hydrops not the cause of MM symptoms??

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

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  1. tstjmann

    tstjmann I live my life for my wife and two boys

    Sam - What is your wild theory that might help hydrops?

    Tim M
    Johnstown, PA
  2. jkp_2_98

    jkp_2_98 New Member

    This is what I meant when I said it is a mystery how the inner ear functions. If we really knew what was going on in there and how this was related to balance and vertigo, then we would know why some people have hydrops and no symptoms and others have horrible symptoms but apparently not hydrops. We know that some things affect inner ear function like fluids and gravity, but we don't really know how/why the inner ear becomes diseased (there's 100s of theories). It's not something than can be tested immunologically like cancer as the inner ear has its own immunology that is not well understood. For instance T-cell repair, would help AIDS and cancer patients, but we have no clue if this would help the immunology of the inner ear. I think there are so many variables involved, genetics, immune system variation that literally varies from person to person (thus some things work for some and not others), viruses, trauma, possibly structural problems like TMJ or C1, neurological issues, possibly psychological issues, that I think labeling someone who has hearing loss, tinnitus, and vertigo with "Meniere's" is still relevant and much simpler than spending $$$ and time on umpteen tests to identify causes which, when known, are still nearly impossible to treat. It all still simply boils down to whether a patient goes into remission or becomes refractory. I know I would be very disappointed (and have been) if I kept going to the doctor having test after test after test, given a narrower diagnosis, and then find out that the treatment is still simply what I've been getting all along that is marginally effective: low sodium, vestibular suppressants, surgery, maybe steroids, maybe anit-virals... but the end result is the same, you're either going to go into remission (why? nobody knows) or become refractory (why? nobody knows). Frankly, research into more elegant treatments is going to be very slow as in the grand scheme of things in the medical world Meniere's is a minor thing. It doesn't kill you and most people suffer very little by having it, but it frankly sucks for those of us who have refractory Meniere's and slip through the cracks, end up having shunt surgeries, gentamicin, maybe VNS and drugs, drugs, and more drugs.
  3. gtrvox

    gtrvox our pooch Hugo

    An excellent post, jpk, thanks. I am in complete agreement.

  4. Amethyst

    Amethyst She believed she could, so she did.

    Great post jpk.
  5. Rick

    Rick New Member

    ...sorry to sound stupid but what does "refractory" mean in this context?
  6. Wobbles

    Wobbles Storm (April 15, 1992 - November 17, 2006)

    Rick, refractory means “resistant to treatment”. I first came across this term when I saw it used in the phrase “refractory leukemia”.

  7. Rick

    Rick New Member

    thanks again
  8. Aladdin

    Aladdin Guest

    i suffer so; that is all i know
  9. eedad1

    eedad1 New Member

    SamC, What is your background? I ask this not to attack you. You really seem to know a lot. I think I read in a previous post where you have posted under different names for over the years. I get your posts and want to know more.

    Also, do you have a recommended investigative course/treatment plan for this fictitious disease with unknown causes?
  10. Henrysullivan

    Henrysullivan New Member

    It is difficult for me not to agree with Sam in at least one respect if not more. (I might agree with more if I understood more of what he writes about. That is my failing.) After being diagnosed in spring of '06 with "Meniere's disease," and after curing it by undergoing the chiropractic treatment about which I have written many volumes, one should easily understand why I would come to this place to broadcast my story and the reasons why I believe it worked. I had all the classical symptoms, building tinnitus, building fullness, hearing loss, vertigo, all calm, repeat. The cycle would last from 2-4 weeks. I tried every remedy I could find, including the USANA vitamin regemin. Still it persisted. After seeing definite results with chiropractic, I seemed so simple. Hey, if you have Meniere's, like I did, do this and it will go away. I still believe that. If you have my variety of "Meniere's," if you follow what I say and if your ear has not been so severely damaged that is cannot repair itself, this will cure you. The problem is that some folks who have been diagnosed with "Meniere's" do not have "Meniere's like I did." Either they have something entirely different, or they have had what I had for so long that the ear is either beyond repair, or they have something that takes longer to repair than they have patience or money for. Regardless, there is no question that upper cervical misalignment is one of perhaps several causes of Meniere's like symptoms. The evidence is before us.

    Sam, I may have missed it somewhere but I have not read a coment from you concerning the upper cervical variety of this thing called "Meniere's." You are extremely learned in this field, as learned as anyone I have read from. I would like to know what your research has turned up in this regard.

    George, this is an extremely beneficial thread. Much good info here.


