Hi, after having a good spell, I spent yesterday with the rocking,jerking being pretty bad. Last night, I started to fix supper and WHAM--the room started spinning, slowly, but it kept on spinning--like a minute. I was so scared, I started shaking and got my heartbeat up to 126. Had my daughter help me sit on the floor--I could not walk, as the room was spinning. This passed, got up and it didn't happen again. I went to bed and no spins. So far this morning, just mild rocking but I am shakey and still a little scared. Any ideas--SUBS, any info would be appreciated. Thanks, Belle

Hi Belle

Had that happen to me---many times(strange mostly in the Kitchen)---during the BPPV phase---standing at the sink---looked out the window---next thing I know---I am sitting on the floor---think I might have moved my head or looked up or down---not sure---since any of those could/would cause it---but it never had any lasting affect---just needed to be careful---how I moved---my head---or looked up or down---that only begin to happen to me toward the end of the BPPV phase---i.e., after the vertigo was subsiding---it(vertigo) was still there--occasionally--but not often---but---until the BPPV---went---had to be careful how I moved or where I looked---did not have any increase in heart rate---that I can recall---but remember---the rocking/rolling/spinning---after being at sea for so long a time---I guess--sort of dampened---the shaky/scared---part of all of it---even after all that junk---went on to 100% :D ---and you will to!

:cool:

Thank you Subs, I have been so scared. Still am shaky but have not had any spins today,Thank God. I still feel like everything "wants" to spin and my vision seems more blurry. This stuff can sure send your self confidence down the tubes...Thanks again...Belle

Hi Belle


....."can sure send your self confidence down the tubes".....

Perhaps---but don't forget the--

........."two victories".......

You will beat it---two will become three---which will become 5 which will be come.......oh--for sure there will be some setbacks along the way---we all get them......5 will become 10 and 10 will become 20.....and one day(prob not to far away)---it will be victories 24/7----just---understand the bad---but/and always remember---to collect and save(savor) the "victories"---the "two victories" you posted sound it pretty good to me----and I at 100% :D ---just think of how they would have sounded to some others---that are in the beginning of this---and have not had a "victory" yet---so for them---your self confidence looks ---like "gang busters"----so to speak!!

:cool:

Subs, oh Thank you--I needed that. Was feeling so very low, scared all over again....THANKS, Belle

Hi, Belle-

So sorry for your setback, especially since you had such a good day! Spinning is the one thing that strikes terror in my heart. The feeling that you are going to spin is bad enough and can send my heart racing!

Something that the balance therapist from Chicago told me is that if I ever have a spinning episode get right back into the vestibular exercises. She said if I will start right away the recovery will come alot faster. I don't exactly know which ones you are doing but thought you might want to know that.

I am praying for you!!! I am praying that you can have peace and calm which we so desperately need when we have these episodes!

Take care!

Vicki

Hi Vicki, Thank you so much. You said it just right--it did strike terror in my heart. I don't know why it scared me so bad except that it lasted so long.I have been doing the cawthorne-cooksey and a few others. Thank you for the prayers--I am in much need of them.Please keep me in yours. Thanks, Belle

---the shaky/scared---part of all of it---even after all that junk---went on to 100% :D ---and you will to!

:cool:

Subs -

How long did it take for you to get to 100%?

Mary

[QUOTE=mary111]Subs -

How long did it take for you to get to 100%?



Mary

It started happening about 13th month and by the 14th month I was back to 100% :D

My problem was "VN w/BPPV" which occurred last week of Jul 02.

:cool:

[QUOTE=mary111]Subs -

How long did it take for you to get to 100%?

Mary

It started happening about 13th month and by the 14th month I was back to 100% :D

My problem was "VN w/BPPV" which occurred last week of Jul 02.

:cool:

That's wonderful. I'm at 12 1/2 months of something. No one has given me a diagnosis but I was having BPPV. That has been getting less and less but I'm still "off" 24/7 and my vision still has blurriness that it did not have before Nov 02. I described to a friend that it's like if dizziness is a moving spiral and normalness is the still center of the spiral - I got stuck somewhere out on the arm of the non-moving spiral. I'm not dizzy - just not normal. The BPPV was every day for 6 weeks, then every few months and would last a few days. Now it might happen once or twice every few months.

What exactly is VN? What happens to the vestibular system?

Thanks.

Mary

Hi Mary

...."What exactly is VN?"......

The syndrome of acute, prolonged vertigo of peripheral origin is commonly called vestibular neuritis, although other terms such as "vestibular neuronitis," "labyrinths," "neurolabyrinthitis," and "unilateral vestibulopathy of unknown cause" have also been used. The vertigo typically develops over a period of hours, is severe for a few days, and then subsides over the course of a few weeks. Some patients can have residual nonspecific dizziness and imbalance that lasts for months. The condition is thought to result from a selective inflammation of the vestibular nerve, presumably of viral origin. The facts that the disorder often has a viral prodrome, that it occurs in epidemics, that it may affect several members of the same family, and that it occurs more commonly in spring and early summer all support a viral cause. Postmortem studies have found atrophy of the vestibular nerve and the vestibular sensory epithelium that is similar to the pathological findings with known viral disorders of the inner ear, such as measles and mumps. Several viruses selectively infect the labyrinth, the 8th nerve, or both in animal models.

A common feature of vestibular neuritis is selective damage to the superior part of the vestibular labyrinth (horizontal and anterior semicircular canals and utricle) supplied by the superior division of the vestibular nerve, with sparing of the inferior part (posterior semicircular canal and saccule) supplied by the inferior division.8 Benign paroxysmal positional vertigo (originating from the posterior semicircular canal) often develops as a sequela even if the patient has no remaining function in the horizontal or anterior semicircular canal. Selective inflammation of the superior division of the vestibular nerve or anatomical differences in the bony canals of the two divisions might explain this relative vulnerability.


..."What happens to the vestibular system?"....

Recovery from a peripheral vestibular lesion results from a combination of the restoration of peripheral labyrinthine function (which is usually incomplete in the case of vestibular neuritis) and central vestibular compensation for the imbalance in vestibular tone. In other words, patients will typically get better even if they have a permanent unilateral loss of vestibular function. Recovery from vestibular neuritis typically takes several weeks, although longer periods of recovery are not uncommon. Clinicians have long felt that vestibular compensation occurs more rapidly and is more complete if the patient begins exercising as soon as possible after the occurrence of a vestibular lesion. The goal of vestibular exercises is to accelerate the process of vestibular compensation and improve the final level of recovery. Controlled studies in animals and humans indicate that exercising can accelerate the recovery of balance after a peripheral vestibular lesion, but data are lacking with regard to the final level of recovery. In animals, compensation seems to be accelerated by stimulant drugs (e.g., amphetamine) and slowed by sedating drugs (e.g., diazepam). Whether more frequent exercise leads to faster improvement is unknown.

A vestibular exercise program typically includes exercises designed to improve ocular stability and balance. While nystagmus is present, the patient should try to suppress it with fixation in all positions of gaze. As the nystagmus diminishes, eye-and-head–coordination exercises can be started (e.g., staring at a visual target while oscillating the head from side to side and up and down). Combined movements of the eyes and head involving jumping quickly back and forth between two widely separated targets are also useful. The patient should try to stand and walk in contact with a wall or with assistance in the early stages. As improvement occurs, head movements should be added while the patient is standing and walking; these head movements should be slow at first and later rapid and in all directions. Balance exercises such as walking with one foot placed directly in front of the other or walking on a narrow beam can then be added.

Mary the bottom line is:

VN causes the BPPV---by weakening the inner ear---when the BPPV is overcome---you are still left with---damage to the 8th nerve---vestibular nerve---which is corrected(over time) through---regeneration of the portion of the nerve--that was destroyed and through the brain compensating for the bum vestibular signals---until---the nerves regaining functionality---it takes a long time--for all of this to take place---for most---but---for some---it takes less time---it all depends on---how badly the 8th nerve is damaged by the virus--that infected it.

The other aspect of all of this---no matter whether it is BPPV, Lab, VN, or whatever is the:

COGNITIVE ASPECTS OF VESTIBULAR DISORDERS

Patients and families, of course, have known for a long time that vestibular disorders bring about cognitive difficulties. Some psychologists and neurologists have now begun to recognize and study a number of cognitive disturbances associated with vestibular disorders.

Cognitive disturbances involve a difficulty in basic mental operations such as memory, paying attention or focusing attention on something, and in prolonged concentration. They also involve shifting attention from one subject or idea to another. People with cognitive disturbances have trouble in perceiving accurate spatial relationships between objects, in comprehending or expressing language, and performing calculations, and in a number of other areas.

People often refer to this as brain fog, light headiness,just don't feel that I'm with it, feel like I drink to much, etc....

All of that stuff is a result of the brain---being in---hyper drive---if you will---trying to sort out the bum vestibular signals--- it is receiving at it's equilibrium center---this diminishes---as things start to correct.

:cool:

Subs -

Thank you for posting that information. I don't know what I have (no one has been able to figure it out) but it does sort of feel like an inflammation of some sort. A neuro-otologist ordered a bunch of tests and they all came out normal. He was kind of a dud - not very interested in what was wrong.

I had "TMJ" (jaw muscle pain) for 7 months previous to this. It seemed to affect my ears or ET somehow.

I wish I could find a good medical detective.

Mary

Hi Mary

..."I wish I could find a good medical detective."....

In this medical area there are only a few in the US they are:

--Univ of Penn, Balance Center in Philadelphia(Dr Shepard)

--John Hopkins Univ Balance Center in Baltimore

--Northwestern Univ in Chicago(Dr Hain)

--One or two in the LA Calif area---names escape me now

--Couple up in the Portland Or area...

If you were to ask the medical type who practice in this area---of the above---which are the best---most would say:

Nr 1---Dr Hain at Northwestern

Nr 2---Dr Shepard at Univ of Penn

Nr 3---John Hopkins for balance---but Nr 1 for hearing inplants

Etc.......

Shepard invented most of the tests---and---Hain has used most of those tests to define and determine the various clinical aspects and come up with treatment.

..."neuro-otologist ordered a bunch of tests"...

Do you remember what the name of the tests were??


..."I had "TMJ" ......It seemed to affect my ears or ET somehow."...

Yes TMJ---is known to---have---inner ear like symptoms---very similar to---having an "inner ear" infection----Hbep---and others are up that.





:cool:

Do you remember what the name of the tests were??

:cool:


The neuro-oto ordered:
hearing test
tympanogram
abr
ecog
computerized sensory organization test
eng (but I skipped the caloric test)

other doctors ordered:
brain ct scan
brain mri
tmj mri
various blood tests
basic neurological testing

So far the only thing that showed up abnormal on the blood tests was high titers to the Epstein-Bar virus. I wondered if the virus was causing any of this but no one knows.

Not long after this happened to me, I came across Dr. Hain's webpage. I felt tempted to fly out to Chicage (I'm in NY) but I just didn't feel well enough (and I still don't).

Mary