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I am new here and in need of help:)

Hi everyone I am new to this forums and I am desperate for some answers which dr dont provide at the moment.I am hoping to find some answers in here with your experience.Thank you all in advance.My problem started 4 years ago after a dive went wrong.As soon as I came out of the water things did not feel right I felt dizzy and off balance which I have never experience in my life before.After returning back home I started to realize something was not right so went to see my gp ,he ordered mri scan .The scan showed that there was a problem with my neck between c4 to c6 the bone slightly moved inwards and the disc came out and touching the spinal cord(minimal pressure).They booked me in for pt and send me home with some pain killers.Afew weeks passed and I started to experience my first tinnitus I was very anxious and didnt know what was going on at that point dizziness wasnt too bad.Couple of months passed and dizziness came back and stayed with me for at least 6 months.During that time I had vestibular theraphy and was put on lorezapam for anxiety since with tinnitus it got bad.The dizziness wore of after a while till 4 months ago.I flew to asia and when I was on this floating village the rocking sensation was back.Now what I have is
*rocking sensation not a vertigo type of spinning
*it gets worst when I am walking,moving my head left to right or up and down or watching fast moving objects.I have always been a keen cyclist so it does not get triggered as much when I cycle but the effects come after cycling with sensation of triedness head fog
*I seem to be ok with driving
*I dont suffer from any headaches just neck pain and occasional pain in temple area
*alcohol seems to make it worst the next day
*doing too much in my good days brings more bad days
*on my bad days which is most of the time at the moment,I feel drunk ,cant focus on anything and rocking sensation.
last 2 night I have something strange I get woken up from my sleep with a sensation that I am kind of falling and upon waking up I feel strange and feel palpitations ,overall feel whole my body going weird.

Any one able to suggest what is this I am having .I am scared and my anxiety getting worst due to these symptoms.I really appreciate anyone taking their time to answer as I am in a difficult situation right now.Thank you all:blush:

Welcome Selina! Sorry you’ve been having a bad time.

We can’t diagnose here but diving trauma? Ears are very vulnerable to diving incidents. I got MAV symptoms from ear trauma, albeit not from diving. My experience is very like yours though. Did they not even consider an impact to your ear? Have you discussed this with fellow divers who’ve had similar issues?

The problem is it’s very hard to diagnose subtle inner ear impacts. The good news is it seems to get better over a very long period and I’m sure you will do too.

In the meantime you are best to explore the MAV treatments available. Perhaps a migraine preventative will help control the neurological symptoms that come with it. Amitriptyline worked great for me. Not a silver bullet but a big help.

Hi ,thank you very much for your reply.I am aware I wont get diagnosis in here but peoples experiences are more important for me as sometimes drs lack in this area.I have seen by an ent and he told me that everything looks fine with my ears.Do your dizziness symptoms come and go ?So this could be basically MAV from ear trauma.I was put on amitriptyline just a week ago thanks to reading this forums and asking my gp for it.He started me on 10 mg.At the moment I dont feel different with dizziness but it definitely helps my neck pain.I appreciate your answers,thanks again

Perfect. So 10mg is quite low, you could definitely up it after you’ve been on it for one month. 20mg really made a difference to me. Some go higher.

I’m 100% now after 4 years from the incident, except for tinnitus. I have to watch I don’t drink caffeine. At the beginning my dizziness came and went but then persisted. The Amitriptyline got rid of the dizziness but I was left with an imbalance. That has since gone.

I know of a diver who wrote regularly on one of the other forums. He got the same symptoms and completely recovered after some years.

Oh thank you very much it gives me hope.I too thought I was healed for 2 years but it came back again so I suppose I have to keep positive .Did vrt exercises helped you?I am thinking of going back to those.when you say you were left with imbalance what you mean like finding it hard to balance while standing /walking or just light headed feeling.Thanks

No it didn’t. I gave up VRT. Just do lots of walks amongst nature. That helps get rid of any anxiety too.

You will be fine! (But you may need a lot of patience!!)

Mine went away for 6 months and came back worse. But I think that’s part of an odd healing pattern.

Like you my tinnitus wasn’t immediate. It came on 6 months after the injury. I’m positive it will eventually die down again.

I felt ‘lob-sided’ when moving. And the degree fluctuated. This is not the same sensation as dizziness which was well controlled with meds.

Lightheadedness is another symptom altogether. The medication definitely helps with that too but make sure you stay away from migraine triggers like caffeine.

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Hi, and once again welcome. Your symptoms seem obviously vestibular but you make no mention of a migraine history of any sort and you’ve had no confirmed medical diagnosis so far as such. Might be worth further medical intervention to try to get nearer the truth with regard to what you are actually experiencing. IMHO your symptoms could well be MAV however whatever it is you will find quite a wealth of experience on the practical management of dizziness/vertigo from fellow sufferers on here.

