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Old 02-28-2011, 04:41 PM   #1
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Constant Dizziness... 30 years and counting... PLEASE Read and Help Me

Has anyone felt the following symptons: I used to be a long distance runner and when I was stationed in Montana I used to run on a treadmill for a 5 mile workout. When I was finished with my run and proceeded to get off the treadmill, I felt as if I was still moving/running even though I was Not on the treadmill. Has 'anyone' felt this way? It also happens when I ride in an elevator. I feel as if I am still moving when I step off. My friend, also a runner, told me he didn't feel the same when he got off the treadmill. He told me I was crazy.

Also, this very weird. I feel like a constant Ricochet because every time I turn my head a ricochet affect takes place. Imagine every time you turn your head, the room would follow your movement and wouldn't stop. I hate living this way!! I have a very very difficult time sleeping at night. It takes me forever to get to sleep and I am very eaisly awoken and made more lightheaded by the slightest cracks and creaks in my house. When I hear the train whistle off in the distance I get more lightheaded. Any noise whatsoever makes my lightheadedness get so severve I have to get out of bed. I can't even sleep on my side because of this mysterious condition. I do not get sick or vomit when extremely dizzy.

The last time I had a dizzy spell I spent 30 hours straight in bed and had to urinate in a bottle and I couldn't eat food...IT was awful. I didn't want to live. My life has been in total decline and I have seen many many doctors/specialists (MRI of ears, CT scan, ENG, neuro, pyschiatry, ENT) and they couldn't help or didn't know what to do...so most of them prescribed meds....the easy way out. I had the Epley maneuver because I thought I had BPPV but that made it worse and I almost comitted suicide.

I miss running, working out or just sleeping on my side.

I am not sure if I have Mal de Debarqement syndrome (disembarkment) or maybe my Atlas bone in my upper neck is out of wack. I did hit the front part of my head on the sharp edge of a camper trailer at age 6 and at age 25 was is a head on car collision and was not wearing my seatbelt. I am lucky to be alive.

I would give my left arm (because I bowl league with my right) to get rid of this awful condition...AND I am not kidding.

Thanks for your feedback. I really really do appreciate it.

 
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Old 02-28-2011, 08:58 PM   #2
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Re: Constant Dizziness...30 years and counting....PLEASE Read and Help Me

My symptoms sound IDENTICAL to yours and I have been suffering with recurrent severe BPPV for the past 10 months. The Epley maneuver is the only thing that has helped me.

You mentioned that the Epley maneuver aggravated your symptoms: this actually makes me suspect BPPV. If you didnt have BPPV, then it is unlikely that you would have a severe reaction to the Epley maneuver. This is because unlike the other causes of vertigo, BPPV is positional in nature. I would suggest seeing another ENT and discuss the possibility of BPPV. Since you will most likely experience vertigo during the Epley maneuver, ask your ENT if you can take an antivert to reduce your symptoms.

Good luck.

 
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Old 03-01-2011, 09:17 AM   #3
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Re: Constant Dizziness...30 years and counting....PLEASE Read and Help Me

Don ,while doing the elpey it brings on violent jerking which is the particles moving back to where they belong. I take 50 mg of topomax for migraines from the light dizzy stuff and balance stuff and noise problems......good luck

 
Old 03-01-2011, 12:21 PM   #4
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Re: Constant Dizziness...30 years and counting....PLEASE Read and Help Me

Quote:
Originally Posted by warpony2310 View Post
Don ,while doing the elpey it brings on violent jerking which is the particles moving back to where they belong. I take 50 mg of topomax for migraines from the light dizzy stuff and balance stuff and noise problems......good luck
When the Elpey Maneuver was performed by the neurologist in January 2011 (as a test on my right side), my vision blacked out and I felt like I was spinning when I arose to sitting position at the conclusion of the maneuver. That feeling lasted for what seemed like 2 minutes. I was on the narrow examining table, and the doctor caught me.

When I did the Elpey Maneuver three times at home last night on my left side, as I arose to the final sitting position, I felt dizzy, wobbled, and fell to my left side. I performed the maneuver in the middle of my king side bed with my husband watching me, so that was no problem. I see the value of doing said exercises just before retiring for the night. I slept quite well.