  11. SamC

    SamC Guest

    Hank, First I like your signature. The more you know about your problems, the more your doctors can help. Personal responsibility is the key factor in any healing. In most cases of symptoms labeled Meniere's, I see an attitude of, "I don't care, just make me better." Do you think your doctor gives a rats tail if you don't? Living with vestibular problems requires daily self-responsibility and discipline. I wish it didn't, but what I wish doesn't matter.

    Sam, I may have missed it somewhere but I have not read a coment from you concerning the upper cervical variety of this thing called "Meniere's." You are extremely learned in this field, as learned as anyone I have read from. I would like to know what your research has turned up in this regard.

    Thanks for the compliment and I have learned from doctors and my own experiences as well as from others. What you refer to is inner ear damage from trauma, most common whiplash. Treating the whiplash is most important, but if PLF or Hydrops resulted from the incident, then permanent problems may prevail from the inner ear. If one suffers vestibular problems after a whiplash incident, then it isn't Meniere's as a cause is now known. The ENOUGH group has many members that have PLF and Hydrops from trauma. It is no mystery to them.

    Eed1, My background is in electronics. I by trade school degree am an electronics communication engineer. I worked in electronics design for a few years. This was in the early 1970's. My father was a highly degreed Scientist and worked for White Sands Missile range. My mother was a schoolteacher of 40 years. I was never allowed to be a non-thinker. I had several Uncles that were doctors and scientist. I listened to more debates on every subject known to humankind, than I care to remember. I also studied Classical and Flamenco guitar and taught it for a few years. Still play but not well. I didn't care about medicine as my folks were alternative medicine users and I was tired of supplements and diet and whatever. My interest in medicine of the inner ear came about after several years of testing for MS, undergoing TMJ treatment, and finally my seeing a world famous Neuro-otolgist that changed my life for the better forever. At least I know and understand what is wrong with me. I was interested in his research on microgravity and the inner ear. This lead me to experiment with magnetism and electrical nerve simulation. I bought and studied Dr. Gacek's book. I have written 3 novels with a Hydrops storyline. I call my new genre Super Science, a science that could almost be real. I have researched Van Gogh and read everything I can find on his condition and then formed my theory. I researched the Yucatan asteroid strike of 65 million years ago completely and read every theory I could find. The dinosaur inner ear connection caught my interest. I developed a theory that I think is the most plausible cause of the extension of the dinosaurs. It is in my first book.
    I have studied and visited the Oregon vortex and its relation to the inner ear. I have been taking a weekly medical online seminar for medical diagnosis. It is for medical professionals only, which I am not, but based on my writings and research, they made an exception. I get NO college credit for it and don't care at my age. I enjoy using my mind and trying to resolve a mystery and it has really opened my eyes on how the body works together as a system and how the malfunction of one part can affect the others. There is a lot more, but this gives you an idea that I have NO big sheepskin and I am not any smarter than anyone else is on this site, just a thinker and experimenter that enjoys self-education.

    Quote: Also, do you have a recommended investigative course/treatment plan for this fictitious disease with unknown causes?

    No, not for a fictitious disease …if you have Hydrops I can tell you what regimen the doctors have prescribed. I suggest finding out what problem you have and treating it accordingly. Treating a mysterious disease is like a jury rendering a verdict before they have heard the facts. Some folks try everything, maybe better than doing nothing, but might pose some risk. This is a personal decision.

    Sparrow, VNS stops vertigo from the inner ear. Many doctors believe all vertigo is inner ear related some disagree. The topic was about inner ear disorder so I didn't clarify. Good point as some say MAV is not related to the inner ear. My opinion is it is, but I am not a doctor.

    Quote: And no balance in the inner ears, no problem because you still have balance in the eyes and in the feet. Just don't walk in the dark.


    No problem? Tell that to folks losing their eyesight for overwork due to no inner ear function. A man in our local support group is in danger of this. Yes, eyes and muscles do take over and that is why many of us have so called fibromyalgia (definition: sore muscles and tendons). That is why we have chronic fatigue. This is why the "Brainport" balance machine shows promise in restoring balance. Many with double VNS end up on walkers. Have you ever wondered why your eyes burn like the devil in the evening? They are overworked. I respectfully take issue MS PIGGY; it is a problem big problem. For some more than others, but it is an issue.

    Tim, I had rather not say as it is not something we can do for ourselves. You can get an idea of it by reading my books. I propose several cures, none of which has ever happen or I would be first in line. I would even shove down old women to get to it. I am just kidding on the shoving down old women….

