It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Inner Ear Disorders Message Board

  • I've been dizzy for 11 months

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 05-22-2004, 04:28 PM   #1
    sickintoronto
    Junior Member
     
    sickintoronto's Avatar
     
    Join Date: May 2004
    Posts: 34
    sickintoronto HB User
    I've been dizzy for 11 months

    Hi everyone

    I've been on a wild ride for the last 11 months. I've entered a hell I wouldn't have believed. I'll tell you all my story.

    It all started in July 2003. I suddenly became dizzy one night around 7 pm. (Not the usualy waking up dizzy like so many others have had, myself included. I had woke up dizzy a few times in the last 3 years. But the dizzines would go away in a couple of hours......this time it didn't.)

    I became a bit panicy because of the dizziness and I tried to relax for the rest of the night. The next day I woke up assuming I was fine.....but I felt "off" that day. I remember I took the street car that day and had a panic attack. I felt sick and nervous. I didn't think of it as dizziness.

    A couple of days later the nextdoor apartment to me had their floors varnished. The fumes were so intense! I felt awful from it! I felt all weird in the head. I assumed it was the fumes, but looking back I think it was the dizziness, or a combo of the two.

    Then a few days later, I woke up very dizzy. And I have never been the same since. Not one day since then have I felt back to normal. I was so dizzy (but not the classic vertigo, a different kind of dizziness. Very hard to explain).

    I was a mess in the beginning. I couldn't sleep because laying down made it worse and my head was whirling inside. I couldn't watch TV because the images would move to fast for my eyes to keep up with. The floor appeared tilted and going out was impossible. The traffic and people moving made my head spin. I went to the doctor and she gave me cortisone nose spray. And an appointment with an ENT.

    In the meantime, I went to the emergency room and he didn't think there was anything seriously wrong with me, but ordered a CT scan anyway. It came back normal.

    My symptoms occasionaly came and went over the months. There were times I would feel almost back to normal, and then the next day I was right back to square one again. I would cry and cry like I had no control over my emotions. I often felt like I was loosing my mind. I found it difficult to write in my journal because my eyes would shift back and forth and I would mix letters up as I wrote. I just couldn't think straight.

    Other symptoms were tingling in my hands and feet. Panic attacks. Waking up in a panic. Motion sickness, from just watching TV. One day I noticed that my vision was quite blurry. It would get blurrier the dizzier I was. My eyes hurt to roll them around in my head.

    I saw the ENT and he didn't think it was Inner ear related. I then saw a neurologist, and he didn't think it was neurological.......I'm left not knowing what to think.

    I am a bit better. But still a mess. It has been a horrific journey. I wouldn't wish it on my worst enemy. And what makes it worse is the doctor's don't seem to take it very seriously and I am suffering more that I ever imagined I could. There were days I was hanging on for dear life. Wanting to die. I shudder to think of those days. They were very dark days, and I hope I never get that bad again.

    Thank you for reading my story.

     
    Sponsors Lightbulb
       
    Old 05-22-2004, 06:55 PM   #2
    studyin
    Senior Veteran
    (male)
     
    Join Date: Sep 2003
    Location: Sydney, Australia
    Posts: 2,295
    studyin HB Userstudyin HB Userstudyin HB Userstudyin HB Userstudyin HB User
    Re: I've been dizzy for 11 months

    Hi SickinToronto,

    Welcome to this board. There's lots of great people here who will be able to give you help and support with this beast. It's a terrible journey I know....I'm just sorry you didn't find this space until now! Most of what you described is exactly where I've been too. I just woke up one day and haven't been the same since as you said. Shocking anxiety all the way through it and, at about month 3, I hit lows that I never want to see again. Like you I just wanted to die as well...very scary. And lying down made everything 100X worse. I even had the tingling in the hands and feet you describe before it fully wiped me out. I can only think that this bug we got is some sort of virus that inhabits the central nervous system at one of the major input areas - the inner ear, and causes all of these disturbances. Amazing that the ENT didn't pick labyrinthitis. They just don't understand this illness...absolutely stuns me how little is known about something so significant!! Hang in there amigo....it does eventually go away although it takes forever. Others on here have come out the other side and are 100% again.

