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  • CONSTANT DIZZINESS - 3 years

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    Old 02-16-2009, 04:01 AM   #1
    TheGent
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    CONSTANT DIZZINESS - 3 years

    38 yr old white male. I have suffered from loss of balance/dizziness almost every day (not vertigo per se) since 2005.

    Tests: I have seen the ENT, PCP, Neurologists, - had tilt table tests, ECOG's, VNG's, VEMP's, 5 MRI's, CT scans, blood tests, Psychologists, Psychiatrists, EPLEY MANUEVERs, etc., and they cannot find a solid solution.

    VEMP and ECOG have my right ear 30-50% off, but no loss of hearing, ringing in ear, fullness, etc. Meniere's-like symptoms???

    Very little nystagmus seen, but constant floating feeling - actually WORSE WHEN LYING DOWN or SEATED, almost disappears when walking or driving. Driving me mad.

    Symptoms: Not really classic vertigo, I do not spin per se, the world feels like it is moving when I AM STILL. For example, if I lie down to watch TV or go to bed, I get dizzy. If I lie down on either side, I get dizzy, I drive or walk (I am not dizzy), I walk to bathroom or drive to restaurant then sit down - I get DIZZY. Some times it feels like I am suddenly falling for no reason when at computer. No rhyme or reason.

    Analysis along the way: I am not overweight 5'9"/175 lbs, but have Sleep Apnea (though this does not appear to affect it in any way) and wear CPAP mask at night, borderline high blood pressure 130/85 with 2 meds (though I have been taking meds for blood pressure for only 2 years - so I can rule out dizziness caused by meds and have stopped meds - dizziness continued), herniated C5 cervical disc, 1mg per day of xanax for anxiety from all of this.

    Not classic vertigo (no spinning), not BPPV (epley does nothing), do not believe it is MAL DE DEBARQMENT SYNDROME (close though to what the feeling is like, like being on a hammock, though I have not been on a boat/cruise or suffered any head injuries)

    Again, we are talking 3 years now. I am up for any advice, but as you see, I am the Sherlock Holmes of my condition.

    Conclusions?
    1. C5 disc pressing on nerve?
    2. Debarkment syndrome, or derivative thereof?
    3. Motion sensitive for whatever reason?
    4. Early Meniere's disease, but without 3 other classic symtoms?

    Last edited by TheGent; 02-16-2009 at 04:06 AM. Reason: needed to add more

     
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    Old 02-16-2009, 05:28 AM   #2
    spraypaint
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    Re: CONSTANT DIZZINESS - 3 years

    hi i have had the same for years mine started back in 1995 it was with me constant for about 4 years i was told it was to do with my anxiety you know as the doctors often say it did pass but i am left with like i could be watching tv and it feels like someone has just removed the chair from under me this still hapens a lot and i seem to get the fully blown diziness in spates like lasting three months at a time believe me i do know what your going through its not nice

     
    Old 02-16-2009, 07:47 AM   #3
    Titchou
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    Re: CONSTANT DIZZINESS - 3 years

    I don't know if this will help but I have read in Good Housekeeping and saw on the Today Show a new technique by neurologists that adjust the crystals in the head and cures a large number of vertigo cases. You might research this.

     
    Old 02-16-2009, 04:39 PM   #4
    Lexi70
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    Re: CONSTANT DIZZINESS - 3 years

    I also have the same condition, mine started after flying to Spain on a family holiday. ENT are treating me for barotrauma as i seem to make a full recovery then after flying again am back to lightheadedness again. It's taken three flights for me to work this out. Flew out to America in October day four of the holiday felt all the feelings returning of all places in the supermarket. Well i never said anything at first as it was a three week break for all the family, but after six days couldn't stand it. Marshmallow feet, no concentration,jumpy,confidence zero its a crazy illness on the flight home as bad as ever go into hospital 5th March for ringonotomy just praying it works. 18 months i've been like this some days seem easier than others but i dread getting out of bed for the sensation and clumsiness to take hold.

     
    Old 02-18-2009, 09:01 AM   #5
    Wowwwweeee
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    Smile Re: CONSTANT DIZZINESS - 3 years

    Hi,

    I usually post on the Inner Ear boards, as I also deal with "head symptoms".

    Your symptoms may be that of Migraine Associated Vertigo (MAV) coupled with BPPV.

    Most people think "migraine" means "headache", but it actually means "poor blood flow". With MAV, the veins and arteries of the brain constrict and spasm. The results of this are symptoms that cause different levels of vertigo. This could be anything from "the spins", to a vague feeling of imbalance, motion intolerance, motion sensitivity, etc.

    Symptoms can last for a short amount of time, or be chronic/ongoing. This depends in part on what arteries are constricting/spasming, how long it lasts and how severe the constriction/spasm is.

    You do NOT have to have a headache to have MAV, which is where the "Associated Vertigo" part comes in.

    Most people who develop MAV also experience BPPV.

    Additionally, most people who are dealing with some type of disequlibrium condition ALSO develop an anxiety disorder. So although you may experience anxiety and panick attacks - this may be a direct result of feeling so "off" all the time, instead of the other way around. Your "head symptoms" may not be true anxiety - although anxiety can make one feel dizzy at times.

