Going to Germany- Orthokine

Discussion in 'Your Living Room' started by gfsound, Jan 30, 2014.

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  1. bubbagump

    bubbagump New Member

    I am just starting to think about how the eustachian tube correlates to meniere's, I am 3 months into Meniere's. 2 weeks ago when I took my first flight after diagnosis, I noticed my bad ear did not pop properly at all compared to before or with my good ear. I realized it has been blocked the entire time! Soon after I got another vertigo attack. Before my flight I was vertigo-free for 6 weeks.

    Anyway, eustachian blockage is not supposed to trigger vertigo, just light dizziness, so I obviously don't think fixing eustachian is going on cure meniere's....however the tremendous pressure it causes in the middle ear cannot be good for the symptoms of the inner ear. Fixing it might help the symptoms.

    Of course this being america I can't get to my neurotologist for like 4 weeks, emailed her, got a reply said to try nasal steroid sprays, oral decongestants, and possibly will do a tube in the eardrum. I assume an ENT would probably say the same, so probably won't waste my time with an ENT.
     
  2. msprygada

    msprygada New Member

    When you say "attack" what do you mean? When I hear that I think of vertigo. The fullness, distortion, hearing loss, and pressure I could live with but it is the vertigo that I don't think I would be able to deal with ( no vertigo.....yet!)
     
  3. gfsound

    gfsound New Member

    First of all, you are very fortunate to not have had any vertigo- I hope you remain this way. Now, before I answer your question, I'd like to add the following caveats: I don't know how far along you are, what your diagnosis has been, how your symptoms present, what you're doing to mitigate them, etc. Everyone is so different with this damn thing it almost seems silly to compare symptoms. That being said...

    I can only speak for myself when I say that the "fullness, distortion, hearing loss, and pressure" that you reference I used to be able to "deal with", which means tolerate and still function semi-normally. However, after some time the symptoms have become far more intense, and the brain fog that everyone speaks off makes it all but impossible for me to focus on even the most basic tasks (and I mean basic). There is also fatigue, dizziness, and just a feeling of being way off. It's hard to describe, I suppose, but for me the "attacks" can be two week long episodes of just barely functioning, sleeping poorly due to loud tinnitus and needing valium/zanax just to get some rest, and tremendous hyperacusis so that even being in a room with any noise is painful.

    Anyway, that's what I mean by an attack. Also, I could just be a wimp and be way more sensitive to these particular symptoms. I'm positive that there are many on this forum who live through much worse than what I have going on.
     
  4. Intrepid

    Intrepid New Member

    I don't think you're being over sensitive to those symptoms. It's all relative, really. Can't compare suffering when all we fully know is our own.

    I agree with vertigo being the worst of all the symptoms.
     
  5. msprygada

    msprygada New Member

    Yes, I do consider my not having vertigo very, very fortunate and that it is a good thing because the second to last thing I hate most in this world is throwing up and the thing I hate the most in this world is spinning around in merry-go-rounds. I don’t know how I will handle that..I really don’t. Because I really don’t need this and there is nothing in this world that is worth putting up with this shit for..there really isn’t.

    I would not say you are a wimp. Since we cannot actually experience what others feel like you could possibly have really bad symptoms and yet you are handing them quite well.

    I was diagnosed with MD in ’06 but only had sound distortion and low frequency hearing loss and at the time it did not bother me so I never looked into it and my ENT at the time did not make it seem like it was a big deal so I moved on with life. Last November I woke up with stuffed ears. After a week it did not go away so I went to the ENT (old one retired so had to find a new one) and he said, you have MD, eat a low sodium diet and learn to live with it (sound familiar?). A week later I stared to get tinnitus and it really was not that bad but since I have basically have had no health issues my entire 52 years, this sucked (now look who is the wimp?). I went back and he just repeated the same thing so I came hear and found a new ENT who at least said “Let try a diuretic”. I tried them but felt like crap on them for two weeks before I quit taking them. I found info on hear about AV’s and the next appointment with the ENT I showed him Dr. Gaceks paper an he prescribed Valtrex. He prescribed 1000 mg pills @ 3/day for 21 days. 2/day for 21 days. And 1/day for 21 days. Next Tuesday I will be started the 1/day so I have been on AV’s for nearly 6 weeks and I cannot really say they have done anything. And actually my MD symptoms varied as we all do but the third day of taking AV’s my bad ear went to a solid hearing loss, noise distortion, hyperacusis, and pretty much solid tinnitus. I was getting a day or two in there where I thought it was getting better where the hearing would clear up but it would only last a day or two and then back to square one. After finishing the 1/day pills for 21 days, I don’t see the ENT for a month so I guess I will see what happens to me in that month. If I get worse, then I guess the AV’s were working and I just need to be on them longer as I have read where some people had to be on them for a few months before they worked but then I wonder if their MD had just by coincidence gone into remission.

    Thanks for your reply and I wish you good luck on your battle with this damn disease.
     
  6. bubbagump

    bubbagump New Member

    have you tried ear tubes and/or Meniett device?
     
  7. gfsound

    gfsound New Member

    Negative.
     
