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    Old 01-08-2004, 03:39 PM   #1
    Emsybobs
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    Question The intense "Dizzy in head" Feeling...

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    Hi all, me again - I'm going through a phase of this inner ear mess really getting to me. Hope you dont mind me asking these questions.

    Ok, when my dizziness is at its worst, I have an intense "dizzy in head" feeling, far more than being lightheaded, it's the millions of marbles going round, eyes out of focus feeling, if move head it feels as if the air is thick somehow and if move head fairly quickly, environment shifts. Also get woozy with this feeling. It's a very odd sensation - goes along with the "looking at the world through odd lenses" - which I have constantly. SOMETIMES during a good patch, this feeling can be minimal and I just have the inbalance and "warped world/lenses" thing but when dizzies are bad it is there very intensely.

    What I find is...if I say, go to a cafe with friends, I am ok for the first 15 mins, then the more I am there (and the more I focus, I guess) the worst the feeling in the head becomes. It gets to a point I cant stand it anymore, the cognitive symptoms kick in and getting out of the cafe and going home is quite a problem as the dizziness is intense as is the drunkeness.

    Does anyone know what I am talking about?

    Who finds this too that by the end of the night out somewhere or even sitting at the dinner table, you can feel really dreadful?

    Subs...I ask you this. Can this be Lab or BPPV - I think you had this feeling? Did you think it would never go? Do you think the home BPPV exercises you did, cured this for you or was it VRT?

    Ilia had the Epley and this feeling subsided for her. Just makes me wonder.

    I also get this feeling, when dizzies are bad, if I stay on the computer for more than 5 mins.

    Thanks in advance fellow dizzies xxx

    Last edited by Emsybobs; 01-08-2004 at 03:43 PM.

     
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    Old 01-08-2004, 05:43 PM   #2
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    Cool Re: The intense "Dizzy in head" Feeling...

    Hi Emsybobs

    ..."Can this be Lab or BPPV"....

    You bet!!! prob BPPV!

    ..." think you had this feeling?"...

    Yep---Big Time!

    ..."Did you think it would never go?"....

    Nope---thought it had become a part of my life forever!

    ..."Do you think the home BPPV exercises you did, cured this for you or was it VRT?"....

    Almost 100% sure it was not the VRT---done by the ENT's Physical Therapists----think it was home BPPV exercises---plus---the exercises I got off the Internet---the long walks during the day on the rutted roads and at night in areas where there was hardly any lights---and also the exercises that the Univ of Penn Balance Center said I should focus on---for the vision probs.---that's what I think anyway.


    ---As for the cognitive problems---as you know---that will stay until---you compensate to such a degree---that---you can release some of the processing power of your brain--for other efforts---that will happen---as you know!

    It could be (after 14 months) that some thing is holding you back---which could be because the Epley has not been done, or a vision prob, or whatever.... that is what they will hopefully focus on in your upcoming medical visits....my guess like willsmom---that it is BPPV.


     
    Old 01-09-2004, 01:06 AM   #3
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    Re: The intense "Dizzy in head" Feeling...

    hi emsy

    u bet, i feel like u, i went to friends last year autumn time, it was unbearable, sitting at the dining table most of the evening, all i had in my thoughts was how awful i felt, not good company at all really, hardly said a word, i felt like i was swaying in my chair really bad, but i could see myself in a mirror and i wasnt.....then about 2 months back i went to the college with my eldest to tour it and see what subjects she likes, in one of the classrooms which was compact, and full of people, we had to sit and listen.....it took all my willpower to remain there, i wanted to get out so bad, and this is because of the intense ping pong ball bouncing i felt in my head and down my back and the shimmering effect off the walls, i have the visual prob too....i wear glasses and have for years, its like when u get a new prescription and it takes a while to get used to them, feels like looking through a goldfish bowl, as i turn my head i see to much curvatue at the sides, and when i told the neuro about this, he said it is common in people with vestib, disorder, but he did not elaborate, i'll ask again.

    see ya

    lorr

     
    Old 01-09-2004, 05:01 AM   #4
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    Re: The intense "Dizzy in head" Feeling...

