Just wondering if you're out there and how you're getting on. I know you were all doing pretty well last time you checked in. Scant, you mentioned you'd just seen an improvement? How's the Sandomigraine Jen? Ruth, are you still mostly 100%? Anyway, hope you're all dizzy free, or the next best thing, nearly dizzy free.

I'm doing ok, improved massively on when this all started, no question, although still experiencing ups and downs and not there yet.

best,

hbep.

Hi hbep!
I've been meaning to post to see how you were doing. Glad things are improving for you. How are you managing with work? I know you work from home - have you been able to take more on recently? I totally understand about the ups and downs.
Well, as you said, I have lots of good spells with no dizziness. Then I get 'slightly weird' days when I feel woozy and wobbly. These are usually due to tiredness or having overdone things and usually only last a couple of days. Then sometimes I'll get bad, bad days when I think oh my God, how did I put up with feeling like this for so long! I had that recently and I swear I don't know how I didn't go off my head with it all last year. I had a cold a couple of weeks ago and had two very dizzy days - one on the day before the cold started, the other about 6 days into the cold; the days inbetween I had no dizziness. I just find the whole thing really weird and very frustrating!
I still feel like I am having to live 'within my limits' which is getting a bit frustrating, to be honest. (Although I'm very grateful that things are 10x better than this time last year). I honestly don't know how I will cope when I start working again. I think people around me think I'm totally over it now. It is hard to get people to understand that you can be tons better but still not like you used to be before it all started. When I'm feeling really good I start getting excited about making plans for the future and then I have a little setback and I worry that I won't be able to cope, you know?
I have been doing a Pilates class in an attempt to build up a bit of fitness. I'm sure it has tested my balance a bit and that's why I seem to be getting these dodgy patches. But I want to stick with it.
Do you remember my colleague Debbie had labyrinthitis too? She was also doing masses better. Well, she phoned me a couple of weeks back and she has had a really bad reoccurance. Spinning, feeling virally and really hot, tired, etc... I called her again last week and she has been off work 3 weeks. She is so fed up. I told her to call me if she just wants to talk. As I, and you guys, really understand what she is going through.
Hopefully, it is just a very bad blip for her.
I am still convinced that the experts don't know or understand the half of it when it comes to labyrinthitis. I still have my own theory that it is caused by a specific type of virus that stays dormant in the body and flares up.
God, I've really gone on!! Sorry!!
I'm really pleased that like me you are tons better than you were this time last year. Remember the 'downs' are just stupid blips and the 'ups' will triumph in the end!

Best wishes,

Ruth
xxx

P.s: I'd love to hear how you are getting on Jen and Kathy (Scant)

