Hi Star

I see you still post to the board, so am hoping you will see this! As a fellow Perth-ite, you know only too well the lack of help we have over here with regards to vertigo problems! I came across the Lions Eye and Hearing Institute website and contacted them for information, as they said they have neuro-otologists on staff so thought that might help, as many people on this board recommend neuro-otos. However after I explained my history of BPPV (going on for almost 4 years now), they have referred me on to Alex Ring, the balance physio at Shenton Park.

I remember you recommending some time ago that I go to see this guy - however, I was feeling a lot better at the time, and you know how it is... oh, things are tolerable at the moment, I'll just let it ride. Now all of a sudden I've had 3 attacks of BPPV in the past 3 months, so am just about at the end of my tether with this thing :bouncing:

I couldn't get an appointment with Alex until April, seeing as he only works Mondays and Wednesdays. In one of your recent posts, you referred to your VRT guy - is he the one you are referring to? If so, have you found him to be of help to you? What sort of tests/exercises does he do? I am a little worried about the first appointment, they have told me to bring someone with me if possible but I don't know if I can because I am living on my own and also the appointment is on a Monday, so all my friends will be at work. Is the first appointment that bad that you need someone to drive you home?

Hope to hear from you

Julie

Hi Julie

I do still check the boards regularly but don't post as much as I used. Life got kinda busy!!

It sounds like you have been down a similar route as me, in regards to specialists at least!!! Lions Hearing Clinic does NOT have a neuro-otologist. What they call a neuro-otologist and what we call is a neuro-otologist is different. Basically perth doesn't have one....so you have to do the best you can specialist wise.

In regards to ENT and getting tests done I would go and see Marcus Atlas. He has a reasonably long waiting list but is reasonable savvy on inner ear disorders and had the testing room (calorics etc) at Sir Charles Gardener Hospital set up specifically for his requirements. Not as good as a neuro-otologist but as good as you get in Perth!! (I have seen 4 ENT's in perth and he was definately the best)

In regards to Alex Ring, I have been seeing him for a while and that is who I mean when I say VRT guy. Have you done any VRT? Basically he will test you for BPPV by putting your head in various positions and looking for eye movements. Also he will get you to march on the spot and do a few other balance exercises. The reason why they recommend you to bring someone is that the tests are supposed to provoke dizziness. It is an individual thing......sometimes I have felt really bad and at other times I have come out feeling fine. I would at least organise to get a cab home. What suburb do you live in?? Don't be too worried about the appointment, it is definately worthwhile going. I get BPPV as well and when I used to get an attack it would last 3-4 days. I still get attacks but know I have exercises I can do to usually stop it within a few hours to a day. I also see a visual therapist. DO you get visual symptoms??

Do you have any symptoms between BPPV attacks???

Hope this all helps!

Leigh

Thanks for all the info - it's so great to hear first-hand from someone who has actually seen these people!

I've never been given much to do in the way of VRT. The ENT who diagnosed me, Phil Fisher, referred me to Robyn Klouda, a balance physio (who I'm pretty sure worked out of the same premises Alex Ring does now) and she performed the Epley on me twice about 6 weeks apart. She gave me a few basic visual exercises but not a tailored program or anything, and then she moved back to Sydney not long after my second visit, and I was told there was no one else in Perth who specialised in this field. The VRT I have done was based on exercises and information I've found on this board, but unfortunately I found the VRT exercises that involved rapid head movements, head circles etc eventually seemed to bring on another BPPV attack (although maybe this was coincidental). Maybe if I had done the MEP as well as the VRT exercises, that would have helped? Who knows.

I certainly do suffer from visual problems, in fact they are probably the worst part of all this. In between attacks, I have 24/7 dizziness/off-balance/unsteadiness feeling and visual problems most of the time. It doesn't take much visually to set off the dizzies - going to the movies, watching anything fast moving, glancing from one thing to another (e.g. reading a book and then looking up at the TV then back to the book), going for a walk at dusk or in the dark, visual stimulation like busy patterns on carpets/walls, sometimes the lighting/layout in certain shopping centres (like Karrinyup)and fluoro lighting in some stores will make me feel terrible. I work on a computer all day, so often feel pretty yuck by the end of the day. Cannot set foot on a boat, floating jetty or anything similar. Not surprisingly, I suffer from motion sickness!! I wear glasses for driving (have been told I do not need them for close up work), travelling in a vehicle etc - if I wear them when out walking (e.g. prescription sunnies on a fine day) I find I get a headache and although my eyes take a while to settle down once I take my glasses off. I suffer from a lot of eye strain and headaches. I have had migraines since I was 21 (18 years - just turned 39 today - Eeeeek!) and was told by a neurologist that I may have MAV (which I had never heard of) but he didn't really offer anything in the way of treatment and was scornfully dismissive of my visual problems or any suggestion of VRT.

