Cures I have tried- new member

Discussion in 'Your Living Room' started by gfsound, Jul 8, 2013.

ATTN: Our forums have moved here! You can still read these forums but if you'd like to participate, mosey on over to the new location.

  1. gfsound

    gfsound New Member

    Doing nothing may very well be the answer, but much easier said than done. While I do not underestimate the power of the mind, doing nothing in the face of worsening symptoms seems all but impossible (ironically, because of the power of the mind).

    "Anything that heightens anxiety creates illness and unhappiness." Missing work and getting little to no sleep because of the incessant noises in my ears, the hearing loss, dizziness, etc all definitely heighten anxiety. So I guess I'm officially in a vicious circle.

    I was reading Red Barchetta's thread- "Stop this ringing already! :(" That thread alone makes me disinclined to just wait. Man the empathy I have for everyone suffering from this...

    Anyway, I understand where you both (wonderin/sirlanc) are coming from, but I'd like to think you can have it both ways. You can accept, give in, surrender to how you are, right now, and also "focus on health, healing and happiness" by taking proactive steps to mitigate your symptoms (be it with JOH, anti-virals, etc).

    Then again, maybe I'm wrong! It's clear that I certainly have not found the answer, so I truly value all the input, thoughts, and suggestions from those with far more experience than me- especially since many of you have found relief.
     
  2. wonderin

    wonderin New Member

    Oh my gfsound, your approach to healing sounds so much like mine!
    KNOW THEYSELF. If you can't wait and let go of stress, then there is always my way... ;D

    $30000 must be the magical mark because that's what I spent before I shifted my whole way of thinking around. After I had exhausted all the main ideas, I let go of that whole plan of attack. Instead, I worked out what each therapy aimed to do and did it myself. Where they would treat me for, say, half an hour, once a week, I would do it whenever I liked - for free.

    First, I looked at what each therapy was trying to achieve.

    For example, NUCCA. They were trying to 'get my head on straight', so I worked out how to do that myself. It was so simple once I realised why my axis was tilted in the first place.

    Chiros, masseurs and physios: They are all about aligning the spine. There is a simple, free way to do that.

    Supplements and herbs. If something is lacking in the diet, enrich the diet. If you suspect allergens, eliminate them to see.

    Energy work, acupuncture and healing. When all tension is removed from the body, THERE ARE NO BLOCKS IN ENERGY. The answer? Remove the tension.

    Hypnosis. Recognise your old, had habits of thinking and accept them... and by doing that, you don't hold onto them. Be truthful with yourself.

    Tapping. I found it's a quick fix that doesn't last. Do the above and there is no need for it.

    Fillings... well, you've done that! Great dedication!!

    Gym: If you try to strengthen when your body is out of alignment, you will simply put some parts of the body under increased stress. Release old tension first.

    etc. etc. In other words, WORK the problem. Tackle it like you listen for imperfections in music, then fine tune.

    Create a plan and then apply it based on all you have discovered (and believe me, it is PLENTY). Once you know that you are doing all there is to do - systematically - then the stress will ease. It's thinking you are missing something that does your head in.

    I love your tenancity gs!!

    Whatever you do, I love your attitude!
     
  3. June-

    June- New Member

    I think this is the golden mean:

    "I'd like to think you can have it both ways. You can accept, give in, surrender to how you are, right now, and also "focus on health, healing and happiness" by taking proactive steps to mitigate your symptoms (be it with JOH, anti-virals, etc). "

    There is a synergetic effect to accepting the present while at the same time undergoing the appropriate treatment and maintaining a positive vision.
     
  4. wonderin

    wonderin New Member

    Absolutely June. Well said.
     
  5. Intrepid

    Intrepid New Member

    It does get better for many. My wish is that you are one of those for whom it does.
     
  6. gfsound

    gfsound New Member

    Thank you. My wish is that it does for everyone, and this forum ceases to exist. Unless we all stay around just to talk about fun stuff. :)
     
  7. Intrepid

    Intrepid New Member

    Have you watched the documentary "Chemerical?" Is there anything in your environment that's setting off your symptoms?
     