    Thanks to both of you...

    Subs - should I begin the BPPV home exercises myself? Can they do any harm if its not BPPV? Could you post the link? The only other thing that could be holding me back is my neck and headaches though they have been vastly reduced via osteoapthy. Will mention to ENT in Feb. Def not vision problems. Had eyes checked. Subs, have had this dizzy in the head feeling SINCE the start of all this, it has not developed - same for you? It could be "just" Lab.

    Brina - know just how you feel, would you try those home BPPV exercises?

    xxx

     
    Old 01-09-2004, 05:05 AM   #5
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    Re: The intense "Dizzy in head" Feeling...

    Emsybobs - I had exactly what you described. I remember going out for my mum's 60th birthday for a family meal. I didn't feel great to start with but it was bearable. Then after about 20 minutes I began to feel really dreadful. The dizziness was more intense - the restaurant was very hot and noisy and I felt like I was in a bubble. I was barely taking in the conversation that was going on - and just wanted to go home. People kept saying to me "are you alright?" as I had gone a whiter shade of pale.
    When I got home I cried for about 2 hours solid as I was so fed up with being ill and had not enjoyed the evening at all - I truly felt I would NEVER feel normal again.
    Sitting at a dinner table was really hard for me - even at home. Because I'm only 5"3 only my toes touch the floor when I sit at the table and that made my balance go really bad. I spent a lot of mealtimes eating in the armchair with a tray on my lap!
    For me, the cognitive probs really began to disappear once the vertigo began to get better. Subs is right - once you begin to compensate - there seems to be more of your processing power in your brain released for things such as concentration.
    As you know I had constant vertigo for months - visual disturbances, rocking and bouncing sensations, poor balance, nausea (in the first 2-3 months) and hot sweats....
    I really think the VRT played a part in my recovery - although it took some time. (A good 3-4 months).
    During the whole ordeal - have you ever (even for a short time) experienced times without dizziness/disorientation?
    I recently chucked out last years diary and had a quick flick through it first. I had written in it whenever I had had a 'fair' day (certainly not dizzy-free, but good enough to be able to go for a walk and not suffer for it!) - in January I had marked 4 days fair; February - 6 days; March - 9 days; April - 12 days.....
    So, although I felt like I was never going to get better, because most of the time I felt hideous - I WAS making very slow progress.
    I think writing a diary of how you feel can be very beneficial and helps in the times you feel really down.
    I really would give the VRT a go - don't wait for your appointment - start now!!! Just remember to take it very gradually and build up over a period of weeks.

    Thinking of you,
    Ruth
    xxx

     
    Old 01-09-2004, 05:27 AM   #6
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    Re: The intense "Dizzy in head" Feeling...

    Thanks Ruth. Your post helped me.

    Have started the VRT - doing what Hbep has told me to do - currently doing the head up (ceiling) and down (floor) 4 times a day...I hate this one!

    Funny you should say about the diary as Ive been thinking of it. As for good days. I am def having more good days. I have never had a day I feel dizzy free but have had about 3 in July where I was 98%. During my good periods which I get in blocks of about 2 weeks, I am about 85%/90%. But then wham bad patch. You'll know how that feels.

    So this dizzy in the head thing may not be BPPV if you had it? I think it could be indicative of BPPV or Lab - but how can you tell which? Inner ear problems are such a grey area!

    I hold hope for the VRT. Will persevere... I talk to Ilia a lot too which helps me immensely.

    Thanks
    xxx

    Last edited by Emsybobs; 01-09-2004 at 05:29 AM.

     
    Old 01-09-2004, 05:36 AM   #7
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    Re: The intense "Dizzy in head" Feeling...

    hi emsy,

    yes i would consider the home epely, but as i have only days till my visit with the neuro, i will see if i can get it done there first...its funny as ruth had suggested keeping a diary, thats exactly what id been thinking too, it is a good idea...... wonder how ilias getting on in london?

    lorr

     
    Old 01-09-2004, 07:18 AM   #8
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    Cool Re: The intense "Dizzy in head" Feeling...