I live in Joondanna and work in the city (used to live out in Heathridge) so that has helped with making my trip to work much shorter (less stress and visual stimulation). I had been going along not too badly until a recent very bad attack just before Christmas and then 2 more attacks in the past couple of weeks. Each time I have an attack, it really sets me back (which you probably find as well!) and I get so stressed about having another attack that my day to day symptoms increase because I'm so stressed out! Then I worry about worrying! Talk about a vicious cycle.

Another thing that is really stressing me is that I am in a new relationship and while my boyfriend has been fantastic about this whole "head monster" thing (far more so than my (ex) husband ever was!), I hate to have to keep cancelling things or not wanting to (or not be able to) go and do things either because I've had an attack or because I'm worrying so much about having another one that I make myself ill!

Any advice you can give is greatly appreciated.

Thanks

Julie

Hi Julie!

Your symptoms sound very much like mine. I suffer mostly with visual symptoms with a few balance problems thrown in! But I have found that my balance has improved heaps since walking every day but the visual symptoms are the toughest to deal with. But I have been doing vision therapy with a guy called Stephen Leslie at Eyes on Oxford in Leederville for about the last 4-6 months. This has helped a lot with my visual symptoms. Vision therapy is a lot like VRT but it is focused on your visual system and getting your eyes stronger. I still suffer with the visual symptoms every day but I can deal with visual challenging situations much better. I would recommend it. But I would see Alex Ring first and see how that goes.

I know what you mean about the BPPV setting things back. It is exactly the same thing with me......as soon as I get an attack I get all the bouncing and visual symptoms again but it doesn't take anywhere near as long to go away again as before.

Joondanna isn't too far away from Shenton Park....If I was you I would organise to get a cab home from Alex Ring just to be sure. I live in Alfred Cove (suburb next to Applecross)

Do you work fulltime? If you do then I think you are already doing amazingly well! I work part-time and really don't think I could handle full-time work......not just the hours but also the stress of having to be functional all of the time!

And having a new relationship, I would find that super stressful too. At the beginning of a relationship you want to be your best and don't want to inflict your problems on someone new!! I have thought lots about how hard it would be to start a new relationship with this dizziness with me all the time. Luckily my boyfriend has been super supportive although it was definately hard at the beginning. It took him a long time to get used to me not being as functional as I used to be. But things are good now. I wish you the best of luck with your new boy.....but I definately understand your stress!!

Also how are you at driving??

Leigh

Hi Leigh

It certainly does sound like we're travelling down a similar road. Pity we're not allowed to exchange email addresses or anything on this board - I would love to be able to meet up one day and compare notes! The visual problems are the worst part of this for me and it certainly does sound like visual therapy would be a big help too. But as you said, I will see Alex Ring first and see what he says. At least Leederville is pretty close to home if I'm referred to the same visual therapist.