    If you do a search on my current user name (Wowwwweeee) and older uder name (Wowwweee), you may find other helpful information.

    You may also want to check out the Inner Ear Board, as there are many posters dealing the same kinds of symptoms.

    I hope this information was helpful.

    Take good care.

    Last edited by Wowwwweeee; 02-18-2009 at 09:10 AM.

     
    Old 02-18-2009, 09:40 AM   #6
    Chele60
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    Re: CONSTANT DIZZINESS - 3 years

    I don't really have much to add, except that I doubt highly you have Meniere's. I have been diagnosed with Meniere's in the late 80's and the most significant symptom is hearing loss. Also, Meniere's is episodic, not constant. With Meniere's, you will feel fine, sometimes for long periods of time, and then suddenly you will have an episode of vertigo that can be debilitating. And, there is no "early stage" of Meniere's - you either have it, or you don't. So I think it's safe for you to rule that out.

     
    Old 02-18-2009, 10:54 AM   #7
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    Re: CONSTANT DIZZINESS - 3 years

    I would suggest contacting a Lyme Literate Medical Doctor to rule out Lyme Disease...you have many of the symptoms, including sleep apnea.

     
    Old 02-23-2009, 05:58 AM   #8
    Lynne4300
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    Re: CONSTANT DIZZINESS - 3 years

    I had some of the Menieres symptoms since 1998, and was called "atypical" Menieres. As it progressed(loss of hearing, active vertigo) I gradually had the four classic symptoms of Menieres.
    By 2004 I had lost most of the hearing/balance function in my left side. Since that time, I have been in what is called "burnout" or "end stage" Menieres. I no longer have active(episdodic) vertigo, but do have constant imbalance. My body has adapted and compensated, and vision is now my primary balance tool.
    I do have the constant tinnitus, hypercusis, recruitment in the affected ear and wear a hearing aid which "compresses" the loud sounds.
    I did apply for SSDI in August of 2007 and was granted disability in December of 2007.

    I do use a Service Dog for balance/hearing alert and that has greatly increased my ability to enjoy the things I used to without depending on someone to walk with me, or to have to use a walker or trekking poles.
    Menieres is in the SS "blue book" of disabilities now, having been added a few years back.

    I found alot of help and information on this site:

    [url]http://www.menieres.org/[/url]

    Sometimes, if diagnosed early, some of the hearing can be preserved. In making the diagnosis of Menieres, usually Lyme disease is ruled out, as well as acoustic neuroma.

    Even among others with Menieres, this condition affects everyone differently.

    Good luck, and I hope you find some answers.

     
    Old 02-24-2009, 07:58 AM   #9
    Chele60
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    Re: CONSTANT DIZZINESS - 3 years

    Thank you for this information! I was originally diagnosed with Meniere's in the early 90's, but have not had an episode for quite some time. I do believe it is due to a combination of drugs I am currently on, but can find no doctor willing to accept that.

    I appreciate you taking the time to share your story with us. I was unaware that Meniere's had been placed as a disability. Interesting - and about time!

     
    Old 08-12-2009, 05:33 PM   #10
    TheGent
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    Re: CONSTANT DIZZINESS - 3 years

    Well, since my last study, I went to see world reknown expert, Dr. Ronald Tusa at Emory. Oddly his highly astute staff readministered another cold/warm caloric test. Contrary to 2 other tests I had within the same year (2008), both showing a right ear weakness (one said 53% the other 31%), his said 3% - or no caloric weakness.

    Long story short, I have been to about 5 ENT's, some with credentials better than anyone on the planet, and the basic diagnosis is PSEUDO MAL DE DEBARQMENT SYNDROME.

    Again, I am experiencing CHRONIC issues while trying to go to sleep (feels like I am falling through the bed, floor or whatever surface I am on) and when I lie on my stomach, on the floor or carpet, I literally feel like my head is going to explode from being filled with blood or something. I feel like I am going to pass out, I lose total orientation with myself and cannot function very well as a human being.

    When I get up, I am fine, 90% of the time. When I walk or drive, same thing, fine.

    I have no answers, but just following up. They recommend a low dose SSRI and Klonopin but it has yet to help.

    MDDS seems like a catch-all and I am not 100% sure I buy into it, since 2 other reports had me with caloric weakness that was pretty severe. 3 docs, 3 different diagnosis.

    The worst is that I can barely sleep and feel like something is so wrong with me, death is imminent.

     
    Old 08-13-2009, 08:18 AM   #11
    Chele60
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    Re: CONSTANT DIZZINESS - 3 years

    I am so sorry to hear what you are going through. And I can so relate, unfortunately! I know from the time I first experienced vertigo until I received an actual diagnosis where treatment could begin that actually worked, took 7 years. I remember feeling so hopeless and worn down and frustrated during that time.

