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  • Bilateral Vestibular Loss, Severe Allergies, Chronic Eustachian Tube Dysfunction

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    Old 02-24-2014, 07:30 AM   #1
    aerofoca
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    Bilateral Vestibular Loss, Severe Allergies, Chronic Eustachian Tube Dysfunction

    Hi. I am a 31 y/o male. For the past 2 years I have been tealing with a progressive issue with blocked ears and vertigo and worsening allergies. I currently have Hashimoto's thyroiditis and am a type 2 diabetic but am of normal weight (5'10 and 165 lbs). I used to have bothersome nasal allergies as a child but nothing serious. These episodes were characterized by sneezing a lot and congestion. I used to take Allegra 180 when needed and the problem resolved itself. I grew up mostly in Puerto Rico where my allergies were most bothersome but I moved to Illinois for college and currently live in Massachusetts. During my time in illinois my allergies rarely bothermed me.

    In Jan. 2012 I developed a terrible cold during the winter in Illinois having just returned on vacation from Puerto Rico and was put on antibiotics. After this I could not unblock my right ear and my left ear somtimes gave me trouble. I was diagnosed with Eustachian Tube Dysfunction and told this is common after a cold and takes time to go way. During the summer it started to get better but my ears kept on makign cracking noises and would not totally unblock. My hearing was normal after testing by an ENT.

    I moved to Boston in Jan. 2013. In April 2013 my ears started to itch and burn and were ringing and my throat was very dry as well as my eyes and my ears were more blocked I saw an ENT who told me I should have allergy testing done. My hearing was again tested and was normal. A month later I started to develop vertigo (not spinning but but off balance symptom). I had a bunch of balance tests that showed severe bilateral vestibular loss (most of my inner ear function is gone). My hearing was tested again and is still normal though the blocked feeling in my ear is getting worse. Now, allergy testing revealed severe allergies to practically everything (mold, ragweed.all sorts of trees.etc) I was allergic to 98% of the 60 something things they tested me for. Now, I had never had such severe allergies in my life but they are becoming progressive.

    One doctor feels I have Meniere's disease exacerbated by severe allergies but two other doctors say no Menieres but I do have severe allergies that are aggravating my inner ear and eustachian tubes causing the vertigo. They have tried all sorts of steroids and a bunch of nasal sprays including flonase, afrin..etc and the all the antihistamines but nothing has worked. I feel like my sinuses never recovered from that initial infection two years ago. My lifelong allergies were predominantly characterized by sneezing and mucious but at least it was getting out. After the cold two years ago the nature of the allergies has changed. Sinc then I rarely sneeze and it is very dry and burns when I do. There are only patches of mucuous in my nose as opposed to the viscuous mucuous who can clear by blowing your nose or using water which makes me suspicious that the problem is being caused by a sinus blockage and thus the innability of the sinuses to drain properly. I had an MRI which showed chronic frontal sinus disease years ago. However, the ENT's are at a loss and are pushing me try Sublingual Immunotherapy (SLIT). However, I feel like given the number of allergies that I have there's no way they can prepare a serum to densitize me from everything. I have also been to an otologist who is equally clueless. I had another normal hearing test (3rd so far) She says it doesn't seem like Menieres because my symptoms have been constant and not episodic. She basically wants me to wait and see. I have tried VRT for rehabilitation but it hasn't been doing much for me. I am still about 90% functional except when I drive and turn my head quickly my eyes are slow to catch up because of the impaired VOR reflex. It seems like everyone is just dumbfounded how I could lose so much Vestibular function so shortly. Meniere's makes sense because I already have Hashimoto's and autoimmune disease run together even though I am the only one in my family with any sort of autoimmune problem.

    I am debating whether to quit my job and maybe move back to Puerto rico hoping the warmer climate might help. I am at the end of my rope and would really appreciate some advice. I feel like the docs just don't have a clue and are trying to plug SLIT even though they can't prove it works and I am reluctant because it is expensive and not covered by insurance. But my allergies are getting progressively worse. Most days I just have trouble swalloing and throat is dry and my ears keep itching. The tinnitus has been constant since April. And of course, I am constantly feeling wobbly because of the loss of inner ear function. I am at the end of my rope. I'm only 31 and crippled by this problem and just looking for any advice.

    Thanks for reading this long post. Any advice appreciated.

    P.S. (For completeness, I have been diagnosed with Type 2 Diabetes, Hypertension, Hashimoto's disease, L5-S1 disc herniation with sciatics and spinal stenosis, 3 bulging discs cervical spine, Chronic Eustachian Tube Dysfunction, Severe Allergies, Bilateral Vestibular Loss, and Probably Meneres Disease)


    ...And yet my family, friends and coworkers think I"m a hypochondriac

    Last edited by aerofoca; 02-24-2014 at 10:38 AM.

     
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    Old 02-25-2014, 12:27 PM   #2
    pisces320
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    Re: Bilateral Vestibular Loss, Severe Allergies, Chronic Eustachian Tube Dysfunction

    Hey! I have a similar story... am 34 now and officially diagnosed with Meniere's at age 19 which was manageable until I had kids. after my 1st kid at age 28 I randomly developed a crapload of new allergies and ended up with multiple sinus infections, and increasing vertigo, fullness in my face and ears plus my good ear that didn't have Meniere's started ringing and having fluctuating hearing. My original ENT basically told me it was all in my head that allergies couldn't be causing the increase in problems and wanted to give me more drugs. No thanks. So I switched ENT's and he said definitely the allergies are causing more mucous and more pressure therefore causing the eustacian tube to click and etc. This alone can cause vertigo so I've been on a mission to "cure" my allergies. Tried drugs and discovered after a while they quit working and I felt just as good or better without them so no more drugs. I am doing allergy shots (4 years now) and I feel they have helped tremendously. However, all the other conventional medicine routes were failing me so I turned to a naturopathic dr who started me with some great vitamin supplements and urged me to look into food sensitivies.

    After three pregnancies and multiple bouts of antibiotics, she suspected my gut health was poor and 80% of your immune system starts in your gut. So, vitamins and probiotics and she encouraged me to try a new way of eating. Less inflammatory items as what you eat has the power to hurt or the power to heal. I didn't believe her. So I did it for a month, felt better, then switched back to my old eating habits. Except I did discover that dairy was a problem for me so I did cut out most dairy from my diet at that point nearly 2 years ago.

    this past fall I was finally at my wits end and decided that I couldn't live with vertigo every day anymore and not being able to drive when I wanted to. Did a ton of research and discovered the Paleo diet. It's been the BIGGEST change ever! I've been slowly transitioning to no processed foods, all natural, whole foods, little or no dairy and no gluten (paleo usually says no grains at all but I discovered I do okay with rice and some non gluten whole grains). My ears have been less plugged, I have more energy, my skin has improved, I have a lot less vertigo and my hearing in my good ear is improved. Nothing short of amazing. Seriously, you should try what they call the Whole 30 food challenge. It's tough but you'll find out what foods work for you and what foods don't and then you can adjust your diet from there. There's a ton of testimony from peeps who have diabetes and thyroid issues that have done this way of eating and has improved them immensely.

    I also saw you have some spinal alignment issues... tried the chiropractor? I had a reversed neck curve and the top 5 vertebra out of alighment and have been seeing a chiro for about 4 years. I'm near normal for alignent with almost normal range for a neck curve now. I do think this has contributed to my improved well being. anyway, sorry for the long reply but I do hope you can find something that works for you!

     
    Old 02-25-2014, 12:30 PM   #3
    pisces320
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    Re: Bilateral Vestibular Loss, Severe Allergies, Chronic Eustachian Tube Dysfunction

    btw... look into books that address autoimmune conditions and diet. There's a ton out there. I personally like "It All Starts With Food" - great info on how your diet affects the immune system and the science behind why or why not to avoid certain foods.

     
    Old 02-25-2014, 01:55 PM   #4
    aerofoca
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    Talking Re: Bilateral Vestibular Loss, Severe Allergies, Chronic Eustachian Tube Dysfunction

    Thanks pisces320 for your informative reply. I too have come to the conclusion that diet plays a huge role. I just today received a comprehensive report that was generated by on outside physician based on my condition. She is confident that what I have is allergy induced immune mediated vestibular loss. Apparently this is a controversial diagnosis and is not the same as Autoimmune Inner Ear Disease (AIED). Basically, she recommends SLIT and allergy avoidance and continued treatment with nasal and corticosteroids. I tried those and they failed. THe problem with corticosteroids also is they raise my blood sugar through the roof. Now, has you experience with allergy shots been good. I'm quite scared because of the increasing evidence that i read showing that allergy shots send the immune system into overdrive in people who already have autoimmune problems and can give you more autoimmune diseases. This is controversial and since I already have hashimoto's I'm scared of getting somethign else by "messing" around with the immune system. But again, this a controversial link and one of my ENT's said it's nonsense. Of course, he has a lot to gain $$$ wise by me doing SLIT or allergy shots.

    That's why through my a service offered by my company, I had an outside medical expert review my case (with nothing to gain from it) so I felt objectivity was assured. I have to admit though that after reading this report and in "Prognosis" seeing "Excellent, full recovery of vestibular function expected after allergies are brought under control. VRT will help slightly but residual deficits will only be restored once the vestibular system has recovered from allergic inflmmation", it gave me a lot of hope.

    The most depressing part of this ordeal wh=as that I got hit by all this crap while I was getting my pilot's license and had to stop because of it. I am also changing my diet and have started cutting out red meat and eating salmon 4 times a week. I think I seriosuly lack Omega 3 anyway. I suspected that I might have gluten sensitivty but had an endoscopy and tested negative for Celiac. I am still considering cutting out gluten after all the anecdotal evidence of people improving on a gluten free diet.

    Anyway, I've also lost faith in Western Medicine. Most of my relatives grew up in a dirt poor 3rd world country (India) and are the healthiest in my family. Most lived well into their 90's with no problems. Most of my family who grew up here have tons of problems (mostly diabetes, hypertension..cholesterol). I'm convinced it's all the chemicals and stuff in our food that is poisoning us and like you It inflames me everytime I go to a doctor for my problems and they try to just give me pills which don't cure but induce further side effects (I was even told to take Prozac because my vestibular loss was pschological despite 90% caloric weakness).

    Anyway, I'm also planning to see a naturopath and chiropractor because I unfairly eschewed alternative medicine as "quackery" due to my snobbery as a scientist. I'm glad those treatments have been working for you. Thanks again for the advice and sorry for blabbing on again in my long post.

     
    Old 02-26-2014, 09:14 AM   #5
    pisces320
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    Re: Bilateral Vestibular Loss, Severe Allergies, Chronic Eustachian Tube Dysfunction

    Oh wow, that would be tough to go through this and having to stop with your pilot training. I'm glad you've at least had some hopeful news of full recovery. In regards to gluten, I've done a lot of research on it and even though you don't have celiac (not many peeps truly are celiac) you can still have a gluten sensitivity that can case TONS of issues. It's worth trying at least to cut it out completely say for a month and see how it affects you. As for the shots, I personally never had any major increase in immune response but would notice the shot location would be itchy and sore for a few days. Never any other systemic reactions though but they are possible. You could always try it for a few and see how your body responds and if it makes you feel worse right afterwards, then stop. It does take awhile to build up to the top dose and start to feel a change in how you react to the allergens. It took me at least 2 years of shots to start noticing a difference but I can now open my windows in the spring and fall and not feel like I'm dying

    I TOTALLY understand the not willing to try alternative medicine. I too had chalked them all up to being quacks with crazy ideas but after modern medicine continued to fail me and even make me feel worse, I had to try something. It's been a great experience. Not everything I've tried has helped so I just quit doing those things (acupuncture for example) but I've kept with the things that I've noticed doing good for me. Anyway... fingers crossed for you!

     
    Old 04-15-2014, 10:46 PM   #6
    jacob088
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    Re: Bilateral Vestibular Loss, Severe Allergies, Chronic Eustachian Tube Dysfunction

    You need to look into alternative medicine, your answers are not going to be found in mainstream medicine. I would first look at mercury poisoining, especially if you have numerous amalgams in your mouth. This will destroy your gut, and would explain your severe allergies. I am suffering from the same thing, including the balance problem and much more. Anyways, there are other things that can help including changing and limiting your diet, vitamins, minerals, herbs, probiotics, etc. Would like to type more but I have to get back to doing research. Get a hair test and urine test done for heavy metals.

     
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