I work four full days a week - my BPPV actually started 4 days before I began this job in June 2001. How the hell I got through those first 12 months or so, I still don't know. I remember sitting at work when it seemed like everything around me was moving, that constant feeling of motion was just dreadful. (I had been out of work for 3 months and could not pass up the new job - my husband was very unsympathetic about the whole thing and because he couldn't actually "see" anything wrong with me, he didn't see what the problem was, he certainly would never have tolerated me not going back to work, all he was concerned about was the money I think) And as for trying to walk through the crowds of people in the city malls, what a nightmare - I had terrible trouble trying to avoid people walking towards me and had to try and walk as close as possible to walls in an attempt to walk in a straight line, I had this constant "pull" to the left and the whole time had the dreaded "trampoline walk". Pretty horrendous all up, and I guess my symptoms now are nowhere near as bad as they were then, but these visual problems are really driving me up the wall and this week in particular seem to be very bad, I think because I am getting so stressed about the whole thing. When I'm safely at home, things seem to settle down, but as soon as I'm getting to go out or actually out and about, my eyes are just all over the place. I'm on holidays this week and my boyfriend and I went to Harbourtown today, so you can imagine how visually challenging that was! I ended up with a bad headache this afternoon which I still can't get rid of. If you don't mind me asking, how much does the visual therapy cost? I don't have private health insurance, but am at the point where I do whatever it takes and pay whatever it costs to get better. I would love to be able to work less hours - I work Monday to Thursday and by Thursday night I am usually mentally and physically exhausted by the strain of dealing with the head monster all week, as well as the demands of work, but now I am on my own, I have to earn enough to pay the rent and the bills, so I don't have any choice. That has also added to the stress - I do have income protection insurance, so that if I ended up being unable to work because of this problem, then at least I would have some income. It has to be pretty serious and you have to run the gamut of doctors and tests etc before the insurance companies can be persuaded to pay up in those situations though!

I'm glad to hear your boyfriend has been so supportive. You're right, when starting a new relationship, the last thing you need is to have to unload all this stuff onto your new partner and then worry about how they will deal with it! I got very sick with tonsillitis on the New Year weekend and was on antibiotics for nearly 4 weeks. My new man was fantastic during that time and really looked after me, but you really hate to be such a burden and I can't help thinking "he's going to get sick of this one of these days and not want to be with me any more". I've suffered from low self-esteem and low self-confidence since my husband dumped me after 15 years together - one of his main "reasons" was that he was fed up with how my health problems restricted HIS life. That's why I get so paranoid about how my new man feels about all this (even though he has been great about it all), thinking that the same thing will happen.

Thankfully, driving has never really been a problem for me - even during the first 12 months or so, when my symptoms were at their worst, I was still able to drive (although I was usually only driving to the train station at that time -it was all the "patterns" at the station, like the shadows thrown by all the hundreds of white railings and then the train trip itself that used to really muck me up!). So at least I can get myself out and about, although I'm finding at the moment when I put my glasses on (for driving) and walk out to the car, it takes a little while for my eyes to adjust to the glasses. Maybe it's about time I had my eyes tested again as well. I also have problems when driving along tree-lined roads on a sunny day and having the "strobing" effect of the sun through the trees. Are you OK to drive, or is it a problem for you?

I used to walk a lot as well every day and went to the gym for 6 months last year - I didn't have any BPPV attacks during that time and seemed to be able to handle things better, until the bad attack before Christmas - I had finished my gym membership a few weeks before and was feeling very tired and run down (I had glandular fever a couple of years ago and still get tired easily). Since I had the tonsillitis in January, I have done very little in the way of walking or exercise at all, I just haven't been well enough (and the revolting hot weather hasn't helped!) but if I can get back to that and getting more visual stimulation outside, then that will help things as well. Maybe that's what's causing problems this week, going out and about with my boyfriend and getting visual stimulation that I'm just not used to as these attacks and the illness have set me back.

Well, time to take some more aspirin and head off to bed to try and get rid of this headache.

Take care

Julie

Hi Julie

I know what you mean about that it would be great to meet up and actually compare notes. The visual therapy is actually really cost effective. Each appt is about 30-45 mins and he charges $31 and I get $25 back from medicare so it actually only costs $6!! Cant get cheaper than that!! Although he has given me a different pair of glasses so of course there was the cost for new lens in my glasses.

I think you have done amazingly well working pretty much fulltime. I tried to go back to full-time work in 2003 and just couldn't handle it. Not only the dizzies but also the stress of whether I was gonna cope and also the guilt of not being as functional as I should be. I lasted 4 months!! But now my job is part-time and very flexible so I am much much happier working now. Money obviously isn't as good as working full-time but I make do! I have been put on disability pension by centrelink which although I found hard to comes to terms with has been really good because I can work but have a back up of some income if I can't work for a couple of weeks. But it is depressing to think that I am DISABLED!!

I also find it challenging in shops, especially those with fleuro lighting but it is heaps easier since the visual therapy. I can be in there for much longer now.

I have been really lucky with my boyfriend. It must of been so hard for you to go through a divorce on top of all the dizziness. This problem is hard enough without all of the rest of it! Do you have supportive family and friends?? It sounds like your new partner is really nice and understanding! Sounds like a keeper!!

