Hi guys

For those of you who know my story you know that I've been on a marvelous road to recovery over the past couple of months. In the past 3 weeks however, I have suddenly developed tinnitus in my left ear (the ear that I've always suspected was the problem) and then suddenly in the past few days the sharp, stabbing pains that I experienced in the first six months of my dizziness have reappeared. They're not excruciating and only occur a few times a day, but I'm so scared because I do not know what this means!! Why have these pains come back?? Is my ear to blame after all? Maybe I'm on the wrong track with my migraine/headache/tmj/neck treatment. Sigh. I just needed to vent. On top of all this I'm going through a bad dizzy phase and only feel 80% AGAIN. Oh for this to end...

Thanks for listening.

Jen

Hi there Jen,

I don't think either the tinnitus or the sharp stabbing pains would rule out either a headache or a neck/tmjd induced dizziness prognosis. In fact I remember reading a long thread on the tmj board where a number of people said that either ear ache or pains in their ears were what first indicated their tmj problem. I know you're a chronic clencher - that would do it. Tinnitus can also, and is often, caused by both tmj and/or migraine/headache problems. I get constant rubbish going on in my ears - sudden increases in tinnitus that then subsides, weird sensations of diminished hearing, a feeling of tightness inside the ear - sudden weird ear pain, I can't claim to know what the hell is really going on with me, lol, I wish I could, but generally this ear sensation rubbish coincides with an increase in neck stiffness, tight feelings around my face and jaw etc... I think it's probably all muscular and tmjd related- an unfortunate relationship btwn aggravated nerves and muscles in the jaw and the ear. At one time I read everything ever written about the ear on the tmjd board and recognised pretty much every single symptom people were talking about - tinnitus and ear pain being big ones. I know I also have a lab diagnosis but I feel more and more that, that stirred up an underlying tmjd problem - lab doesn't cause the sensation of tight uncomfortableness I get in and around my jaw joint etc...

Also, more comfortingly, if you're worried that your diagnosis is wrong - the oral surgeon I saw at the dental hospital said that a vast amount of her patients have ear symptoms. On the up side, and I know this sounds hollow as like you I despair of how to get rid of this tmjd problem - if you can get rid of it you can eliminate the tinnitus and the ear pain. Also, with regard to it being your left ear, tmjd does often favour one side. Some people have been singing the praises of a book on tmj on the tmjd board - I'm going to by it - it's called Taking Control of tmj by Robert O. Uppgaard.

Like you, I constantly worry about and question my diagnosis, I see the neuro oto tomorrow and am going to be questioning them closely about my test results/tmjd a possible migraine connection etc, but in your case, the fact that you improved on the ami does indicate that at this point it's probably not inner ear. Inner ear damage simply won't be helped by amitriptyline, whereas a bad neck, or migraine or tmjd will. By the way I totally second your when will this rubbish ever end sentiment - although I am grateful that I'm a lot better, I know what I want from Santa for X Mas - my normal life back - 100%.

Hope you're doing ok, Jen, I'm sure you've already seen this but noticed that Marlene on the tmjd board had replied to your dentists in Australia thread. Who knows, maybe one of them will provide the answer to your clenching problem.

best,

hbep.

Hi Hbep

Thanks for your words of comfort. I do feel better after reading your post. I think I will also look for that book on tmjd. I've been resisting the idea that all my troubles are as a result of tmjd (god knows why, haven't analysed it enough yet) but I'm slowly coming to terms with it. The biggest question for me though is that I've clenched for so many years and suffered with headaches and migraines since I was a child - why develop new symptoms now at the age of 30? It's enough to drive a girl round the bend. I know that I have GOT TO stop clenching at night. I'm at my wits end. In the new year I'm going to try hypnotherapy. I can't think of anything else to do. I wear my NTI every single night because it feels better with it than without it, but I still bite down on it so hard that I can feel the tension in my face in the morning.

I'm off to S. Africa for 5 weeks on Thursday. I'm hoping a long, much needed break with my family speeds up my recovery which has taken rather a horrible slide backwards.

Hbep, hope your appt. with the neuroto went well. Let us know what he said.

Yes, Santa, my old life for Christmas would be the best gift I could ever receive.

Jen

Hi Jen,
So sorry to read things have gone backwards for you again. :( Hbep has great words of advice and she clearly knows her stuff! Hopefully your tinnitus will be a minor annoyance. As you know I couldn't handle it at all in the beginning, but I am definitely making progress with it.
Thinking of you,
Ruth
xxx
I hope you enjoy your break and that you feel much better while you are away.

Hi Jen, Ruth,

Just to say, Jen, hope you have a fab time in South Africa - how wonderful - 5 weeks. Ruth, glad to hear you are coping with the T better - so hope this continues to get ever better for you.

