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  • Been for my first visit to the VRT guy.....

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    Old 04-02-2005, 03:17 AM   #1
    spikey
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    Been for my first visit to the VRT guy.....

    And FINALLY, someone who understood exactly what I was talking about when describing symptoms etc and also someone who seemed to be able to give me a pretty good explanation of what's going on in my head!

    Just a quick recap for those who haven't read any of my previous posts - I first had violent vertigo attacks in June 2001, which was eventually diagnosed as BPPV. In the (almost) 4 years since, have had recurrent attacks of BPPV, plus the 24/7 off-balance/dizziness/visual problems etc, plus the usual barrage of tests, visits to specialists, GPs etc with no result. After the latest attack, the worst I've had for a very long time, two days ago I was very glad I had my appointment with the VRT guy the next day!

    After the severe attack, I was worried about getting to the appointment, especially as I woke up to it blowing a gale and pouring rain, as I had to get there and back by train and taxi, but then received a text message from my wonderful, wonderful BF at 7am to say he was taking the day off to take me to my appointment. There's not a day goes by when I don't thank God, or karma, or whatever it was that brought him into my life!

    Anyway, the appointment took about 1 1/2 hours. This guy is a physiotherapist who specialises in the treatment of vestibular problems. He did heaps of testing - it was the first time I've ever worn those horrible goggles, they made me feel dreadful, but a necessary evil I guess. Anyway, he said there was no sign of nerve damage which rules out VN and lab, and that my problems primarily appeared to stem from BPPV, although there may be some MAV going on in the background as well seeing as I have had migraines for many years. What I've always found most upsetting (apart from the 24/7 symptoms) is the recurrent attacks of BPPV. I'd had the Epley done twice, but it just keeps coming back, after going 6-8 months last year without a bad attack, I'd had 4 in the past 3 months or so. Waking up to one of those attacks is one of the most terrifying things that can happen, as far as I'm concerned, especially when it just comes out of the blue.

    Anyway, after all the testing, he said it appears the problem is with the otolith organs (the utricle and saccule) in the inner ear. These are the organs that sense gravity and motion and send the appropriate signals to the brain via the vestibular nerve. (within these organs are the sets of hairs attached to the stones or rocks - called otoconia - the basis of the vestibular system, I guess). Sorry, it's a pretty rough explanation, but you get the idea! Anyway, the outer layer of these "stones" is only loosely attached and can fall off into the inner ear. These are the nasty little crystals that end up in the canals and cause all the problems for us BPPV sufferers. My VRT guy said in some people, the otilith organ/s can be "undernourished" by a nerve or artery, and so do not work properly, they also tend to "wither" a little and keep casting off these crystals. It is usually a congenital thing, something you can be born with. So instead of it being a one-off thing, as happens for many BPPV sufferers where once the crystals are moved out of the canals, no more problems, for some of us it seems the recurrent attacks occur because more crystals are being cast off from time to time and keep getting into the canals. I also have very little coordination for throwing/catching/hitting things when playing games or sport and also suffer from motion sickness - both of these things ever since I was a child - and he said damage or problems with the otolith organs could well be the cause of that. It all makes sense to me, and finally seems to be an explanation as to why, after 4 years, I cannot seem to keep the BPPV attacks at bay. These organs also degenerate as you age, and the same thing can happen with the continual "shedding", so maybe that's why many older people get BPPV as well.

    He has given me several exercises that work directly to stimulate the otolithic organs and also some gaze stabilisation exercises as well (as I have considerable visual problems) - he said my treatment will be a challenge, but he is hoping to achieve up to a 90-95% improvement. Whether he can or not remains to be seen, but at least now I have some hope and feel that I have someone who can give me some help. It was a very long appointment and I was pretty "spaced out" by the end after all the provocation of the testing (and the bad attack the day before) but I gather these exercises will stimulate these organs into working properly and should reduce considerably the instances of these crystals coming loose.

    I started doing the exercises today and feel pretty "heady", I feel fine for a while and then suddenly get those "swimmy" feelings and my eyes feel funny (like I do right now, sitting here typing this!).

    I was very interested in this explanation, it's the first time I have seen or heard anything like this from a GP/specialist etc, they all just told me I was one of the unlucky ones, it was going to take time and I'd just have to wait it out. Well, I've been waiting it out for nearly 4 years and it ain't stopped yet and obviously was never going to if my VRT guy is correct (and as I said, it all makes sense to me!), in fact things would only have gotten worse.