  8. KennedyLane

    KennedyLane New Member

    GF, While reading this thread, I was struck with the same thought. Perhaps those who are finding relief with this treatment have an etiology based on trauma/inflammation. While my symptoms aren't as bad as many on this board, they impact my life greatly and started after injuring my neck doing sit-ups. I gave myself a whiplash-like condition. I have found some degree of relief with injections to the facet joints in the upper part of my neck and a block of the 3rd occipital nerve. Unfortunately, the steroid effect has not been permanent, and I've had to repeat the injections multiple times. I am anxious to read more about this treatment and very much hope this German doctor can do further research. Thank you so much for your updates.

    Someone else mentioned a possible link between the eustachian tubes and MM. I, personally, believe there is a connection in some people with Meniere's-like symptoms. I've linked the article before, but there is a publication written by an Australian ENT named Berkhard Franz in which he speculates that damage to the area in the upper neck or TM joint causes a chain reaction of inflammatory events causing a sub-clinical (can't detect with ordinary ENT tests) eustachian tube dysfunction that alters the pressure balance between the middle and inner ears. To me, it's just too much of a coincidence that there are a chunk of folks with MM who also have ear popping, crackling and other evidence of eustachian issues.
     
  9. recentlydizzy

    recentlydizzy New Member

    You know my first visit to an ENT I went in there thinking my eustachian tube was messing up because of the aural fullness. My ENT did a surgery on my sinuses and had a very up close look at the tubes and said they were normal.
     
  10. gfsound

    gfsound New Member

    OK, I sent my one month follow up to the Dr., explaining the brutal 2 week episode that I had, and that pretty much everything is par for the course- up, down, up, down. His response was (in part) the following:

    "As I told you we saw patients with a 30% effect directly after the treatment but with nearly 90 % positive effect 3 months later."

    So now I will update him in 2 months and 3 months. However, this morning the hearing loss is back again, the pressure is starting to build, and the fog is rolling in- so I'm not sure I'm going to have the mettle to stick it out for 2 more months just waiting. I am seriously considering starting SS, which as I've said would pretty much invalidate (or at least greatly skew) this anecdotal experiment. I will let everyone know if I choose to do down that route.
     
  11. CarolineJ.

    CarolineJ. New Member

    Thanks for the update Geoff ... sorry things are still not improving yet. :(

    Not sure how long it takes to get the blood work done to know if you are a candidate for SS's protocol or how long it takes to get the vaccine so I am thinking if it takes a month or 2 to get ready to start the protocol it will coincide with the length of time needed to evaluate the Orthokine treatment.
     
  12. Vicki615

    Vicki615 New Member

    Thanks so much for your updates, I am sorry you are not feeling better, but it is hopeful the Dr says 90% feel better at the 3 month mark. That's a nice percentage.
    Which ever route you take I wish you success in relieving your symptoms.
     
  13. yanksgirl

    yanksgirl New Member

    CAN JUST SAY I ADMIRE YOUR STRENGTH AND DETERMINATION TO KEEP TRYING!
    Do hope you see improvement soon and will not have to go the s.s. route.
    Although, if this proves to have failed, wish you success with s.s
    We r all pulling for you!:)
     
  14. gfsound

    gfsound New Member

    So everyone knows by now that the Docs said I need to wait three months to see results. Well, it has been almost two months, and while I'm thankful that I haven't had a vertigo attack since the procedure, I still have continuing hearing loss and tinnitus, which keeps getting worse. For me, this is still unacceptable. Maybe I'm being unreasonable, but I don't see how something is just going to "click" by month three and all my symptoms are going to just suddenly go away.

    Therefore, I have already signed up for the Stephen Spring protocol. I haven’t started yet, but the minute I take my first pill I’ll let everyone know, as the results of this little Orthokine experiment will no longer be accurate. I’m sorry to say that it didn’t work for me as it did for Dana, but someone on the forum had to try! All said and done, I'm still glad I went and did it, or else I would be forever wondering "what if??"
     
  15. msprygada

    msprygada New Member

    sorry to hear that the orthokine treatment did not work for you but good luck with the SS treatment and keep us informed.
     
  16. gfsound

    gfsound New Member

    I definitely will. I plan on treating it exactly has I have this Orthokine experiment- just an objective reporting of my improvement (or lack thereof). Hopefully everyone that is trying the SS treatment will do the same, so the entire forum community has more data (albeit anecdotal) to go off of.
     
  17. msprygada

    msprygada New Member

    well it looks like you have tried everything so you are keeping a forward thinking attitude about it. Looks like the hearing tests were a proof positive test for Katniss, hard to "placebo" those.

    Good luck.
     
  18. gfsound

    gfsound New Member

    No, and her objective results, coupled with her and Phil's detailed reporting is exactly why I'm giving this a try. That evidence is pretty incontrovertible, unless you think it's all just coincidence, which I do not.
     
  19. CarolineJ.

    CarolineJ. New Member

    Hey Geoff ... sorry to hear that it's still not the results that you were hoping for. But YAY! for no vertigo!

    Wishing you all the best on your new treatment choice. Hoping you get the same results that the other posters are reporting. I look forward to hearing your updates.

    As far as the Orthokine treatment goes, it is far better to have tried with less than thrilling results than to live with those what-ifs! Keep moving forward. And thanks for being a trail blazer along with the others for these unconventional treatments. :)
     
  20. kraunque

    kraunque New Member

    Geoff: I hope you get relief from this treatment option; I know this has been a long process for you. Thanks for all the support and encouragement and information.
     

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