    Cheers.....Scott

     
    Old 05-22-2004, 06:58 PM   #3
    jeffster
    Senior Member
    (male)
     
    jeffster's Avatar
     
    Join Date: May 2004
    Posts: 216
    jeffster HB User
    Re: I've been dizzy for 11 months

    Wow, a lot of those symptoms you mentioned are exactly what I have been feeling for about 5 months now. Some days it's so bad I can't function, but most days I can just barely get by. I've been to my GP a bunch of times and he seems to think it could be an anxiety disorder but I'm not so sure. He's a great doc, I just think my explanation of my symptoms hasn't been good enough. The "dizziness" I have is VERY difficult to describe. Most times I just feel like my head is in a fog and I can't concentrate. I feel clumsy and slow. I was having trouble sleeping too, because when I closed my eyes it got much worse, but my doctor prescribed a low dose of lorazepam and it's much easier to sleep now. I also have a sort of motion sick feeling when I'm watching TV, trying to read, or focusing on one thing rather than constantly looking around. It is accompanied often by anxiety and panic, however, since I got the lorazepam and I've got used to the feeling (Like I'm not going to die the next minute or go insane) the anxiety isn't as bad or as often. Anyway, I wish you great luck. I'm back to my GP on Wednesday and I'm going to ask for a referral to an ENT and an allergy test. I have a CT scan scheduled, but it's not for a couple more months.

    I don't want to hijack the post here, but does anyone have any ideas what else I might ask for while at the GP other than allergy tests and an ENT?

    Thanks.

     
    Old 05-22-2004, 11:54 PM   #4
    studyin
    Senior Veteran
    (male)
     
    Join Date: Sep 2003
    Location: Sydney, Australia
    Posts: 2,295
    studyin HB Userstudyin HB Userstudyin HB Userstudyin HB Userstudyin HB User
    Re: I've been dizzy for 11 months

    Hey Jeffster,

    You might try and hunt down an neuro-otologist. These guys are inner ear specialists and should understand your symptoms. There are a number of tests that can be run but it could also show nothing unfortunately. Did your anxiety dizziness start suddenly? After a cold or flu?

    Cheers...Scott

     
    Old 05-23-2004, 03:01 AM   #5
    star803
    Senior Member
     
    star803's Avatar
     
    Join Date: Oct 2003
    Location: Perth, WA Australia
    Posts: 187
    star803 HB User
    Re: I've been dizzy for 11 months

    Hiya

    You will find a lot of people on here will have had similar experiences to you. I have had this dizzy head for 22 months. A long time!! My symptoms sound very similar to yours and they started the exact same way. It started slowly with the dizzies coming and going before hitting properly and never going away. I get better and worse - constantly on a rollercoaster of symptoms and emotions. I don't know about everyone else but I have learnt to deal with the anxiety side of things so I don't let it affect me most of the time.

    My diagnosis is right vestibular damage. I am in the midst of VRT which will take a while to work! It took 19 months for me to get a diagnosis so don't lose heart. I had 3 different ent's tell me that it definately wasn't inner ear! Until I actually saw someone who knew what he was talking about! Doctors tend to be pretty useless when it comes to inner ear disorders on the most part. I kept on getting another opinion until I found someone who took me seriously. And it took awhile!

    You will get through this. I try to just take one day at a time.

     
    Old 05-23-2004, 03:45 AM   #6
    willsmommy
    Veteran
     
    willsmommy's Avatar
     
    Join Date: Feb 2004
    Posts: 437
    willsmommy HB User
    Re: I've been dizzy for 11 months

    Hi and welcome to the boards, I know how horrible the dizzies are too!

    Mine started with much the same symptoms as yours the dizzy spells and then I did have a major vertigo spinning attack and that really was the start of never feeling entirely normal just as you describe. I had labs and have the reisdual damage in my left ear.

    I had all the same feelings as you in terms of intense dizzy in the head, spinning sensations in the head, sometimes felt like marbles, like my brain was actually moving, all other vile off feelings.

    Like you describe it would appear that the floor was tilting and that it fely really odd when walking at its height it felt like walking on a major bouncy castle or tramopline. Now its far subtler and just feels wrong.

    I would find it impossible to watch TV the fast motion would make me feel dreadful and sick and dizzy.

    I had a whole host of symptoms not least pure fear over what the heck was going on with me.

    Well luckily for me my own GP realised it was labs, but its only this year that I finally went to a neuroto (different to a neurologist) for the full range of inner ear testing. That proved that my symptoms were due to the asymetry between my ears giving rise to these horrible symptoms.

    The treatment seems to be pretty much time, time, some more time and VRT. The good news is that these symptoms do eventually peter out and its seems dizzyness is not a life long condition.

    I undersatnd your frustartion and fear over not knowing what is wrong with you and the doctors shrugging you off.

    I would most edffinately go and see a neurotolgist as you next point of call. They s[pecialise and diagnose the cause of dizzyness, wether it be a peripheral (ear) or central (brain) problem.