I find driving hardish......I find it easy for about 20 mins and then my vision feels strained and it can play on my dizziness so I tend to only drive locally and leave it up to my friends/ family/ boyfriend to drive if we are going further afield. It is very annoying because I would like to be able to drive about without restriction.

I hope your headache has gone...did you look into MAV at all???

Leigh

Hi Leigh

Great to hear that the vision therapy will be so affordable - I was a bit worried about that! I may well have to get new lenses too, but I'll just have to wait and see what he says.

I went to a neurologist about 12 months after the original BPPV attack, which was an absolute waste of time. I was trying to tell him the full story of what was happening to me (the 24/7 dizziness/off balance, constant feeling of motion, visual problems etc) but he kept interrupting me and telling me "I'm not interested in that" !!!!!!!!!!!! To my amazement, he especially showed very little interest in the visual problems (which were the MAJOR part of the problem, as far as I was concerned) and brushed me off with "oh, that's just the nystagmus caused by a vertigo attack". I tried to explain that I had visual disturbances ALL the time, not just when I had an attack, but he just wasn't listening. He did a few tests, one was obviously to see whether I was hyperventilating (as if I would have been hyperventilating for over a year!) and right at the end he mentioned MAV as a vague sort of diagnosis, almost as if he couldn't find anything else wrong, but he didn't really explain anything about it. He did prescribe some medication (beta blockers etc) but he warned they would cause severe drowsiness/tiredness, and would probably also result in low blood pressure. I got very sick with the flu not long after and by the time I had recovered, and read up on all the side effects of the medication he prescribed, I wasn't at all keen to take them. I also was not very impressed at all with his manner towards me, as if I was some hysterical female with an imaginary problem.

I read about Amitryptiline on this board and asked my regular doctor to prescribe it, but being a wuss about taking new medications, I haven't done it yet! I did have a discussion on the board with Wowweeeee recently and have decided to give the Ami a try - unfortunately it can also have a few bad side effects so that's what worries me the most. Still, I guess I can start on a low dose and always stop taking it if I had to. I will probably do it next weekend - my boyfriend is going away for the weekend and so I will have a few days to myself so I can just go to bed or rest if I'm feeling bad. Not that I can't do that when he's around, mind you, he doesn't mind at all, but I always feel guilty about spending time sleeping or having to rest a lot of the time and not being able to spend time with him.

I have to do something though, I had a MASSIVE panic attack yesterday. My eyes have been playing up a lot over this week of holidays we've had together and I was just getting more and more stressed over it. I was driving back to my place to check on a few things before heading back to his place (I was spending the weekend at his place) and my eyes felt really funny and I just had a huge panic attack, could barely make it home and practically fell in the door and crawled into bed, crying my eyes out, feeling like there was no way I could get up again and go out the door. It was AWFUL, and by far the worst panic attack I have had for years. I spent the next couple of hours calming myself down, and then did manage to drive back to his place (thankfully he only lives at Hamersley, which is about 10-15 minutes away). I was quite proud of myself for doing that, as all I wanted to do was just "hide" in bed and stay in my "safe" place. I have started using the Bach flower essences "Rescue Remedy" which does seem to be helping a bit. I have used it the past couple of nights and have slept quite well. I have to go back to work tomorrow and am getting very worried about having another panic attack in the morning, but I will just have to work through it - it's like that line in the movie The Shawshank Redemption - "get busy living, or get busy dying" - I have to fight this, I can't let the fear take over my life. Easier said than done, I know.

My friends have been quite good, but none of them really understand anything about this condition and also the panic/stress that goes along with it. They were all very supportive during the divorce etc. Unfortunately I don't have any family here in Perth, my parents are on the East Coast and although I am in regular contact with them, they can't travel due to my mother's health problems so I've had to work through a lot of this stuff on my own. As I've said a number of times, my boyfriend is a wonderful guy and I am so lucky to have met him. He couldn't be more supportive and I want to try my hardest for him so that we can be together and I can enjoy being with him instead of stressing out about every little thing!

Hopre you're enjoying the public holiday! :)

Julie

Hiya Julie

Im sorry you have been having panic attacks........they are horrible! I used to feel panicky quite often when all of this first started. Mainly due to stressing about my ability to cope with a situation due to the dizziness. For example, I would stress about whether I'll be able to perform at work the next day and stress over it......resulting in feeling panicky. But the crazy thing is that the panic makes it all worse!!

