Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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  1. FGANDRADE

    FGANDRADE

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    I was diagnosed b12 deficient on february of 2011. The major and serious symptoms started on june 2010. I had some minor symptoms before that usually came and went away spontaneously. Started the b12 protocol and improved a lot. After 18 months I'm very close to be cured. Think more 6 months will be enough to go back to sports routine. Had many symptoms. But one appeared four to five months after starting the treatment, tinnitus. First it came and went away almost instantly. It started like a deafness sensation them the buzzing and everything was ok again, didn't took more than 2 or 3 seconds. This happened several times before One day it happened again and became permanent with a dizzyness that did last for a month and a half. No dizzyness today but the buzzing is still present and permanent annoying me around the clock. Anybody here had the same experience? Will it go away for good in the future?
     
  2. arx

    arx Senior Member

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    Hi,

    For me, it was a symptom of B12 deficiency. Buzzing and ringing of the ears was there continuously for 4 months before starting the protocol. Dizziness also used to happen sometimes. After starting the protocol, the buzzing and ringing intensified for a month, as symptoms intensify before healing. After two months,it became much better. I do experience it, but the intensity and duration has decreased considerably.I experience it when I suddenly change my posture. I have also experienced tinnitus as a result of low potassium, and it became much better when potassium was supplemented. Some other times I have experienced vertigo and dizziness, which also happened because of low potassium. I nearly fainted once after starting mb12 injections, as I didn't know then that potassium was also needed.
    You might want to consider potassium. Also,maybe healing is taking place in your inner ear, and causing all these symptoms?(just a thought..)

    Also,great to know that you're almost cured. What all vitamins & supplements did you take? Any suggestions for those still in the dark,like me?
     
  3. FGANDRADE

    FGANDRADE

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    Arx, I think the tinnitus is related to the healing process because I'm hearing much better, but these B12 issues always let us anxious and I feel the need to check other people experiences. In the beginning I used Fredd's protocol and now I just use Mb12; Adb12 and folate. one pill of the b12s every two weeks and one pill of folate every week. My body is very saturated with them and I don't think I need more than this now. Healing takes a lot of time and is followed by a lot of pain. Be patient and you will be ok.
     
  4. arx

    arx Senior Member

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    That's true. I also check with other people's experiences and get a lot of support and suggestions on these forums. I've found MANY people facing the same symptoms. I'm three and a half months in on Freddd's protocol. Added adb12 15 days back and carnitine a week back. I guess I have a very long way to go. Healing does take a lot of time, but for me the startup is quite intense. I'm titrating the carnitine very carefully. Slow and steady..and yes, A LOT of patience!
     
  5. greenshots

    greenshots Senior Member

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    yes, I had ringing and had to cut back a bit on my B-12 but then went back up so gradually it didn't come up again.
     
  6. xrayspex

    xrayspex Senior Member

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    u.s.a.
    this is related to tinnitus but am not on methylation protocol per se
    but just had disturbing incident with tinnitus
    a few years ago I noticed if I take more benadryl than usual get a mild ringing in ears next morning but always went away and wasnt too bad in retrospect
    yesterday I accidentally took almost a whole benaryl (25mg, it was probly 20 mg) when i meant to grab an ibuprofen in a dark theatre, i have mcs and usually only take 1-5mg of benadryl at bedtime when i use it. that was gross because ruined my nite after that from drowsiness, but the worst part was waking up at 4am with loud ringing in one ear, never had it to that level before, I can see why some people feel like it ruins their life. It really scared me becaue it was about 12 hours then since i had taken it, I stayed up for a couple hours and researched it and then was able to go back to sleep eentually it subsided a bit and had a fan on and watched hulu on puter for awhile to have a competing noise.

    thankfully its at a lower level now but i can still hear it in that ear and i am not sure if when i go to bed again tonite if it will seem worse when its quieter. I hope to never make that mistake again. I guess its rare to have benadryl do that but it can and probly esp since I am mcs. i want to still use benadryl sometimes cus its one of meds i can tolerate for sleep and mcs stuff ironically.........just goes to show again how important dose is, the right amount is medicinal and the wrong amount poison. I hope to god its not permanent, but i would say that symptom when its severe is worse than the pain and malaise etc i have had with cfs, could drive one nuts. maybe i would get used to it sigh i guess i used to think that not being able to work out was the worst thing that could happen but tinnitus when its loud is nothing to fool with ugh

    incidentally i had a high b12 when my doc tested me last year, abnormally high out of norm range
    i was exposed to loud music a week ago and the movie i was at was loud so maybe those were preciptating factors that added into vulnerability. but sure it was the benadryl because it has done it to me before but never that bad. i am so tickd i made that mistake, so pointless. really hate to squander things that when taken in right amount are helpful, dangerous mistake. Hate to imagine the mistakes i could make in 10-20 years if dont figure out a way to get more cautious and with it sigh. i dont take a lot of supps or meds cus of chem sensitivity,,.
     
