Hi there Ruth,

Sorry I meant to reply to your post earlier, but got bogged down in a bad bout of dizzies. Arghhh.

Anyway, just wanted to say in response to your post - have you thought attempting to manage the level and severity of the tinnitus with drugs. I know you have taken tranquillisers for the anxiety already - but have you discussed the possibility of trying those drugs which have been shown in some people to reduce the severity of the noise itself. Habituation is great in priniciple, but quality of life is also important. I was reading a long thread on the tinnitus boards about drug use for tinnitus - you've probably seen it too. I thought of you as you said if you could just reduce the tinnitus by 50%, there are no guarantees but with certain drugs it seems that is possible. I know of someone on the tmjd board who had roaring/raging tinnitus who got it down to manageable levels with drugs - I can't remember which one but I could look it up.

This wouldn't necessarily have to be a long term measure, Ruth, but it might be the break you need to get you to a different place. I'm not saying you won't habituate, Ruth, I think you will, but there's nothing wrong in getting some help along the way. If there was a drug I could take to stop the dizzies, which wouldn't hinder compensation, I would take it tomorrow.

Also, I was interested in what you said about your ears feeling 'dead' - what do you mean by that? It rang a bell as did the tight feeling in your ears. Now it's gone to both ears, I do wonder about a muscular/ ********ponent to this for you. Not sure.

I also wanted to ask about your VRT. I know you have said this before elsewhere on the board, but can't remember. Curious how long it took for you to see results. I think that different VRT places use different techniques. I know where I'm going they believe in doing one exercise at a time until it no longer makes you dizzy. (I haven't been yet, still waiting but am having a go at doing them anyway.) Did you do lots at once in sequence? Did the VRT make you feelworse initially. Did you think you'd never get better, that's where I'm at, lol. I take heart from the fact that you were so very dizzy and improved. I realise you still get dizzy occasionally but I need to hear from someone who broke the back of this dizzy beast who was also very bad with it.

Anyway, hope to hear from you, Ruth.

take care,

hbep.

Hi hbep,
To be honest, I'm not sure which drugs are useful for tinnitus. The only thing I've read which seems to have a really good effect in lowering the volume is Klonopin. Although this also seems to be a bad choice in that it is highly addictive? Don't really know. I would be interested to know about the perosn on the TMJ board and what they took. The left ear is a lot better today - only noticed it once - so the right ear is still the main culprit at the moment. The fact that the left ear has played up a couple of times is making me think that stress/muscle tension are possibly playing a bigger role than I realised. Interestingly, a lady who lives opposite me got tinnitus after having an ear infection a while back - she now gets it quite often, but it is interspersed with days of no tinnitus. She is convinced hers is stress-related.
When I am eating, I pretty much can't hear it at all - I must be a loud muncher! http://www.healthboards.com/ubb/smile.gif Last night I woke up and it was really bad, despite the fact that I had the sound machine on booming out the sound of rain. Yet, when I woke up this morning it had gone down to a much quieter level. I know many people say their's fluctuates, but I find it bizarre that it doesn't just stay exactly the same. Enough of me.
About the VRT - oh god yes they definitely made me feel worse in the beginning! But to me that was a sign that I needed to do them, as I had been walking around like a dalek for so long! Back in January the ENT consultant gave me a sheet with the Cawthorne Cooksey exercises on them to get me started while I waited for my appointment with the balance guy. To be honest I started to think they weren't helping as my progress was sooooo slow. THe problem was, some of the exercises really weren't that difficult for me, so I was probably wasting my time doing them. I agree that it is really important to find the exercises that are appropriate for you specifically, although obviously any exercises are probably better than none at all.
When I went to the balance guy (in March!) he gave me a very small number of exercises to do, but I think what really helped was his suggestion to buy a piece of foam to stand on whilst doing the exercises. (I wrote quite a long post here back in March explaining the instructions he gave me - if you search under 'vestibular therapy' you should find it). Also his advice of doing the exercises little and often seemed to make sense. I guess by the time I saw him I had improved a bit so it's difficult to judge how long it took to help. It was in late April/May that I started to get long dizzy-free spells, and suddenly the exercises no longer made me feel horrendous - very slightly dizzy, but recovery would be very quick.
In fact, when I have had minor setbacks recently I have just done the exercises again for a couple of days, which seems to kick by brain back into action.
I am so sorry that you have had some really nasty dizziness lately - but I would definitely persist in doing some basic exercises - it will pay off in the long run, I am 100% sure about that.
And yes I was very frustrated at doing the exercises and feeling like I was getting nowhere. I found the progress very slow at the start, but then all of a sudden the progress really began to speed up - this was about 3 months in - but I think it really paid off for me.

I don't know if you watched the series on the human senses - the balance episode was very interesting - it showed that our brains are incredible at learning to compensate, and that with repeated practice, our balance system can only get stronger. I think the key though is small steps. Too much and the brain just says "no thankyou!" I can now happily stand on one leg with my eyes closed for ages - something I probably couldn't have done even before I got lab.

Hope this helps.

Ruth
xxx

Hbep
Sorry to jump in here, but I thought I'd let you know that my VRT therapist said that there were 'levels' of VRT. I never went back to her for the next level of VRT because she is in Adelaide - an expensive flight away - but I thought it was interesting. It seems that starting slow is the main message from these therapists.
Jen
PS. You guys have made me think that I should start my VRT again. No harm done.