    Jkp, Read Dr. Gacek's book, and he will explain why some go into remission and some don't. I explained why the discrepancy in diagnosis and in autopsy previously. Meniere's symptoms don't always come from Hydrops … no use whipping the poor old pony much longer. By definition if one is "diagnosed" with "Meniere's disease" and no Hydrops is found at autopsy, then they were "misdiagnosed" The definition of MD is ELH without a cause. If one disagrees then they should argue with the ruling ENT board. My idea is that Meniere's disease doesn't exist and never has, but again who am I? Just another self-educated opinion among many….

    Thanks to all of you for considering this issue that is controversy based on definition and inconsistency in diagnosis. My third novel suggests a resolution to this controversy, but it is just a novel.
  12. DKitchen

    DKitchen New Member

    I think the bottom line is that Meniere's disease is not a disease, it's an idiopathic syndrome. What cause's one persons "Meniere's symptoms" is not necessarily what causes another persons "Meniere's symptoms". This explains why one treatment works so well for one person (ie Nucca, antivirals etc) but has absolutely no effect on another's. I say, if it helps, do it.
  13. DKitchen

    DKitchen New Member

    I have written 3 novels with a Hydrops storyline.

    Can you give us info on your writings?
    They sound like they would make for interesting reading.
  14. Linda1002

    Linda1002 New Member

  15. Wobbles

    Wobbles Storm (April 15, 1992 - November 17, 2006)

    I just read an interesting article in the NY Times about glaucoma. Glaucoma is an eye disease that is characterized by excessive fluid buildup in the eye’s interior. The extra fluid leads to pressure buildup that, in turn, damages the retina and thereby leads to blindness. This is analogous to the situation of hydrops in the inner ear with its subsequent damage to the cilia of the vestibular and cochlear organs.

    The article reports that researchers have recently discovered that one type of glaucoma, called exfoliative glaucoma, is caused 99% of the time by two variants on a single gene, known as the lysyl oxidase-like 1 gene, or LOXL1. (Just a parenthetical note on this: the researchers came from Iceland and Sweden and used a technique called “whole genome association”. This recently developed technique is successfully being used to uncover many gene-disease associations, not just eye diseases. This is very good news because researchers are finally being able to uncover in a systematic manner the role of specific genes in causing particular diseases, even diseases of old age. Very exciting stuff.)

    The article also says that

    "Exfoliative glaucoma can occur when fibers of connective tissue break off into the fluid-filled front chamber of the eye and block the drainage channels through which the fluid circulates, resulting in damage to the optic nerve. The protein made by the LOXL1 gene is produced in many tissues of the body, including the eye, and helps build the network of fibers and elastin that weaves the body’s tissues together."

    The effect can take many years to develop. Hence, glaucoma becomes a disease of the aged, despite being present at birth.

    I wonder if it is possible that this same gene plays a role in some forms of endolymphatic hydrops. After all, each and every cell of the human body has the same genetic makeup. Most of the times particular genes do not express themselves but it is not hard to believe that both the eye and ear, both being sensory organs, would have similarities in connective tissue. It would be a relatively simple hypothesis for researchers to test.

    Sorry for all the techno talk, but this thread seemed the best place to put my thoughts down.

  16. gtrvox

    gtrvox our pooch Hugo

    My daughter Hanna worked for DeCode Genetics - http://www.decode.com - the company in Reykjavik, Iceland which is undertaking the above mentioned research :)

  17. eedad1

    eedad1 New Member

    Some Drs refer to Hydrops as glaucoma of the ear. It isn't actually, but it is a helpful analogy if you understand what glaucoma is - which most don't. Dr. Paparella use this as his standard explanation of Meniere's before explaining that his ESE surgery relieves this.
  18. gtrvox

    gtrvox our pooch Hugo

    Some doctors actually prescribe glaucoma medication for hydrops:

    The first line of diuretics are those containing hydrochlorothiazide, and the most commonly prescribed is Dyazide(R). The next line of diuretics are the carbonic anhydrase inhibitors Diamox(R) and Neptazane. These are drugs that are commonly used for glaucoma of the eye, and may be effective in some cases of Ménière's disease. These drugs have some side effects, including tingling of the fingers and toes and changes in electrolyte balance of the blood. There are also some other rare complications of this class of drugs.


  19. jkp_2_98

    jkp_2_98 New Member

    Would you have a website or other place where I learn more and/or buy a copy of Dr. Gacek's book? Also your books, they sound like fun!

  20. Linda1002

    Linda1002 New Member

    For Sam's books:


    And I found this:


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