Hi All'
I need some encouragement. I am about at my wits ends. I am going through a major rough patch and I am trying to convince myself that this too will get better. This time the bad patches seem to be getting much worse. For the past month or so, I have been feeling about 50-50. Half good, half bad. A few hour bad period would be followed by a few hour good period. The bad periods were bad but tolerable. Now since last Thursday, the bad have gotten significantly worse. I feel like I am on a ride and I want off. I did not do anything different to provoke this. No long drives or over exertions. I just feel awful. If I keep moving, it is better. If I sit still forget it. Just trying to type is a major task. The words are all jumbled. I feel like I have regressed a few months in my progress, sort of like I felt at month 2 or 3. It is now month seven. I have a lot of tension in my neck and it is causing severe headaches at the back of my head, almost like someone is pulling my hair.
I am starting to get very depressed. I want my life back. I was starting to feel like this was coming to an end only to have that taken away from me. I am so upset that I am shaking on the inside and out. No-one around me understands. I think they think I am making it up.
Any ideas of how I can get through this or why this may be happening.
I appreciate all your help
Mia

Oh no. I can totally understand where you are coming from! Unless our arms suddenly fell off, I don't think anyone would truly understand our pain. They can't "see" it. So I often wonder if they know just how awful I feel sometimes. I am having a good day today, but I had a horrible one yesterday. Headaches were terrible yesterday. When I woke up this morning the first thing I felt was the tingling in the top of my head. The only thing I feel today is the weight on the top of my head. My ear feels alot better though. I started taking Centrum 1 a days one week ago and I also started using Flonase once a day. I also quit smoking yesterday afternoon to see if that helps at all. That could be why I am even more spaced out today!!! The only time I remember not being spaced out was when I took the Claritin-D 24 hour. I felt like I could think clear, but at the same time I felt like I had drank a 24 hour dose of super duper coffee. It was alittle too strong and I could not sleep at night. Anyways, the weight on my head makes me feel very unbalanced. When I walk is when it is the worse for me. I feel like...I can't explain it. Like I am walking on moving water or on a trampoline or something. I know that it is awful. I could not believe when I first came here and found that so many people were going through the same thing as me in some way or another. I know our situations are not exactly the same...but don't give up hope. That is the same for both of us. I will not give up bc I remember all too clearly what I used to feel like and I am determined to feel that way again. No matter how long it takes me. If you want to talk, email me at larz278@yahoo.com. It will get better =) That's all we have to go on!

Hi Miza,

Hang in there, I am at month 13 - although due to my late diagnosis only started VRT 5 weeks ago. I am also going through a period of what seems like complete regression - for me this has coincided with starting a new VRT exercise. I have challenged my brain and it doesn't like it. For some reason you have decompensated a bit - take heart - this almost certainly means your brain is grappling with a particularly difficult bit of this head monster. Once it has worked out what's going on, you will compensate again and move on. The awful fact of it is, until you get better, you need to keep getting really dizzy, so your brain has some 'material' to work with, so you can push through to the other side.

I can't remember, are you doing VRT?

I am as despondent as you are, but LarLarz is right, we have to be absolutely determined to beat this awful rubbish - push on, keep active, don't give up. I have a new policy of soldiering on, going out, keeping at the exercise I'm doing however rough I feel, as I honestly think it's the only hope of getting rid of this nonsense. Try not to be scared by what's happening. You will get better Miza, the fact that you'd compensated so well for a while is a good sign.

take care,

hbep.

Mia

Yep---good advise---hard to do---but good advise!!

Hbep--

If I remember correctly you were off to get your eyes check---to make sure that was not holding you back---did that happen???


Went and had my glasses & eyes checked---after the Nuero-oto on 9 Sep said---it was slowing down compensation---and bingo!!--left eye was ok with current lens prescription---but right eye had changed---and need a new prescription for that lens---and of course---it is the right vestibular system---that has/had the "VN" & BPPV


---boy---this problem has so many twists and turns---just when you think--you nailed it---it something else pops up---darn thing is like an "oil slick" seeps out and spreads everywhere.


But all of that notwithstanding---still maintaining 100%---Knock on wood!!


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[This message has been edited by Subs30 (edited 10-07-2003).]

Hi All
Thanks for the cheering up session. I am just so depressed. I am trying to be positive but I am not very good at it.

LarLarz - I tried to email you but I got an error message that said this user does not have a yahoo account. Any clues why it won't work?

Hbep - You have been such a trooper. Thirteen month is a long time to deal with anything. I do admire your perseverence.