  8. gfsound

    gfsound New Member

    I have not watched it- I will check it out! But I do have my allergy printout from the immunologist, and I avoid everything on the list like the plague. Most of the things are somewhat random, too (like cockroaches and certain grasses that don't even grow where I live). I'm going to go back to the allergist here soon to get re-tested to see if my serum needs to be updated. He only seems to care that the asthma is under control, and seems disinclined to associate allergies with MM symptoms. I'll be re-visiting THAT topic with him, rest assured.

    Now I live in Southern California, in an open, airy, home by the beach, windows always open, fans always on. House is cleaned thoroughly and regularly. I have had mold inspectors come in and do their tests- nothing. I traded out my down pillows and everything else when I was doing the NAET (even though the prick test did not indicate I was allergic to down). And on and on...

    HOWEVER, that is yet another good reason to sell all, pack it up, and move to a COMPLETELY different climate for 6-12 months. I'd live in Antarctica if it meant I'd be free of symptoms. But I'll probably start somewhere a little warmer, first. :)
     
  9. June-

    June- New Member

    Hey, gf, have you tried a vaca in higher elevation? I seemed to have much fewer symptoms in higher elevations and when the ac was on in the beginning before i got relief. My favorite thing was to ride in the car in the mountains and listen to music (with no bass ) because i could not do that at home. I live east of the miss and i always test better west of miss.
     
  10. Intrepid

    Intrepid New Member

    I'd move to SoCal in a heart beat :D
     
  11. cappelhans

    cappelhans New Member

    gfsound - where did you find the contact info for the LA-based Orthokine lab? Lucky me, I have Cochlear Hydrops AND major cartilage problems in my knee - all at 33! Maybe that's the golden ticket to getting further info on this blood-spinning treatment...they seem reluctant to talk about the Meniere's application despite all the publicity via Dana White.
     
  12. gfsound

    gfsound New Member

    Well, I never found the clinic is LA which is (supposedly) associated with the German clinic (as referenced in the NYT article). Rather, during my regenokine research I found a book titled "The End of Pain", which is written by Dr. Wheling (from the Germany clinic) and Dr. Renna. So I looked more into Dr. Renna, and found that he offers regenokine at his clinic is LA: http://www.lifespanmedicine.com/. Hope that helps.

    Hey June- I used to live in the mountains of Colorado (up around 8000ft) before Meniere's. Maybe I'll go back and give it a try again to see if elevation helps.
     
  13. gfsound

    gfsound New Member

    Well, Intrepid, I went to the allergist today for my yearly check up (to renew my serum), and demanded to be retested. The Dr. did not really understand why I wanted that, considering my "symptoms" were well controlled (meaning asthma, sneezing, etc). I explained that I believed in the allergy/MM association, and that it had been 3 years since my last test, and in that time had developed MM. So he obliged and they did the 'ol prick test. When he came back into the room he said (and I quote): "Well, I don't know if I should congratulate you or commiserate with you. You were right. You are now testing positive for a lot of things that were previously negative."

    So it turns out I have "become" allergic to a lot more things in the past three years, including new types of trees and MOLDS, especially. So he put the brakes on renewing my serum, and instead has to reformulate it, and I get to start all over with four shots, 2 times a week. Yay! :|

    I'm posting this not only in response to your comment, Intrepid, but for anyone else reading this that has done immunology/allergy shots in the past (or plans on it). If it has been some time since your last test (more than 1 year), I would encourage you to consider re-testing, especially if your symptoms are not improving. This revelation might lend credibility to the MM/allergy/immune system link. I went from having no allergies of any kind, to one trigger which sent my immune system off the charts, first causing asthma, then sneezing, and then....??? MM? I'm scared to even imagine what's next. Hopefully the new serum will provide the same relief for MM symptoms as it has for my other health problems.
     
  14. June-

    June- New Member

    Keep us posted please.
     
  15. Intrepid

    Intrepid New Member

    Hey GF!

    I'm glad you went ahead and got the testing done. Our immune systems are unpredictable when it comes to sensitivities and intolerance. I have an appt. with an allergist next week to compare results from some years ago and see if anything has changed. I will be re-doing testing also and I am very curious to know the results.

    I think you will be fine :) Don't go the down the road of being afraid things might get worse....self-fulfilling prophecy and all that jazz. You'll work through it when you get there. For now, new allergy shots are good.
     