The way I have dealt with the panic is organise as much of my life to create a stress-free environment. But also when I get into a situation where I start to feel stressed and panicky I do one of two things. Firstly I think about the fact that I have always been able to get through all the yucky dizzy situations I have been in and tell myself that stressing will not help. Sometimes I give myself some time to stress ie 10 mins before stopping....I focus on that thought and it can work to chill me out. If I am worried about the dizziness and getting home or moving around I really strongely focus on one foot in front of the other. I figure that if I can just get one step further, then I can go another one etc. This probably won't help at all but it helped me. I still stress out sometimes and have the odd panic attack but it is alot less then it used to be.

I have wondered about MAV as well. I havent talked to anyone about this so have booked an appt with a neurologist to talk about it with. I am like you though and hate taking medication. I think I am always worried about messing around with my head. I never used to read side effects but now I always do!! So I don't know if I would actually be happy taking medication every day but I thought I would research it a little more!

It is definately hard for friends to understand the full extent of this evil dizzy monster. The biggest thing is that we all look normal and healthy!! My mum is always saying to me that it is so hard to believe that I am sick when I look so well!! But my boyfriend is really good at picking how I am feeling. Supposedly my facial expressions change. Him and my mum are the only people that pick it up! For the most part I have gotten pretty good at hiding how I feel! I have lost a few friends along the way as well that just havent been able to deal with the fact that I am no longer as active and vibrant as I used to be.

Hope you are feeling better and the last couple of days back at work have been bearable!!

Leigh

Just to second what star says - you learn who your friends are through adversity...Ive changed my opinion on a few of mine, yet other friendships have got stronger. It is all a learning curve and you truly learn who your fair weather friends are as well as your true friends! xxx

I couldn't agree more - you certainly do find out who your real friends are! And, as I found out, you also discover how strong your personal relationships actually are and who will stick by you - as I've already mentioned, my (now ex) husband (we had been together 11 years when the head monster first made its appearance) was very unsympathetic and impatient about the whole thing and just didn't want to deal with it at all, using it as one of his "reasons" for leaving, whereas my new boyfriend of only a few months is just so supportive and caring and has been absolutely fantastic and very understanding about the whole thing. Like your boyfriend, Leigh, my boyfriend is very perceptive as to when my eyes/head etc are causing problems and he can always tell when I'm feeling bad.

Being back at work this week has been hard, and I have been quite panicky at times but have managed to work through it. I am pretty wiped out by the end of the day and tend to be quite anxious and dizzy when I get on the train but it's only 2 stops before I get off, so I tend to use deep breathing and trying to distract myself from concentrating too much on the bad feelings. It's difficult, especially as my eyes are usually quite bad by the end of the day, but I'm hanging in there :dizzy:

I am doing some VRT (especially visual) myself until I get to see Alex Ring - I initially had an appointment for April 11 but due to a cancellation have managed to move it forward to April 1 (April Fool's Day!) which is one of my days off anyway. I am hoping he will also refer me to the visual therapist, as this is the major problem for me and I also think I need to get my eyes checked again and maybe my lens prescription changed. Do you actually need to get a referral to the visual therapist or is it possible to just go ahead and make an appointment directly?

Thanks for the advice re panic attacks Leigh - I also tend to use the "one foot at a time" thing or even "baby steps", just getting from one place to another e.g. home to the train station, then getting on the train, then getting from the station to work, and so on. I also use deep breathing and trying to work through the feelings rather than panic and head straight home, just try and ride them out. Sometimes it all gets too much though.

Thanks so much for all your support as well, it means a lot - it makes things a little easier to tolerate when you know there are so many other people going through the same thing and that you can always turn to the board for help, support and advice.

Hope you're having a good day and I see we're getting some rain at last! (well, a little bit anyway)

Julie

Hiya Julie!

Glad to see you survived being back at work despite it being tough! You got through it!

I don't think that you need a referral to go and see stephen leslie (visual therapist) however Alex Ring does so a variety of visual exercises and it may be worth working through all of them first and then seeing if you need any more help.

