I am two weeks out from the final Epley and had the ENG done Friday and I am losing ground. I am having major episodes of dizziness that are totally incapacitating. Very head sick and depressed.

I suppose the healing did not start until I finally got a proper Epley done so I had months of white knuckles before that.

I just keep looking for something positive, some small progress to hold onto and day by day the symptoms increase and the road ahead looks more bleak. I am so disabled my wife has to do darn near everything - this is not my style, I am very type A and love to be active.

James (Rik)

Well, well, wondered if that was you. I'm a fellow Portlander and Dr. Hughes follower, if you know what I mean. I'm beginning to wonder if the anxiety isn't causing more problems than the complications from the Epley and dizziness. What about seeing someone for some anti-anxiety meds to get you through until you can feel a bit better? I had to do that for a month in the early stages of this stuff (about month 4). I took Xanax and it did help get me over a hump.

Did you go to the gym? How did that work?

T

We are so close and this forum wont let us connect. Do you know about the PDX Craigs list. Do you work in PDX.

While anxiety is certainly an issue I am just plain neurologically sick.

Jim (who you know) says it is most intense the first few weeks then settles down into a nusance...is that what you found.

I live a very organic lifestyle, like you I do yoga, meditate and take good care of myself. My anxiety disorder was well under control until this.

I am also very chemically sensitive and meds are not an option unless I'm dying...so I walk, exercise and hold on.

James (R)

Hello there,

I've seen a few of your posts and have been meaning to write for a while. I wanted to pick up on what Treefarmer has said re anxiety. Obviously there is no question that you are, as you say, neurologically sick, but anxiety and depression are the enemy with these vestibular conditions. This works in 2 ways - anxiety undermines your confidence, ability to keep active, postive etc which is critical for recovery, and physiologically, anxiety and depression actively impact on the brain's ability to recover from this condition. In that way anxiety and depression are BIG problems when it comes to moving forward with this. Believe me, I know how awful it is, it's a totally natural reaction to panic in the face of these awful symptoms, I did at first, big time, and yet to recover it's fairly critical that you work against your instincts.

I experienced some awful anxiety at the beginning of this. My thoughts were probably something like this - I feel awful, it's getting worse, I'll never get better, I'm going to be disabled, when will it go, what if it never goes. As my anxiety escalated so my symptoms escalated, it's like stoking a fire. I'm not saying by removing anxiety you can remove your symptoms, that's clearly not true, but you CAN enable your recovery.

Eventually, and it took a while, I learnt to change my thinking. I did this in a number of ways. The first and most critical one was to see that people do get better. Believe me, people with symptoms as severe as yours, who would come to the board in tears, writing posts that they were so disabled they didn't know how they were going to cope anymore, are now walking around dizzy free. I was also really interested in something Subs (a source of total inspiration to everyone on the board) said. He used to work on submarines and said that one of the reasons he found it easier to cope was because he was used to the constant sensations of motion, the ground moving under him etc... Because he was used to those sort of sensations, he was able to work 'with them' not 'against them.' They didn't frighten him as much. I slowly started to change my thinking to 'These feelings are horrible but they are temporary. They are a perfectly normal response from my brain to the mixed up signals it's getting from my ear. This is my brains attempt to work out what's going on. In time it will learn to cope and I will get better.' I learnt to relax in to the feelings, understand that even though they felt utterly awful, they were, in many ways ,no different to a cold or flu, symptoms of an illness that will pass. I learnt to let go of my frustration and relax into the illness, accept it was going to take time, it was tedious, but I would get there, and I am.

You are in the eye of the storm now, your symptoms are at their most severe. No one can ever say how long it will take. Some people 6 weeks, some 3 months, some 6 months, some longer. What I can say is that the symptoms start to slowly, at first almost imperceptibly, lessen in severity. Sometimes a worsening of symptoms precedes improvement. I have found that my most awful phases are often followed by improvement. I think this is because the brain has a lot of 'material' to work with and is frantically working out how to compensate. Hence being very dizzy is followed, eventually, by being less dizzy. You do not feel this awful for the whole length of time you have it. You will move forward, then take 3 steps back, then forward again. This is how it goes. What you will be able to achieve will be minor at first, this is very disabling, do what you can, rest when you can't manage to be active. Slowly, very slowly you will be able to do more.

