Yet another disappointment :(

Discussion in 'Your Living Room' started by Donamo, Oct 6, 2012.

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  1. Donamo

    Donamo Guest

    This disease is very frustrating. Throughout August and the first 21 days of September I was experiencing all the usual symptoms including dizziness several times a week. In the first 21 days of September I had 13 days with a dizzy episode ranging from mild to severe and fluctuating hearing loss and aural fullness.

    On Sept 22 I cut out all possible dietary triggers as set out in the book Healing Your Headache. Bingo! Things improved greatly! I do a quite accurate hearing test on my own every single morning and graph the numbers. Each day my hearing improved and the fullness declined. Then the improvement levelled off but at a high, almost normal level! I was elated! I had found the solution for me!

    Oct 2 - I had a slight setback, hearing down, fullness and tinniuts up - possible trigger a bit of a stressful morning.
    Oct 3 - back to new normal high - had first NUCCA appointment and cautious, plain dinner in a restaurant
    Oct 4 - very poor hearing, lots of fullness - maybe it was yesterdays restaurant dinner?
    Oct 5 - Dizzy attack in the early morning, not real bad, but bad enough nonetheless, first one in 14 days, second NUCCA appointment during the day
    Oct 6 - this morning, hearing real bad, fullness, tinnitus back to what they were before the dietary change - ate very well yesterday - NO POSSIBLE TRIGGERS. Yesterday was a relaxing day at home except for the NUCCA appt. with all the proper dietary intake and exercise.

    Very frustrating. I had a similar period of elation when I gave up all wheat, things improved for a few days but then came crashing down. This time it lasted about 11 days before the first signs of failure.

    It is so frustrating to think that you have finally found the solution for your particular brand of Menieres only to have your hopes dashed again. I have a logical mind, mathematics, physics and computer programming are my style. Cause and effect. This darn disease seems to follow no logic.

    I have also been taking the JOH regimen since the first of August. I had PM'd JOH and Jaypr with my success, now I have to post this.
     
  2. Intrepid

    Intrepid New Member

    I'd nix the NUCCA appointments and work exclusively on diet for about 5 months.

    THEN you can introduce NUCCA and see if there is a change.

    AFTER that you introduce JOH and see if anything happens. I'm not a big proponent of throwing several things in the mix at once because you won't have a handle on what's helping and what's not.

    Don't give up!
     
  3. Gustav123

    Gustav123 Life,enjoy it.

    Yeah, I was a bit surprised you were able to get diet relief that quickly. Maybe its possible but i think its more like likely that the body requires more time time to "calm" down and clear out the effects from diet issues. So, dont give up and stick with the diet and see what happens. I did more of a shotgun approach and now that Im getting relief from migraine issues Im not sure what has helped. Thats why Intrepid's advice makes sense.
     
  4. Donamo

    Donamo Guest

    Yes, the one item at a time would be the normal best way to attack this problem, however, I think that either the longer the fullness continues or perhaps each time you have a dizzy attack, permanent damage to the hearing is done. So, if that is the case, then trying everything you can to relieve the symptoms as quickly as possible would have its advantages. If you do find relief, after a suitable length of time, if you are brave enough, you could stop one thing and see if that makes things worse or no change.

    I really do think the longer the symptoms persist, the more hearing damage there is. I was glad in a way that my Oct 2 return of symptoms came before the NUCCA appointment, otherwise I would be pretty suspicious of the NUCCA thing. I do wish I had not gone to the restaurant as that only clouded the issue, dumb move on my part, not to be repeated!
     
  5. Gustav123

    Gustav123 Life,enjoy it.

    I agree and when I am hurting and or fearing permanent damage or yet more damage thats when I find myself abandoning systematic approaches and start throwing the kitchen sink at it. So, I do see your side.
     
  6. Intrepid

    Intrepid New Member

    Have you gone the allergy shots/antivirals route?

    Dietary restrictions will help you if you have MAV. If you have hydrops or Meniere's Disease, cutting out lemons and pineapples isn't going to help you in the least bit.
     
