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    Old 12-17-2008, 10:50 AM   #1
    lucille8
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    Unhappy Constant Dizziness

    Sorry it's so long!!

    I posted here a while back, but I have had some change of symptoms and wonder if it could still be an inner ear doctor. I have seen several different doctors and have not been diagnosed. I have seen an ENT who tried treating me for BPPV, but realized I didn't have that. I have had blood tests, CT scan, and an MRI.

    My CT scan said I said some increase atrophy given my age of 20, but my doctor didn't really make a comment on it.

    Anyways, starting back in August of 07 I use to take Excedrin all the time because I had migraines all the time since I was like 12 ( i was 19 at the time, so like 7 years). Well after taking them one time I felt very strange. I felt like my whole world was screwed up, i felt what I now know as dizziness. I assumed it was from something else, and when I took it a few days later with the same effect, i threw the bottle away and swore to never take it again.

    I started having the same effects with caffeine and alcohol. Whenever I would consume them I'd feel so weird I felt like I was having a panic attack, and never in my life have I had anxiety. Eventually by June of 08, it had gotten so bad I had to eliminate those things as well, which wasn't easy because I pretty much lived off of caffeine and alcohol.

    During the worst of it, before I eliminated these things I had severe visual changes. I had problems reading books because the worlds looked very strange to me, also on the computer. I began seeing weird spots in my eyes. Sometimes during the early day I remember looking on the ground and it looked like there were little white bugs all over the ground.

    Anyways, over the past several months I now get numbness in my feet constantly. I get these electrical shocks every couple of months.

    My main concerns are that I have problems thinking clearly, concentrating, and my memory seems non existent. I feel dizzy constantly 24/7, or off balance. I feel like everything has changed, like I feel distant from everything. I have to avoid those triggers to make sure the dizziness doesn't get worse.

    I feel almost hopeless sometimes because I don't know whats wrong and I can't keep going to the doctors because I don't have the money.

    Does anyone thing this can be an inner ear disorder or something different?

     
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    Old 12-17-2008, 11:50 AM   #2
    charlotte67
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    Re: Constant Dizziness

    Do you have a history of headaches?

     
    Old 12-17-2008, 12:24 PM   #3
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    Re: Constant Dizziness

    Hi Lucille,

    >>> I had migraines all the time since I was like 12.

    You sound like a likely candidate for migraine associated vertigo - a condition that many of us here deal with. See the following video:

    [url]http://www.meei.harvard.***/videoclips/MigraineassocDizziness.mov[/url]

    and then read all of this from Prof Hain in Chicag:

    [url]http://www.dizziness-and-balance.com/disorders/central/migraine/mav.html[/url]

    (both websites preapproved my mod1)

    Your condition is very treatable.

    Best ... Scott

     
    Old 12-17-2008, 06:54 PM   #4
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    Re: Constant Dizziness

    Hi Lucille,
    There is nothing that you said that I can not relate to. I have a dx of MAV. Sorry you are dealing with this.

    CK

     
    Old 12-18-2008, 06:19 AM   #5
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    Re: Constant Dizziness

    CK! Hello! How are you doing? I hope well during this holiday season.

    Take care,
    Violet

     
    Old 12-18-2008, 05:03 PM   #6
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    Re: Constant Dizziness

    Hey, I had the same thing, I think it is from using Mirena IUD after doing much research. Do you by chance have that or any other Birth Control hormone?

     
    Old 12-18-2008, 05:07 PM   #7
    lucille8
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    Re: Constant Dizziness

    That's what I've heard a lot, that it sounds like MAV. I'll continue to look into it because the research I've done myself makes me believe that it is what I have as well. Thanks for the help. Especially because I am so sensitive to light. At this point, I wish I could hide in a dark room for the rest of my life.

    But I also wonder have you guys had to completely sustain from alcohol? It's become harder and harder at my age to refrain, especially when I'm out with friends and I'm always embarrassed to explain that I can't drink because I get dizzy. It's definitely the least of my worries giving the sensations that I've dealt with because of whatever is going on with me medically. But it's also difficult to think I'll be spending the rest of my life without wine. I love wine.

    I'm about to turn 21 in a few weeks..and I'll be a sober little child. It'll be so hard to say no to those glasses of wine!

    Thanks so much guys.

     
    Old 12-19-2008, 01:29 AM   #8
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    Re: Constant Dizziness

    Hey Lucille,

    >>> Especially because I am so sensitive to light. At this point, I wish I could hide in a dark room for the rest of my life.

    This is textbook migraine going on. And if alcohol makes you feel worse, it's yet another solid sign. Alcohol is a trigger Ė especially wine and beers. You could try drinking vodka and soda. Apparently that will not kick off migraine attacks.

    You should grab a book by a Dr Buchholz called "Heal Your Headache". Follow his recommendations and see if you can get it under control. If not you may need meds.

    Best ... Scott

    Last edited by studyin; 12-19-2008 at 01:29 AM.

     
    Old 12-19-2008, 09:33 AM   #9
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    Re: Constant Dizziness

    Hi, Lucille--I love wine also, but I have had to abstain for the past year b/c of the dizzy/migraine hell issues. I've noticed the wine makes me dizzier, but in the past only white wine gave me a (superbad) headache. I still have hope and fully expect to drink wine again in the future. Apparently these migraine flare-ups are usually cyclical in some way, even though the cycles might be a few years. (Oh, I've also heard that organic wine might be a good option...less preservatives, etc.)

    Cheers!
    Violet

     
    Old 12-31-2008, 02:05 PM   #10
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    Re: Constant Dizziness

    Okay thank you guys so much! It's crazy hearing people going through the same issues as me. I had no idea it was possible to feel this way.

    My main question is for those that have suffered from this, are they ever healed completely? Were you able to go back to concentrating and remembering, it's deeply affected my communication with people, which i feel is the worst symptom of all.

     
    Old 01-03-2009, 02:05 AM   #11
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    Re: Constant Dizziness

    Hi,

    Just saw something interesting in your post:

    Quote:
    Originally Posted by lucille8 View Post

    My CT scan said I said some increase atrophy given my age of 20, but my doctor didn't really make a comment on it.
    I think it is critical you ask a doctor what is causing the 'atrophy'.

    I remember I was told by a specialist that he thought I had cerabella ataxia, I went home and looked it up on the internet and managed to freak myself out as the diagnosis listed was terrible. So I went to my local doctor and asked for an explanation as to what the specialist meant, given the medical nature and broad terminology it wasn't as bad as I thought.

    Find out what increased atrophy means for you, via a doctor (not the internet you might freak yourself out), and what treatments if any you
    need given that it is present.

    Also when you say it's affected your communication - what do you mean?
    Is it that you forget words, or you have become too sick to socialise?

    Cheers
    DizzieBlonde

     
    Old 01-08-2009, 01:44 PM   #12
    lucille8
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    Re: Constant Dizziness

    Yeah, I do need to see a doctor for that. I just don't know where to start because I feel like I've been to so many.

    It's affected my communication because I feel like my head is in constant brain fog. I can't ever think. It's like my mind feels closed off.

    Because of that it's affected my communication - I can't ever think, and I'm constantly struggling to find words, forgetting what I'm talking about in the middle of talking and stuttering.

    Because of that I feel embarrassed sometimes to talk.

    I just wish there was something to fix this mess. I don't know who to go to.

    I was also wondering if maybe it has something to do with my TMJ. I was diagnosed with it about 9 years ago. I heard it can cause dizziness and my nose is constantly stuffed up. The last doctor mentioned something about my nose last time I saw a doctor and gave me some medicine but I never took it.

    I'm always paranoid to take things now because I'm worried it will make me dizzy. I never use to be this way.

     
    Old 01-09-2009, 02:28 AM   #13
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    Re: Constant Dizziness

    Ah yes I understand! Being dizzy does affect alot of things, and so many things cause dizziness and vertigo. And while TMJ can cause dizziness its not related to the other symptoms you are describing.

    You sweetheart need a plan, and if you are too foggy get someone, parent, sister, friend to help you.

    - Book an appt with a neurologist and take the scan from the DR with you. Tell the neurologist about your problems with words etc, if you feel you may have trouble communicating with him/her take a support person with you on the day.

    - Practice some stress management / relaxation every day. What does that mean, you say? Find some stretches to relieve the body of tension, put on a video that makes you laugh (hard), get some coloured pencils out and draw something. Refelct on some things you like and do and plan to do something everyday.

    - It's very easy for people with a chronic health condition to slip into depression, if you think you may be depressed get in contact with a counsellor. You can talk to them about what is happening to you. They will be supportive and will not be bothered by your loss of words. They may offer some further coping strategies for you while you wait for a diagnosis.

    - Personally I found a change in diet helped my brain fog. I found a DR who also was into natural therapies (thank the lord). I changed my diet to lean meats and vegetables, then slowly re-introduced back fruit, bread etc. I'm now booked into an allergy specialist as I started to react to certain foods I was eating again. Maybe you could also look into seeing a natual therapist about your nutrition.

    There is so much more I would like to add....but the bottom line is: Investigate further with a Neuologist; practice some self-care with relaxation and possible counselling; and have your nutrition investigated.

    Last edited by DizzieBlonde; 01-09-2009 at 02:31 AM.

     
    Old 01-31-2009, 12:50 PM   #14
    lucille8
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    Re: Constant Dizziness

    Well, I just recently seen a neuro-otologist. It was a great feeling talking to someone who actually understood my symptoms! While other doctors made me feel I was crazy, he connected all my symptoms to an inner ear disorder. For now, he has diagnosed me with a vestibular disorder I think he said.

    The only problem with this doctor is I have to pay everything upfront, he has a third party policy. And Iím currently a typical struggling college student. The testing he would like to do is $2,600 made up about 20 different tests.
    One thing I like about myself is Iím good about adjusting to situational changes. While this has completely altered my life, for what I feel, the worst, I have managed to cope. I am not depressed and I try to make myself happy. The worst part is feeling so disconnected from everyone. I have the worst time communicating, and I feel embarrassed explaining it sometimes, because unless theyíve dealt with the experience themselves, thereís no way they could understand.

    Iím actually going to school for dietetics, and my mom is a super health nut guru, so Iím pretty knowledgeable about eating well. I try to eat the best I can, as often as I can.

    Thank you so much for the advice! Iím sure you completely understand how miserable this experience is. I feel like these years in my life are just being wasted because I feel like I canít do much.
    Luckily, because I canít think much and I canít focus academically I have focused my attention elsewhere. I have been trying to get myself in shape for some 10K runs. I have been running 5, sometimes 10 mile runs in my city. Itís helped me a lot to get my mind off of things.
    And if you have the opportunity to, I would highly suggest it. To me, there is no better feeling than running, it helps me distress and get my mind off of anything.

    I hope everything works out for you. I feel very bad for anyone who has to suffer from such an illness.

     
    Old 01-31-2009, 04:19 PM   #15
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    Re: Constant Dizziness

    Quote:
    Originally Posted by lucille8 View Post
    Well, I just recently seen a neuro-otologist. It was a great feeling talking to someone who actually understood my symptoms! While other doctors made me feel I was crazy, he connected all my symptoms to an inner ear disorder. For now, he has diagnosed me with a vestibular disorder I think he said.

    The only problem with this doctor is I have to pay everything upfront, he has a third party policy. And Iím currently a typical struggling college student. The testing he would like to do is $2,600 made up about 20 different tests.
    One thing I like about myself is Iím good about adjusting to situational changes. While this has completely altered my life, for what I feel, the worst, I have managed to cope. I am not depressed and I try to make myself happy. The worst part is feeling so disconnected from everyone. I have the worst time communicating, and I feel embarrassed explaining it sometimes, because unless theyíve dealt with the experience themselves, thereís no way they could understand.

    Iím actually going to school for dietetics, and my mom is a super health nut guru, so Iím pretty knowledgeable about eating well. I try to eat the best I can, as often as I can.

    Thank you so much for the advice! Iím sure you completely understand how miserable this experience is. I feel like these years in my life are just being wasted because I feel like I canít do much.
    Luckily, because I canít think much and I canít focus academically I have focused my attention elsewhere. I have been trying to get myself in shape for some 10K runs. I have been running 5, sometimes 10 mile runs in my city. Itís helped me a lot to get my mind off of things.
    And if you have the opportunity to, I would highly suggest it. To me, there is no better feeling than running, it helps me distress and get my mind off of anything.

    I hope everything works out for you. I feel very bad for anyone who has to suffer from such an illness.

     
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