Hi everyone:
Just finished a long stretch at work and did quite well. The other day at work I had a weird little blip which of course sets me into a slight panic. Not as bad a panic as previous times but non the less a panic. You look for that same type of blip over the next few days and then are thankful it hasn't happened again and move on. I read Ruths post and feel almost the same way. You have to be careful how much you do and you do have your limitations. Today I am very tired and therefore a bit loopy. I am still convinced I will see 100% but just keep saying enough is enough because you do feel better but have a tendency to walk on egg shells. I too am much much better but still not 100% although I do get a few days here and there where I feel real good. I did notice another micro improvement once again. But as we all do would like to give the rest of this a final heave ho. I certainly can't say I haven't kept myself busy but I am looking forward to the snow melting so I can continue to do my long hikes. Besides the fact that my almost two year old dog is driving me nuts without the constant activity he was so used to before the winter set in. Once thing I notice and I don't know if anybody else can do this...is if I am having a loopy day and preoccupy myself I can' basically ignore the symptoms but if I make a concious effort making myself aware of the feelings I can actually feel them more. I guess thats the power of the mind. I feel bad that I don't post as much but I assure you all I don't forget about you for one minute. Tomorrow I will be hitting my 15 month mark and can't believe I have had the patience to deal with this for this long. I also wonder what the heck I would do if I ever had to deal with this again some time in the far future. That is a scary thought and I hope this is a one time occurance for all of us. Still taking all my supplemnents and trying the best that I can to stay healthy. Ruth, it's amazing how closely I feel about this whole mess the same way you do. This is why I always say unless you have personally dealt with something like this you can't understand the magnitude of the effect it has had on our lives.
Hbep, I still get changing sensations even though I am much better. When I have had along day I now feel a very mild rocking sensation in my head, even when I am sitting. Nothing ever stays the same with this stuff. I also feel that people who know can't really conceive of the fact that I am still dealing with this. I try to put up a good front but i have alot of days where I just am soooo fed up with it all. Hbep, you have made a tremendous amount of progress and we have only one choice and that is to stick it out. I think we all question our diagnosis but one thing is for sure..there is no magic pill.
Just so you all know it is 12:00 in the afternoon and I am still in my jammies and don't care....I also don't care about the giant pile of clean laundry that needs to get put away. What I am really looking forward to doing this summer is definitely riding my motorcycle. Getting a new helmet with really wild graphics on it to celebrate!!!! Yahoooooooo!!!! O.K Jenn....where are you and how ya doin? And by the way where is that Subs man?? Come out, come out where ever you are. As for the rest of the dizzies out there...sounds like alot of you have also made some great progress. Emsybob, Ilia, Willsmom, where's Navelis and Barnsley? Please forgive me if I don't mention everyones name but I really am tired today.

Love to all and all the best,
Kathy :yawn: =me yawning

Hi Kathy & All

...."And by the way where is that Subs man?? Come out, come out where ever you are. "....


Hey---"wild thing"---I've been out and about---Just got back---from the walk with the German Shepard(120lbs)---still doing them during the day and at night also---moved to High Index Progressive Lenses---had some probs---for about a week---really nothing to speak of---then---none for the last three months........still at 100%(knock on wood)----and read the post just about every day.....looks like the old crowd...is getting better and moving on....that's good....as for me----think---I'm done with it---at least for now!!

:cool:

Hi you all,

just thought i would drop a note to say hi to you all, and I have read all your posts and relate entirely to all that you say.......especailly - living within ones limitations. Like you all I am too feeling much better but not altogether better either. Like you all tiredness and paying attention makes it all worse.

So glad you are all on the mend.......hey subs did wonder were you went to and yes like you all us oldies seem to be moving on and not on here so much!

But still thinking of you all none the less, stay in touch.

Ilia

Hi, All!
I wanted to say that since I am about 85% to 100% these days, it really makes a big difference when I overdo! I decided since I came home from the Balance Center 2 weeks ago I was going to go on with life as usual and do everything that I would normally do. I am tired!!! I do notice that when I get tired, I feel so much worse. I am trying to stop and take at least a short nap if at all possible on a busy day. Today I didn't have to go anywhere and I am like you Kathy, it is 6:15 pm and I am still in my PJ's. Just don't want to get ready. Just want to rest!!! With two very active little boys and a puppy, and a business, rest isn't easy to come by!!!
The PT at Chicago did tell me to expect to feel sudden sensations of feeling "off" from time to time even when I am at 100%. Just takes awhile for it to completely leave (as if we didn't know that already!!!)
Anyway, it is so good to hear that you all are getting along better!!! What I really hope, is that by summer I am 100%! Won't be that long before flower season comes and I love flowers. Would truly love to be able to plant and enjoy. I know all of you have special things you are looking forward to doing again and truly being able to enjoy them!!!!
Blessings and better days to you all!!!
Vicki