Saw the neuro oto - absolutely grilled the poor bloke about whether there was any chance this might be migraine - from everything he said it seems this is highly unlikely in my case. My test results only showed a minor difference btwn the ears but enough for them to make the lab diagnosis. Also, he says from everything I describe I sound like a classic case of vestibular nerve damage - so it's onwards and forwards with the VRT for me. Doing pretty well the last few days so here's hoping that continues. I guess I just needed to be totally clear that I have lab and tmjd and it wasn't all one condition instead of 2. I have always been totally puzzled as to why the 2 conditions came on so close together, but now he's convinced me it's not migraine, I kind of see how it happened. The lab disturbed my ear, I had an underlying tmjd condition, which had flared up once before , then gone in to remission, but gone undiagnosed, and the lab is the straw that broke the camel's back and brought it back. I pondered your question about why now at 30, Jen. Guess, like me, something just tips the balance and a condition that's under control suddenly gets worse. The good news is, Jen, that you are now tackling it in new ways - I'm sure the ami is helping, are you still doing the physio? I am going to be stricter with myself about doing my stretching exercises, everything I've read says it really helps. Also, was interested to find out from the neuro oto that ami is the favoured treatment for neck/tmjd/headaches, but not the first treatment they try for migraine. Obviously why your neuro oto also gave you a migraine drug as well. It really might be worth taking it if you continue to have probs. I know you're worried about weight gain, but not all drugs cause the side effects stated - you might a) gain no weight and b) get completely better. I don't know what you've been given but he mentioned beta blockers and also another drug called sanomigraine - I think it was the latter that ultimately cured Hannah.

Anyway, Jen, let's hope a long break is just what you need and you come back vastly improved. Keep in touch, Ruth, glad to hear you're doing well,

best,

hbep.

Hi Hbep, Ruth

Ruth, thanks for the words of encouragement. The tinnitus subsided last night and then was loud again when I woke up. It is generally louder when I wake up in the morning which is a sure fire sign for me that it's my clenching aggravating the problem. I try and adhere to the advice that you and others have given to push it to the back of my mind and not focus on it when I'm trying to sleep. So far so good....unless it's the Ami knocking me out and I'd sleep anyway!!

Hbep, you are a WEALTH of information. I'm so glad to hear that you had a good appt. at the neuroto. He sounds like he knows his stuff. Being sure of your diagnosis I know must be a huge thing for you. Here's to the VRT improving your symptoms asap!!

Thanks so much too for clarifying that about the ami and the migraine medication. It is Sandomigraine that I have been prescribed but I have not yet fetched the prescription. My neuroto told me to double the ami dose for a couple of months to see what that does. I have gone to 1 and a half times, but when I tried to double the dose I felt like a zombie. I think I'll try the sandomigraine in Jan when I get back from holiday. The doc said that the medication increases your appetite which causes you to eat more which causes you to put on weight. It's not actualy the medication which directly causes the weight gain. I guess I could be conscious of this, and yes, it won't happen to everyone. I was one of those people who never put on weight from the pill so maybe that's a good sign. The fact that it was Sandomigraine that cured Hannah really does give me an incentive to try it!

Yes, I still go to physio every week but I'm bad at doing VRT - I have actually stopped doing the exercises which is probably dumb on my part.

I will probably only sign on sporadically over the next few weeks. Yes, I do hope that this holiday will fix it once and for all, but don't worry I don't have any unrealistic expecatations.

Merry Christmas!

Jen

Hi Jen,

Just to say - on the up side, ami can also cause an increased appetite - when I was on the nortiptyline - same class of drugs, I would wake up in the morning and think wow I could murder a three course meal, lol. If you're experiencing none of this on the ami, you may experience none of this on the sandomigraine. Also, as you say, you can also stock up your fridge with healthy stuff and just eat that. A barrel full of carrots never piled on the pounds. I guess he wants you to try increasing the ami first as it has had a good effect but not kicked the problem completely. It's entirely possible that if your prob is all your neck - I know it's impossible to say - maybe all you need is an increased dose. I'm guessing more important than doing VRT for you is stretching your neck consistently every day. I'm sure you know all this already. I was told to make sure the muscles weren't allowed to slip back in to old habits of seizing up and spasming. Also, boring, and I'm sure you're aware of this too, but if you sit at a computer at work make 100% sure you sit in the correct posture - no forward head stooping. I was given all this advice but got bored and then forgot, lol, but re read the stuff my physio gave me and am back on the case with myself. I read an excellent article on the neck - you may have seen the thread where people talked about The Sternocleidomastoid Syndrome - if you put those words in to search it brings it up. It really clarified for me how the neck can cause dizziness. Another thing I'm thinking of now the dizzies seem to be getting more under control is pilates - apparently if you have neck probs, pilates is great for strengthening stomach and back and providing the neck with more support.

Anyway, have a fantastic hols, pop in and say hello on here if you can,

best,

hbep.