Hi Ruth,

Been meaning to reply to this for ages but hadn't got around to doing a search on the tmjd board - the woman I spoke about no longer visits the board, needed to root out some old posts. Anyway, regarding the drugs for T - she took neurontin - it's difficult to say how much this would work for all T. She was given it for tmjd induced headaches and it helped greatly in reducing the T - the doc said it was probably because it relaxed all the muscles around that area. The other ones I've heard of are also the benzos - klonopin, xanax, valium. The valium was a real life saver for me when I had that hideous vibration in ears period - would pretty much get rid of it - I'm pretty sure that was muscular.

It seems, from reading on tinnitus, that quite a few people do initially take a v.v. low dose of a benzo for a few months in the initial stages. It seems this can either actually lower the T, or alternatively lower the anxiety which makes the T easier to deal, or often less anxiety = lower T. This then paves the way to habituation and coming off the drugs. Obviously benzos can be addictive, but in my opinion this doesn't mean they should be ruled out altogether. It depends on the severity of your suffering. If you aren't coping, then cautious use, v. low dose, not upping the dose, tapering off them carefully when the time comes, could make the difference btwn a lot of misery and a better quality of life. I guess it's about weighing it up, and also something you would need to discuss with your doctor. I'm not saying you need drugs to cope with T, or to habituate, just sometimes if you are really being driven nuts (this is often more prevalent when you're new to it) they can help. Personally when I experienced the vibration in my ears, intermittent and v. v. cautious use of valium, (2mg) was a life saver. My rule was I only took it if the need was great. This is something else you could think about, an occasional benzo when the T is louder. I found that the knowledge that the valium was there, lowered my anxiety about the possibility of an incident and therefore probably helped, even when I didn't take it, to get the vibration under control. Also intermittent, sparing, as needed use, circumvented the possibility of addiction.

Just some thoughts, Ruth, if you are still having a tough time with it, I hope you're not and that you're ok.

Also wanted to say thank you so much for your kind words about the VRT, can't tell you how heartening I found that - made me feel like there's light at the end of the tunnel. I am in a better phase and doing the gentler VRT - still frustrated that I know if I were to jump around, or over exert myself the dizzies will hit - know what you mean about walking around like a dalek. My heart goes out to you that you got over the dizzies and now have to deal with the T - I can only assure you again that it really will get better. I don't remember much about my habituation process - I was so young - but I do remember when I first got the T I was absolutely distraught, it seemed immensely loud. I'm no longer distraught and it seems a lot quieter, I don't think it is, I just think this happens over time.

Let me know how you're getting on.

best,

hbep.

[This message has been edited by hbep (edited 08-26-2003).]

Hi everyone,
Well - I had not felt dizzy for a month - and today it's made a comeback, although I'm guessing it's one of those blips and will hopefully soon pass. I think I'm coming down with something so that may explain it. But, I tell you what - I'd forgotten how horrible it makes you feel.
How are you, hbep, Jen, Emsybobs? Hope you are all seeing some improvements.
Still dealing with the tinnitus!

Hi there Ruth

Did the dizziness go away? I hope that it was just a blip!

Doing ok I suppose. I was disappointed on Thursday last week to feel my dizziness flare up. This was my 10th day of taking Ami. I increased the dose (I was prescribed 1 - 2 tabs, so increased it to 2) on Friday night and felt like a zombie for 2 days. Well the zombie feelings have worn off but the dizziness hasn't completely. I'm trying to stay positive because I have read that tricyclics can take a few weeks to really take effect.

Hope you're doing ok. The tinnitus thing sounds horrible!!

Cheers
Jen

Hi Jen,
I think the dizziness has come back because I have picked up some virus - anytime I get under the weather the disorientation seems to return. I really had forgotten how weird it makes you feel, which I guess is a good sign, in that I hadn't felt dizzy at all for 4 weeks! Hope the side-effects of the medication wear off soon for you - you seem to have periods of doing really well - I'm sure things will eventually get better.
Yep, the tinnitus is tough to deal with. Am really trying to stay positive - not easy! I'll have a couple of days where I'm coping better (like this weekend) and then I get ill and the dizziness comes back and it is all too much. I wonder when I'll be able to get my life back on track fully - I'm sure we will all get there eventually - it has been a tough year. http://www.healthboards.com/ubb/yawn.gif

Ruth
xxx

Hi Ruth and Jen,

Jen, I think often it take a bit of messing around with dosages before you get it right with these drugs. I know Hannah who u also spoke to went through a period of different adjustments before they got it completely right.

Ruth,

I'm up and down, although undeniably a lot better than I was a year ago - wish I was just better.` Like you, I wonder when (and in bleak moments if) my life will ever get back to normal. I had a couple of dreadful days recently - I'd caught a bug off a friend - back (almost) to usual level now, so I'm sure you're right and the bug is making you feel dizzy again. The thought of a whole month with no dizzies - bliss. I've still only been properly doing VRT for about 10 days - I hang on to your words re 3 months - and am trying to remain hopeful I can beat this dizzy rubbish totally.