    Hi Emsybobs

    ..."Could you post the link?".....

    Can't post it here---do a Google search on:

    HOME TREATMENT OF BPPV: BRANDT-DAROFF EXERCISES

    Should come up.

    The Brandt-Daroff Exercises are a method of treating BPPV, usually used when the office treatment fails. They succeed in 95% of cases but are more arduous than the office treatments---so you might want to wait until after your visit---in any case see what you think after you read up on them.

    ..."have had this dizzy in the head feeling SINCE the start of all this, it has not developed - same for you?"......

    After the period of the vertigo---about a week---I then started the home exercises----after about two weeks of those---the vertigo never came back--the dizziness "base lined" and started to slowly, slowly, slowly go away---until I reached a point---about month 11/12---where my vision probs because dominant---which I had corrected---which speed up compensation--so I would say--once the vertigo stopped and I was left with just the constant dizziness--it never got worse---it was bad---but never got worse---and started to improve---slowly(and I know you understand "slowly").

    .."It could be "just" Lab."...

    That is what the first Doc(the ENT) said---the Neurologist(not Univ of Penn) said BPPV(at four months)---went back to ENT--he said Lab---just give it time---I did---then switched to Univ of Penn Balance Center---I just got their report---in the mail---and am sked back on 9 Feb---the report with all the tests indicate---to them---I never had Lab or VN---that there is and never was (no) nerve damage--and that I have had BPPV---all along---with complications compensating by my vision problems---I'll see what happens with the 9 Feb test/visit.........

    So--after 14 months---I doubt its Lab---my guess is BPPV---that has not been reconciled through the exercises----and that there is no nerve damage---but the tests should tell the story----they sure did in my case---I guess there are certain telltale signs---in the tests that Univ of Penn---runs that gives them---indications when there is/are nerve damage----makes sense---but will see on 9 Feb---got 60 Min with the Director(same day after the tests)---one of the few people in the world--that's supposed to have his "stuff in one sack" in this area---we will see---should be a good visit---I'm a lot smarter at month 17 then I was at month 1(Aug 02).......


     
    Old 01-09-2004, 08:00 AM   #9
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    Re: The intense "Dizzy in head" Feeling...

    hi subs

    forgive me if im not concentrating, but what tests do they do to find out if there is nerve damage or not.....

    thank u in advance

    lorr

     
    Old 01-09-2004, 08:54 AM   #10
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    Cool Re: The intense "Dizzy in head" Feeling...

    Quote:
    Originally Posted by brina
    hi subs

    forgive me if im not concentrating, but what tests do they do to find out if there is nerve damage or not.....

    thank u in advance

    lorr
    Hi Lorr

    No probs---but

    There are five sheets of paper---with about 45 tests on them---from a to z---including TMJ, etc....some of which I am still looking up on the Internet---I thought I knew of all(or at least most) tests---looking at this I was not even close---I have no idea---which ones led them to their conclusion on the nerve damage---at this min---but if I do not discover which they are---I will ask on---9 Feb---I'll say one thing for them---they sure are through---so I'll have to get back to you on that one.


     
    Old 01-09-2004, 09:20 AM   #11
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    Re: The intense "Dizzy in head" Feeling...

    Hi there Subs,

    Curious. I know you asked for all your test results. I'm curious - did they find a significant difference btwn your ears? I'm asking as my neuro oto told me that on the ENG (I didn't have the caloric, due to a very bad previous experience with water in my ears) I showed an 11% difference btwn the ears. He said that certain neuro oto departments didn't consider that significant, but at this department they did. I was written up as having a probable peripheral vestibular disorder. I know that people are diagnosed with VN based on totally normal results - so wasn't that concerned. I was almost a year in by the time I had the tests and had clearly compensated to a degree.