    I go back to see him in 4 weeks - the VRT takes a fair bit of time and makes me feel yucky (although not as bad as I feared) but I will be doing it religiously every day - after all, I've got nothing to lose and so very much to gain if it works!

    So keep your fingers crossed for me guys and girls, and let's hope maybe this might be a valid diagnosis not only for me, but maybe for some other long-term BPPV sufferers as well.

    Have a good weekend

    Julie

    Last edited by spikey; 04-02-2005 at 08:07 AM.

     
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    Old 04-02-2005, 03:48 AM   #2
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    Re: Been for my first visit to the VRT guy.....

    Hi Julie,

    That's all really interesting info. Good luck with the VRT....sounds like you'll be in the 90% range before you know it. Have you tried the MEP as a way of keeping things clear? I think Subs does this daily as a preventitive measure but not sure how successful it is for that purpose alone...might be worth adding as a daily exercise.

    Cheers...Scott

     
    Old 04-02-2005, 03:51 AM   #3
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    Re: Been for my first visit to the VRT guy.....

    i had my first visit to see my physio on thursday to,have been given exercises which make me feel terrible to,but have been told its normal and shows that they must be working,i was also told alot of imformation about how the ear and brain work together,so my exercises are to retrain my balance to work in junction with my other balance senses,i pray it works cos i have been un-balanced for 10mths now and its killing me,have been very bad all week and went out today for the first time and i struggled badly,un-even floors and swaying,but im proud of myself for doing it,i truely hope you are sucssesfull in your path you are following as i hope i am.

    good luck.

    nikki.

     
    Old 04-02-2005, 06:38 AM   #4
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    Cool Re: Been for my first visit to the VRT guy.....

    Hi Julie

    Great write up-----Tks----and---you just made one of the smartest moves---you can make to dump this junk

    ----also---a well done to ur b/f---sounds like he has his head screwed on right!!!

    ---every thing I have read/researched/experienced---says---the VRT person---is right on the $$$

    ----think you took the first step on the road to full recovery(along with C/L)

    ---and the most important thing is

    -----like C/L(and others)you guys----decided to take action

    ---to break the endless loop that this junk can suck you into

    ----- and then followed through and-------took the action!!!

    Good Show!!

    Scott---yep MEP at least once/wk---or more if---I think it is necessary....still at 100%---been---almost 1 1/2 years now---so---about 1 1/4 to get to 100% and 1 1/2 yrs of pure 100%.......knock on wood!!!!


     
    Old 04-02-2005, 07:35 AM   #5
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    Re: Been for my first visit to the VRT guy.....

    Hi Julie--GREAT going and I do pray this is your ticket out!!!! Exactly what exercises did he tell you to do? CONGRATS on getting some sound answers. Belle

     
    Old 04-02-2005, 09:03 AM   #6
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    Re: Been for my first visit to the VRT guy.....

    He sounds like he knows what hes talking about spikey - good luck with the VRT. xxxx

     
    Old 04-02-2005, 11:35 PM   #7
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    Re: Been for my first visit to the VRT guy.....

    Thanks for the encouragement, everyone. I am so hoping that some good results will come from this, but of course you know how pessimistic this head monster can make you, and I tend to swing between "Yay, finally getting some help and maybe I'm going to get rid of this thing" and "but what if it doesn't work, what if I have another bad vertigo attack, etc etc". I try to be as positive as I can but it's so hard after such a long time.

    Scott:
    Yes, I have used the MEP. I used to use the Brandt-Daroff exercises, which I found worked well when I had a BPPV attack, and used to do them sporadically whenever I was starting to feel really "off". I then read about the MEP, which is not as arduous and time consuming as the BD, so started using that instead, tried doing it as a preventative for a little while but of course, seeing as I was going Ok and didn't have any attacks, I didn't keep it up! Silly me. Unfortunately when I had the very severe BPPV attack a few days ago, the MEP did not seem to be working - after 3 or 4 repetitions, the spinning had hardly lessened at all, which panicked me, so I used the Semont (which I hadn't done before), which is a more vigorous exercise, in an attempt to shift these rotten little crystals out. It seemed to help, although I was still getting bad spinning when I tried to lie down, so sat up for a while and managed another lot of MEP later on before the bad spins finally stopped. I started using the Brandt-Daroffs again, as this is also a more "vigorous" exercise than the MEP, thinking that maybe I need something like this to shift these crystals on some occasions. The VRT guy approved, and said that I should continue to do the BD exercises at least once a day for the next few weeks, so I'll continue to do them at least until I see him again, and if they are successful, continue them as a preventative.