  16. gfsound

    gfsound New Member

    Wow- I just realized the last post on this thread was 7-17! I've been "gone" for over a month. I was excited (relatively speaking) to report back, but I spent the last several (3+) hours reading through all the posts over the last 6 weeks. After all this reading, it feels like my reporting on any "success" for one month (while for me it feels like an eternity) seems to be but an insignificant blip when it comes to this disease. When I read about people that have gone years (or even decades!) without symptoms, I now question every regimen (including my own!) that provides any relief. I start to wonder: is it ALL just coincidence? Anyway, that being said, I'll put this out there for what it's worth.
    For 13 months I had very little (if any) relief from my symptoms, trying almost everything (see my first post for the exhaustive list). The newest neurotologist I've been seeing does not believe in the viral etiology, but rather treats MM as a migraine. And I must say (FOR ME) that his migraine protocol has made the most immediate, significant, and lasting difference, even though I'm still throwing the kitchen sink (as usual) at the problem.
    His migraine regimen: Acetazolamide 6 X day (1500 MG total), Verapamil 1 X day (240MG), Nortriptyline 25 MG 1 X day (25 MG). He also has me on the "migraine diet," meaning cured meats, nitrates, caffeine and the like are out. Funny thing is I seem to be able to eat whatever I want- diet has NEVER been a trigger for me so far as I can tell (again, see my first post). Even now, I stick with fish as my only meat, but only because it's how I like to live; not because I think eating a plate of salami would send me into an attack (because, in fact, I've tried it several times).
    Anyway, in addition, I am getting my newly formulated allergy shots (4 shots, 2 X week), and am taking 500 MG Famvir daily (250 MG 2 X daily). Also, I take a completely modified, sporadic, incomplete, and non regimented JOH (so much so that I hesitate to even call it JOH), along with several other random supplements that I take "just because." And "just because" means because I've spent hours on the internet and have read compelling arguments for specific supplements which I feel work for me.
    As I said, take this for what it's worth. I really hope I'm not back here in two months (or two days) saying "well, I was wrong- symptoms are back." For me, even getting a month of relief is like a god send- I can focus on selling my home, my business, and keep working toward that retirement so I can....manage, I guess is the word, my MM in peace.
     
  17. cappelhans

    cappelhans New Member

    Great to hear - please keep us posted on your progress, even if the symptoms stay away. Success stories mean a lot with this disease. And hopefully over the months you can whittle the many different treatments you're using down to the ones that really make the difference for you. I'm in the same boat, taking antivirals, JOH, diuretics, and not yet able to isolate which treatments are truly responsible for controlling things...just grateful to have a little control.
     
  18. jaypr

    jaypr New Member

    Hi GF

    Very pleased for you that the treat it as migraine approach is working for you. I believe that it must work for countless sufferers who have been diagnosed with menieres when in fact they should be treated for migraine or MAV problems.

    Would you be brave enough to gradually ditch the medication that you are on as it may be that the diet alone that is giving you the relief.
     
  19. Donamo

    Donamo Guest

    Hi gfsound - very pleased that you are finding some good news! When you say you are having "success", can you be a little more specific. I assume that you are vertigo free, but what about the other Meniere's symptoms of fullness, hearing loss, tinnitus?
     
  20. gfsound

    gfsound New Member

    I'm sorry for the lack of specifics. I have been about 95% symptom free. No pressure, no fullness, and only enough tinnitus that I still don't really like being in a dead quiet room (as I can still hear some ringing), so I still sleep with a fan on. With regard to hearing loss, I'm not sure- It's not noticeable right now, although I highly doubt I'll go back to being an audio engineer! Anyway, it's a VAST improvement over where I was. It's back to living life instead of fearing it. I go weeks at a time without thinking about MM, as opposed to it consuming me.

    With regards to quitting the meds, I'm going to have to taper. The amount of acetazolamide I'm on is not sustainable, nor is it something I want to keep taking. However, I have not found that diet alone has any influence over my symptoms. Who knows, maybe I'm just too early into this to know (anything) for sure.

    Anyway, I just feel like it's important for everyone to share any successes, no matter how small, since there have been many times where those stories are all that I have to cling to.
     

Share This Page