Most importantly, I will say emphatically, you WILL get better. I was a ***** headed, vertigo ridden mess. Too ill at times to read, think straight, cross a road, I lay on my bed with it moving under me like a lilo, being pulled ferociously in a circle, sat in a chair and was violently pushed upwards or forwards, and a whole host of other horrible symptoms that seemed at points unrelenting. It has taken many months for me to get where I am now. Able to go out, function fairly normally, I still have problems in shops, and experienced a small set back recently due to a severe headache problem BUT I am able to recogise myself now. I am getting back the person I was before this started, you will too. You WILL get better.

Subs also described this as 'the fight of your life' - the fight is not physical, it's mental - the constant struggle to stay positive and active in the face of something that could try the patience of a saint. You have clearly beaten anxiety before, you can beat the anxiety you are experiencing about this. You said you can't use anti anxiety drugs, so you are going to have to use cognitive behavioural techniques. You have to turn your thinking around. Channel all that energy in to 'I will beat this thing.'

You will get better,

I hope this helps,

best,

hbep.

hbep -that was a fantastic post - thanks from the bottom of my heart as I'm sure James and everyone else will say. You've put everything into persepective so beautifully and so encouragingly - better than all the drs. ever can. Even though my BPPV has not been anything near as nightmarish as James' or as you say your condition was, I know those feelings of anxiety, panic, wondering if I might be a semi-vegitable the rest of my life. The last bad day sent me digging out the insurance papers for nursing home assitance through our sick fund scheme. Well I've had 6 symptom-free weeks - just the occasionaly "heady" feeling - and am daring to hope the worst is past.

James - we are all here hoping your recovery will be as hbep says. Please take heart and hang in there.
Madeleine

Just wanted to say thanks for your post hbep...v well written as always and it helped me...I find myself still having many days thinking I will never get better (in my heart of hearts I simply think I never will be). I know this is not good is it? I will try to do your positive thinking. I think I have got to the point about not letting the symptoms unnerve me, thats ok, I tell myself this is just my ear but my real problem is - looking to the future with this.

I am also v much trying to do more and to do things which not so long ago scared me...I am trying to stay active.

Hbep, soo glad you're feeling so much better, dont you deserve it... I hold onto hope in that the VRT really helped you - I hope it does the same for me.

xxx

Hi hbep

Agree---as usual a great post---and your right-----you have come a long way---and that was through a lot of hard work and sensible thinking--not easy to do---when this junk has you in it's grasp---glad your better!!

:cool:

Hi hbep, thanks for the great post. You described what I have felt and sometimes do feel so perfect. The best part is knowing you have beaten it and are almost to 100%. Being able to come here and see that others have felt the exact same crap sure has helped. Subs has helped me through some very rough times, times I thought I was for sure going crazy and that this monster was NEVER going to leave. I thank the Lord for finding this board and the wonderful people here. I had months of sitting in my house and not dare to leave it and today I have a full time job! To everyone I say THANK YOU and to the new ones--HANG IN THERE--its not easy but you WILL make it. Prayers, Belle

Belle - you do so well to do a full time job - can I ask do you get v tired with it? I am exhausted a lot of the time! How's the dizziness? Improvements? xxx

Hbep,

Thank you for your positive post. That's what I need right now. Like Emsybobs, after being dizzy 24/7 for the past 2 1/2 years I feel deep inside that I will never get better and I know that's not the right approach to take. I need to fight harder and try to talk to myself in a more positive way.

Mpaiement, I do think of you...I wonder if you should try and find a different/better specialist...dont give up on getting a diagnosis...Also start the VRT or ask your doctor if he/she would refer you for VRT - this is better as you will then have guidance on how to do it etc. xxx

We are so close and this forum wont let us connect. Do you know about the PDX Craigs list. Do you work in PDX.

While anxiety is certainly an issue I am just plain neurologically sick.

Jim (who you know) says it is most intense the first few weeks then settles down into a nusance...is that what you found.

I live a very organic lifestyle, like you I do yoga, meditate and take good care of myself. My anxiety disorder was well under control until this.

I am also very chemically sensitive and meds are not an option unless I'm dying...so I walk, exercise and hold on.

James (R)


James,

I don't know about the PDX Craigs list. I'm currently not working, but finishing up at PSU. At the moment I'm not recalling the Jim you refer to, but he's right in that it is the most severe in the first few weeks and then settles to a nuisance. After that it starts to lessen into good days and bad days, with the good eventually winning out until you're back to yourself. Hbep's beautiful post so correctly and eloquently underscores how it goes. Holding on is what we all try to do. Keep it up. This too shall pass . . .