Walking With Grandmpa [my father and grand-daughter]

Walking With Grandmpa [my father and grand-daughter]
"I like walking with granpa his steps are short like mine." (dedicated to my dad who passed 4/1/10)

Sunday, May 19, 2013

Meniere's Disease

I have some really good news, I know it sounds odd to be happy about being diagnosed with a disease but when you know there is a problem and you don't know how to make it better or understand why its happening, its almost like there is a Dr Jekyll/Mr Hyde waiting inside waiting to rear his ugly head and there is nothing you can do to stop it! Sorry this is rather a long post..... After going to doctor after doctor for the last 25 years I just gave up thinking I would ever find out what was wrong with me! Sure I new the important things I did not have a brain tumor, stroke etc....but no reason why I was having the debilitating vertigo attracts. When they occur they come on strong drop me to my knees I break out in a sweat , room spinning violently, throwing up cannot move have to remain still and they last between 30 minutes to 4 hours. The attacks control my life, since I did not know when\why they would occur I stopped driving in the city, in a store I always know where the exit door is, have lost job after job, I don't like crowds and just prefer to be home (home is my safe zone). The ENTs I went to would have me move my head left to right saw no rapid eye movement send me home with `happens again come back`  then when it happens again I have someone call (I can not move) only to be told they could not see me for 3 weeks! See where I am headed with this.....Dr can't diagnose me unless they see what's happening, when its happening they can't fit me in for weeks and the attacks usually only last one day! It was like a broken record sad to say. Anyway I decided to give it one more try (had been 6 years since last ENT Dr). I found a ENT that is a nurse practitioner, she had me do the usual head movements nothing happened, I was ready with the happens again routine...... But she said let's try an air pressure test, it took about an hour and in that little hour she changed my world! :) she said I have meniere`s disease (this is not something you die from). I am now on a salt restricted diet, no caffeine, no pre-packaged foods and a water pill once a day. This will not stop the attacks but it will make them less severe and that is all I could have wished for. She has also set me up with a Dr that only sees patients with meniere`s in August and when I spoke to him he said he may be able to extend the attacks to years in between instead of every couple months, or I may never have another that is music to my ears! Also the side effects from my diet (good)....I have lost 16 pounds, the pressure feeling in my ears is gone, (felt like swimmers ear) I don't feel foggy headed and I think clearer. The...I won't say bad, but the hard part is I never realized how much salt is in pre-packaged foods and trying to cook without salt and still taste good is even harder. I do make most of our food from scratch, but did indulge sometimes in prepackaged, but no more! I don't mean to sound like I am complaining, if this makes my world better than I will do whatever it takes. :) I wish 25 years ago or even 10 one of the Drs I went to would have just gone that extra step.......I wonder how many patients go to the dr over the years only to also be pushed aside and fall into the cracks? It also makes me wonder/worry about the new health care proposal will Drs get even more over loaded and patent's even more a black and white piece of paper?..... I know better late than never and I thank God I finally got a diagnosis! but when you are scared and what scares you goes on for years being diagnosed earlier would have been so sweet! :)
I thought over and over about posting this and I realized if I can help someone else that does not know what is happening to them and maybe they will decide to try one more time to go to the Dr, even if they have also previously went many times before it would be worth it, then again maybe there is someone out there that can also help me! :)

21 comments:

  1. One of the most frightening things in the world can be the unknown. I'm glad your enemy now has a name.

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    1. Thank you Gorges when she told me I cried, not from sadness but happiness! When you know whats wrong and you are given a name its like part of the enemy is already gone and its a battle that you can somewhat win! :)

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  2. Hi, I go to church with a lady that has Meniere's Disease...it is hard for her...I went for 12 years of illness and no one knowing what was wrong with me...finally after knowing I was not going to make it, I tried one more doctor...I was finally diagnosed with Rocky Mountain spotted tick fever...I am lucky to be alive...I can relate to your frustration..There were times I thought I must be crazy or a hypochodriac...LOL...I am so glad you got a diagnosis...knowing whats wrong is half the battle! I am sure you will begin to feel much better and I look forward to reading about your visit with the new doc in August.

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    1. Thanks and I will keep you posted. I have read up on that tick disease a while back it sounded awful, glad you got diagnosed!