Yes, I am doing VRT. Mostly just the Cawthorne Exercises. The problem is.....I forget to do them when I am feeling pretty good. I end up doing other things which I guess is good as well.. The other night I helped my husband wash his truck. Maybe that made me feel whacked out.

Subs - Thanks for the insights. A while back I mentioned that I had transition lenses. The ones that change color in the different lighting. I decided to get a back up pair of glasses that do not have the transition lenses. Big mistake. Apparently my eyes have adjusted to the transition thing and can no longer handle clear glass lenses. If I try to wear the new glasses all the time my eyes really hurt.

Here is another question for all of you.... I feel the best when I am outside on a nice day. I could be feeling awful inside the house go outside and bam I feel instantly better. Unfortunately I can't spend my life outdoors. Any clues why this happens. My guess is that it is because the range of vision is so much broader.

Have a great day and thanks again

Mia

Hi there Subs,

Yup, saw the neuro oto, although was dissapointed not to get to see the big cheese in the deparment but her registrar. He was ok, although seemed to think that the difference btwn my eyes - one almost 20/20, the other less good was not big enough to interfere. He said if I'd been managing thus far without glasses, then I should be fine. Then again, that was BEFORE I was ill. I've been pondering this, not entirely convinced by his thinking. Hmmmm. The difference may seem small on paper, but if I cover my good eye, the difference is very marked. I could not function without glasses if both my eyes were at the level of the bad eye.

Anyway, you have reminded me to act on my next plan of action, which is to try one contact lens in the bad eye. He could be wrong - these things are so subjective, based on the experience of any individual specialist. As I said, trying to wear my glasses was punishing - total decompensation, back to as ill as I was at month 1. But I do feel that the frames and glass further complicated things. I wear very small frames that are constantly in my frame of vision - I have a small face, so a contact lens might be better. The optician said I could use only one which is great.

What do you think, Subs, I realise it's a tough call, but I have learnt to be wary of the idea that specialists know everything. The department I go to is very good, but still... I get so much of, what I call, visual dizziness with this. I realise a lot of people get heavy, hurting eyes, but my vision is quite literally off with it. Often I am not experiencing vertigo but a literal feeling of my vision being bad - in fact, like I desperately need glasses. Obviously the trigger is the vestibular neuritis, but my gut is telling me bad eyesight simply can't be helping. My only fear is how much horror I will have to go through if I break the cord on the compensation again by adding a new component.

I'm really curious what your neuro oto said - do you think he felt the problem vision in your case was a major part of your slow compensation due to it being accident related - i.e. went over and beyond a simple need for glasses?

Oh yes, was fascinated to read that your worse eye is on the side of your bad ear. I only had part of the ENG test, skipped the caloric, my ears are very sensitive, don't even like ear plugs, probably muscular spasm related due to the tmjd, so I'm not clear which ear is bad. But I would be willing to put money on it being the right ear - it's always been the most troubled, crackly, etc, and yes, it's my right eye that is worse. I read back over a post from Ruth, where her VRT therapist had said some people probably have a weak ear, like some people have a weak eye. When it gets attacked by a virus, the compensation can take longer due to the initial weakness. Seems my right side is letting the side down.

Anyway, I press on with my new all action plan, off out again tonight to see some comedy - I would always rather be in my flat - safe/feel better - but I've worked out that as I work at home, I have got far too comfortable with this and it's holding me back.

Was reading back over some of the stuff you have posted over the months, Subs, fantastic info, thank you so much, it keeps me going during the times I simply want to give in and give up.

By the way, Miza, I feel so much worse out of my flat - I think the problems are so particular in each case. All I can tell you is what I've told myself, don't avoid being in, if that's what challenges you. I am doing the reverse, forcing myself out, when I'd much, much rather be in. And yes, I do think it has to do with the type of environment that challenges you, I am troubled by wide open spaces, or large spaces with tonnes of info - markets, big shops etc.. I like small environments, little rooms etc... It sounds like it's the reverse with you. Sounds like you probably need to practice hanging out in your shower cubicle, or garden shed, only kidding, but you get my drift. Oh yes, also, just before this bad patch of dizzies and starting a new exercise I stopped my VRt for a week. This was idiotic, I was very busy, went to visit family for a few days, and I also think this helped to add to my current, horrible dizzies. I won't do that again in a hurry. Seems your stopping may have also contributed. I think it's a lesson for us both, don't take what gains you make lightly, or use it as an excuse to slack off, the VRT is soooo boring, but it's probably what has helped us both improve. We must keep at it through the good times as well as the bad.

best,

hbep.

[This message has been edited by hbep (edited 10-07-2003).]

[This message has been edited by hbep (edited 10-07-2003).]

Hi Hbep

....."What do you think, Subs....I'm really curious what your neuro oto said - do you think he felt the problem vision in your case was a major part of your slow compensation due to it being accident related - i.e. went over and beyond a simple need for glasses?"....


No---the Nuero-oto did not feel the accident was related to the current slow compensation---I then went to a Nuero-Optometrist---who found the right eye needed an upgrade in the lens prescription----if you recall---I had mentioned that I use both eyes---but not simultaneously---I shift from one to the other---depending on what I am looking at and how I am looking at it-----the position he(Nuero-Opt) took---was:


"Look the last thing you need---with binocular vision---and this---shifting of eyes---during the compensation period---is to---have unequal vision---between the eyes---so I agree with the Nero-Oto---and am going to change the prescription in the right lens---so that you have equal vision in both eyes"


So Hbep---I actually saw two Doc's Nuero-Oto & Nuero-Opt----one found the problem and the other one fixed it---if you will


---I think both of your eyes---just like mine---have to be at the same level---visually---to facilitate---compensation----I also think---and it is just a guess----that the Nuero-oto you saw---maybe wrong---about your eyes---not impacting your compensation----think that needs to be ironed out


---the question---is not---will my brain---eventually--muddle through----figure out---how to compensate---with the difference---but what needs to be done---to bring both eyes up---so there is NO DIFFERENCE---so that the brain has one LESS thing to factor into its compensation------and therefore can proceed at best speed---toward full compensation----i.e., I disagree with this:


..." although seemed to think that the difference btwn my eyes - one almost 20/20, the other less good was not big enough to interfere. He said if I'd been managing thus far without glasses, then I should be fine."....


So---I think you need to bring both eyes up--to normal vision of 20/20, etc......


......"but my gut is telling me bad eyesight simply can't be helping........ I break the cord on the compensation again by adding a new component."....

Its pay now or pay later----if you compensate---without your vision(with glasses) being accurate(correct)---then when you go back to wearing them---you will more then likely decompensate----while it is prob true---not fully & will return quickly---would that not happen now----in fact the more I read and reread your post---it would seem---the eyes(vision) is playing a large role in---your compensation process---as it did in mine.


And yes---it was the "right eye" and the "VN" w/BPPV is only involved with the "right vestibular system"


Interesting---that both you and Mia---have different---visual impacts on compensation---made me think of all things "submarines"---goes like this:

When you go to sea on patrol----70-90(or more) days---you can not see very far---so your vision get used to---seeing only close stuff----when you come back into port---and go ashore---for about the first two or three weeks----your eyes hurt like heck---water a lot---blink, etc....vision is a big player---even when your well.....

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Some advice I can give you Miza is to look up "neck stretching exercises" on the internet and start doing them. It will help with your neck pain and your headaches and surprisingly enough it will help relieve some of your dizziness...Those muscles in your neck can cause problems on top of your problems...Just try it and let me know how it works for you. And do'em atleast twice a day for a couple days. Take care and hope you're having a better day. fighter

I have realized and am pretty sure that my ear probs, pressure, pain and dizziness and EVERYTHING is being caused my CONGESTION. I have been reading about it and all of that. I had a brain MRI about 9 minths ago, so I know it is nothing on my brain. Had sinus CT which did show scaring from previous infections, but they were clear - even though at the time they didn't feel like it. I don't know if the congestion is caused by allergies or not, but I am using Flonase once a day anyway. I also quit smoking 3 days ago so we will see if this awful congestion ever goes away! Been going strong now for about a year. Hopefully some lifestyle changes are going to help me.

Hey Fighter
Actually my GP gave me some exercises to do in the shower in the am. I find that they make me worse. It is actually painful to do them.
I have an appt with an Orthopedist tomorrow. I want to make sure that it isn't just a muscular thing.
I am feeling a little better today. The weather is beautiful! 70 degrees and sunny.
I think the nice weather helps the attitude.

Thanks again
Mia

Hey Subs,

Thanks so much for your very thoughtful post. I think you're right, I'm sure the neuro oto was wrong on this score. He was very young, and I'm guessing quite inexperienced, certainly no fool - he knew some of his stuff, but my hunch is, not all of it. Stupidly I was so busy grilling him about migraine ( one theory I wanted to explore) that I didn't ask him, if it definitely isn't a problem, why his boss - the senior consultant, told me to come in to discuss it.