I went to Alex 1 1/2 weeks ago and he gave me a new exercise which he described as 'miraculous'. Supposedly it is a new one that has come from a visiting expert back in october......Although I don't have my hopes up at all I like the word 'miraculous' as I think that is what I need now!! Although I havent started it yet because when I first tried it, it made me very dizzy and I have a lot going on right now. Have been waiting for life to calm down a little before starting it!!

I read another post of yours about your separation from your husband and I can't imagine how hard that must of been for you. Not only dealing with the dizzies but also to have such emotional and physical upheaval.....I am so happy you are with someone now who is caring and supportive!

Leigh

Hi Leigh

Well, just under 3 weeks now until I see Alex Ring - I will see him first and see what he says as to whether I should go to the visual therapist as well. I guess I'm just getting impatient to start some sort of tailored VRT program to see if it will work! I assume visits to Alex Ring aren't claimable under Medicare? I don't have private health insurance so can't claim on that. I'm intrigued about this "miraculous" exercise - so what sort of an exercise is it? Don't worry, I'm not going to try it or anything, I'm just interested to know in general terms what sort of an exercise it is. Something like hanging upside down from the ceiling while spinning in a circle? :D

Yes, the end of the marriage was pretty tough, especially coping with the dizzies as well! I've realised now I'm a stronger person than I thought I was, although there were plenty of times I just wanted to give up.

Going back to work has been so tough, but I am proud of myself for getting through it and dealing with these panic attacks. Every day is a struggle at the moment, but some days are better than others!

I read a post of yours about your job and it sounds like they're really great about your head monster. I wish my workplace was the same. We get no leeway at all with having to take time off - I only get 8 days sick leave a year and of course I tend to use it all up what with migraines and "dizzy days" when I simply cannot get into work. If you need to take a couple of hours off to see a doctor/specialist, that comes off your sick leave entitlement. Same for days when I have really struggled through due to bad dizzies or visual problems or migraine or whatever and then finally have to give in and go home a couple of hours early - sorry, but that's going to come off your sick leave entitlement as well. At the time my marriage broke up, I was extremely ill with glandular fever (yes, just something else that was going wrong!) and was off work for about a month over December/January. I honestly thought they may make some allowances for extended sick leave for an illness like that - I mean, glandular fever isn't like the flu, where you're off for a few days or a week and can then go back to work! When my sick leave was used up, they started taking it out what was left of my annual leave entitlement and then I just didn't get paid. This was done with no consultation with me, I just had to accept it, which was very upsetting especially considering what else was going on in my life at the time! As a result, I went back to work much earlier than I should have done because I simply couldn't afford the lost wages, so never really had a chance to recover properly. Even now, 2 years on, I still get exhausted very easily and just seem to suffer from tiredness all the time. I have had my iron levels etc checked and they are OK and I try to eat as healthily as possible, take vitamins etc, but it doesn't seem to help. And of course the dizzies and visual problems are MUCH worse when I am tired.

This is where a lot of my anxiety comes from as I am constantly worried about whether I will make it to work each day and then whether I will make it through the whole day! As I support myself now, I cannot afford to lose my job or give up work and this causes so much stress, it just makes my symptoms so much worse. It certainly doesn't help having a boss who has no understanding or sympathy with regards to my situation - she's of the "you look all right, so what's wrong with you?" brigade. My workmates in our small section are pretty good about it all and quite supportive and sympathetic, but unfortunately they're not the ones who monitor my work hours or administer my leave entitlements!

But I am lucky in the fact that I am (for the most part) able to go to work and to drive, as difficult as those things can be a lot of the time, but there are so many people on this board who are incapacitated by the head monster and are practically housebound. And of course I have been blessed with my new BF, who is so loving, caring and supportive - I still cannot believe I have found someone like him and he has made such a difference to my world. He is 11 years younger than me but has more maturity, strength (physical and emotional) and "guts" than my ex husband (who was 9 years older than me) ever had!

Well, very busy day at work today and I'm pretty wiped out so I'm off to bed! :yawn:

Julie

Hi Julie!

Alex Ring isnt covered by medicare so unfortunately it is a bit expensive. From memory the first appointment is around $95 and the subsequential ones are $55. But you won't have to see him really often......he'll give you exercises to go away with and work on for about 4 weeks before your next appointment.

The miraculous exercise is shaking your head violently side to side for 30 seconds, rest for 30 seconds and then shake head again for another 30 seconds. Then repeat with up and down head movements. Have to do that 4 times a day for 12 weeks. I still havent started it yet because I am a bit of a wimp!! Probably try it over easter when life won't be so hectic.

I can't imagine trying to do a job like yours!!! I am very lucky with my work being so flexible but their are downsides too.......pay isn't as good as previous jobs and the work isn't as interesting as previous jobs BUT I don't think I could function particularly well in a job that was strict and fulltime.....SO I am really happy with it!

I can completely understand your stress and anxiety at trying to consistantly function in your job without any leeway......And even if you wanted to find another job, the whole process of job hunting, interviews and starting a new job is really stressful too! But look at all you've accomplished and all the hardships you have overcome.....all on your own! I reckon you will be able to deal with anything that comes your way!! Now you just have to convince yourself of it!!!

And you may still get back to 100% That's what I am hoping for!

Leigh

Hi Leigh

Hmmmm, that "miraculous exercise" sounds a bit yukky - shaking my head rapidly at all, let alone for 30 seconds at a time, doesn't appeal to me at all! But, like just about everyone on this board, I guess we're willing to do anything if it works! Good luck - let me know how you go with it and whether you notice any improvement.

You're right about the stress of job hunting - just the thought of it brings me out into a cold sweat. I have suffered from panic attacks for years - they first started about 12-13 years ago when we were living in New Zealand. We were having some problems with our marriage and then my Mum (who lives in NSW) was diagnosed with a massive brain tumour. We came back to Australia to see Mum just after her first operation (she had 4) and, as you can imagine, it was a HUGELY stressful time. (thankfully Mum survived and is still with us, although she has considerable ongoing mental and physical problems). Soon after, I began having panic attacks and ended up almost housebound. Even leaving the house to go to work was a big ordeal and I would get so stressed I would almost be throwing up. Going anywhere or doing anything such as going to restaurants, movies, out for dinner, or even shopping was almost impossible, much to the disgust of my husband who couldn't understand what was wrong with me. Then when we moved to Perth 10 years ago, I was faced with finding a new job, driving in a big city again (in NZ, we lived in a town of 50,000 people) and it took a long time for me to be able to cope with even simple things such as going to the supermarket.

The panic attacks never really went away, I'm still not good in crowds or anywhere I feel "trapped" or that I can't get out of if I need to, and of course when this %*#^@* thing came along, the panic attacks came back with full force. Thankfully my new BF has been fantastic about this as he has dealt with a "mild" form of agoraphobia himself (he was never really bad with it, such as being housebound or having major panic attacks, but there were just some places or in big crowds where he would feel uncomfortable and would sometimes have to leave) and he has told me that if ever we are out anywhere and I need to leave because of the dizzies or my eyes are playing up or whatever, then just to tell him and we can leave, regardless of whether it's at the movies, out shopping, a restaurant or wherever. That has been a HUGE relief to me, as I had to deal for many years with my husband's reactions to my panic attacks (and later the head monster), and he would be very unsympathetic and often quite angry if we had to go home because of the way I was feeling. So my BF telling me that has been such a relief, because if I know I can leave a place if I have to often gives me the courage to try and settle myself down and stay a bit longer, and also means I'm not having the added stress of thinking he will be angry with me if we do have to leave!

So it's just one day at a time at the moment, waiting for my appointment with Alex and I'll see how things go from there. Getting back to 100% is something I dream about, and I keep my fingers crossed that all of us here can find some way, be it VRT, medication, Epley, surgery or whatever to give us back what we all wish for - a normal life.

Thanks for the words of support - I keep telling myself, "look at how far you've come and everything you've dealt with", and that does give me encouragement to keep plodding along, one foot in front of the other!

Have a good week :wave:

Julie

Hi Julie

Sorry it's taken me a while to reply but I have been pretty busy trying to fit everything in lately!! Hope you are having a good easter! Eating lots of chocolate I hope!!


I still havent worked up enough courage to try the miraculous exercise but I will.....one day!!