    Nikki:
    Good luck with your exercises - I know they make you feel so awful but as you said, you have to retrain your balance system and this seems to be the only way to do it. Good on you for getting out and about, I know exactly how scary it is trying to make your way around when it seems the world won't hold still, and you certainly should be proud of yourself.

    Subs:
    Glad to hear that you think the VRT guy seems to be on the right track - I was a little uncertain at first when he was explaining it, as I said I had never heard of anything like this from the multitude of doctors, specialists etc that I had seen, but it all seemed to make so much sense. You have had so much experience with all this and have read and researched in-depth into it all, so it makes me feel even better about this diagnosis when someone like you feels it is a valid one! I am proud of myself for finally taking this step and thanks so much for encouraging me and "cheering me on"!

    Realbelle:
    Sorry, haven't got time to finish this post as BF has just arrived! Will post the exercises in the next couple of days.

    Julie

     
    Old 04-03-2005, 04:13 AM   #8
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    Re: Been for my first visit to the VRT guy.....

    Hi JUlie

    Just wanted to say that im really happy that seeing alex was a positive experience for you!! It is probably a good thing that your bppv flaired up just before your visit because he would of been able to see all your symptoms......I know when I first saw him I had no obvous signs of bppv and it took a few months for me to get an appointment just when the bppv was firing up good and proper!!

    What exercises did he give you??

    Hope you had a good weekend....and again i'm really pleased it all went well and you know have some answers FINALLY!!

    Leigh

     
    Old 04-03-2005, 04:48 PM   #9
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    Re: Been for my first visit to the VRT guy.....

    Hi Julie
    Thanks for all of the information.
    I had a bad bout of BPPV last summer, and have been on and off with the spacey dizziness since finally discovering the MEP. Did you VRT guy give you any prognosis or preventative measures? It sounds like your case is congential, so does he still want you to do the MEP when you are symptom free? I still do them every couple of days to help keep it at bay but don't know if I am actually doing anything.
    I am trying to work prevention into this and know staying stress free is a big part of it, but what else can we do to prevent other attacks?
    thanks again

     
    Old 04-04-2005, 06:17 AM   #10
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    Re: Been for my first visit to the VRT guy.....

    OK, the exercises the VRT guy gave me were:

    Sitting in a chair, stand up then sit down again reasonably quickly, doing this for 30 seconds at a time, then rest for 30, then repeat for 30 seconds. This is repeated with the head in 5 different positions: neutral (looking straight ahead), chin down near chest, chin up with head tilted back, head tilted to the left, and finally head tilted to the right. Then, sitting on edge of bed or on one of those big inflatable exercise balls, bouncing up and down for 30 seconds, rest for 30, then another 30 seconds. This is done 5 times with the head in each of the above positions. I have to do two sessions of these a day. This is for the first week, then for the second week I add in bouncing on the balls of my feet with my head in the 5 different positions, then week three progress to gentle jumping on the spot. He said to be careful with these ones though so as not to hurt my neck. I'm only at day 3 at the moment, so a little way to go before I get to those.

    He has given me one visual exercise at the moment - I had been doing some visual VRT myself, moving a card backwards and forwards and up and down, holding card still and moving my head back and forth and up and down, flicking my eyes back and forth between two cards, etc. He said they were too basic for me now so has given me an exercise where you focus on an object about two feet away, then move your head back and forth while keeping your eyes fixed on the object/writing/whatever, fairly quickly but still keeping the object in focus, and you should use small head movements. Do this for 30 seconds, rest for 30, then repeat for another 30, rest for 30, then move head up and down for 30 seconds, rest for 30, then move head again for 30 seconds. He said during the rest periods to keep my head still and looking straight ahead, not to move my head or eyes around. I have to do these a minimum 4 times a day and anything up to 8 times a day if I can. It's similar to the head-shaking exercise I guess, Leigh, although it's a smaller, more controlled movement and not as fast.

    Yes, I guess it was a "good thing" in one way that I still had symptoms when I went to see Alex but I really wish I hadn't had to go through that violent BPPV attack! It still makes me nauseous just to think about it.