    Anyway, it did open the door to wondering about all the factors contributing to this for me, and also that they ruled out BPPV straight away due to a quick test in the office - I was asked to throw myself down on one side then the other, then was told to look straight at the neuro oto as he checked for nystagmus. I now realise this may not have been thorough enough. I have also made a fairly startling recent discovery. When I had chronic fatigue syndrome for 6 yrs, years ago, eventually, 5 and a half years in, I saw a specialist in the field in a London hospital. He was ahead of the game in terms of treatment and tried me on an experimental regime of magnesium injections - it had been shown that people with certain conditions - CFS and fybromylagia, could be suffering from low tetany syndrome - very low magnesium levels. I had a astonishingly good response and recovered from my illness within a few months. Anyway, bothered by why my tmj disorder and dizzy problems came on so simultaneously I have been looking for the link. It turns out that low magnesium can manifest in other ways, including - tmjd/vertigo/migraine and neck problems, the one that had me falling off my chair was the mention of stapedial muscular spasm - at one time during all this, and to a less severe degree now, I have been bothered by a horrible vibration in my ears.

    Anyway, it's taken me sixteen months for the penny to drop that the illness I have experienced in my life subsequently could have the same root cause as the CFS I was so disabled by all those years ago. I am weighing up whether to go to my GP to discuss this and to make an appointment with the same immunologist I saw all those years ago, and ask for another round of injections.

    This isn't to say I don't have vestibular nerve damage, I think low magnesium, if it gets severe enough, could cause this, which would explain why the VRT is helping, but obviously if it is the same problem - low tetany syndrome, then I would clearly also benefit from treatment for this.

    Clearly I can't know for sure, but as I said it has made me really, really wonder about that ENG result. Anyway, I'm rambling, I am still mulling all this over, not yet sure what I think. But anyway, curious that your neuro oto mentioned that he thought it was all BPPV, not nerve damage and therefore what your results were.

    best,

    hbep.
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    Last edited by hbep; 01-09-2004 at 09:23 AM.

     
    Old 01-09-2004, 12:00 PM   #12
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    Cool Re: The intense "Dizzy in head" Feeling...

    Hi Hbep

    ...."did they find a significant difference btwn your ears?"....

    Yes---when the ENG was given(Oct 02)---had all four parts of the ENG---it showed------"a dead right labyrinth"

    Dix-Hallpike showed a severe torsional nystagumus on the head hanging right position which could not be stimulated on a repeat test, i.e. it "fatigued"..

    I was surprised to see that entry(no nerve damage) in this last medical report---I intend to explore it fully on 9 Feb.......

    P.S. Forgot this one:

    ..."neuro oto mentioned that he thought it was all BPPV".....

    It wasn't just the N-Oto---stating that in the record----it was the entire team's assessment---made up of N-Oto's(2), Neurologists(1), Internal Medicine(1), Psychiatrist(1)---plus the Balance Physical Therapists---which were all involved in the examination/testing(9 Sep 03)---sort of like a "joint" effort---which is then further evaluated by the the Director of the Balance Center---they sort of believe that this thing can/is so complex---that you have to exam/test/consider all aspects---in order to reach a good sound judgment---that said---it still a "guess"---educated---but a guess---don't think---at this time---the medical profession---can do---much more then that---since---there is not way to do "direct testing"---9 Feb should be interesting!!


    Last edited by Subs30; 01-09-2004 at 01:39 PM.

     
    Old 01-09-2004, 01:25 PM   #13
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    Re: The intense "Dizzy in head" Feeling...

    Hi, I have also has feeling like I was super dizzy. Especially when I go shopping and i have to concetrate on a bunch of different products on the shelves. My eyes get a little tired. I have gone to my optomitrist to have my eyes checked and my eyes are fine. ??

    What is kind of odd about my deal is that I actually can have a really bad dizzy episode brought on by high pitched sounds. And then I kind of lose it and get disoriented. And my left ear buzzes.

    My ear doc said my ears are fine. However, he just looked in my throat and in my ear. ?? That was kind of cool, since it took me about a month to get referred to him.

    This is only since October 2003 when I had a really bad allergy episode. Possibly the flu.

