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Old 03-10-2008, 05:58 AM   #1
Mac2
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Hi

Hi everyone

It's coming up to 4 years for me this year and I am still suffering!

I'm still having dizzy spells and moments of imbalance. Noticed somebody posting about feeling dizzy when washing dishes and I still have that feeling. Maybe it's because I don't like doing them!!! I also have problems looking in the mirror and standing in queues waiting to be served in shops, I really hate that because I feel so dizzy.
Overall I am miles better but I do tend to lead a quieter life now. I also have more allergies than I ever had.

I am due at the ENT again this month but don't hold out much hope. What I really want is a complete cure. I read somewhere that this can last between 2 and 5 years. All the websites I visited before used to say 2 years, maybe they are doing more research now and are quoting 5 years instead. That gives me a little hope that maybe, just maybe, it will be gone one day though I know many people who have suffered longer.

I personally know three people, including me, who lived on the same estate for many years and are suffering from this illness. Also, another lady I have known for many years has been suffering for about 6 years now. We all have one thing in common - we live or lived under a pylon for years. Any views on this?

Also, does anyone feel dizzy when they bend their head slightly forward, i.e. to write something down or read a newspaper? Why does this happen? It is really bugging me.

Thanks for reading my post!!

Take care

Mac2

 
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Old 03-10-2008, 09:42 AM   #2
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Re: Hi

Hi Mac, you may have a small case of BPPV. Since you've suffered so long, have you looked into migraine? It seems that more people are being treated from it and getting a great outcome on meds.

Have you've done any VRTS and hasnt helped you?

Cathy

 
Old 03-10-2008, 01:31 PM   #3
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Re: Hi

Hi Cathy

Thanks for your reply. I don't suffer from migraine as such but do get some awful pressure in my head at times. I get pain to the left side of my head above my ear now and again which is quite intense but only lasts a minute or so. I also get a trickling feeling now and again across the top of my head.

I don't actually do any of the VRTs now but I keep active. I work three days a week and go walking a lot.

I just get sick of the constant battle every day. I feel awful, dizzy, sickly and just absolutely horrible for a few hours each day and then it passes and I feel fine.


Mac2

 
Old 03-11-2008, 08:08 AM   #4
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Re: Hi

Hi Mac2

I have to say that I know exactly how you are feeling. I am just going into my third year and can't believe that I am still suffering. I have tried VRTs twice and both have seen results but now like you just try and keep active. I go treadmill running as I think that must be one of the best VRTs that you can do.
Although most people don't know what I deal with as I just get on with things, I find it a battle everyday too and sometimes it does really get to me. At the beginning it was an all day everyday thing however I know I have made huge progress and at times I do feel normal. I think the past couple of months I have gone through a bit of decompensation as I have been feeling much worse and so much so that I have remade an appointment to see a specialist who I saw last year to see if there is anything more they can do to help.
If they do advise anything new I will let you.

 
Old 03-11-2008, 10:33 AM   #5
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Re: Hi

Hi Mac.

Hang in there, it's tough as nails I'm into my 3rd year, almost 4th if I begin the count on my initial strong vertigo attack of Nov 04.

My docs told me, by a second VNG in a two year lapse, that I was much better compensated than two years ago, almost clear, but I have to tell that I feel almost the same, I even felt mildly dizzier on some visual tests during VNG than two years ago, and actually turned to my left with my eyes closed on the walking with eyes closed test, even tough my bad ear is supposed to be the right one, something that didn't happen back then.

So they said is BPPV bout, even with two unclear Dix-Hallpilke tests, even so this(BPPV) is a much more common possibility than everybody thinks, specially on vestibular injured people like us, and it can be deceiving, because it might not give you the "classic" positional awe, with strong spins, but just the occasional blips you mentioned.

If left untreated it can take months or more to get rid of it and because of your brain starts to compensate immediately, sometimes it feels like you're ok, and then the blips return.