Hello Ruth, Scant, Subs, Vicki, Ilia,

Really, really good to hear from you. I can pretty much relate to everything you're saying, I think that's why it's so good to have contact with other dizzies, my friends can be very understanding, but ultimately they can't really understand, that's the difference. Like you, I would describe myself as working within restricted limitations. I know you'll understand when I say that because I was so flipping ill, this seems like a party in comparison, but then again I am simultaneously cheesed off with it all, after 17 months enough is enough, but you're right, Scant, there's no choice but to trog on - keep trying - keep pushing. I laughed, Scant, when you mentioned 'micro improvements' that's the way it's going with me, I am actually blown away by how slow this has been, how long it has taken to get here, and how far I still have to go. You asked about work, Ruth, In short, I am ok now working at a computer at home - although my work load is not currently heavy. I do have off days which affect me both inside and out, but my major problems are going out and about. I actually sometimes wonder whether working at home is both a blessing and curse. A curse because if I had been absolutely forced out every day, I actually wonder whether it would have been awful for a while, but would have built up my compensation quicker. I also think that because some days I don't test myself because I don't have to go out for long periods, I can't gage how well or not I would have done. I make sure I take a brief trip out every day, and normally do fine, but my problems are definitely related a lot to duration. Having said that I make sure I am out and about all day every weekend, and how well I do varies a lot.

I have more stamina these days, am able to do more - can often sit in a busy restaurant and be somewhere in the 90 to 100% range. I can walk about outdoors, stay out for whole days with my symptoms going from really good, to lightheaded and then sometimes descending into very off - disorientated etc.... I do still get days that are simply bad from the get go, very light or heavy headed, vertiginous, these can often be linked to being a little bit tired, not having slept well, always, always, time of the month, or sometimes they just happen, can't say why. I've just had a bit of a major blip, closing my eyes and spinning madly at night, but I'm pretty sure it was linked to a difficult VRT exercise, it seemed to coincide completely and is now easing up again. That had stopped for me a while ago. Shops are the major, major hurdle - this is where the micro improvements really apply - I am better than I was but it's soooooo slow. I've wracked my brain as to why shops, why not a cinema, not restaurants, guess it's the looking side to side, wanting to assess things, rather than just wandering around. I continue to improve in that area, but I'm a long way off a happy 3 hr shopping spree. I guess that's where the frustration kicks in, obviously my limitations are large. My best friend is heading off trecking around South America for a month - I would dearly love to be going with her, and I suppose that's where the realisation of how far I have to go kicks in, there's no way I could do it at the moment. Although I am determined to be able to do that kind of thing one day.

I'm about to test myself. There is some further training I wanted to do before I got ill, I've put it off for over a year but I applied a while back and start this week. It isn't a massive work load, but every two weeks I will be required to participate in 3 and a quarter hour intensive learning sessions with a group of people, plus course work, plus the odd whole day on a weekend here and there, plus getting to know a lot of new people. I'll admit I'm petrified but it's something I really want. After much deliberation I've decided to give it a go, the worst that can happen is that I have to drop out and start the course again at a later date. They know I'm ill - I decided to be up front about it - no point hiding it. I am sooo scared, but I'm equally scared by the prospect of just putting my life on hold. Also, like you say, Scant, sometimes if I am forced to focus on something else, the dizzies can actually abate, so it might be ok, and if it's not, at least I tried.

I'm so sorry about your friend, Ruth, my heart goes out to her. I know it's little consolation, but maybe she has just had a virus that has knocked her for a few weeks, but because she compensated previously she'll be back on form much sooner. Every single time I get any kind of virus I am amazed by how much it throws me. I mentioned that VRT related bout of bad spins I just had, I forgot to say I also had a stomach bug, think that may have caused it too. Also, regarding your worries about off days and starting a job, I know it's small consolation but sometimes employers can be understanding. A friend of mine has a serious back problem. He has to take more days off than other people, although it's different from the dizzies, it's similiar in that when it's bad there's nothing he can do about it, he just can't move around. His employers have always been fine about it. Alternatively, one of the good things about working to deadlines at home is that I can choose when to work, and rest if I need to, ever thought about going freelance?

Anyway, I have rambled on, it's nice catching up with you all, and it's also good to take stock sometimes,

keep in touch,

best,

hbep.