    Another thing to take heart from is that you have had a negative CT scan so you know it is nothing life threatening. That said the symtoms are very disruptive and upsetting so I do know how you feel honestly.

    Yes and I have to agree with the others about ENT and docs saying no its not inner ear, unfortunately its a very very common problem.

    Push for a neuroto referal.

    Good Luck and please feel free to ask any more questions, we are here for ya.

    Ilia

     
    Old 05-23-2004, 05:24 AM   #7
    Emsybobs
    Inactive
     
    Join Date: Nov 2002
    Location: UK
    Posts: 1,400
    Emsybobs HB User
    Re: I've been dizzy for 11 months

    Hi and welcome...I too have the same symptoms as you and started in the same way...I too have uncompensated Labyrinthitis and have had it for 19mths and counting...

    My GP knew I had it then an ENT and Neuroto diagnosed me with it too.

    It's a total nightmare, I too have had the most awful dark days, I try to see it as fate and I have learnt an awful lot from it...My life is on hold and I just work part time. I had to move back with the parents which is not great for a 24 yr old. I was used to my independence as I left home to go to Uni etc at 18. My socal life is down the pan! This thing also knocks your confidence - in everything.

    But yes it's the worst illness! I do think yours sounds inner ear related. Please push for a new referral.

    xxx

    Last edited by Emsybobs; 05-23-2004 at 05:25 AM.

     
    Old 05-23-2004, 01:31 PM   #8
    willsmommy
    Veteran
     
    willsmommy's Avatar
     
    Join Date: Feb 2004
    Posts: 437
    willsmommy HB User
    Re: I've been dizzy for 11 months

    Just a thought, its very common to feel worse as the day progresses, quite simply as its hard work for the brain to work out the mixed signals and it gets poorer at doing that the more tired you are. Secondly the more you move around the more the vestibular system has to work but this is actually a good thing as its the moving around that enables your brain to figure out the signals and compensate.

    Caffine is a stimulant and will often agrrevate symptoms and naturally alchohol which interferes with the functioning of the cerrebelum (which processes the balance information) and can in fact if you drink alot increase fluid levels in the inner ear.

     
    Old 05-23-2004, 06:14 PM   #9
    Christine Renee
    Newbie
     
    Christine Renee's Avatar
     
    Join Date: May 2004
    Posts: 3
    Christine Renee HB User
    Re: I've been dizzy for 11 months

    Dear Sick in Toronto:

    I have been doing lots of research since my dizziness started. My spells started like yours - out of the blue and could last for short periods to hours at a time, many spells a day.

    I am very surprised that your ENT did not suggest an inner ear disorder. 60% of dizziness comes from inner ear problems. Especially, if you have had a viral or bacterial infection or even allergies.

    I would put together a log of your dizzy spells, including weather patterns.
    I notice that my issues get worse with changes in barometric pressure.

    At the apex of my problems, I could not stand - and my head would spin even lying down. It was not true vertigo- since I didn't have spinning sensations but I did have several drop attakcs - where all of a sudden I would fall to my "affected side". Several times, I was so "out of it" that I almost drove to the ER.

    After over 2 weeks of dizziness, I went to my ENT.

    My ENT immediately said it was inner ear related- and that I was not going crazy. Most likely a viral infection which caused inflammation in the inner ear.

    I had an Bahr's test and an ENG to test for Meniere's disease - a sort of glacoma of the ear. I unfortunately tested postive.

    Since your dizziness is recurrent, I doubt that it is labrythitis (spelling?) which is caused from viral infections.

    Also, you should have an MRI done- to test for accoustic neuroma - tumors on the cranial nerve- just to be safe ...... Very, very rare - but my ENT checked me out since these non-cancerous tumors can lead to the same symptoms you experienced.

    From what I read, the dizzy spells can lead to panic attacks and vice versa.

    What helps:

    - reduce/eliminate cigarette smoking (harder said than done)
    - Go on a low salt diet
    - try dieretics (spelling) to reduce water in your system
    - Magnesium supplements
    - avoid stress as much as possible
    - avoid caffeine
    - some say avoid alcohol

    (basically, cut out anything that is enjoyable in life).

    The calmer you are during the spells - I find- the shorter they are.
    I find talking to a friend during spells helps distract me from the misery.

    Good luck!

     
    Old 05-23-2004, 06:22 PM   #10
    Christine Renee
    Newbie
     
    Christine Renee's Avatar
     
    Join Date: May 2004
    Posts: 3
    Christine Renee HB User
    Re: I've been dizzy for 11 months

    Quote:
    Originally Posted by jeffster
    Wow, a lot of those symptoms you mentioned are exactly what I have been feeling for about 5 months now. Some days it's so bad I can't function, but most days I can just barely get by. I've been to my GP a bunch of times and he seems to think it could be an anxiety disorder but I'm not so sure. He's a great doc, I just think my explanation of my symptoms hasn't been good enough. The "dizziness" I have is VERY difficult to describe. Most times I just feel like my head is in a fog and I can't concentrate. I feel clumsy and slow. I was having trouble sleeping too, because when I closed my eyes it got much worse, but my doctor prescribed a low dose of lorazepam and it's much easier to sleep now. I also have a sort of motion sick feeling when I'm watching TV, trying to read, or focusing on one thing rather than constantly looking around. It is accompanied often by anxiety and panic, however, since I got the lorazepam and I've got used to the feeling (Like I'm not going to die the next minute or go insane) the anxiety isn't as bad or as often. Anyway, I wish you great luck. I'm back to my GP on Wednesday and I'm going to ask for a referral to an ENT and an allergy test. I have a CT scan scheduled, but it's not for a couple more months.

    I don't want to hijack the post here, but does anyone have any ideas what else I might ask for while at the GP other than allergy tests and an ENT?

    Thanks.

     
    Old 05-23-2004, 06:24 PM   #11
    Christine Renee
    Newbie
     
    Christine Renee's Avatar
     
    Join Date: May 2004
    Posts: 3
    Christine Renee HB User
    Re: I've been dizzy for 11 months

    Jeff:

    Ask the GP to send you to the ENT for an ENG test - which will test your inner ear balance. That way, they can rule serious conditions out. A Bahr's test may be done as well.

    An allergist also is good since allergies can trigger inner ear problems. Cure the allergies - minimize the inner ear problems.

    Good luck!

     
    Old 05-23-2004, 07:03 PM   #12
    critical
    Junior Member
     
    critical's Avatar
     
    Join Date: May 2004
    Location: Ontario Canada
    Posts: 19
    critical HB User
    Re: I've been dizzy for 11 months

    I had a prolonged period of dizziness in the mid-90's, because I was b12 anemic...from years of not eating a proper diet/ trying to be a vegetarian. Get your blood levels checked too if you can.

     
    Old 05-24-2004, 03:06 AM   #13
    Ninamarie
    Senior Member
     
    Ninamarie's Avatar
     
    Join Date: Dec 2003
    Location: Sydney Australia
    Posts: 114
    Ninamarie HB User
    Re: I've been dizzy for 11 months

    See the neuro-otologist first and let him/her take it from there re; tests and ct scans. Why do you think you need an allergy test?

     
    Old 05-24-2004, 04:33 AM   #14
    Emsybobs
    Inactive
     
    Join Date: Nov 2002
    Location: UK
    Posts: 1,400
    Emsybobs HB User
    Re: I've been dizzy for 11 months

    Critical - what kind was your dizziness? Lightheadiness? What fixed it - having B12 supplements???????

    Welcome Christine. Sorry to hear of your menieres but glad youve found us. Re - the reccurrent thing - Lab'itis can be reccurrent but I think I know what you mean - you mean episodic? As in Menieres? I think sickintoronto could have L'itis as altho it started with a few spells, the dizziness is now constant.

    xxx

     
    Old 05-24-2004, 07:48 AM   #15
    jeffster
    Senior Member
    (male)
     
    jeffster's Avatar
     
    Join Date: May 2004
    Posts: 216
    jeffster HB User
    Re: I've been dizzy for 11 months

    Quote:
    Originally Posted by Ninamarie
    See the neuro-otologist first and let him/her take it from there re; tests and ct scans. Why do you think you need an allergy test?
    I've seen people on other forums with symptoms like mine who turned out to be allergic to something.

    Jeff

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    being dizzy for so long is making me feel crazy Lauren29 Inner Ear Disorders 18 04-02-2008 01:57 PM
    Dizzy and out of it for 6 months and counting Lampz Open to All Other Health Topics 8 03-07-2008 06:58 AM
    Five months without being dizzy neddy Inner Ear Disorders 1 08-17-2006 09:21 PM
    Question for those who have been dizzy 7/24 for a long time and recovering Mica09 Inner Ear Disorders 16 04-30-2004 10:34 AM
    Dizzy and Faint 24/7 Is this just me Brain & Nervous System Disorders 7 03-27-2004 11:29 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 02:19 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!