Allergies, which can get liquid into your ear, surely won't help, I know cause I have them, and I'm in the middle of a cold, past a bronchitis, which really have stopped me cold to begin my BPPV home treatment, to see what happens.

Think of those possibilities, and of course on MAV, which can be combined, causing a whole lot of trouble in your body. The bright side is that if you get proper treatment, you could get really well.

 
Old 03-12-2008, 07:02 AM   #6
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Re: Hi

Hi Krys29


Yes, it is so frustrating when people just do not understand what you are going through. The most frustrating part is when they put it down to panic attacks. I know this can actually lead to panic attacks and I did suffer from anxiety in the early days but I have never had a panic attack and sometimes I just want to scream at them!!!

I too have an appointment with the ENT at the end of this month but would be very interested to see what your specialist says to you.

I also know I have made great progress compared to what I was like at the onset of this but I am just sick of it lingering on and on. Long periods of my days are good but for those few hours where I feel and look like cr.., I really just want to curl up and die but I don't - I try and smile through it and be brave. Not got much choice really because life goes on around you and nobody really cares!

Stargrave - I do suffer allergies and take one anti histamine pill (actrivan) every day. I never did suffer before I had this illness or during the first two years. It all hit last year and my asthma got worse. I don't suffer badly from allergies but think it may have had some effect on my recovery.

I will look into this MAV option when I visit the ENT as I do have weird feelings in my head off and on, not headaches as such.

Can you suffer from BPPV if you get dizzy when bending your head forward? I know it happens when you bend backwards. I still suffer from that though it doesn't happen everytime. On Monday I was leaning forwards doing some writing when I went extra dizzy and it lasted the whole day. That was really awful.

Mac2

 
Old 03-12-2008, 10:49 AM   #7
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Re: Hi

Actually with BPPV you could get dizzy bending or moving your head backward, forward, to a side, you name it, the change of position will trigger the dizziness. I've read and learned that MAV can give you something similar, but for the docs, at least for mine, it's more likely that BPPV gives you that kind of symptoms, knowing that a new VN episode is much more rare, and things like Meniere's have more clear symptoms, like progressive hearing loss, which I don't believe you have.

Curiously enough my "favorite" dizzy position is when I bend forward, both head and body, but specially body... And maybe we also share that the Dix-Hallpike test was negative or inconclusive, but is known that the brain can compensate so quickly that it could mask even a BPPV condition.

That's why they gave me the Brandt-Darhoff set to see what happens, something that I'll begin as soon as this new nasty colds gets lost...

Anyway you should talk with your ENT on this two possibilities, because even with proper testing, like mine which showed I was actually recovering from my 2006 episode, when I feel pretty much the same, well maybe a little bit better overall but not clear, an with this new nasty bout that they say is BPPV...

Hang in there, take notes, and tell it all to your doc to see if he suggest something new that could help you through this.

 
Old 03-12-2008, 12:16 PM   #8
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Re: Hi

Thanks Stargrave,

You are right - I have never had any hearing loss at all though sometimes my ears go a bit 'muffled' where I can hear myself talking but it seems like the sound is not me. If that makes sense.

Although I have been through the ENT route, I have only actually had a couple of tests, namely the one where they test the pressure in your ears and the one where you wear the goggles and follow the red dot on the screen. I have never had the Dix- Hallpike test. I wasn't even given any proper VRT - just a few gaze stability exercises, but I suppose by the time I actually got to see them I was nearly recovered and was doing quite well.

I have been taking notes and will hopefully get some satisfaction at the ENT.

Mac2

 
Old 03-14-2008, 05:30 AM   #9
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Re: Hi

Quote:
Originally Posted by Mac2 View Post
Hi everyone

It's coming up to 4 years for me this year and I am still suffering!

