For those who don't remember me I have been suffering with vestibular problems for about 20 months.

The thing that really gets me is the back steps. I don't UNDERSTAND. Can someone explain to me why the dizziness gets worse as soon as I reach I point where I think I can handle this nicely.

I can understand if I became unactive for a period of time, or got the flu or was set off by a plane trip etc but nothing like that causes it with me.

I also find that on somedays if I am feeling bad and push myself to be active I feel heaps better (but strangely not as good if I am sitting still) and other days if I push myself I feel heaps worse. Its hard to know the best thing to do.

Its crazy, I would of thought that after 20 months I would understand this thing but I dont.

Some days driving makes me feel better, other days it makes me much worse. Where's the logic in this illness!!

Anyone got any answers??

Leigh

For those who don't remember me I have been suffering with vestibular problems for about 20 months.

The thing that really gets me is the back steps. I don't UNDERSTAND. Can someone explain to me why the dizziness gets worse as soon as I reach I point where I think I can handle this nicely.

I can understand if I became unactive for a period of time, or got the flu or was set off by a plane trip etc but nothing like that causes it with me.

I also find that on somedays if I am feeling bad and push myself to be active I feel heaps better (but strangely not as good if I am sitting still) and other days if I push myself I feel heaps worse. Its hard to know the best thing to do.

Its crazy, I would of thought that after 20 months I would understand this thing but I dont.

Some days driving makes me feel better, other days it makes me much worse. Where's the logic in this illness!!

Anyone got any answers??

Leigh
hi i know exactly how you feel have lab for over two years now and had a really good patch other christmas and the new year and no symptoms at all now i am having a bad patch of brain fog and it really gets you down also on my affected side i seem to have more aches and pains than normal if you know what i mean and i think the worse thing is that no one knows how you are feeling cause they cant see what is wrong with you i hope that you beat this horrible thing x :wave:

Hi Leigh

..."suffering with vestibular problems for about 20 months."....

..."thing that really gets me is the back steps."......

..."....why the dizziness gets worse as soon as I reach I point where I think I can handle this nicely.".....

20 months is a significant amount of time---not unheard of......

What tests did you have and what was their(Doc's) diagnosis and what type of Doc gave it,i.e., ENT, GP, Neurologist, Nuerotoligst......and what procedures where done by them??

Kind of sounds like---you start the final stages of compensation--and get a "reset" of the process..........

:cool:

Hi Leigh - am only 4 mths behind you and am also still suffering ... As subs said it certainly is not "unheard of". Ilia's London specialist said she saw people with it for decades who had not been properly treated (VRT).

This illness certainly has no LOGIC whatsoever. One of the nastiest things about it I think...as well as the invisible nature as Molly's Mum says. Very few people understand.

See a good ENT or Neurotologist and if you are in doubt go for a 2nd opinion.

Hugs xxx

Thanks for the replies

I have seen a huge variety of people. But have been diagnosed with right vestibular damage. I have had the calorics, eng 3 times now over the past 20 months. The first one they found nothing, the second they thought was suggestive of vestibular problem on right side and third was definate right vestibular damage.

Unfortunately there are no neurotologist where I live and have seen every person with any knowledge in this area. Have pretty much hit a brick wall.

Have tried VRT before but am not doing it at present. I was doing it for 6 months and then the specialist decided that it wouldn'r help me because I must have brain problem and sent me to neurologist but of cause that is all clear.

I should probably try it again but it didnt seem to help me at all, I try to have an active life as much as possible.

Who knows - even if it stablised so the symptoms didnt get worse I think it would be easier.

Good luck to all.

Mollysmum - I am so sorry that this has hit you again. It is such a disappointment when it comes back again.

Hi Star803

..."have been diagnosed with right vestibular damage."....

Did anyone of the many people(Doc's) you saw say what they thought caused the damage,i.e., viral infection, etc.... and did any of them give the damage a name,i.e., BPPV, VN, etc....?? Did you get copies of the tests??

It would not be all that unusual---(if it was BPPV)---for this type of scenario to be happening----especially if the Epley or some of the other maneuvers were not done....and even if they were done....some times it is necessary to do them more then once......especially if they were done by an inexperienced person.....

..."there are no neurotologist where I live".....

How about one---were you don't live??

......"The thing that really gets me is the back steps. I don't UNDERSTAND. Can someone explain to me why the dizziness gets worse as soon as I reach I point where I think I can handle this nicely."......

