Just a little post to say how are you both Jonathan and hebp? Havent heard from you in a bit... Any better jonathan? Hbep - have you tried the migraine drugs? Still doing VRT? :wave:
xxx

HI Emsybobs,

I was also wondering about Jonathan. Wonder if he got better, hence dissapeared.

I dumped the migraine drugs after 2 days - couldn't hack it - side effects etc... Might give different ones a go at a future date, but am doing ok at the mo, and want to try some alternatives for dealing with the headaches/tmj before I resort to drugs again. I'm up and down, more up than down. Still restricted in what I can do - getting very tired is out - but around my flat mostly 90% and out and about it varies.

I'm getting there. I think I may never recover 100%, but that's not as terrible a propsect now as it used to be - I can function for the most part bar the odd set back.

Hope you're doing well,

best,

hbep.

Hi hbep

Glad to see Emsybobs asked---wondering myself.......

......"more up than down".....

How about the vision---do you think that is holding you back a little---or did you solve that issue??? And the VRT---still doing them??

:cool:

Still keep hoping hbep, dont give up, were london confident of a recovery for you????

Wondered also - you still doing VRT? How long you been doing them now???

xxx

Hello there,

Subs, I definitely resolved the eye issue - wear contacts full time - they have corrected the imbalance in vision and yes, this definitely helped.

As for VRT, ok I admit it, I've got v. slack about it, lol. The hospital booked me in for a fine tuning VRT appointment, which then, much to my disgruntlement, I have had to wait over 2 months for - still a few weeks to go. NHS waiting lists - a disaster. I had finished my balance related VRT - and now my problem is predominantly visual vertigo - I know what I need to do - the eye exercises, and it's good that you both asked, as I needed a reminder that I must get back on the case.

I did about 8 months of VRT Emsybobs, and should stress again that I am SO much better, and you will get better too. I generally feel a little off/something slightly amiss - occasional bits of movement on sitting or lying down, but nearing normal in familiar or quiet environments - fine in the cinema also. At these times my head is mostly clear - the fog mostly a thing of the past. My biggest problem is busy places/crowds/shops etc... I still get blips, horribly lightheaded days - return of bigger vertiginous sensations. Obviously the time of the month is often a culprit here.

I think my - maybe I'll never be 100% comment - is my attempt to accept that this could be the case. I suppose I haven't given up hope, I am more trying to inhabit a place where because I have accepted the symptoms I try to carry on with my life as normally as possible - i.e accept them as a part of me but try not to let them phase me or depress me. Siumulatenously I am aware of the possibility of full recovery and obviously would be delighted if it happens. Hope that makes sense.

Hope you are both doing well,

best,

hbep.

Yep makes total sense. Wow you can do the cinema, thats is good! So the dark does not phase you - did it used to? Did you ever have the dizziness in the head (I had a feeling you didnt) and has this gone. Basically what dimished for you through VRT mainly?

xxx

Hi hbep

Excellent progress especially on the vision---do not know---for sure--but:

...."I think my - maybe I'll never be 100% comment - is my attempt to accept that this could be the case."....

---when I got into the 9x.xx% range of compensation---the trajectory stayed the same--i.e., up---but the speed seemed---to me---to slow a bit---but eventually hit 100% and---in the beginning of that did the---100% to 9x.xx% "dance" for a couple of months---don't get me wrong---felt good---but tried to figure it out---finally came to the conclusion---after some pseudo-tests---that it was happening---when I made a move that I had not made before---or went out and about---to some where---with a visual scene--that the brain had not worked out the math for---It seemed to me---that the brain had worked out and reestablished and locked in about 99.9% of the math---and---when presented with that last .1% went to work on it---so I tried to think and do things there were different from what I had done before---shops, sports, VRT, etc.....and---low and behold---my guess turned out to be my "lucky guess" cause it worked.......

Not sure that would be the way it would go for all---but it kind of fit into the "medical research envelope" of this junk---and worked.....

In any case---it is back to the VRT's--hbep

---both you and Emsybobs are going to beat this--and achieve 100%---Terri--said she got a place set aside on the vestibular survivors bench for---ya!!

:cool:

Thanks subs - needed that - started off as a good day but after a couple of hrs at the shops I went downhill :dizzy: :bouncing:

Ah well, im trying to positively affirm stuff to myself and guess my shopping trip is all good VRT like you say about "locking in" situations.

xxx

Hbep:
Don't give up on the 100% mark. You'll see, although at a very well known miniscule pace you will notice another notch upwards. I just got back from a 3 day training seminar and probably 4 months ago would have been scared to death to go. Like you, when I am tired, I feel it more. An odd thing that happened to me while I was away, the co-worker I went with got on a skiing simulator and it really bothered me to stand behind him and watch him because it really gave me that roller coaster feeling and oooooh.....I didn't like that. You'll get there. Look at Jen...said the same thing and then notice more and more improvements. 90%!!!!!!! is absolutely fantastic.

all the best,
Kathy :D

Hello Subs, Scant Emsy,

Subs,

Think I will print out your reply and carry it around in my pocket. Thank you for that - let's hope it works that way for me. Funnily enough was at the cinema last night. We got there early so went in to the very busy cinema cafe. It only occured to me after I'd got home that apart from the odd tiny visual wierdy moments during the film - I had been 100% fine throughout. On account of the set backs I'm still capable of experiencing and the fluctuations I guess I am always wary of getting too optimistic - this rubbish is nothing if not back and forth - only yesterday I went for a walk and was a bit of spacey headed thing throughout, but what I am going to do, is try and push myself more. The next step in the get well program is possibly badminton with a friend, and more dreaded shop activity.

Scant,

It's funny you should mention that comment from Jen :) I had exactly the same thought even as I wrote them post - a sort of, hmmm, who did I see say this before? And then remembered it was Jen. Glad to hear you're doing well, Scant.

Emsybobs, With regard to your questions. If by dizzy in the head you mean the sort of wave sensations, then no I didn't have that, and no, I never had that many problems in the dark. Although the cinema did use to make me a bit vertiginous. I think with regard to the VRT, basically with me it helped most of it really - especially the movement when still/vertigo. The only thing it didn't seem to stop was the episodes of extreme light of head/spaceyeness particularly around my cycle - this is why they think there might be another cause for that stuff - namely migraine.

Anyway, thank you all for your kind words,

best,

hbep

Hi Hbep, yes must say your dizziness is in lots of ways different to mine. By dizziness in the head I mean spinning in my head, can be v intense, have had it from day 1, its there all the time, at its v mildest its like lightheadiness but rarely at the mo. It makes my eyes feel all weird and stiff. I have big probs with the dark and cinema, not because of the moving screen but because of the dark.

Keep going, u'll get there xxx