  7. Donamo

    Donamo Guest

    I have not yet tried antivirals but do plan to in the near future. I understand what you are saying there Intrepid about the dietary stuff and I never would have thought there would be a change in my symptoms due to the dietary restrictions, however there was a definite change. It cannot be the placebo effect because I have the hearing test numbers to prove it, and they show a dramatic change. But, it has not lasted. I will remain on the restricted diet and look for other triggers but I do find it baffling.
     
  8. Gustav123

    Gustav123 Life,enjoy it.

    Early on in my MD i had periods of wild fluctuation in hearing that went from normal to fairly significant loss and back to normal or near normal.. At the time I was only on a diuretic and doing a low sodium diet. It seemed to have no logic. I believe it was result of viral/immunological activity.
    I went nuts looking for reasons and blamed myself for things i did or ate. I think now that i added more stress thinking that way. Its maddening.
     
  9. Intrepid

    Intrepid New Member

    OK. Sounds good. I'm not usually very flowery in my speech so I apologize if it comes across as curt.
     
  10. yellow

    yellow New Member

    Your frustration is echoed here. Cause and effect are very difficult to tie together. There are so many other variables at work at the same time as any treatment regimen. Tiredness, stress levels, dietary intake, exercise undertaken to name but a few.

    Add to that that many of us end up carpet bombing the target just as you are. AVs, JOH, NUCCA, USANA, prescription meds et al.

    The scientist in you must be saying that in order to do a controlled experiment you can only change one variable at a time. But how to do it? I think it takes an extreme case of self-control and forbearance and a willingness to suffer.

    I, for one, am not capable of it.
     
  11. jaypr

    jaypr New Member

    Hi Don

    It is early days and it is very baffling. It's also possible that you may have other triggers that are not dietary. Although I think it is probably the restaurant meal.

    I know that I always feel a bit off if I eat out at a restaurant even if it is the simplest of meals because I am not cooking the food. Unless you watch the person cook the meal you truly don't know what they are using in the process.

    Rather than just rely on the dietary route you may need some help like betahistine, which I always found a big help early on in my illness. I was able to ditch it gradually when my body adjusted to the dietary changes.

    Best of luck

    Frank
     
  12. jaypr

    jaypr New Member

    Just to give you an example. I returned home about 30 minutes ago from a weekly family gathering. My Mum is 82 and she cooks for six of us sometimes up to 12 people every saturday. Try to take turns cooking but she wont have it. She is a great cook and she knows generally what I can't eat.

    The meal was cooked beautifully. I had no gravy but meat, potatoes and veg which included peas in their pod. I didn't want to be ungrateful so I ate the peas. Thought I'd get away with it but I didn't. I've got a headache now which will pass but had I ate more of the peas or if I hadn't slept well last night I would be suffereing far worse now. I ate the meal about 4 hours ago and the headache started about 2 hours ago.
     
  13. Intrepid

    Intrepid New Member

    Yes but if the OP doesn't have MAV, changing up diet isn't going to help in the long run for all MM/hydrops symptoms.

    Clean eating benefits everyone. Makes you more energetic, you sleep better, doesn't mess up insulin levels, and it's generally good all round hence the initial I feel so good feeling. But, if there is no migraine, diabetes, Celiac or food allergies present, no amount of dietary restriction is going to subdue Meniere's Disease.

    I know it sounds disheartening but the solution to MM isn't found in avoiding Buccholz's list of foods, although clean eating (no processed, no junk, limited salt, limited sugar, no grains, no dairy, etc.) can help one feel better (or worse) on several levels.
     
  14. Donamo

    Donamo Guest

    No problem, your suggestions and experience are most welcome. I don't mind curt, I'll just curt you right back. In a friendly way of course :)
     
  15. bulldogs

    bulldogs New Member

    You will know when it's laby time.

    I hate this fucking disease!
     