The panic attacks that you have been dealing with sound horrible.....I have never had them that badly. And if you were having them prior to the dizziness them I can imagine that must of set you off badly panic wise. Sounds like you have really got a handle on things most of the time now though which is great! Have you thought about seeing a psychologist . When I first became dizzy I had a hard time dealing with it and starting having panic attacks etc and I went to a psychologist who specialised in panic attacks and she did help in teaching me how to control my thoughts because panic attacks are all about how you think. It definately did help me.......but again it is something that costs money and it is hard when there are so many costs everywhere. But Women's Health Centres have subsidised psychologist sessions (around $25 per session) although sometimes there is a waiting list.......worth a thought maybe!!

My eyes have been playing up this easter and am having big battles with them to keep things still.....it gets very annoying!! I think I'll eat some more chocolate to make mayself feel better!!

Leigh

Star

I tried the miraculous exercise - feel dreadful! May incorporate it into my VRT tho - thanks :)

xxx

Hi Crazylabyrinth

Yes it made me feel really yucky as well and that's why I havent tried it again just yet!! For all the suffering it better be miraculous!! I was told I had to do it 4 times a day for 12 weeks for it to have an effect.......but supposedly he has had really good feedback of it working well for quite a few people.

Let me know if you keep doing it and how you go!

Leigh

Will do star - I can see how this exercise may have an effect (fingers crossed) as boy does it tell the brain theres a problem! xxx

Hey guys, I tried the miracle exercise and OMG--what a horrid, horrid feeling. Did ya'll feel like there was some sort of pressure inside your head trying to push out on both sides??? Don't know if I explained it right but it scared the dickens out of me. am terrified to try again. Let me know, please. Belle

I got a huge dizziness in the head, lurching of head like on a roller coaster and huge bouncing of vision, eek.xxx

Thanks CL--wonder why it makes us so crazy?? Am going to new doc--just a GP but at a teaching hospital so have been praying very hard they have some answers... Belle

I will pray too for you - fingers crossed belle xxxxxxx

Thanks CL--the doc put me on valium and is making me an appointment with the vestibular clininc at the hospital---he thinks they will go ahead and do an MRI--which I never got cuz the ENT said the ENG ruled out the brain, SOOO we shall see, Hopefully, the valium will give me some relief...Will start it tommorrow. Am kinda scsred--NEVER want another ENG!!!!!! Belle

Hi Leigh

Yes, I had a pretty good Easter, spending most of my time with the BF and eating yummy chocolate. Hope you (and everyone else on the board) had a good Easter too.

The panic attacks are pretty difficult to deal with and it hasn't helped that I woke up with a violent vertigo attack at 4am this morning, when I rolled onto my back in bed after waking up. Won't go into details, I put all that in a rather panicked post called "Somebody please help!", written at about 5.30am after trying the MEP several times to settle things (which unfortunately this time didn't work), I felt so ill it was dreadful. Starting to settle down a bit now though, although still getting "spins" when I lay down, and certainly not able to go into work today.

Wowweeeee and Subs replied to my post with their usual words of wisdom, which have calmed me down a lot! I did actually try the "miraculous exercise", maybe I shouldn't have, but I thought I would give it a go over the last week - I felt pretty horrible while I was doing it, but reasonably OK afterwards and my head did seem to be a little bit "clearer". But now of course I've had this really bad attack today (the worst I've had since the early days of the head monster) and I suspect the two may be linked, as I used to find if I was trying any VRT which involved rapid head movements or head circles or similar, I would be OK for a while, then would have a really bad BPPV attack. Seems like my ear rocks are hanging around and anything that shakes them up sends them right back in where they start causing trouble again. I've got my appointment with Alex Ring tomorrow, so will see what he says, I'll just tell him what I've found with "head-shaking" type VRT in the past and see what he recommends.

I haven't seen a psychologist about the panic attacks, although I did go for counselling during my marriage breakup. We did discuss the panic attacks and she was going to start working with me on them, then she was transferred down south, I was on one income by then and couldn't afford to keep up the sessions anyway. I will contact the Women's Health Centres and see what they can offer, even if there's a waiting list, I've managed up until now so I guess I can handle it myself a little bit longer!

So not a good day for me, which has been pretty devastating - had a wonderful night with the BF last night, then this today. Oh well, thems the breaks when you're dealing with this thing I suppose.

Hope you're having a good week, and I'll let you know how I go with Alex.

I'll be interested to hear how others go with the head-shaking exercise though, hope it helps for those who are trying it, but it looks like it might not be for me!

Julie