  7. erist

    erist

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    I have tinnitus that I believe is related to long term klonopin use (tolerance withdrawal) but could be ME related as well. I have noticed that it does seem to get better a) when I am not under stress [or at least gets worse with stress] and b) when I am doing b12 injections.

    Serum b12 levels may not always translate into functional b12 levels. Even if they are "high" the b12 your body can actually use may be low.
     
    cph13 and xrayspex like this.
  8. arx

    arx Senior Member

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    Yes. The reason active forms are taken is because of a suspected functional b12 (mb12,adb12) and cofactor deficiencies.
     
  9. xrayspex

    xrayspex Senior Member

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    how do you figure out if your active form is ok and would one's doctor believe that if blood test was too high, not that i need them to believe stuff but it helps.
    however I felt rotten when tried injections of preserv free b12, poisoned, and dont tend to feel good when i take it in other forms either no b vits feel good for me
    I might be able to get away with a couple drops now and then of b12 liquid form
    I still have the increased tinnitus altho its not as bad as it was the other morning
    this sucks one day of benadryl normal dose and this happens, hope it can subside more, its sort of the sound if went to loud rock concert, mild ringing in one ear and i didnt notice it during day yesterday but at bedtime last nite and now in morning again can hear it
     
  10. arx

    arx Senior Member

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    I'm following Freddd's protocol.He has recommended methyl-b12 and adenosyl-b12,. Rich has recommended hydroxy-b12. Trial and error,watching startup symptoms,subsequent healing,watching signs of healing as described by Freddd are the things I am doing. I don't really care about the b12 serum level. While on the protocol, it WILL be too high. The serum level is useless to me.
    I got a lot worse when I started the mb12 injections. The getting worse was actually a positive sign, indicating that I was deficient in mb12.Also, potassium,metafolin and other co-factors had to be added. The tinnitus was very intense the first month, then it started to get better.
     
  11. roxie60

    roxie60 Senior Member

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    Tinnitus started in 2006, it would start when I was taking different medications, once I stopped taking the meds it would usually stop within 30-45 days. Then in JAn 2009 I was asked by my Dr to try a hormone med (a progesterone if I recall) and I stopped it within 2-3 weeks because the tinnitus started again (finally started recognizing the ringing/hiss was an indication my body was not handling the new med). Sadly after stopping the med in JAN 2009 I have had 24x7 hiss/ringing that tortures me constantly. So for nearly 4 yrs it has been constant. Sometimes it is less noisy but other times it is so dsstracting, difficult to concentrate. Somedays just want to cry cause so tired of the constant hiss. Going to ENT in a week to try one more time to see if there is a remedy.
     
  12. xrayspex

    xrayspex Senior Member

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    I saw my doc today about tinnitus and since its not as bad as it was at first and might be benadryl related he wanted me to wait and see if gets better before does anything more. he did tell me there is now new neuroplasticity research where they can do exercises with your hearing to work with the problem frequency thats cutting out in yr hearing to improve it or something. I am going to advocate for that if doesnt get better. something to hope on for it.
     
  13. xrayspex

    xrayspex Senior Member

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    doc also said dha in fish oil helps hearing i will look into that, fish oil makes me feel crappy but he said could get isolate dha i havent done that before, hope it doesnt feel like crap to me like all other fish oils do
     
  14. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I have had tinnitus for years and cannot tolerate fish oil or even krill oil. If you find a product that works for you, please let me know.

    I would also like to know more about that neuroplasticity based stuff, if/when you learn more.
     
  15. Wayne

    Wayne Senior Member

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    The man in the following video started experiencing tinnitus after an injury. He was able to get relief using a therapy called "nasal specific".

    Promising Treatment for Tinnitus ...
     

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