  16. Trinity

    Trinity Bilateral Menieres 20 years, 24-7 symptoms,

    I agree. Nothing helps when you are dealing with hydrops and all the other meniere's symptoms except the vertigo. My vertigo burned out about 5 years ago, but all the other horrible symptoms remain no matter what I do. I have tried just about everything there is and nothing makes a difference. Right now, I am extremely stressed over a family situation and I have problems sleeping and am taking too many meds. I am so much worse. Now I have to find another way to at least make the symptoms a little more bareable. I know I cannot cure this beast. Carole
     
  17. redwing1951

    redwing1951 New Member

    I agree Carole, and so does my OTO. I am unilateral and am scheduled for a laby on the 31st. After 12 years of fighting the beast I have deceided to slay him. My OTO said if I go bilateral he would do a CI and that I would not have to live a life of silence. I too hate this disease!!
     
  18. Jordan

    Jordan New Member

    I think it is probably wrong to expect instantaneous success with no setbacks. Two steps forward and one step back is how some people describe the healing process. It is thus important to look at the overall trend and not be discouraged by a bad day or week.

    Actually, I think dietary changes can help people with Meniere's, and not just in the sense of eating healthy is good for you anyway. If we accept that Meniere's is a herpes virus in many cases, there are many foods that serve to "feed" the virus and should thus be avoided. Foods high in arginine, for example, are known to aggravate the herpes virus. This includes many common types of food, even many so-called "healthy" foods that most people would not suspect. Caffeine and sugar should also be avoided by people with herpes. Caffeine exacerbates tinnitus in many people. Following a low-sodium diet can also help with the problem of pressure and hydrops.

    It may be that many of the common migraine triggers are not problematic for people with Meniere's. But for some strange reason, they often are problematic, so it doesn't hurt to discover what your individual triggers may be.

    By the way, the thing about diet and "migraine" triggers applies to people with a wide variety of illnesses and conditions, including epilpesy, autism, and others. People are finding a lot of success treating various ailments by cleaning up their diets and avoiding "trigger" foods.

    I don't necessarily mean that diet alone will solve all your problems. I mean, if you have a virus, you probably need to treat it with an antiviral to get good results. If you have epilepsy, you probably still need to take anti-convulsants. But making committed dietary changes can only help in the long run by reducing the number of attacks. I remember days when my husband could hardly bring a bite of food to his lips without getting a Meniere's attack shortly thereafter. Now that he has treated himself with antivirals, he can eat most of the trigger foods that used to bother him, but only in moderation. Each time he becomes lax in this regard, he will feel it in his ear shortly thereafter.

    For anyone who is interested, I have explained what worked for my husband in this thread:

    http://www.menieres.org/forum/index.php/topic,34365.0.html

    Paying attention to your diet can mean the difference between all-out spin-fests and mild attacks that are not exactly welcome but which do not stop you from living your life.

    Also, a lot of people report feeling worse before they felt better when it came to treating the virus with either prescription antivirals or L-Lysine. If you are taking L-Lysine, this may also be what you are experiencing.

    In short, do not give up or abandon any good habits you have established as far as diet. It is potentially a long process but very worth it in the end if you are successful.
     
  19. Intrepid

    Intrepid New Member

    Can doesn't mean will.

    Those who've been here long enough, had MM long enough, suffered long enough, tried everything long enough and still felt miserable every day, eventually opted for a laby or VNS and got their health under control.
     
  20. June-

    June- New Member

    Not making any judgement on whether you have mav or mm or if so what the possible cause or cure will be .... because i dont know that answer. I will say that for me as i improved, and i did get a steady improvement that is almost 100% and that has lasted now 4 years, it was not a straight line. It was a zigzag line. There were times, especially early on, when things would be improving and then f! A setback. At first i interpreted this as proof that the previous improvment was 'not real' and a repudiation of what i was experimenting with. As time went by i realized that there was not one single bullet that would cure it once and for all, but certain things applied steadily would gradually take away almost all aggravating factors and the ear would return to normal over time. So i would urge you to look at the trend line, not give any single datapoint too much weight on its own. Good luck. I think you will get a handle on this but it is a very frustrating job but in the end worth the effort.
     

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