 30g /day.

      These didn't work for me *alone* but as I said I suspect they are needed together with P+P. I can't be sure because I have almost always taken these in my life, independently of tinnitus, also in 2006 I was taking them. So you are suggested to take them or the P+P might not work for you. If you report whether it worked for you please also report if you were taking these supplements.


      Warnings and availability of the meds:

      Please consider that Pentoxifylline is a prescription medication, it can be contraindicated for you so you are recommended to go to a doctor for consultation, and read the leaflet. If Pentoxifylline is not available in your country there are some online pharmacies that can sell this to you in a probably legal (depends on your country) way, in particular a famous Indian one.

      Piracetam instead should be very safe. In a few countries it's a medication, but most often it's a supplement and in fact you can find it online as powder or capsule form at a low price. If you intend to take a high dose I would suggest to buy it as a supplement because of the price.


      - - - For how long are the meds needed - - -

      Not long (for me). I saw the first improvements within the first week. At the third week improvements were near 90% of what I could obtain. I kept taking the stuff for about 4 months because I thought that was probably my only chance and I didn't want to stop. However, I'm not sure that was wise because I didn't improve much further after the 3rd week, and in those months I built up some tolerance to pentoxifylline (I need twice the dose now). So I suggest you to keep taking the stuff until you see reasonable improvements, plus a few more weeks, then stop.

      However, if you have had the tinnitus for years, you will probably need much more time than me on the medications. So for you it might be like 1 month to see the first benefits instead of 1 week, or more, or less, or it might not work, who knows... so please do your own experiments and keep us posted

      Clearly if you have had the tinnitus for many years it's also possible that P+P+S won't work for you, but I would be optimist and try it anyway because since I cured myself after 9 months, which was considered already too much, you might as well have worthy benefits even if you have had it for like 20+ years...

      Please note that I'm clearly not affiliated to the producers of pentoxifylline or piracetam. I honestly want tinnitus sufferers to be relieved: I know what it means, as I have been there, and I really was near enough to suicide... with this therapy I have like been given another life, thanks to God!, so it seems now it's my job to tell around.


      - - - How much did I improve and how long did the improvement last - - -

      With this P+P+S cure my tinnitus went from clearly audible at daytime in my study/bed room in a city, to barely (barely!) audible in the same room in nighttime silence. I tried to reproduce such volume difference with a software music player having a numeric dB scale, and it seemed it should be around a 14dB difference. It's dramatic, it's incredible... I have no words... I would never have hoped that much. That is my new baseline.

      The improvement lasted forever, it's not temporary, now 3 years have passed so I can really say that. For this reason I call it a "cure" even though it didn't eradicate exactly 100% of it (but very near to that). Also, in these years tinnitus never recurred "by itself" (unprovoked).

      Now, about the recursions:

      My ears are not like new: I have to pay attention to noisy places or tinnitus might recur. I cannot go to rock concerts: high pitched sounds like guitars and drums are particularly nasty. Jackhammers also are. If I go to a noisy place like a rock concert for hours, some amount of my old tinnitus recurs (but not as stong as in year 2006) and often does not go away by itself with time, so after 2-3 weeks I can't stand it anymore and I repeat P+P+S. Just 2-3 days of P+P+S usually are enough to kick down a recursion, so that it goes back to baseline volume.


      - - - Why am I reporting this only now after 3 years - - -

      I wanted to be sure the technique was working, that it was not a transient benefit lasting a few months, I wanted to check how weak were still my ears (they were still weak) if there were recursions after exposure to loud noises (there were), if the P+P+S kept working reliably on recursions (it did), I wanted to try parts of the P+P+S protocol on the recursions and in particular the Pentoxifylline alone, Piracetam alone or Supplements alone to see if I could simplify the protocol (but no, not really). I also wanted to see if I could find something better (I am working on something but it's not ready yet... maybe in the future I will report) and so on.

      I also had these kind-of-lucky (well not really!) recursions after exposure to noise, that allowed me to re-test the protocol multiple times, so I did that.

      Anyway... after 3 years I said enough, so I am reporting it... primarily because tinnitus newcomers should be able to use the P+P+S before it's too late for them.