I'm still having dizzy spells and moments of imbalance. Noticed somebody posting about feeling dizzy when washing dishes and I still have that feeling. Maybe it's because I don't like doing them!!! I also have problems looking in the mirror and standing in queues waiting to be served in shops, I really hate that because I feel so dizzy.
Mac
Standing in queues has been a big problem for me too, I would go up to the counter and sway, I had to hang on to stop the movement. But it is much, much better since I started balance exercises at least twice daily, I usually do them before vrt. Yesterday I was in 2 big airport queues for passport control and I was fine, 6 months ago that would have been a real trial.
Quote:
I am due at the ENT again this month but don't hold out much hope. What I really want is a complete cure. I read somewhere that this can last between 2 and 5 years.
I think everyone recovers at a different pace but when I got my diagnosis of vn from the neuro-otology dept. in London, I was at 2 years and they said not to worry, to keep going with vrt, lots of exercise and I would improve. They say it can be anything up to 5 years.


Quote:
Also, does anyone feel dizzy when they bend their head slightly forward, i.e. to write something down or read a newspaper? Why does this happen? It is really bugging me.
I know exactly what you mean. I happened to me yesterday as I was unpacking my case, it was on the bed and I just looked down slightly, more eye movement than head movement and I lost it completely for a few seconds and I was all over the place for a couple of hours. The London neuro told me that some vn sufferers do go on to develop some positional vertigo and I have had at least one episode although I have twice tested bilaterally negative on the Hallpike test. The other thing it might be is lack of eye co-ordination - do you feel that you have actually moved your head or sometimes have you just glanced down? I have had it when doing some ironing or the dishes, so my eyes are looking down more than my head. I have worked so hard on the gaze and VOR exercises and it has been much better - yesterday's blip was the first for months. Maybe I was a bit tired after the travelling, do you find more stuff goes wrong towards the end of the day when you are tired?

 
Old 03-14-2008, 01:00 PM   #10
Mac2
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Re: Hi

Hi Dollydd

I was also diagnosed with VN in my first year of this.
Your post could have been written by me, we sound so similar!

I feel like I am swaying when I stand in queues and tend to steady myself by holding onto something, you feel so stupid don't you?

I can cope with this situation a lot better now, though I do get a little agitated if the people in front of me are taking their time or going too slow, I just want to get out of there asap!!!

I had also read somewhere that it could last for 5 years and you have been told that this is so - that gives me a glimmer of hope that it could actually go some time in the future. That would be so nice!

I think you might be right regarding the lack of eye co-ordination. I have noticed for the last few months that sometimes my eyes seem to jump a little when I am looking at something. Maybe not jumping as such but a millisecond behind, if that makes sense. And yes, I do not have to be actually bending forward, just looking down is enough to make me dizzy.

This has not been a problem for the first three years and has only been happening for the last 6 months or so. Any explanation for that?

I also have problems with doing the ironing, but nobody will do it for me!! I have only dropped one iron during all this time so I suppose it's not so bad!

My best time of the day is actually at the end of the day, I seem to feel a lot better at that time. However, when the dizzies hit, usually for a couple of hours each day, they come at different times. Over the last few days they have been hitting more and more, I don't know if I am heading for another relapse.

Take care

Mac2

 
Old 03-15-2008, 08:25 AM   #11
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Re: Hi

Quote:
Originally Posted by Mac2 View Post

I think you might be right regarding the lack of eye co-ordination. I have noticed for the last few months that sometimes my eyes seem to jump a little when I am looking at something. Maybe not jumping as such but a millisecond behind, if that makes sense. And yes, I do not have to be actually bending forward, just looking down is enough to make me dizzy.

This has not been a problem for the first three years and has only been happening for the last 6 months or so. Any explanation for that?
Mac
same for me, the eye thing didn't really bother me so much in the beginning, more recently - I describe it like my eyes are 'talking' to each other sometimes. I believe it is part of the recovery process - every part of the system has to be working together for balance to be OK and things change as we get better, and then it has to change again as it improves some more, so the brain is adjusting to a series of changes over time.