The medical "cook book" says:

"Often people wonder why their dizziness is sometimes gone and sometimes not, or why their hearing symptoms come and go. There are a number of generic explanations for these things, which are outlined below.

allergy (pollon counts)
seasons (for example, certain Migraine syndromes occur seasonally).
SAD -- seasonal affective disorder
Interactions with other disturbances
other diseases such as colds may cause the vestibular or hearing deficit to worsen
fatigue and stress
foods
medications (many medications impair balance and several also impair hearing)
heat (i.e. in MS)
allergy status
change in glasses"

Not much help there......but that is what it says.........

The fact that you compensate to a point & then reset---is key---I think--and the fact that it appears to be repetitive,

i.e., start to overcome it--get to a point of thinking your wining---then get a set back and then if I understand you--it then repeats....getting better...get a set back.....getting better....get a set back.......etc..........and with no defining/discernible happening tied to the set back.......


Your ability to maintain your balance depends on information that your brain receives from three different sources -- your eyes, the muscles and joints of your body, and your inner ears. All three of these sources send information in the form of nerve impulses from sensory receptors, special nerve endings, to your brain. This is the sensory input that has to do with balance. And then all of that needs to be integrated---as in:

The brain stem also receives input from two other areas of the brain -- the cerebellum, which is your coordination center, and the cerebral cortex, which functions in thinking and memory. As the brain stem is integrating all the input it receives concerning balance, the cerebellum may contribute information about automatic movements that have been learned through constant practice, e.g. adjustments in balance needed to serve a tennis ball.

The cerebral cortex contributes previously learned information. For example, you have learned that icy sidewalks are slippery and that you have to step on them in a different way in order to keep your balance.

Sometimes the integrating activities that take place in the brain stem are more complicated than at other times. For instance, there are times that the sensory input that we receive from one of the sources conflicts with the input from the other sources. This may occur when you are standing next to a bus that is pulling away from the curb. Your visual input from the bus may be indicating to your brain that you are moving. You may find yourself leaning forward a little to compensate for that sensation. You may even feel dizzy. But your muscles and joints send input that you are not moving, and other visual input finally indicates that other objects are stationary, and a correction is made.

As integration of all the sensory input takes place, the brain stem sends out impulses along motor-nerve fibers that begin in the brain stem and end in the muscles. These muscles make your head and neck, your eyes, your legs, and the rest of your body move and allow you to maintain your balance and have clear vision while you are moving.........so------with all of that taking place------------

It is not unusual during compensation....to have some...progress forward...followed by a couple of steps back....

compensation is not a

"linear process"

...the vestibular system interfaces with to many other(outlined above) physical system for that to happen linearly...but usually---for the vast majority of people---the "set back"...is not really a set back

---it is just the brain's equilibrium center dealing with one of the other physical systems---that---it(brain) has had to ignore

--(due to a lack of processing power to handle more tasks)

---after finishing up with the one it's been working on--it moves on to the next physical system-and "course aligns" it--etc.....---and finally gets to a point of integrating and fine tunning them all......

---so it(brain's equilibrium center) can make sense--out of where your body is in "space"....

And---you can not pin down the "reset" event to a particular "happening"???

:cool:

Hi Subs

Thanks for your in depth answer.

Initially the doc's said labrynthitis, but now they just say right vestibular damage, so I had always assumed that the cause was viral.

I know they have never mentioned BPPV and have had that tested a few times. Do you know whether it always shows up or do you have to have displaced crystals at the time of testing for it to be apparent??

This morning I woke up with severe vertigo, which is worst when my head is to the right or tucked down towards my chest. This is very unusual for me, I have only had vertigo once before like this. Usually it is more visual, balance problem.

I have a copy of the latest test however it means nothing to me. Basically it says that the caloric results "demonstrate a significant right canal paresis, suggesting a right peripheral lesion". And it also has percentages etc which I don't understand.

Australia is a bit behind the 8 ball when it comes to neurotologists. There are none in my state at all. I would have to fly to the other side of the country and I don't know if they have any either and I don't have any money left. All of my savings have been depleted by this illness. So trying to find another opinion is not really an option for me unfortunately. America does seem like the place to be! While searching the net I have come across lots of dizzy and balance centres in America!

I really can't put the back steps down to anything. I havent had a cold, flu etc since being dizzy. I don't have allergies. I have been to specialist opthamologists to see bout glasses. I just can't put my finger on it. Just before I hit this currentbump my vision had improved to the point where I was alot happier in the shopping centres. Far from perfect but it was almost enjoyable! Which was very exciting. But no more, again with the backwards steps!

Thankyou for your explanation though. It is much appreciated. I just have to try and look forward to improving again.

Any ideas about why the vertigo has come on all of a sudden?

Thanks and have a good weekend!

Leigh

Hi Leigh


..."do you have to have displaced crystals at the time of testing for it to be apparent??"....

