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Old 06-21-2011, 09:32 AM   #1
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feeling discouraged with no diagnosis....

I have been dizzy 24/7 and off balance since february with headaches that come and go, hard time concentrating, frustration and overall being miserable and feeling hopeless. I don't have a concrete diagnosis yet have been to two ENTs, one said tmj (which i believe came after this ordeal started with the stress it has caused me) and the other one said maybe vn or lab. have been to gp numerous times, and a neurologist that thought maybe ms but had a neg mri. can an ear disorder last this long and will it ever improve?? i want my life back and right now i feel like its over! im also seeing a chiropractor this week and a pt for vrt next week....any thoughts, suggestions, success stories, advice would be greatly appreciated!!!!

 
Old 06-21-2011, 01:19 PM   #2
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Re: feeling discouraged with no diagnosis....

With the combination of headaches plus dizziness and cognitive difficulties, vestibular migraine (also called MAV) is a possibility. I would discuss this with one of your doctors, or go back to your GP and ask for a referral to another neurologist because your neurologist should have given consideration to this condition (I assume he didnt consider it since you didnt mention it).

 
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Old 06-21-2011, 06:17 PM   #3
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Re: feeling discouraged with no diagnosis....

See Dr. Cinberg, at the Balance Center of New Jersey. Very comprehensive testing. One of 12 specialist with the Rotary Chair. Usually, many people go from one doctor to another, (my friend was to 9 neurologists). 59 doctors in all over 14 years. Went to Cinberg, and did all but the spinning tests in the chair for my friend didn't want to do that,,,,refused bug time. (so no real diagnosis). But, Cinberg sent him to Bloomsburg U in PA. And what he didn't know, that it was for the other tests in that chair that he didn't want to take. But, being it was so far away, and there 4 nice student doctors to be around him encouraging him, he took all the tests, and got diagnosed, (after 14 years suffering), with a malfunctioning Utricle organ. Yours of course may not be that. But the Chair will rule in or out ANY ear related problem with regard to balance and dizziness.

Good luck!
Johnny

 
Old 06-21-2011, 08:01 PM   #4
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Re: feeling discouraged with no diagnosis....

thanks for the info I will look into both o those suggestions. i am having an eng test done in july, hopefully that will help as well, we'll see. I was reviewing a lot of the other boards for this same problem and i was wondering if anyone that posted a long time ago is still on here or if not that means they got better? Just looking for encouragment that people do actually regain normalcy back again!

 
Old 06-24-2011, 12:40 PM   #5
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Re: feeling discouraged with no diagnosis....

Hi breazie,

I'm right there with you. I wish I could offer you encouragement, but i too do not have a diagnosis after a year and a half. Interesting thing, we are in the same city. Who is your ENT? Is your ENG at Strong? I had my ENG last March. Showed nothing. I also had CT, MRI, b/w, and multiple hearing tests. Everything normal. I went to chiro for like six months and then to acupuncture. It didn't help. I saw a neurologist who suggested MAV, then took it back and said I had TMJ. He gave me a lot of meds that I never took.
I know what it's like to feel dizziness all the time and know how awful it is. Hoping you get some answers soon. Take care,

 
Old 06-24-2011, 01:36 PM   #6
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Re: feeling discouraged with no diagnosis....

Get to a specialist who has the Rotary Chair! Only 12 in the US.
Read my above post.

Hope you feel better SOON!
Johnny

 
Old 06-25-2011, 03:58 PM   #7
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Re: feeling discouraged with no diagnosis....

wow, your in rochester too? how old are you? I went to Dr. Paul Dutcher for ENT, and Dr. dunn for a neurologist. Ive also seen a neuromuscular dentist and was considering chiro. have you dont vrt? im seeing a pt that specializes in that next week. My symptoms have been pretty consitent and stable since february, no particular "attacks" just constant dizzy/off balnce feeling that of course sparks tons of other stuff. do you feel pulled to one side when your sitting still? thats the major symptom that makes me think it really is an ear issue...im still in the trying to rule things out stage, and hoping that this doesn't last forever, ive got a great career and a family that I want to enjoy, and at 27 this is depressing to say the least. I'd like to hear more about your situation....are you able to work/ carry out normal activities (shopping, cooking,cleaning) and such. I'm really interested in visiting the dizzy /balance clinic at strong have you done that yet? I have my doctorate and although Im not a medical doctor I seem to have enough of a background to know that somethings gotta help us, the body can overcome and adjust to almost anything. I'll admit that some days i cry myself to sleep and dream about the old me, and other days i'm optimistic about beating this thing. I put off the vng/eng bc im nervous about the caloric test and about it making me feel worse afterward, did that happen to you?

 
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Old 06-25-2011, 06:18 PM   #8
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Re: feeling discouraged with no diagnosis....