    I'm not sure if I set any stock in the cold/warm caloric test. I've had so many of those administered to me, and I'm not sure if it's the technician who preforms the test or if it's the condition of the ear that might determine the outcome. I've had results that confirmed I've had intense weakness all the way to absolutely no reaction whatsoever. I understand the docs have to try to test for something, but it just seems that when it comes to the workings of balance/dizziness, things are not all that well-developed.

    I wish you luck!

     
    Old 08-25-2009, 09:47 PM   #12
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    Re: CONSTANT DIZZINESS - 3 years

    [QUOTE=Chele60;4057303]I am so sorry to hear what you are going through. And I can so relate, unfortunately! I know from the time I first experienced vertigo until I received an actual diagnosis where treatment could begin that actually worked, took 7 years. I remember feeling so hopeless and worn down and frustrated during that time.

    Thank you so much. Honestly, I would love to chat with you about it, as everyone else I talk to has heard enough about it and wants me to "get on with life" but it makes even sleep difficult. I do not enjoy feeling this way and the SSRI and Klonopin have done 100% nothing.

    I am sure they are going to want to increase my SSRI, but that means it takes longer to get off of it. Paxil has great results for some, but nothing positive of note for me.

    Believing you will get better has done nothing either.
    Relaxing has become nearly impossible as lying on the couch produces fallling, spinning or weightlessness.

    I would not wish this misery on the worst person on the planet. I hope that those in Heaven realize the difficulty I have been given when the Book of Life is handed to me.

    The Gent, Georgia

     
    Old 09-01-2009, 10:34 AM   #13
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    Re: CONSTANT DIZZINESS - 3 years

    I've been dizzy for 2.5 yrs now and let me tell you I'm just miserable. I feel so helpless, like my life has just been taken over. I've been to several ENTs, had 2 CT scans, 2 MRIs (feared a brain tumor, but both MRIs came out clear), had vertigo tests (passed), spinning chair test (passed), eye tests (passed). I feel like I'm losing my mind so I know how ya'll feel! I went from a very active person to a not as active one and I hate it! I am a new mom as well and feel like this dizziness is taking me away from enjoying my son and it really angers me. I have so many symptoms and doctors just don't know. I feel dizzy almost all the time and it seems to be getting worse. I feel out of it, dizzy, a bit off balance at times, like I'm moving, drugged up, lethargic, disoriented, hard to focus or concentrate, constant yawning... Dizziness seems to worsen when I look down or from side to side. Closing my eyes and/or laying down seems to lessen it. Also, when I move around that seems to help it as well. I've been doing yoga and that seems to help, especially when I do stretches where my head is ben down to the floor. I've had moments (through out the years) where I've had days that I didn't feel it or it was so light I hardly noticed it. I get excited and hopeful that it's finally going away and then some time later it hits hard again and it just scares me. I'm so tired of being drugged up so I stopped going to doctors. I am finally going to one this week to see if anyone here can help. I keep praying it's not cancer or anything, but doctors have told me they really don't think it is b/c all my tests have been fine (I just worry and I know that doesn't help!)

    I have to remain positive, hopeful and what not, not just for me, but for my family. I'm just so frustrated and scared now...

    Last edited by moderator2; 09-02-2009 at 08:20 AM. Reason: posted contact info - please read the posting rules

     
    Old 09-23-2009, 07:55 AM   #14
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    Re: CONSTANT DIZZINESS - 3 years

    I'm very sorry to hear about the discomfort and agony which you have been experiencing for the past 3 years.
    I would like to share with you something which i have been experiencing for over 10 years. I also have been suffering from a vertigo issue, fainting when I stand, dizziness, etc. It has affected my whole life to the point that I had to retire early from work--I am afraid to drive or even walk--I walk like a drunk!! LOL.
    About 6 months ago things become much worse--I ended up having all of the ear tests as well as eye tests-balance tests etc. , now mind you all of this took about another 2 months to complete.
    I saw the ENT here where I live and he diagnosed me with Superior inner canal dehiscence, this might be something you may like to look into.
    Good luck--

     
    Old 09-24-2009, 07:42 AM   #15
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    Re: CONSTANT DIZZINESS - 3 years

    Wow, so how are you feeling after being diagnosed with Superior inner canal dehiscence? I just went to a chiropractor and they did a series of x-rays and the x-rays are showing a neck injury where I have 2 vertebra that are compressing my spine. I know people always question chiropractors b/c they're not "real doctors", but they have been the ONLY ones that will listen to me and take x-rays and what not, of my neck. I've been having issues for years w/ my neck and my "real doctors" refuse to mri my neck or spine. I do see my "real doctor" on monday and going to tell her what they found and see if now they want to take things further. But with the chiro I've already started therapy and they are using state of the art equipment. No hand manipulation. All done by feeling and computers that calculate how far to move the bone. This way things don't get over corrected. I know people who have gone to them and had amazing results. One of them had bad neck injury and she's now fine. So, I'm hoping this is what's finally causing it and it's going to get better. I also saw an ENT yesterday (again) and ****** me off..he did nothing. He said that if my past vertigo tests were clear then there's no reason to do them again. I pretty much feel as if all doctors have given up on me. What a sad and scary feeling.

     
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