Not always---kind of depends on their size---they kind of break up--sometimes---into micro pieces-----even after---they have dissolved or reattached---the semi circular canals---are very sensitive---from their(ear rocks/pieces) moving around in the canals.....


..."caloric results "demonstrate a significant right canal paresis, suggesting a right peripheral lesion". .....

That sounds like mine-----which---turned out to be BPPV---after the Univ or Penn---got a hold of me----yanking me away from the ENT Doc--who was always looking at me and saying something like--"it will go".....turned out he was the one that had to "go"......

..."severe vertigo, which is worst when my head is to the right or tucked down toward my chest"....

Did any of these Doc's do the Epley on you????? And have you looked at the Home maneuvers??

.."Australia is a bit behind the 8 ball when it comes to neurotologists"....

Dido---here also---just lucky---I live close to a big city(Philadelphia) where there are major medical research facilities---like Univ of Penn---it is about 40 miles away but worth the trip..........


...."Any ideas about why the vertigo has come on all of a sudden?".....

Yep---but it is just a guess----when that was going on with me

---my guess was-----the ear rocks or pieces---were moving around in the canal---causing it

......after I did the home maneuvers (five sets three times a day).....the vertigo....stopped

.....took another bit of time..for the sensitivities in the canals..to subside but it did....just a guess

........but--it sure sounds like something is lose---in the canals.........for that type of an event to happen

......I know other things could be the cause of it....but the probabilities would suggest......they would not be the cause.......but still just a guess.......

Further if it is BPPV---and the ear rocks or fragments of them are leaving and reentering the canals--as a result of head positions----it might explain the set backs----it would not be all that unusual in a BPPV situation---for that to be taking place....if the proper manuveurs..followed by the proper treatment had not taken place.............

:cool:

Hi Leigh,

Where abouts are you in Australia? It sounds like you may be on the west coast. I know money is something you said you were low on at the moment but if you can get to Sydney at some stage you should visit the Department of Neuro-otology at Royal Prince Alfred Hospital, Newtown. There is a doctor there named Dr. El who is a neuro-oto. I may be seeing him in another month depending on how I'm going. They can also do a pile of tests over there (I had a caloric test done there). Probably not as advanced as the U of Pennsylvania but still good. Also near RPA is an otolarynologist named Prof Gibson. He specialises in hearing problems but has great knowledge of the inner ear and has a lot of research published in the literature. He ran an ECOG on me to rule out Meniere's/hydrops. The waiting time for either one of these docs is about 3 weeks. They both charge $180 for the first visit. Regular testing by referral at the "RPA dizzy clinic" as they call it (ENG etc), is free by referral.

All the best.....Scott

Hi Subs and Scott

Thanks for the replies. Scott I will keep in mind the Sydney clinic but I live in Perth, WA so it is a 6 hour flight not to mention accomodation costs etc. I think that will have to wait until I can save some money.

Subs - I have looked at the home exercises. Am a little scared of moving my head around at the moment! Which is better the epley or brandt daroff? I have never had either performed on me by doctors as they never thought I had bppv.

Cant write much as am very dizzy today.

Thanks guys

Leigh

Hi Leigh

.............."Which is better the epley or brandt daroff?".....

Think the epley is normally done by the Doc & the Brandt Daroff is done at home---if the epley does not work-------they are "arduous" as it says below:


Home:

The Brandt-Daroff Exercises are a method of treating BPPV, usually used when the office treatment fails. They succeed in 95% of cases but are more arduous than the office treatments. These exercises are performed in three sets per day for two weeks. In each set, one performs the maneuver five times.

These exercises should be performed for two weeks, three times per day, or for three weeks, twice per day. This adds up to 52 sets in total. In most persons, complete relief from symptoms is obtained after 30 sets, or about 10 days.

When performing the Brandt-Daroff maneuver, caution is advised should neurological symptoms (i.e. weakness, numbness, visual changes other than vertigo) occur. Occasionally such symptoms are caused by compression of the vertebral arteries. In this situation they advise not proceeding with the exercises and consulting ones physician.

Think I would talk it over with your Doc(s).......first.......

Hope your feeling better.......hang in there----it does go----just takes a while---after you/they pin down---what the problem is

.....most medical types are not very good at that

------but---since you live with it 24/7---if you read and understand the ins and outs---of the "inner ear" drill

----you will prob be in a better position then they(medical types)---to know---with a high level of probability----what it is.........long before they(medical types) will!!

---get informed & then go with your with your "gut feeling"---my guess is---that if you have done your "homework"---you will "nail it"..........:cool:

.....then you will overcome it....and then move on to the next problem....(they always seem to be there--waiting)....which hopefully will be of a less "character building" nature....!!!!----and allow for some FUN:cool:

:cool: