My problem that's still here after 34 years

Yes Kathie, that's what I meant. Thanks for your input, I appreciate it. I spoke to my doctor regarding this and asked him to look into setting me up with someone regarding the therapy. It's funny, most of the doctors I have seen over the years never offered any advice or alternatives. Thank goodness for the Internet because we can dig about on our own and explore other avenues. Instead of my doctor suggesting it, I'm suggesting it to him.  

I have a few aces up my sleeve which I will look into, but once it's exhausted, that would be it. It's hard to accept this "thing", especially since it's such a "nothing" condition which we're always told is not serious, but my god, it has a devastating effect on your life, not to mention the lives of those close to you. Of all the people in my family, I feel guilty for my father for what I've put him through. Even if I deserved this, he certainly did not. He worries about me, poor fellow. 

As for you, please keep at it. If something isn't working after a few months, move on and try something else. The one thing I have found personally is that doctors aren't always right and sometimes they just don't know. If you find a good doctor, don't let him or her go! My best to you.

Thank you rocksolid. I am glad you mentioned it. Though I had my eyes tested, this was in 1982 and I was young, spaced out big time and not analytical. I assumed they did what was necessary and that was the end of it. I did check up on this and I've written down the name on a piece of paper, so I will definitely look into it. There are certain things about this condition that apply to me, but not all, but it's enough for me to want to know more. I've now written 4 things down on my paper and I'll check them off. It'll take months or years to go through it all, what with the waiting and trial and error, but if I can feel like how I used to feel when I was 18, it'd be worth it. So, thank you for putting it out there.

Thank you anne. Perhaps you're right about more than one thing going on. Sorry to hear that you had possibly THREE! Must have been unbearable. I definitely want to look into that BPPV thingy. Regarding the Epley maneuver, did you get dizzy while it was performed? Did it last long? I'm terrified of dizziness. Real catch-22 situation for a lot of us eh?  

I Googled silent migraines before and I'm very sure it's not that. But interesting point you made about having more than one condition. Even if this were the case and I found some relief, I'd be way better off than I am right now. 

Thanks again.

Hi Bestie, yes at first i was overwhelmed and thought i would have to give up working and be housebound,  but now i now what the triggers are i have improved.  If i'm out and feel the dizzy's coming on, I take deep breaths, keep calm and try to walk through it.   I know that reaching up to high cupboards is a trigger, looking upwards is a trigger, walking out the front door in the morning and turning round to close the gate is a trigger.  Getting dehyrated, not eating regularly and lack of sleep are triggers.  Over stressing my eyes on the computer is a trigger. Bright lights are a trigger, even sometimes the weather.   I don't think i will get a resolution to my neck problem as i have a bulging disc.  When i saw a consultant about another condition she saw an x-ray of my neck and said 'that's going to be a problem for you' at the time i never asked for her to elaborate but i think all my problems may stem from that problem, though who knows really, its so complicated liking searching for a needle in a haystack.   I did get dizzy during the Epley and at that point i was quite low, so just cried on the 2 occasions i had it sone,   the epley has never really made much of a difference for me, so i know that if i wait a while the crystals dissolve by themselves, ususally takes about 4 to 6 weeks to improve.   I'm adapting to the dizziness because i know what to expect and that i have good days and bad but never as bad as when it first started and i could barely walk in a straight line and was crawling around on the floor one morning.   I think the ongoing stress of it may have started the migraines and the visual vertigo and also the stiffness in my neck affecting the migraines.  I didn't feel as though i had migraines but since the doctor told me the tablets have made a big difference. I had noticed that i was waking in the morning with a dull ache behind my left eye and a tightness at the base of my neck.    Also since the menopause all this has started for me.  The doctor said this was probably a lot to do with it. I think he's probably right. I've also tried to cut back on sugar and now only use brown sugar and i no longer have much caffeine, barely any chocolate as that triggers the visual vertigo.   It's about working with what i know now.  Hope you can find what triggers you may have, it's not easy and i am pretty slow at working it all out sometimes but over these past 2 years i am learning.  Hope you can find some answers for yourself because although we have this condition in common we still are unique in what may be our particular triggers.  Stay strong  

Hi anne. Oh jeez, that's terrible what you went through, especially initially. And all those triggers! I wish there was something I could do to get rid of it for you and all the others here. I never had triggers. When I first got this, I used to have my mother and granny help me to go to the washroom. It was difficult to walk in my own home.