    I have told my doc about this and he said that it is just stress.

    Besides your post I had never read anybody have something like this.

    Sorry that I am not exactly giving any info on what might be causing your problem.


    Quote:
    Originally Posted by Emsybobs
    [COLOR=Magenta]

    Hi all, me again - I'm going through a phase of this inner ear mess really getting to me. Hope you dont mind me asking these questions.

    Ok, when my dizziness is at its worst, I have an intense "dizzy in head" feeling, far more than being lightheaded, it's the millions of marbles going round, eyes out of focus feeling, if move head it feels as if the air is thick somehow and if move head fairly quickly, environment shifts. Also get woozy with this feeling. It's a very odd sensation - goes along with the "looking at the world through odd lenses" - which I have constantly. SOMETIMES during a good patch, this feeling can be minimal and I just have the inbalance and "warped world/lenses" thing but when dizzies are bad it is there very intensely.

    What I find is...if I say, go to a cafe with friends, I am ok for the first 15 mins, then the more I am there (and the more I focus, I guess) the worst the feeling in the head becomes. It gets to a point I cant stand it anymore, the cognitive symptoms kick in and getting out of the cafe and going home is quite a problem as the dizziness is intense as is the drunkeness.

    Does anyone know what I am talking about?

    Who finds this too that by the end of the night out somewhere or even sitting at the dinner table, you can feel really dreadful?

    Subs...I ask you this. Can this be Lab or BPPV - I think you had this feeling? Did you think it would never go? Do you think the home BPPV exercises you did, cured this for you or was it VRT?

    Ilia had the Epley and this feeling subsided for her. Just makes me wonder.

    I also get this feeling, when dizzies are bad, if I stay on the computer for more than 5 mins.

    Thanks in advance fellow dizzies xxx

     
    Old 01-09-2004, 01:45 PM   #14
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    Re: The intense "Dizzy in head" Feeling...

    Hi Subs,

    Wow - just saw your other post - 45 tests - never thought I'd be jealous that someone had, had a lot of tests, lol. Uni of Penn sounds great. Guess if I experience future problems I'll know where to fly to in The States. If u don't mind saying what's the name of the doc you'll be seeing. I like to keep the name of specialists in my back pocket so I'm 'armed' should I ever get worse again and choose to travel for a second opinion. Also - wow - a dead right labyrinth conflicting with a no nerve damage result!!!! Totally curious what the doc is going to say in Feb - although if you don't have any nerve damage what fantastic news!!!

    If you have time be really curious what some of the things you're looking up are. What else they consider might have caused this etc...

    Hope you're well - I always like to keep quiet when I'm experiencing a good spell in case it all goes wrong, but I've been coasting along in the 90% and upwards range for the last few days and thats with a cold.

    best

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    Old 01-09-2004, 03:22 PM   #15
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    Cool Re: The intense "Dizzy in head" Feeling...

    Hi Hbep

    ..."what's the name of the doc you'll be seeing"...

    Sure---they are all listed here at the Univ of Penn Web Site:

    [url]http://pennhealth.com/hup/balance/team.html[/url]

    If you have the time--go here--

    [url]http://pennhealth.com/hup/balance/appts2.html[/url]


    --and print out the questionnaire(PDF Format)---it is very interesting---had a tough time filling it out---really makes you think---but it covers all bases--that I can think of.

    ...."wow - a dead right labyrinth "...

    My reaction---exactly---I said "dead?" they said "Yep!" I said--well can't post what I said

    ..."other post - 45 tests"....

    Well---I should have said tests/entries---once I get it sorted---may not be all tests----It is just amazing Hbep---what your told verbally during your visit(s) and what they end up putting in the record---its just mind boggling!!

    Later---Oh yes still at 100%---cold/flu---has gone bye bye---feel really good---I just hope they don't do anything on the 9th of Feb with these final tests(hopefully)---to set me back---you never know---with this junk!

    I'll keep you cut in on what I find out--in the testing area.


    Last edited by Subs30; 01-09-2004 at 03:26 PM.

     
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