      - - - How people can reply to this thread - - -


      If you try this protocol, it would be very important that you post your experience with it. People vary, and also tinnitus can have different causes (traumatic, pharmacological, infection, genetic...) so a single therapy cannot possibly work for everyone. In fact I'd like to try to understand what is the scope of this P+P+S (if it even works for anybody other than me). I don't want to give unrealistically high expectations: tinnitus is a hard problem and I think we would be lucky even if a single treatment helped permanently, dunno, 20% of people? Maybe even at 10% only is worth trying? In any case your experience is important.

      Also please try to be precise in your report, telling if you followed all the protocol exactly or only parts of it (please try to follow it exactly as first attempt), and how much it worked for you. Also tell your story explaining what type of trauma caused your tinnitus, and for how long you have suffered from it.

      Since people can reply to this thread even years apart, I suggest to make what I call a "virtual thread": you can reply to this post by making a post in any newsgroup, in any forum, in any website (*). You just need to insert the following line in your reply:

      Virtual thread id: 81baa44b662764897222313cd26927de

      in this way people can enter the word "81baa44b662764897222313cd26927de" in search engines like Google Groups or normal Google to find all occurrences of this word on the Internet, and hence, all posts of anybody related to this subject. That's what I call a virtual thread. I also will post to the virtual thread if I have updates on this topic.

      (*) preferably post to a place that doesn't delete old posts after a number of years like most forums do. A good place is the Usenet like the alt.support.tinnitus newsgroup itself. Usenet archives should last forever, or so we hope, Google Groups seems to store messages forever.

      That's it. It's the end of this long post. I hope it helps somebody.
       
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    2. Manuel Tissm
      Angry

      Manuel Tissm Member

      Location:
      Portugal
      Tinnitus Since:
      07/2014
      Cause of Tinnitus:
      Acoustic trauma
      I'll try this.
      I have to do something.
      Keep you informed.
       
    3. Manuel Tissm
      Angry

      Manuel Tissm Member

      Location:
      Portugal
      Tinnitus Since:
      07/2014
      Cause of Tinnitus:
      Acoustic trauma
      A week with this treatment and not feel improvement.
      I'll try some more time.
       
    4. Marcini
      Dreaming

      Marcini Member

      Tinnitus Since:
      11/2008
      These things never work. Keep trying though. Maybe one day...
       
    5. skoupidis

      skoupidis Member

      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma or mvc
    6. nogood
      Torn

      nogood Member Benefactor

      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      ototoxicity/infection
      I was prescribed Piracetam combination medication at early stage of my t, used it for a month or so.. not sure if it helped mw with t but did help me with other things.
      it may help to habituation as piracetam is a smart drug.
      but i doubt it will cure the t
       
    7. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      Why not try it yourself?
      The drugs involved seem relatively harmless and results can apparently be obtained pretty quickly.
      Also, the drugs do not require any special prescription here in Greece.
       
    8. James7

      James7 Member

      Tinnitus Since:
      2009
      Notice how in most of these cure posts the person doesn't claim to be really cured but only some degree better, which of course makes it harder to take seriously due to things like the placebo effect.
       
      • Agree Agree x 1
    9. skoupidis

      skoupidis Member

      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma or mvc
      Ok, but why bother writing all tis stuff? If only a placebo brings about that writing, we would have thousands of useless cures like that. And he didn't right a few things like spam, he did tell us all the story...
       
      • Agree Agree x 1
    10. James7

      James7 Member

      Tinnitus Since:
      2009
      We do have thousands of useless cures like that. How do you think the vitamin and herb companies stay in business?

      I have tinnitus as part of visual snow syndrome. On the visual snow forums posts like this are also a recurring theme. The posts with "cure" in the title but in the actual post it's disclosed the person still has their symptoms they've only subjectively decided the symptoms have gotten a percentage better.

      Here is how it happens. A desperate person who wants more than anything for their health problems to go away tries various things hoping and believing they will work (probably they even imagine themselves being cured and writing a post like this before they even begin their treatment), then a post like this serves as kind of a pep talk to themselves to reinforce their own placebo effect.

      Could the above poster actually have gotten better? Certainly, I'm just pointing out it would be easier to take seriously if they were actually "cured" as in *no more tinnitus* rather than still having the tinnitus and making the subjective evaluation that it's improved. Over the past five years I've read people saying all kinds of things have "cured" them (cured defined as helped) , I've read everything from people saying some strange lyme disease treatment, candida treatment, hyperbaric oxygen therapy, gut probiotic therapy, even I read one guy saying coffee enemas cured (helped) him.
       