Hi hbep,
Great to hear from you. Like everyone else in this thread - everything everyone is saying - I'm thinking "that's me!!!"
I think you're right about my friend - I reckon she picked up some bad virus. I'm keeping my fingers crossed for her.
With regard to work, I'm thinking about maybe getting something part-time to begin with. What exactly, I don't have a clue!!! (It's a good job I saved quite a bit whilst I was working!) :)
I think we have all come so far since last year. I hope Jen is doing o.k. If someone is away from the boards I take it as a good sign. :)
Good luck with the training!
I will keep popping back here to see how everyone is doing!

Best wishes,
Ruth
xxx

Hi Hbep

Great run down---glad your taking a shot at the "further training"---think that is a good move--and---that you will get through it---and be better for it.

Think one of the things that forced the issue for me---was volunteering---as a Internal Revenue Service(IRS) Tax Aide with the Tax Counseling for the Elderly AARP Program---its Tax season---here--in the good old USA!

-----the training/school---was a bear---but--hey---I figured since---the U.S. Tax Code is so convoluted and "insane"---it could just be the right place for a "Dizzy Person"---turns out---I was right---passed the IRS exam with flying colors!---course now that I'm better---I may not understand it as well!!

Hbep---just wondering---since---vision plays such a huge roll---in this--what was the outcome or your final decision---on the glasses/eyes?

All of(if I remember correctly) the stuff you talked about---the weird, etc...is just the end of the road---kind of things---as the brain---does it's final readjustments------the peripheral vision stuff---(shopping ----, etc...) was the last to go for me

---but even today---after being at 100% since month 13/14---at month 19 now---I still---on occasion---get a momentary twinge--sometimes when I am in the store

......Univ of Penn Doc's say---"Hey it took you many years(from when you first moved as an infant)to learn those moves---so take a deep breath---you learned it then--and you will again"

......when you think about it---given the amount of time that proceeded this---they(Doc's) have a point---I notice---with each new move(some unanticipated) a learning processes taking place---some times---I have to repeat it---several times---but the amount of the repeat times are becoming less and less

----since we are all on the same road here and traveling in the same direction----suspect it will be that way for you---also.

:cool:

Hey Ruth and Subs,

Ruth, the part time work sounds like a good move - ease back in gently. I can't tell you how many fears and anxieties I've had around work, what I can do, what I can't do. I saw another dizzy person talking about how her day is taken up with pondering the things other people take for granted, and I thought, yes, that's it, exactly.

Subs, thank you so much for your words. With regard to my eyes, I got my vision corrected with contact lenses, it definitely made a difference, but unfortunately it wasn't the total answer. Funnily enough, the next thing the neurotology department will give me is their eye exercises - they seem to work a bit differently from other places. He wanted me to finish all the 26 balance exercises first, then move on to the eye exercises. I'm not sure if this was the right move, I was going to find some on the net and just start now, but was a bit thrown by the blip I experienced with one of my last VRT exercises on my list, so figured I'd wait one more month till I go for my next appointment. Maybe they will be the key. Apparently they come on a tape - not a piece of paper - the excitement of it all, LOL.

Was very pleased to hear about your experiences on the course, also got to take my hat off to you managing tax training dizzy and foggy!!! I'm self employed so have to do some of my own minor calculations before I hand it over to my accountant, that's been difficult enough, particularly in my most dizzy period, trying to get my head round it. Although I take your point when you say 'the U.S. Tax Code is so convoluted and "insane"---it could just be the right place for a "Dizzy Person" Lol'd at that, think it's a bit the same here.

It also made me smile as I remember at my most foggy - early months of this, I was already enrolled on a recreational spanish evening class - always wanted to speak Spanish. I actually stuck out most of it, despite the fact I could barely understand English at the time. Although I can only remember how to say my name is and the word for umbrella.