    Firechick:
    I'm not sure what the VRT guy's view is on preventative exercises - after the bad BPPV the day before and then all the testing at the appointment, I was pretty wiped out by the end of it and forgot to ask him! I had used the MEP on and off before and did actually try doing it every couple of days a while ago but unfortunately still had an attack, so maybe it doesn't work as a preventative for me. As I said earlier, the MEP didn't seem to help at all with this attack, and I had to do something more "physical" like the Semont before I got some results and was able to bring the attack to an end. That's why I've continued with the Brandt-Daroff exercises as maybe they are better for me - mind you, they do take longer and are more physically demanding than the MEP and can be a bit hard on your neck if you're not careful. I always used to use them when I had a BPPV attack and they worked every time to stop the violent spinning. The VRT guy said to continue doing the BD exercises at least once a day (5 repetitions) until I see him again in a month's time, to help keep the crystals out that caused this attack, so I guess he sees that as a preventative measure. I will ask him at my next appointment in 4 weeks whether I should continue the MEP or BD or whatever as part of my daily routine (or every couple of days or whatever). I think it's probably a good idea, I guess you just have to find the exercise that works best for you as a preventative, as I think a number of people on this board tend to use the exercises in this way, most with the MEP I think.

    As far as a prognosis, you can never say positively that a particular therapy/exercise/medication/whatever will definitely work for someone, as we all know only too well that something that works for one person doesn't work for someone else! But he seemed pretty positive that the VRT will bring about a big improvement, up to 90-95% is what he is aiming for, which is something I have only dreamed about! Of course, I have to be fully committed to sticking with the therapy, doing the exercises as many times as I have to, EVERY day, no matter how they make me feel. I guess if these exercises help to stimulate those particular organs and make them work properly, they will become "healthier" or whatever term you would use, and less likely to shed these crystals, so reducing the possibility of a BPPV attack.

    Staying stress-free is so hard - although I'm happy that I'm finally taking some positive steps and that there may be some hope there at last, I am SO stressed after that bad BPPV the other morning that every night I go to bed afraid that I will wake up with that violent spinning that just won't stop, no matter what I do (that's what frightened me most this time, I simply couldn't seem to stop the attack), I wake up constantly during the night. I leave my bedside light on low, so that at least if I wake up spinning, it won't be in the dark and maybe will be easier to get my bearings. I know, it's a very pessimistic attitude, but a bad attack does set you back quite a bit and it can take a bit to get past it. That's where this board is an absolute lifeline, I don't know what I would have done without it.

    Something else that might be of interest. Looking back, I remembered I had a BPPV attack in March or April last year, then went around 6-7 months without any attacks at all. During that time, I had joined a local gym and was doing some pretty full-on classes and workouts with a personal trainer. Although I still had the 24/7 symptoms, I didn't have one BPPV attack which surprised me as I was doing heaps of floor exercises, sit ups and so on, running, jumping, bending down and picking up weights, etc. It also seemed to help a bit with the ever-present symptoms, maybe because I had something else to think about for a while! I was also doing a lot of walking and riding my bike. My gym membership finished and for several reasons I went from all that activity to not a lot of exercise at all. Three weeks later I had a BPPV attack (late December) which set me back, then was sick with tonsillitis for most of January and have not been doing much activity or exercise at all since, as I just felt so exhausted, and have now had 3 more BPPV attacks in the past couple of months. I wonder now, after what my VRT guy said, if all the exercise I was doing was increasing the blood flow to the head and "nourishing" the otolith organs as well as stimulating them by all the activity, and when all that stopped, that's why I am now prone to these BPPV attacks again. Interesting thought, as it seems very coincidental that I didn't have an attack while I was training hard and really putting my body through it 4-5 days a week, when I thought all that head movement etc would be the sort of thing to bring an attack on. And the problem is of course that each attack sets you back, the more inactive you become (because you feel dizzy and just generally revolting, and also become afraid to do ANYTHING in case it triggers an attack), and maybe it becomes a vicious cycle. What do you guys think?

    Anyway, this post is turning into another one of my epics, so I'd better stop writing. Have a good week everyone and I'll keep you posted on progress

    Julie

     
    Old 04-04-2005, 02:49 PM   #11
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    Re: Been for my first visit to the VRT guy.....

    Hey Julie
    Thanks for the info, again!
    I think you are onto something there with the exercise thing. I work out 3-6 times a week doing lots of mat exercises and sit-ups etc. After my initial attack of BPPV and learning the MEP I still felt so weird lying back, I could feel my brain actually trying to stop the vertigo and it would pass after about 5-10 sec without the spinning actually happening. Touch wood I haven't had any spinning since, but when I am down or feeling more spaced out than usual I still feel funny lying down quickly. I think the moving around, bouncing up and down really helps. If anything it helps to keep the stress down and keeps the endorphins pumping. I always figure I feel spacey and lightheaded anyway, may as well feel like that and be fit!
    Maybe the exercise is really a form of VRT!
    Keep up the good work!

     
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