Hey Breazie,

Yup, I'm in Rochester too. I saw the other two inner ear specialists in Dutcher's office--Crane and Wayman. I saw Smith, (neurologist). If you ever see him, plan to be in his office no less than 6 hrs for every visit. Crazy.
I won't lie to you, the caloric test is not fun. It puts you into a vertigo spin that is measured. It does make you feel nauscious and off for the rest of the day. My VNG showed nothing significant. I guess there was a slight weakeness on the left side that was well compensated. That's what gave me the VN diagnosis. No, I don't feel pulled to one side. I feel waves of dizziness that come and go all day long. During the times I had the VN spells (not sure what else to call them), I had severe imbalance. I could barely walk and I had to keep my head as still as I could so I wouldn't feel nauscious. The BPPV that followed in the opposite ear 5 mos later was annoying, but not as debilitating.
Yes, I function fine. I have a husband and four children. I can function, take care of the kids, go to work every day, etc. I just don't feel great doing it. I've stopped complaining to them how I feel every day because it wasn't helping to tell them about it. My main symptoms are constant ear pressure/pain/popping, dizziness, headache, sensitivity to loud sounds, congestion like I have a cold but don't, and tingling in my hands. I had tinitus in one or both ears when this all started, but haven't had that in quite some time. My left ear just bothers me so much it's hard to concentrate at times. It feels like its going to burst it has so much pressure in it. It feels like I need to pop it, but when I try to, it pop just a little and then the other ear will pop too and the pressure will be strange on that side. I have to swallow and yawn a few times to get both ears back to semi normal.
Who was your neuromuscular dentist? I had a consult with Sussman but he wanted like $3500 up front. I wanted to see Messer, but she wanted $350 just for the consult. Did you have NM treatments? Finally I saw the only NUCCA chiro here, but after 6 mos, I still couldn't hold my alignment for more than 3-5 days. I ran out of ideas and $$ so stopped doctors until I could get a better grasp on what it was I'm treating. I'm finding this all very confusing and honestly all the doctors I've seen haven't helped. No one seems to know what I have. What did Dutcher think is causing your symptoms?

Last edited by rlat45; 06-28-2011 at 04:46 AM.

 
Old 06-26-2011, 05:23 PM   #9
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Re: feeling discouraged with no diagnosis....

Hmm, yeah I had a consultation with dr.sussman as well, i wasn't completely sold though considering i don't think that's the root cause but an after math, but Ill consider as time goes and nothing else helps. I work full time as well but sometimes struggle to make it through the day,and then I get home and I'm beat. I have one child and I'm scared that I'll never be able to have more because of this. I was also considering a NUCCA chiro,theres only one in roch right? You didn't think it helped, was it expensive? I did go to a chrio that took xrays and said my cervical spine is messed up. Did you do any physical therapy or vrt? What neurologist did you see? and do you find anything that makes you feel better or helps your symptoms (meclizine or anything?), I am really anxious for the eng, and I think theyre doing posturagraphy exam too, since balance is one of my main complaints. I also had an evoked potential to rule out ms, should get the results tomorrow so we'll see. thanks for sharing your story with me, it helps me not feel so alone.

 
Old 06-28-2011, 05:34 AM   #10
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Re: feeling discouraged with no diagnosis....

I went through PT back when the dizziness first started. I think I went about six times. It didn't really do much. They gave me exercises to do at home which I did and maybe it helped a little over time because the dizziness did slowly get better. I was taking the meclizine in the beginning but avoid it now as I was told it would interfere with the compensation process that my brain needed to do following VN And BPPV. Like you, I was reluctant to go with the TMJ treatment as I wasn't sold that was the issue either. I keep it in the back of my mind and wonder if I should try it. It's just so much money and there is a partof me that is worried it might make things worse. Regarding the chiro, I went to 3 chiros over the course of a year. The first one did the cracking and snapping technique. I only went to him once and never went back. I then went to the NUCCA chiro for about six months. She had a very long waiting list and I just happened to get in on someone else's cancellation. It was very expensive and my insurance didn't cover any of it. I think it might have helped if the adjustment would have held, but like I said before, it would never hold more than a few days. I finally got so frustrated with it that I stopped. I then went to a third chiro who wasn't NUCCA but Blair method which concentrates on C1 and C2. I went to him for about three months. The good thing was that my insurance covered it, but I stopped because the adjustments were causing severe dizziness. I figured I didn't want to go to somebody who was making things worse. The only thing I find that makes me feel better is getting lots of rest. I find if I don't get a full 8 hours or more of sleep, my dizziness is worse. I also think that reducing sugar has helped a little. I tried reducing sodium too but I really don't see much of a difference on that one. The neurologist I saw really didn't shed much light on things. He ruled out MS or any other neurological problem. He thought it might have been migraine but took that back and I really wasn't sure why. So over the past year and a half, I've seen three ENT/neurotologists, 2 neurologists, PT/VRT therapy, 3 chiros, 3 dentists and 1 NM dentist and nobody has a clue what is wrong with me. I understand your frustration with not having a diagnosis. Sometimes I worry that this is it and I'm just going to stay this way.