Edited to add:
When I quickly reclined during the first part of the Epley Maneuver, I did not experience any dizziness, nor did my husband notice any rapid movements of my eyes. Neither did I experience any dizziness when moving my head from left to right. However, at night in the darkness or with my eyes closed, then I will experience dizziness. My audiologist said that is normal because our eyes adjust when open.

Question: Are the Epley maneuvers to be done with eyes open or closed? The information I read did not say, so I did them with my eyes open.

Last edited by MariaPatricia; 03-01-2011 at 12:27 PM. Reason: Adding additional thoughts

 
Old 03-01-2011, 07:15 PM   #5
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Re: Constant Dizziness...30 years and counting....PLEASE Read and Help Me

The Epley Maneuver is generally done with the eyes open to observe nystagmus. Otherwise, it doesnt matter if you keep your eyes open or closed.

 
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Old 04-21-2012, 10:08 PM   #6
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Re: Constant Dizziness...30 years and counting....PLEASE Read and Help Me

>>...Mal de Debarqement syndrome (disembarkment) or maybe my Atlas bone in my upper neck is out of wack...

I explored that route for a while for my symptoms, but there is so much chiroquackery marketing out there the cases that can really benefit from it are probably lost in all the pseudoscience claims.

But why not try all the possible therapies you can think of and see if it fixes it. I tried just about everything myself and the final thing that did fix things was dealing with an allergy issue (plus possibly PLF surgery and Epleys).

 
Old 05-13-2012, 01:17 PM   #7
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Re: Constant Dizziness...30 years and counting....PLEASE Read and Help Me

Hi Don,

I fell onto my butt on pavement and then whiplashed the back left side of my head over 2.5 years ago. I started getting fuzzy feelings in the morning about 2 days later but they went away within 10 minutes or so. About a month later the fuzzy/dizzy feelings stayed put for hours and I went to the ER to see if I had a brain bleed from the fall. After lots of assessments (including a CT scan) they sent me home and said the feelings I had were not a cause of the traumatic fall. As if :-)

A few months later I had two significant episodes where I thrust my head back and then forward in a hearty laugh and both times I felt like my world locked in front of my eyes. It was the most awful feeling and the episodes lasted for 3-5 days. About a year after the accident I started getting visual disturbances where I felt floaty, my eyes wouldn't track objects correctly, extremely tired from trying to compensate, bothered by movements around me, bothered by sounds and lights/busy patters etc. Sometimes I had nausea but not every time. My neck was always really tight and when I would get massages it would cause me to have severe symptoms for up to 5 days so I just quit getting massages all together. I had lots of trouble getting my hair washed at the salon or lifting my head slightly off a pillow and looking directly above me was out of the question for my eyes and neck. I also slept close to 80 degrees off the bed, slept awful and couldn't figure out where I was spatially in total darkness.

I saw a Neurologist ('nothing excited him about me' and he said that was a good thing! Gee, thanks), ENT, Neurotologist, balance therapist, Otologist, Acupuncturist, and Crania-Sacral therapist (this procedure made things WAY worse for me and my final session caused an extreme feeling of firing neurons up my spine and in my head. I couldn't function right for 4 days). I used Meclazine, Zofran, Trans-derm patch for plane rides/boat rides and all it did was mask the symptoms for a little while but never stopped my body from getting spell after spell. They ruled out Meinere's, a superior canal dehiscence, BPVV, and they were going to explore my inner ear for a fistula but THEY felt very confident I didn't have any of the classic fistula symptoms.

About 3 weeks ago I saw a great forum on a Meinere's site where a guy name Hank had huge success with his Meinere's from NUCCA (also called "Atlas Orthogonal" - the more precise of the two methods and there is a site that is a directory for official Atlas Orthogonal doctors by state - this site won't let me post the URL....give me a break) I found a wonderful Atlas doctor in Austin and have had 6 sessions so far. My x-ray showed that my Atlas (C1) was 7 millimeters higher on the left, my whole neck was shifted about 1/2 inch to the left, my C2 was pulling to the right, and I had a stair step between C6 and C7. The Atlas orthogonal procedure is done with a mathematical equation to align the patient's specific misalignment. The doctor has a specialized bed and uses an attached arm that has a large shot looking thing. It pushes 6 pounds of force (you hardly feel it at all) into the precise position necessary to move the atlas. No cracking or twisting of any kind. After my first adjustment we did new x-rays and my atlas was only 1 millimeter off (we keep working to get it even), my neck moved to the center, the C2 moved back to normal and the stair step disappeared. ALL of my neck pain vanished within 20 seconds. I can look directly above me and I can't quit doing it.....I'm just elated to have this function back. I can view crossing cars and fast moving trains without a visual disturbance and I can actually feel my eyes naturally tracking the vehicles to allow me to take in the movements again!!! I can close my eyes while standing and actually stay still which was not the case pre Atlas work. Lastly, I can sleep way lower down on the bed and on either side (before I rarely slept facing my left side).