    11. skoupidis

      skoupidis Member

      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma or mvc
      Ok that does not necessarily mean this precise treatment is doomed. It is just speculation.
       
    12. Shadow of Earth
      Panicky

      Shadow of Earth Member

      Tinnitus Since:
      3/2014
      any luck?
       
    13. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      In fact, "candida treatment" does seem to make a dramatic difference in my tinnitus as measured purely by minimum masking level. Who knows what that means, since "candida" on the internet is mostly pseudoscience, but I'll keep taking the folic acid and b12 as long as I continue to have quiet days...
       
      • Useful Useful x 1
    14. Manuel Tissm
      Angry

      Manuel Tissm Member

      Location:
      Portugal
      Tinnitus Since:
      07/2014
      Cause of Tinnitus:
      Acoustic trauma
      no :-(
       
    15. Matt01

      Matt01 Member

      Tinnitus Since:
      28/11/14
      Am not sure taking x4 the recommended dosage of vitamin tablets is going to be a cure with much solid evidence behind it. Proceed with caution is what I say.
       
    16. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      Also, I doubt anyone will ever get drowsy from Pentoxifylline unless they overdose on the stuff.
      This is what it says on the title "one person's cure".
       
      • Like Like x 1
    17. Claudia

      Claudia Member

      Tinnitus Since:
      8/13
      Cause of Tinnitus:
      I don't know. I'm guessing medication ??
      Wow. Negative minds! What works for 1 May not work for others!
      Let's stay positive and hopefull
       
    18. Mark662
      Transparent

      Mark662 Member Benefactor

      Location:
      United Kingdom
      Tinnitus Since:
      1/1988
      @Claudia and everyone who reads this....I have had tinnitus for over 20 years. I can assure you ladies and gentlemen that nothing I have tried, and I have tried hundreds of things over the years, bar a short interlude when on Xanax, has touched my tinnitus.

      Unless one habituates, it's pretty much a lifelong condition.

      Any recent sufferer is bound to want to try this that and the other treatments. This forum is packed with it. My experience has shown it is an emotionally painful journey, costly and a fruitless quest.

      Am I negative? No, realistic from enormous experience....

      There is always hope of course. That is all we have.
       
    19. Matt01

      Matt01 Member

      Tinnitus Since:
      28/11/14
      I just think this seems a very individual experience. Having said that, some people do improve and get better so it's not hopeless for all.
       
    20. Beth
      Inspired

      Beth Member Benefactor

      Location:
      England
      Tinnitus Since:
      quite a while...
      Have you tried probiotics? If you buy 3 different kinds and take them for a few days each so that your gut is getting a good mix of different types, it will really help your candida. There are many links with candida and tinnitus so I'm sure it will help people if they get the candida under control. May your quiet days increase.
       
    21. Albertus
      Killer

      Albertus Member

      • Like Like x 1
    22. erik
      Breezy

      erik Manager Staff Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012
      Cause of Tinnitus:
      Most likely hearing loss
      You can't buy Piracetam in the USA. I used it back in 2012 not with Pentoxifilline but around the same time I was testing out Picamilon. Didn't do anything for my T or H.
       
    23. Inge
      Cool

      Inge Member

      Location:
      california
      Tinnitus Since:
      11/2014
      Cause of Tinnitus:
      benzodiazepine withdrawal
      Even if all the "cures" dont cure T completely but can change severe T into mild T isnt that worth investigating? Sometimes it feels like the ppl on this forum who have suffered from T for many years if not decades want everyone else to suffer like them. Some ppl get better depending on what the cause of their T is but they probably dont come back to this forum. My T has only gotten less severe in the last six months.
       
    24. Carlos Galiano

      Carlos Galiano Member

      Tinnitus Since:
      12/2014
    25. Champ
      Woot

      Champ Member Benefactor Team Tech

      Location:
      Boston, MA
      Tinnitus Since:
      1/2013
      Cause of Tinnitus:
      Acoustic trauma from headphones
      Sounds too good to be true.

      Also, I couldn't make much sense of what was written... it was very rambling.
       
    26. dboy
      Jaded

      dboy Member Benefactor

      Location:
      UK
      Tinnitus Since:
      1/2007 & 8/2013

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