Anyway, I have done/am going to do 2 things initially. The first is to get yet another opinion. I have contact with Tom Boismier elsewhere on the net. I know you're familiar with his articles on compensation etc... Anyway, as I can, I thought I might as well write and ask his opinion, nothing to lose. I'm sure he will agree with you and the neuro oto/neuro opthamologist you saw. I wrote this morning and will hopefully get a reply tomorrow. Then I will make an appt with my optician and get one contact lens, which will bring my right eye up to the same level as my left. If that proves too difficult to handle, I will simply have to find a way to get to see a neuro opthamologist. This is going to be tough, it was hard enough getting in to a neuro otology department on the NHS. If the worst comes to the worst I am in the neuro otology department again on Dec 8th. I will simply have to be assertive, and ask to see the senior specialist and get her opinion.

If it is a matter of making sure the eyes are at the same level, I guess I should first at least try and deal with this through my optician. I am finding more and more with this, that often it's a matter of taking things in to my own hands, following my gut instinct etc...

Thank you again for your advice, I will keep you posted. By the way, brilliant about the 100% Oh yes, I did have one other question. In your recovery period, did you make a point of keeping very active? If so, how active? I realise it's difficult to be specific, but just an idea of how much you were challenging your vestibular system would be great.

best,

hbep

Hi Hbep

Think the key---with the eyes(vision) is to get both---up to snuff---so that---is out of the way---and---so when compensation is complete---no more changes will be required----would think the Nurero-oto---could advise you on what to tell your normal ophthalmologist---if you can not get to a Nuero-Opt.

...."I am finding more and more with this, that often it's a matter of taking things in to my own hands, following my gut instinct etc..."....

Lot of hard earned wisdom in that statement---Hbep!!!


..."did you make a point of keeping very active?".....


Yes--absolutely---I got it in last week of Jul 02---and got active---and stayed that way---no matter what----wind, rain, snow----whatever----never let up---even with a cold----took no drugs---of any kind----not because of any thing the Doc's said---but---because---everything I could find and read on this "Junk" said---go active and stay active!!---so that is what I did.

......."how much you were challenging your vestibular system".....

I would push it---to the limits---when it was clear---that I was getting close to that---I backed off---for a short time---and then went at it again---usually got passed the previous limit and then went on to a new one----backed off for a short time----then back at it again, etc....until it---like---Elvis "left the building"...so to speak.

Don't get me wrong----that worked for me---but it is not for everybody---for sure.


With 30 years at sea---in a lot of pretty rough weather---my body/brain/vestibular system---is tuned---for a lot of crazy movement of the----deck(floor)---so I did not find it very unsettling---to be faced with---those problems----it was a lot like being at sea in a heavy storm---and walking about---the ship(submarine)----think that had a lot to do with how much movement I could---endure---which determined how active I could be.


But---yes---very active, VRT Exercises, walks, run, mowing lawn, shoveling snow, painting rooms, whatever!


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Hi there Subs,

Heard back from Tom Boismier - and yes, as I suspected, he agreed wholeheartedly with you and the specialists you saw. Have just phoned the opticiian (I believe this is opthamologist in The States) and made an appointment to get a contact lens fitted. He also said he thought a contact lens might be easier to adapt to than glasses. He did say it was possible to compensate without glasses - but of course it could slow things down. I'll just have to see how I get on with the contact lens.

I actually find your description of keeping very active comforting. It reassures me that my recent resolve to grit my teeth and push myself is right. Again, as you say, everything points to this being a good thing, and I think, until recently I was kidding myself that I kept active, but wasn't really putting my money where my mouth is. Sitting at home day after day working at a computer is not keeping active. It seems that so far I have won back the things I put the most effort into - the ability to read and write, watch films - all of this was excruciating and nausea inducing at first, but I ploughed on, never letting up. Now it's time to fight the next battle, walking around out and about every single day, confronting large social environments with lots of visual stimulus. If I can win back the first area - I remember being driven to tears by attempts to stare at a page of print and now it's no problem - I can win back the other areas.

I smiled when you mentioned 30 yrs on a sub being a help through this. When I was a child we used to often take an over night ferry to go on hols. I loved it - remember going up on deck, staring out to sea, so exciting. Often, when I have experienced that rolling waves, or gentle rocking sensation on trying to go to sleep, I close my eyes and imagine myself back there, on that ferry, and it helps me drift off to sleep. The only up side of this hideous rubbish is that you get to experience sailing without having to leave dry land.

Hope you're still 100% Subs, and thanks so much with your help on this,

best,

hbep.

[This message has been edited by hbep (edited 10-09-2003).]