I'm glad I found this forum and I'm also searching the Internet, but what confuses me is that I can associate with many things I have read, both here and elsewhere. It's not straightforward. I see what you're saying about a needle in a haystack. For example, there's this bobbing and swaying thing (reduced a lot now, but my god, in the early days it was out of control) which sounds like Mal de Debarquement Syndrome but then there are other things which sound like vertical heterophoria like someone else mentioned here. After so long, perhaps one has to just live with it. Sigh. Thanks for the encouragement. 

As for you, you mentioned the neck bulge in your disc. It's possible that it could have caused it for you or contributed to it. Spinal column, such a sensitive area. Any pressure on nerves there, it's bound to cause a lot of heartache. I'm assuming you followed up on it? Not sure what can be done. I know there are things like traction or whatever it is they do to relieve stress there. I suppose there's surgery, but being in a sensitive area, perhaps it's a last resort. But you seem so strong and able to cope with the dizzyness. Tough lady, keep it up but if you haven't, perhaps you should pursue the neck issue and see where it takes you. Good luck and I hope you beat this thing. I hope we all do. All of us here seem to be suffering needlessly and I hope someone finds a cure. 

Hi Bestie

thanks.  I'm not that tough though, a bit of a wuss really, but i think you are also tougher than you think.  I read your post about panic attacks and fearing what might happen is the fear that keeps you gripped.   I don't know you, of course, but my bet is that none of which you fear of that will happen, you won't lose control and end up a screaming mad woman.  You know you will come out the other end, as you've already done so,  and if the worst comes to the worst, it would be very uncaring for no one to help you out and offer you some support. 

I use to suffer from full blownn panic attacks for nearly a year, i had a financial problem at the time, and i wanted to run away, do something, for fear that i could not control the situation, I was unable to breathe properly and almost immobilised, but throughout it all i never once collapsed in public and i can assure you the panic attacks i was having were debilitating and exhausting and would strike out of nowhere.  I was having quite a few every day for a year.    But from them i learned that i am never going to allow myself to spirral back out of control like that again.  I give myself a good talking to now when i start feeling overwhelmed or out of control and say 'this too shall pass'.  Even if we don't beat this thing i am not going to allow it to make life any harder than it need be.  Sending you a big cyber hug, be gentle with yourself, you/we shall overcome  Hold one nostril closed, breathe in, close the other nostril and breathe out, really helps.   

Thanks Anne for the breathing tip. I did that for a while before, then I stopped. It's one of those yoga things, isn't it? I am pretty bad that way. I am impatient and want success now! lol. But you are right, I should do that again and just keep doing it. I'd give you a cyber hug back, except I got one hand covering a nostril at the moment...just kidding. I'm so silly you want to smack me sometimes. Well, gotta be crazy and laugh, otherwise it gets too much. So a cyber hug right back at you. Thanks again for the encouragement.

oh yes definitely got to laugh, she who laughs, lasts

Hey Steven. Thanks for the message. I've had this so long that I've seen changes in the condition sometimes without even doing anything. To answer your question, no, I never feel panic just before the dizziness comes on and I don't think I panic for no reason. For me, the dizzyness would come on suddenly. No triggers. It's the dizzyness that would send me into panic mode. I'm terrified of it, yet, I never once thought I was dying or going crazy. I have read many people who suffer from panic attacks think that they're going crazy or that they're going to die. I've never once thought that, so in a way, I'm lucky in that respect. 

For me, my 2 biggest concerns are fear and control. I want to stop fearing it. Even though I went through the dizzyness so many times and I survive it, each one seemed just as scary. The realisation that I'd come through made no difference to me. I was always terrified.

I always fear losing control, especially in public. I don't want to start screaming and yelling at total strangers to hold me or stuff like that. I want to be able to handle it myself, calmly and not like some idiot screaming my head off. The thing is, I'm very aware of everything, so if someone went "typical, looks like he had one too many" or "another drug addict lazy bum", I will be aware of it. 

Anyways, I appreciate the post and you mentioned something that I feel will be helpful but I find so hard to do. One is to talk to someone and the other is to get my mind to concentrate on something else. But when you're having a panic attack, it can be hard to think like that and it will take some training, but it's definitely a good suggestion, one which could help others as well.

i know  panik attacks are very hard to control and no matter how many times you re assure yrself it still doesnt go away but ive managed to control them to a certain extent using my own methods . seems asthough im wrong in trying to think it was all to do with  panik/anxiety in yr case,but i really do hope you find some sort of relief.

Thanks Steven. You've given me good advice and I intend to try it. I think this is a great forum where we can learn something from each other. Well done to you in coping with it using your own strategies. My best to you.