Anyway, again, thank you for your thoughts, I find it massively comforting to be reminded of the science of this condition, makes me feel like I have some control, if not over the symptoms as they happen, then the way in which I can make the symptoms go.

best,

hbep.

Just wanted to add Hbep that as you remember I was incredibly nervous about starting my new job. I was thrilled that at least I wouldn't have to move around a lot but got thrown a curve ball when I found out for the first time that an enormous amount of talking and thinking on a totally new level was really sending me for a loop and like Subs said this is incredibly hard for a well person to do. As predicted over time it got better and better and I would say "wow not quite as loopy as two weeks ago. I still get thrown a bad phase and then once it passes notice my miniscule improvement. I'm sure there will be other obstacles to overcome also. I am curious to see how many hours I can spend in my garden, but I know that I have to open myself up to as many different areas that I can. Really not worried about the motorcycle as I know I am stable when sitting down. I totally understand when you get thrown a weird blip, and you made me feel better about the last major blip I had....but thery're still scary....no doubt about that. Remember when most of us were spending alot of time on our couches, too freaked out to move, and we might still be there if it wasn't for this board and everybodys input and knowledge that got us all moving. I know for me it's been along time now that I have cried my eyes out and pleaded with God to make this go away. I think I am also past the point of sticking lizzards in my ears if that meant this would all go away...however if I had to stick a lizzard in my ear to guarantee it would never come back...I would do it in a heart beat. Just your thoughts on taking a new challenge shows you are improving because there was a time when that wasn't even a possibility. Amazing how strong we really are...

all the best,
Kathy

Just wanted to add to all the newbies on this board..please don't think we are ignoring any of you, think of us as an example that you will all get better and that we have all felt what you are feeling but there is a light at the end of the tunnel. I think when we all started posting, we didn't have anybody before us to say..."yes, it takes a long time but you will recover. We all stuck with this board and was able to to see that over time we were ALL getting better but you have to work at it through tears, anxiety, panic, encouragement, tons of wisdom and a true belief in yourself that you will get better and tons of VRT anyway you can get it! Take it from the tree swinger herself.

Hi Kathy,

Thanks for your post, I do need those words of encouragement, I was just wandering around my flat again thinking, what am I doing? I must be mad, lol. I keep panicking that the first day I go will just happen to be one of the off the wall really, really bad days. I keep thinking if I just have a good day the first time I'm there, I can busk it after that :) And yes, you're right of course, I wouldn't even have been thinking about this a few months ago. Although I'll definitely take the lizard in my ear if someone proves it's a cure, lol.

And of course, to all the newbies, it's true. It's a slow process, no doubt about that, but what it isn't is as hard all the way along. Like Scant, I remember the awful, awful first months - foggy, confused, full ears, vision all over the place, the endless motion, barely able to read/hold a conversation, just awful. Didn't think I could cope, but I did, and it gets easier, honestly. I didn't believe it when someone said that to me then, but it does. This is a cruel condition, but it gets kinder as it goes along, and for many it goes completely eventually - still waiting for that day, but ever hopeful.

best,

hbep

Just typed a post then lost it. Agh.

Hi to all. Glad Scant and Ruth are ok ish.

Know just what you mean about limitations Ruth.

Scant - I get the movement in head a lot.

Well after a good patch I am now in a bad one as period started. Also have been teaching all week. I get so exhausted and stamina so low - this normal for this? I also cannot picture working full time again for some time. It is so frustrating.

So thanks to ilia's support and advice, I am going to see Prof Luxon in London. I am just sick of having doubts and I want to see someone who knows exactly what they are doing to be honest. My negative ENG has been my main incentive or reason for London.

So I shall keep you informed.

In the meantime, I am afraid Ive not yet reached the stage of some of you - where you are not on here as much. Apart from when I work, I am on here everyday as these boards are my main source of support for this nightmare. I realise I am not alone in my warped world.

Thinking of you xxx

Hi Emsybobs

..."going to see Prof Luxon in London."....

Good move!!!!!!!!:cool: :cool:

:cool: