hydrops not the cause of MM symptoms??

Discussion in 'Your Living Room' started by gtrvox, Aug 6, 2007.

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  1. sparrow

    sparrow Guest

    Thanks Sam for your response :D

    By the way Joe ~ There is a doctor in California who is prescribing the same glacoma medication to his "Menieres" patients. He says he has had good success with it. You can reach this doctor via his business internet address,if anyone has any questions as to the name of the med. He will come to the telephone, just ask one of the customer service reps at this website to give you his telephone number. I learned about him due to using his nasal irrigation system. His name is Dr. Grossan.


    I am going to call him to see if my primary will start me on this medication.

    Sparrow :D
  2. AshleysMom

    AshleysMom New Member

    I have glaucoma and I can tell you oral drugs (the ones mentioned above) are not commonly given with glaucoma diagnosis. They have many serious side effects to them versus taking drops which have very minimal side effects if you occlude after taking the drops. For menieres ,on short term, I could see using them but with glaucoma if taken at a young age and expected to take them through your whole life you run a very serious risk of developing problems with them. Prostaglandins and alpha agonists are very readily given. Only elderly who have a hard time taking drops or those who are not willing to do surgery for glaucoma if needed take these.
  3. sparrow

    sparrow Guest

    You know, when I first found out this information from this ENT in California that sells me his nasal irrigator, I took it to my primary who refused to prescribe it to me stating the same thing, the drugs can cause serious sides. But this ENT is treating his Menieres patients and is having very good success.

    I might call him again and see how things are progressing for him. He seemed willing to talk over the telephone to a complete stranger, which impressed me, maybe he will talk to me again.

    Sparrow :D
  4. AshleysMom

    AshleysMom New Member

    Read up on it thoroughly and the side effects. If it were me I would look at short term instead of long term at first. My drops are bad enough with there side effects (can make me go blind by a detached retina) that I would be very cautious about the pills although I dont know how much you are struggling with this.

    Good Luck with your decision, I wish you the best :)
  5. sparrow

    sparrow Guest

    Thank you, wish tomorrow as a weekday so I could call him. Next week and will let you know the name of the drugs he is using.

    Sparrow :D
  6. Henrysullivan

    Henrysullivan New Member

    Sam, I have missed something in all of this. Can you capsule summary what you believe is the cause of Hydrops?

    You may have explained this earlier, but within the context of another subject. So would you do me the favor and just explain that one point for me?

    Thanks very much,

  7. sparrow

    sparrow Guest

    Linda ~ Thanks for the link that shows the book "Viral Neuropathies in the Temporal Bone" The excerpts are excellent and informative. Will be taking this page in my next visit with my neurotologist.

    Sam ~ My eeg shows abnormalities in my temporal areas (this is electrical in nature), I have noted inflammation as shown in blood tests - yet doctors aren't able to detect where, I have Epstein Bar Virus (as you know) which is showing high levels as in activation and which is in the Herpes family. With that said, would you be able to expand upon how the Temporal Bone comes into play with a virus and what is the reference about the bone or the temporal area surrounding the bone all about. Would be interested in your opinion here. Feeling lost in this translation and hoping I am making myself clear. Your input is considered very valued, by-the-way :D

    Sparrow :D
  8. SamC

    SamC Guest

    Answers I hope to all questions ... apologize if I missed someone...

    Temporal bone houses the inner ear. The top jawbone is the T in TMJ for Temporal. This is why TMJ may be confused with other inner ear problems. If you donate your temporal bone, you donate your inner ear for study after death. The whole structure is of importance for proper study.

    Causes of Hydrops: Trauma (whiplash, blows to head, spousal abuse, child abuse, etc), Virus, MS, Genetic such as Waardenburgs syndrome, many other diseases, autoimmune failure, chemical contamination, high magnetic fields, extended lack of gravity, etc. ... possible causes or contributing factors: Diabetes, hormones, malnutrition, vitamin B deficiency, etc.

    The 2 most common causes are trauma and virus from my surveys.

    My books as well as Dr. Gaceks are available from Amazon.com. Barnes and Noble, and several other dealers. Email me from this webpage if you want an autographed copies. I have a few, as these small quanities are costing me about the same as you can get them from amazon.com. I can't afford large quanities, so autographed are limited. Dr. Gaceks is very spendy about $100 and worth more....

    http://champie.net for my books

    P.S. My intention in posting isn't to sell books, I mentioned this as a credential, when aked, as it is one of the few I have. LOL! Sam
  9. sparrow

    sparrow Guest

    Thanks Sam ~ So Temporal Bone has no relation to the Temporal area of the Brain, but is in the same proximity. Just trying to tie in the abnormalities in the Temporal region of my Brain to the Temporal Bone. I do have TMJ issues too.

    Sorry to sound soo dumb here.

    Sparrow :D
  10. wingey1

    wingey1 New Member

    So...........................It is quite likely that the cause of hydrops, in your experience and studies is that of either whiplash or virus? I believe the chiropractic treatment may well help the whiplash cases? So, for the virus issues, which I have long thought could be my problems, what should be the course of action?
    Many thanks
  11. sparrow

    sparrow Guest

    I just did some research at The New England Journal of Medicine and they had an excerpt there that Avylicor (spell?) shows no effect on managing Epstein Bar Virus but is successful with the other strains of the Herpes virus. Both my primary and a Infectious Disease doc won't prescribe me this med and so I will continue to take Lysine for the time being.

    Sparrow :D
  12. gtrvox

    gtrvox our pooch Hugo

    I've encountered a wall of denial from my neurotologist when asking about the possible efficacy of an antiviral for my problem (defined by him as cochlear hydrops) My family physician is a personal friend, though, and will prescribe pretty much anything I ask her if I can support it by some evidence. Perhaps Sam and/or Larry could supply a link to information re: antiviral as indicated/helpful for hydrops

  13. sparrow

    sparrow Guest

    Thank you George for putting this out there for me !!!

    Sparrow :D
  14. Linda1002

    Linda1002 New Member

    Several have been helped with Acyclovir:






    It is thought that these cases are virus based.
  15. SamC

    SamC Guest

    Sparrow, The TMJ link may indicate hormone issues. Also some times TMJ is confused with Trigeminal Neuralgia. Well, from gathering a lot of various information, scientist are split about 50/50 on whether acyclovir helps BEV. In many cases it is a B12 deficiency. This was found to be true in some Native American Indian trides. I will see if I can dig up the info on that sometime. Many links disappear and if I didn't print it, then it is lost. Probably other sources just will take some digging. Lysine can't hurt you that I know of except the expense. I eat a lot of apple and watermelon seeds and other source of natural lysine. I am not a supplement taker anymore except fish oil. The BEV may go into recession but the results of it still plague a person. It is a real confusing study as research is conflicting. I say try everything and make your own decision what does you best. You don't sound dumb ... closer than you think to understanding. Look this up online, there is some nice primers on the t bone...

    George, I can supply testimonials, but these are not from controlled studies. Dr. Gacek's book convinced my PCP and others. It is a collection of many studies, not just their opinion or theory. Awesome photos. I had to study medical terminology to read it, but worth my time. No more arguing with doctors.

    Lynne, For virus acyclovir at theraputic dose for 6 weeks, then at least one year on maintenance dose. Whiplash needs a vestibular therapist that understands the connection. Some Chriopractors help, many do more damage. Gentleness is the key here, not jerking or popping. Head positions important, etc.
  16. gtrvox

    gtrvox our pooch Hugo

    I'll definitely look up Dr Gacek's book
    Testimonials would be helpful - do you have them digitized? Or could you scan one or two and post them? PM me for my email address. Thanks

  17. gtrvox

    gtrvox our pooch Hugo

    Thanks much, Linda! Very helpful and appreciated!

  18. sparrow

    sparrow Guest

    Thank you Linda for the links. I will print them out and take them with me to my primary.

    Sam ~ Will start looking for natural Lysine sources, thanks !!

    Sparrow :D
  19. gtrvox

    gtrvox our pooch Hugo

    Just found this:


    Famciclovir may suppress the fluctuation of hearing in Meniere's disease, but had a minimal effect on vertigo or dizziness symptoms in this study. The probable multifactorial etiology in Meniere's disease requires that further studies be conducted to determine the effects of antiviral medications

  20. sparrow

    sparrow Guest

    George ~ Thanks a mil !!! *waving* Thanks for taking the time to find this for me !!! (((hugs)))

    Just printed this out and adding it to my pile that I will present to my neurotologist or primary, if he (neurotologist) just waves his hand in the air at me again. I will keep trying docs to see who will be willing to start me on a trial of this.

    Been down the last three days with constant dizziness and unsteadiness. Either it's the tail end of my 9 day migraine or my ear is acting up again or a recent tramatic experience.

    Sparrow :D

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