The doctor and I see each other quite often since it's normal for the body to 'go back to the bad position' after the procedure due to the lack of muscle memory on my left side.. My atlas is now holding on it's own for about 3 days and each week I am seeing lots of progress. Even when the atlas pulls out of place the symptoms are FAR less severe and getting to the point where I question if I'm even 'off' or not. She says the first 3 weeks are the worst as my body is adapting. By month 3 I'll be seeing her a lot less and my body will be strong enough to introduce some activities I love. (Softball, mountain biking, basketball, and racquetball to name a few)

Sorry for the long reply but I am over come with joy at the idea of having ME back and can't help but share in this discovery.

I really hope you can find some sort of solution. I know too well how this can cripple a person physically/mentally/emotionally. Not to mention the toll on loved ones and family who are trying to support the person inflicted.

Best wishes

 
Old 05-13-2012, 06:40 PM   #8
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Re: Constant Dizziness...30 years and counting....PLEASE Read and Help Me

Hi Don

You sound similar to me, you may have leak on one or both ears, have you had that checked.

I had the inner fistula done 4-24-12 it was a leak on my left side which I suffered from since summer of 96 and no ENTs could find my problem until 2011 I got answers. I feel my off balance mainly behind the wheel ( driving) and when turning my head all dealing with motion.

But after my surgery I felt the off balance worse than before surgery for about 3 weeks now. They place packing in your ear and now I feel it move forward and I WONDER ids that normal, can anyone answer that. My doctor ask me not to clean it let him.

When sneezing,coughing I must open my mouth, cant ever lift over 40 pounds EVER and I like to workout oh well all about my health. No jogging or hiking no sit up push up ever and no swimming ever.

Hopefully Don you can ask your ENT to do the water test..which they shoot warm water in your ear and watch your eye movment, thats how they found my leak. Now I had this same test done when I was with other insurance providers and they blew me off and the specialist were just as bad had no answer so they made me feel like I AM CRAZY so that alone had me lury about seeing other doctors.

Good luck I know what you are going through hang in there.

showtime4904

 
Old 05-13-2012, 06:44 PM   #9
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Re: Constant Dizziness...30 years and counting....PLEASE Read and Help Me

Hi Don

You sound similar to me, you may have leak in one or both ears, have you had that checked.

I had the inner fistula done 4-24-12 it was a leak on my left side which I suffered from since summer of 96 and no ENTs could find my problem until 2011, I got answers. I feel my off balance mainly behind the wheel ( driving) and when turning my head all dealing with motion.

But after my surgery I felt so off balance worse than before the surgery for about 3 weeks now. They place packing in my ear and now I feel it move forward and I WONDER is that normal, can anyone answer that. My doctor ask me not to clean it let him.

When sneezing,coughing I must open my mouth, cant ever lift over 40 pounds EVER and I like to workout oh well all about my health. No jogging or hiking no sit up push up ever and no swimming ever.

Hopefully Don you can ask your ENT to do the water test..which they shoot warm water in your ear and watch your eye movment, thats how they found my leak. Now I had this same test done when I was with other insurance providers and they blew me off and the specialist were just as bad had no answer so they made me feel like I AM CRAZY so that alone had me lury about seeing other doctors.

Good luck I know what you are going through hang in there.

showtime4904

 
Old 05-23-2012, 03:02 PM   #10
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Re: Constant Dizziness... 30 years and counting... PLEASE Read and Help Me

Please google verticle heterophoria. I had the exact same symptoms and just returned from seeing an eye specialist who diagnosed me with this.

 
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