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Old 07-16-2007, 07:34 PM   #1
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Join Date: Jul 2007
Location: Albuquerque, NM
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highdesert71 HB User
to all the VETERANS - I need your advice

Actually, I am happy to get replies from anyone on this board, but thought I'd direct my questions more towards the veterans on this board, since they have been around the longest, and might steer me in the right direction. By the way... to hbep... you have already been so helpful to me with your responses to my last post, so thank you!!
________________________________________ ______

Anyway, I listed my vestibular symptoms on a previous post, and some thought it sounded a lot like I may have MAV. I have had the following symptoms for 2 and 1/2 years:

constant, 24/7 dizziness (swaying, rocking, feeling of head being pulled to one side or another, or like a magnet is in my head, pulling my head in various directions)

sometimes the dizziness turns in to full on, room spinning fun (but that's not too often)

constant, 24/7 feeling of being drugged, in a dream, trapped in my head, looking through a video camera lens, things seeming to be far away and too close, all at the same time. THIS FEELING IS THE MOST DISTURBING... way more upsetting than even the dizziness.

constant ringing in my ears... which sometimes gets louder when I have had sensory overload (lights, noises, lack of sleep, etc...) (NO HEARING PROBLEMS, or hearing loss, thankfully)

bad headaches on a daily basis, which move around to different areas of my head, and behind my eyes, and sinuses, etc.. but no history of sinus problems

extreme fatigue almost all the time

feeling lightheaded and faint

________________________________________ ____________

Anyway, with those symptoms in mind, I would like to ask if any of you know what I am talking about with the constant drugged, disconnected, dreamlike feeling??? This symptom really, really, REALLY bothers me and it is with me ALL the damn time... every second of every day and night.... and I am not just talking about brainfog where you can't remember things well, and your mind feels slow.... but rather a physical sensation of being drugged, trapped in your head, in a dream, looking through a video camera lens type of feeling.... It would help me so much if any of you could kind of detail your experience with this symptom, if you have had it.

Next, does VRT work for MAV?? If so, does it help a little, or a lot?

Finally, what is the longest you have gone with this drugged, dreamlike state being constant? For me, it has not let up in two and 1/2 years, except for three (count them... THREE) 12-hour periods over the past 2 and 1/2 years, where my head cleared of most symptoms for those 12 hours, and then everything came right back again. So I have never even had periods of real remission... and it worries me so much that I will forever feel dizzy, and drugged!! I can even handle the dizziness feeling better than the drugged, disconnected feeling....

Last, I am very medication sensitive... but I am willing to try some different MAV medications in the future.. but I cannot right now because I am 7 months pregnant. With that in mind, have MAV meds helped most of you a lot?? Or just somewhat??

I know you all can relate to the worry and anxiety I feel about this vestibular problem... and how great it is to get another's experience with this, so I know someone else is going through what I am going through. Hbep, I know you said you had almost my exact same symptoms for many months.... so I am wondering how many months you had these symptoms? I just feel like something has got to be wrong with me, to still have the constant dizzy and disconnected/drugged feeling after 2 and 1/2 years straight, with only three miniscule 12 hour periods of some relief!!!! What is going on with me???

Thank you everyone!!

 
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Old 07-17-2007, 04:19 AM   #2
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Talking Re: to all the VETERANS - I need your advice

Hi Highdesert

I see where u reached/thought of a Dx---but don't see---in all the tests/Doc's u seen---where a Dx was reached/presented

---did I miss it?---What did the NEUROTOLOGIST have to say??


 
Old 07-17-2007, 12:13 PM   #3
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Join Date: Jul 2007
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highdesert71 HB User
Re: to all the VETERANS - I need your advice

Hi Subs.. the neuro-otologist ordered an ENG for me last Fall, and spent less than 5 minutes giving me the results, saying he didn't find anything of significance from the ENG... and gave me no diagnosis. He wanted to order bloodwork for Lyme disease and an MRI of my inner auditory canal. I've had to put further testing on hold, because I am pregnant right now. But I am going to go back to see the neuro-otologist, to talk with him more about the possibility of MAV, and see what he has to say about that. Besides the ENG, I have had many different diagnostic tests done... including MRI's of brain and c-spine and jaw, CT scan of sinuses, physical therapy evaluation by a VRT specialist, bloodwork up the wazoo, audiograms and tympanograms (hearing is normal and no detection of eustachian tube dysfunction), appointments with the neuro-otologist that I mentioned earlier, as well as neurologists, and tons of different holistic health modalities.... BUT, so far, not one doctor or health practitioner has been able to diagnose me. Most of them don't even take the time to listen to my symptoms.

 
Old 07-17-2007, 01:16 PM   #4
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Join Date: Jan 2003
Location: Chester Springs, PA, USA
Posts: 1,675
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Talking Re: to all the VETERANS - I need your advice

Quote:
Originally Posted by highdesert71 View Post
Hi Subs.. the neuro-otologist ordered an ENG for me last Fall, and spent less than 5 minutes giving me the results, saying he didn't find anything of significance from the ENG... and gave me no diagnosis. He wanted to order bloodwork for Lyme disease and an MRI of my inner auditory canal. I've had to put further testing on hold, because I am pregnant right now. But I am going to go back to see the neuro-otologist, to talk with him more about the possibility of MAV, and see what he has to say about that. Besides the ENG, I have had many different diagnostic tests done... including MRI's of brain and c-spine and jaw, CT scan of sinuses, physical therapy evaluation by a VRT specialist, bloodwork up the wazoo, audiograms and tympanograms (hearing is normal and no detection of eustachian tube dysfunction), appointments with the neuro-otologist that I mentioned earlier, as well as neurologists, and tons of different holistic health modalities.... BUT, so far, not one doctor or health practitioner has been able to diagnose me. Most of them don't even take the time to listen to my symptoms.
Hi Highdesert

Unfortunately---most Doc's have a very low tolerance for dizziness---however u would think a NEUROTOLOGIST would do/be better at it---it is not unusual for the ENG to show "Zip"---good move on talking to the NEUROTOLOGIST on MAV aspects....given the ..."testing on hold, because I am pregnant"...


 
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