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  3. I am happy for your diagnosis. 3/4's the battle is knowing your enemy. I think doctors are 'compartmentalizing' patients too much. "Well, this worked for six other people, it should work for you." Which is BS. My father will soon be 95, has VERY bad knees and had broken his left leg near the hip about 12 years ago. We were at the doctors last week, which was no small accomplishment, and he mentioned to him about his leg cramps. Dr P gave him a paper showing exercises. HE IS 95 WITH BAD KNEES! For craps sake, know you patients, listen to your patients. We go back tomorrow for a biopsy on a spot on his right arm. I hope he asks him if he is doing his exercises. This time, I'm not sitting there like the good daughter.

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    1. Good for you! I have had the same problem with mom and dad in the past some of the stuff they would tell them to try....they could not do. Maybe 20 years ago....but the Dr would have no other options to give us....in 1999 the Dr gave my Mom 3 months to live he says she has lived a good life etc... I lucked out and found a very good Dr for a second he did a surgery he said may not extend her life but would make her he quality of the time she had left better, it worked and that was 13 years ago and she is still kicking. Good luck with your dad! I wish I still had mine with me, i'm sure yours is a treasure, take care :)

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  4. Dear Kim,
    I'm sorry this was such a battle for you. My diagnosis came on my first visit. They don't need to see nystagmus to make a diagnosis, it is all based on symptoms. Really, if you are having rapid eye movement, are you going to climb in a car and go to a doctor? No, you're crawling to the bathroom! It may be a hard disease to manage, but diagnosis shouldn't take decades. I hope you now have some relief from the diet and medications. Keep reading and educating yourself. This is chronic and progressive. Meniere's 18 yrs now, now bilateral disease.

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    1. Bilateral? Does this mean Meniere's starts in only one ear and progresses later to both? When I finally got a diagnoses the Dr said its in both. Yes thank you the meds and diet are helping so much with the day to day activities, I don't feel as though I am slightly walking to the left like I have for years (was not just felt like it) the full in my ears is gone. Not sure about how the major attacks will but my quality of life is better! Hope you are doing better with your MD and thanks :)

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  5. Yes, bilateral means both ears. I often "drift" to the right and end up hoping on one foot to balance myself. I find this wacky Missouri weather messes with my ears too. I'm glad you are finally better.

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    1. Then I guess the drifting to one side when walking goes with it also. I tell you what being being diagnosed has been soooo good! I feel like after 25 years its not "in my head" and its got a name and I am not alone!!! Thanks for talking to me about this I really appreciate it! :)

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  6. Oh, anytime. My disease has taken a drastic turn in the past 2 years and I'm now disabled. I have loads of time and NO, you are not alone.

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  7. Sorry its gotten worse. Do you mind joining my blog so I could click on you if I have any more questions, or just talk? or is there an easier way, because I KNOW I will have more! So glad I met you
    Thanks Kim

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    1. I have email...would that work? Would you want my email address? I'm kind of new to this blogging but willing to learn.

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    2. That would work to or you can just click join blog and it adds you :)

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    3. My email is mags5969@gmail.com
      So glad to have met you too.

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  8. Hi. So glad you finally got a diagnosis. I thought you might be interested in Slim Cuisine cook books by Sue Kreitzman. She developed the diet when her husband was ill and uses stock and spices to flavour, rather than salt. Lots of recipes on line if you Google her name.
    Deborah x

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    1. DeborahT
      I thank you very much, you have made my day! I have been looking her up and this will help me soooo much! Hope you are having a good weekend :)
      Kim

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  9. Glad to help Kim. Hope you like her recipes. x

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  10. I am going through the same thing with doctors for either kidney, or gall bladder or liver. One doctor just looked at me and said, "There is nothing wrong with your liver." Well, I am not jaundiced, but do we need to make me go through pain un til I am? I had just met him 15 minutes before he said this and left the room, abruptly!

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    1. Sorry to hear you are not feeling well, hope you find out soon what is going on! It's not right how patients are in and out of the Drs offices so quickly I am sure it has a lot to do with insurance, so many patients to see each day etc....I'm not saying its the Drs fault but the system needs to change.

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