It all started to make sense when I saw my test results from the neuro-otologist. I have a right directional preponderance of 15% and also left eye catch up on saccades. I often get the feeling that my right eye is doing all the work and when I am out running I find it almost impossible to keep to the left - I find myself crashing into the bushes on my right. One other thing the neuro said was that some vn sufferers develop a tendency to over-compensate with their eyes so that is why the vor exercises are so important, to try and re-establish the balance in the reflex. Your eyes should be doing some of the work, not all of it. Have you stopped vrt? When I have my follow-up with neuro in 10 weeks I am going to discuss this eye issue and see if there is some other visual work that might help.

 
Old 03-15-2008, 12:28 PM   #12
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Re: Hi

Hi Dollydd

Yes I have stopped vrt, but didn't really get any from the ENT in the first place. Can you tell me what it is that you do? Also what are the vor exercises?

I am the opposite to you in that I veer to the left. Especially door frames and I am always cutting across people when out walking. I keep people to my right side now!

Thanks again.

Mac2

 
Old 03-16-2008, 09:38 AM   #13
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Re: Hi

Mac
The vestibulo-ocular reflex maintains stable gaze and visual focus during motion and the exercises are to improve the accuracy. Your problem with dizziness when you gaze downwards may be to do with this – the vor gets in a mess because of vn/labs. I do the following:

Hold something (your thumb will do, I use a pencil with an eraser on the end or a business card and focus on one letter) at arm’s length and move head from side to side. Repeat up to 30 times, start slowly and increase speed. Do it vertically and diagonally also. Make it progressively more difficult: start sitting down if doing it makes you very dizzy, then move on the standing with feet apart, then with feet together. Having one foot in front of the other makes it really difficult. Then you can progress to a slightly wobbly surface, like a cushion. Also at the beginning start with a plain background and progress to a busy one. All the exercises should progress from easy conditions to more difficult.

Then move the object to the left while you move your head to the right and then to the right while your head goes left. Also do this vertically.

These two exercises are for vor stimulation and then for ocular motor I do:
Keep the head still while you move the object from left to right, do the same thing vertically and diagonally.

To improve saccade latency, velocity and accuracy:
Hold a business card in each hand, at arm’s length and about 15 inches apart. Keep the head still and move the eyes back and forth from card to card, focusing hard on just one letter, one second per card. Do this vertically and diagonally as well. (I noticed a big improvement with this one)

I also think throwing a ball from hand to hand and tracking it with the eyes has helped a lot.

Then for balance I do:
Heel to toe walking, first of all looking straight ahead, then moving head from side to side and up and down. I do a minute in each condition.
Stand still with your eyes closed for one minute. With eyes closed move head from side to side and up and down. Open eyes and repeat.
Stand for one minute on one leg in turn.

I do other stuff but these are the main ones. Some of them I could hardly do when I started, only managed a few seconds. My neuro-otologist reckons there is no reason to stop vrts. He likened it to staying fit. If you exercise to get fit then stop you will just get out of shape again. He says once you’ve had vn you are always more fragile in the balance department and under certain conditions there will be blips. But by keeping the vor system ‘fit’ you reduce the likelihood to the minimum and for all intents and purposes you are 100%. The pt who instructed me in vrt said to allow 18 months from the time of starting vrt before you even think about stopping. The neuro has referred me to their own pt department because they want me to do their exercises and to make sure I do them right but I am still waiting for that appointment. Why don’t you ring around in your area and see if you can find a pt who has some experience in neurological rehab and have a couple of sessions. I am sure it would help.

 
Old 03-18-2008, 11:06 AM   #14
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Re: Hi

Dollydd

Just to say thank you so much for taking the time to post all that info.

I did get some gaze stability exercises from the ent a couple of years ago but didn't do them for long. When I started feeling better, I stopped! What you say makes a lot of sense and I have printed off your post and will get straight back into doing this stuff. Thanks again

Mac2

 
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