 
Old 06-28-2011, 07:40 AM   #11
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Re: feeling discouraged with no diagnosis....

Again, unless anyone with undiagnosed dizziness or balance issues has had the 13 or more tests done in the "Rotary Chair" by one of the 12 in the US, then you will be forever going from doctor to doctor. My friend spent 14 years going to 59 doctors of ALL types. NOTHING helped. Then, after 2 hours in the chair for all those highly specialized tests by true pioneers in ear health, he got a diagnosis. (The Utricle Organ)! His therapy is now being created for his exact tests results. to zero in on retraining his Utricle Organ to better handle the info coming to it. (Besides some other areas of faulty function that ONLY The Rotary Chair's tests can detect).

How many of you have even heard that part of the ear come out of the mouths of the many ENT's and chiros you have seen?

SEEK OUT A UNIVERSITY OR OTHER FACILITY THAT HAS CARED ENOUGH TO SPEND THE MUCH BUCKS NEEDED TO PURCHASE THE "ROTARY CHAIR". (And who have bothered to learn the latest in tests and all things related to dizziness).

There should be lines outside those places. DO NOT waste more time seeing chiros, Ent's, Neurologists who have NOT bothered to use The Rotary Chair as part of their evaluations. They miss most causes because of the lack of having "The Chair". Plain and simple.
Call The University of Bloomburg, PA and ask for Dr. Gonzales. Get info about it, and where you might find a specialist as him near you who has the Rotary Chair to pinpoint your ear problems. (to rule in or out). All else is a guess and even having doctors NOT KNOW what it is you gave wrong with you.

Now,,,No more talk about ENT's and chiros. It's making me dizzy knowing you are in for a wild goose chase! The ENT's are fine for the simplest ear problems. NOT what you are all talking about.

Last edited by Johnny D; 06-28-2011 at 07:43 AM.

 
Old 07-01-2011, 08:15 PM   #12
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Re: feeling discouraged with no diagnosis....

Well I guess Dr. Dutcher cant do my ENG, because they want a posturagraphy? with it so they referred me to Gary Paige at Strong, does anyone know what the posturagraphy shows and how its performed?? I saw the physical therapist the other day and she gave me a bunch of excercises to do,mostly with my head, are these gonna do anything?? It's mostly the wierd head symptoms bothering me now. Like when I'm sitting at work at the computer, I almost feel like if I wasn't holding my head up it would fall over if that makes any sense. I can't even describe the sensation but its horrible! I just want to feel normal again is that possible? the physical therapist said its common for symptoms associated with VN to last a long time, rather than the 6weeks all the doctos wanna tell you. SOme days i have hope, and others i feel like my life is over....

 
Old 07-01-2011, 09:19 PM   #13
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Re: feeling discouraged with no diagnosis....

Are you people not able to read my posts?

ROTARY CHAIR,,,,OR have it last 14 years, like my friend's similar condition

 
Old 07-02-2011, 01:25 PM   #14
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Re: feeling discouraged with no diagnosis....

Hey Breazie,

Posturography is just a general term for the techniques used to measure postural control in an upright position in both static and dynamic conditions. I had this with Dr. Page as well. We did this prior to the caloric test. You will sit in a dark room with goggles on and track lights with your eyes. the goggles are computerized and will measure your eye movements while you are tracking the lights. They will also have you shake your head as fast as you can and then stop. I can't remember all the tests, but there were about 45 minutes of them. Posturography is a way to test vestibular function and is usually recommended for patients experiencing dizziness and/or balance problems. Sometimes the posturography tests include a moving platform, but they didn't do that with me. Not sure why. Make sure you remove all make-up prior to the test, right down to every last trace of mascara. I thought I removed mine, but they still were detecting some mascara and I had to do it again before the testing. Another bit of advice, if you are prone to ear wax build up, make sure that you have no wax in your ear canals at all. They won't do the caloric test if you have any. They say it would be very painful if you did. I had to reschedule my first time because of this.
Yes, on the lingering effects of VN. I was told that it can last much longer than 6 weeks as well. I've read some posts of people having residual effects for years.
Has anyone suggested Migraine Associated Vertigo to you at all?

 
Old 07-19-2011, 06:56 AM   #15
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Re: feeling discouraged with no diagnosis....

Hey, Yeah MAV has been suggested, just want to rule everything else out first. I had a cold last week, and it seemed to make me feel worse again, did you experience that at all? My appt. with Dr. Paige is WEdnesday, i'm getting more anxious, I guess they do have a rotary chair too, not sure if they'll use that or not though. And then I have a follow oup with the neurologist, my pcp has recommended to ask for nerve conduction test because of the tingling in my hands I may have a pinched nerve, which would make sense because I have a ton of neck/shoulder pain. How have you been doing with the hot weather, does it effect your symptoms at all? And does your anxiety play into any of your symptoms? I feel like my anxiety went through the roof with all of this....

 
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