Have a great trip Jen! Merry Christmas to both of you. :)
Am having another bad couple of days AGAIN! I hate the way it sometimes happens for no reason and I really don't know how I am ever going to be able to get a job next year and be able to cope with it. :(

Hi there Ruth,

Sorry you are feeling bad again _ I'm having a good stretch but always fear a sudden downward spiral - the problem is never knowing when it'll hit. Something that occurred to me is that maybe you need to do some different VRT exercises. I know the friend of mine seen at the same hospital as me, like you, regained most of his balance, but was still having a few problems - he was sent back to the VRT department and they worked out a new regime for him. Maybe there are certain movements that re trigger your dizzies that aren't covered by your current VRT exercises.

Also, does your vision get bad with this these days, or is it mainly vertigo? The neuro oto also told me there's something called visual vertigo - namely if your symptoms are very visually provoked, shops, aisles etc.. it's because you are still relying too heavily on your eyes for vision and your brain still has to unlearn this bad habit. I was told that once I'd finished the VRT list, if I was still having problems I'd be given a tape of specific eye exercises. I also remember Jen's VRT therapist referring to a more advanced stage of VRT after the one she was doing.

I guess what I'm saying is that if you're still having problems there's no reason to assume there's nothing more that can be done which could kick the thing completely. I know you were one of the few people to get a proper diagnosis off an ENT and to be referred for VRT, no mean feat, but even if your ENT is ok, there's no reason why you couldn't be referred to the neurotology department I go to in London if you continue to have probs. or alternatively, if you were happy with the place you were given your VRT exercises, you could go back there -they could try to isolate any areas that are still making you dizzy. I know it's tedious to get re referred to VRT so maybe, in the first instance, you could just check out the Cawthorne Cooksey exercises again, try them all out, see which ones make you dizzy now and do them. The fact that you compensate so well for periods of time makes me think you really can get rid of this thing, the signs are so hopeful.

I might be barking up the wrong tree but it could be worth a shot. I feel for you as I share all your anxieties about work etc..

Hope you're feeling better by the time you read this, Ruth. It's always so gutting to go backwards - as you know, I was so miserable after the flu.

best,

hbep.

Thankyou so much hbep. :) Today has been rough - I have no idea why. Feel like I am on a swing - even when sitting still. Had a good cry tonight as it has really gotten to me. Your post made me feel so much more positive, though. It is a blip (one of many - lol)!!! I am going to try and stick to the exercises again, but I think I need to do some different ones too.
The VRT guy I saw back in March was very nice, but the more I think about it, I'm not convinced he was that great. He gave the exact same exercises to my work colleague, who if you remember also had lab. I kind of think he probably gives everyone the same exercises!!!! I think the sponge was a great idea of his though and will get back on it tomorrow!!
Thanks again,
your post really cheered me up on a bad day.
Ruth
xxx

Hi Jen:
Just wanted to wish you a great trip. Read your post on the Tinnitus getting louder and just wanted to mention that on my prescription where it lists all the side effects and this is for the nortriptyline it does say it can cause tinnitus and since you are upping the dose this may be the cause. I know you take ami but they are close in relation. I have recently doubled my dose on nortriptyline to see if we can kick this monster out the door. I think he is mostly out except that his tail is stuck in the door and it's a long tail. I feel like I am stuck right now. I haven't been able to do the hiking like I was since we now have almost 2 feet of snow on the ground. My husband told me tonight that if they said I would get better by cutting off one of his fingers he would do that for me. I'm thankful I don't have the extreme symptoms alot of people on this board have but I am so ,so sick of this. I find that having 10% of the imbalance feelings is frustrating. I just don't get it, everybody on this board has such big hearts, why is this happening to all of us. Guess you can tell I'm having a feel sory for myself day.. I haven't heard from the neurologist yet but really can't deal with any more negativity until after the holidays. I have a long tough week at work starting right after Christmas.
As far as your ear pains, I still get stabbing pains periodically but it never turned into anything to serious.
I asked my Dr. about Amitriptyline and he says alot of Dr.s use the Ami, but he prefers using the Nortriptyline. He told me to give it 4 weeks to see if it reduces the migraines even more and if not we'll switch to ami. If I do that he said I don't need to wean myself off of one drug before I start the next one which was a plus. Who the heck knows what we have, I read on the internet that the ENG is only 80% accurate so I think anything is possible. Something started this crud, a virus, stress or whatever. What I will say is that somebody made the mistake of telling me "God forbid you may have to live with this for the rest of your life" and I turned around and said "No, I will not accept that", because I know it can take a long time before it totally disappears. I know that I am tremendously better because there are certain people who are starting to annoy me. Especially that head monster with his tail stuck in my door.
Anyway, I truly wish you a relaxing wonderful vacation.

all the best,
Kathy