There are alot of different types and causes of dizziness. Years ago my brother had long spells of true vertigo as a result of heavy lifting in his employment which I’ve always imagined came from some sort of damage to his neck/spine. A long time later he was found to have disc damage. Whether the two were connected is not possible to know because, like you he was a cyclist, but, over the years he had a couple of bad accidents during the most severe of which he came off over the handlebars and, as he always jokes, ‘broke his speed by using his front teeth as brakes’.

As you’ve already discovered low dose Amitriptyline is an excellent painkiller for chronic long term pain. It’s used to treat it regularly ‘off label’ as they say much as it’s used for Migraine Associated Vertigo/Vestibular Migraine. Helen

Hi Helen,thank you very much for your reply.My gp is sending me for some tests for vestibular function but I am not sure if I want to have the caloric test done.I have never suffered from headaches ever in my life to a point having headaches maybe once in a while would make me feel himm thats very strange and it would not last longer that 10–30 min.I do however seem to have some sort of pressure feeling since the injury.I have also lifted heavy weights regulary for 10 years like (in gym) and I have disc problem in my neck.Drs idea is that I was having the neck problem for a long time and the hight jump/dive triggered it more along with vestibular issue(but not diagnosis).Because it all started straight after the jump as I remember the night of the incident I felt so much nausea and dizzy I could not eat or do anything.My symptoms bit confusing as I dont suffer from headaches but as turnitaround says I may have some sort of inner ear damage still I guess.Also neck could be also contributing as my neck is always tense due to my issues.Thanks

Ooh no, not damage. Just an upset. A bit like having a bruise but one that takes a long time to settle back down.

You can’t ignore the timing.

I had an otoneurologist telling me I’d had a genetic mutation. I moved to another doctor. It was obvious: my dizziness began 15 minutes after the incident. And I’d had one migraine in my life (and zero extreme dizziness/imbalance).

Do get the neck checked out though and the function of the eustachian tube … it might be possible to injure the latter if the neck was put out … They can usually test for good function of the ET.

Btw I would be careful NOT to lift heavy weights at the gym for a few years. Increasing cranial pressure may not help at all.

That’s a vicious circle of cause and effect. It works both ways quite literally. The brain may hold the neck muscles tight on purpose to help it help you maintain balance. Yet, VRT therapists will tell you if you perform exercises against tense muscles you are actually retraining your brain to respond to the exact opposite sensations that you are seeking to achieve. And a stiff neck together with ‘head pressure’ is almost diagnostic of some sort of vestibular problem.

Best bit of medical advice I never got given (a friend’s GP told her and she kept it to herself for years before sharing) was not to keep your head still. Helen

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ahhahha:grinning:turnitaround ok it is an upset I should say and genetic mutation made me laught.I havent been lifting heavy since the accident just light staff and stationary cycling and try to walk in nature.I am going to ent again next month as she will order some vestibular tests the gp told me.Is there a specific test then I should ask the ent dr for ET function.I like the bruise idea I will visualize this now in my brain to help with my healing:blush:Plus sorry for my all typos english is not my first language.Thanks for all the reply.

No problem.

One more piece of advice:

Once you’ve got through the main battery of tests and if there’s still doubt about the exact problem, don’t worry.

The best thing is to focus on the treatment and life adaptations (e.g. diet) and how to feel better. Then keep looking back a year and seeing if things have changed. Change is a good sign that things are progressing towards recovery in my experience.

I kept the faith that I would improve … and one day I magically started to feel so much better … after years of suffering … I’d done it!

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Thank you,I just did not understand this part sorry:(So is vrt exercise good or bad thing with a neck problem?I try not to keep my neck still even try to move left to right sometimes when I am walking.It makes me dizzy but I do it.Also another thing I feel when I bend to get something from floor it almost feels my ears get pluged a little bit as if there is a pressure.

Try to keep your head up as much as possible for a while. You need to bend down sometimes, but try to keep head up as much as possible: reach for things. This includes night-time. I put my head on 2 pillows, and my upper back on one (to avoid the neck bending too much). This really helped with sleep comfort and reduced symptoms in the morning. I do believe it may have helped with ultimate recovery too.

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Best to bend your knees I’ve found although when acute they do tend to go solid and stiff. The brain I suspect. Helen

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The patient is meant to be totally relaxed doing VRT. That’s what those ‘rolling shoulder’ exercises at the start are supposed to do. It’ll relax the muscles temporarily but the brain will often retighten them almost immediately. From my own experience it would be very difficult to perform some VRT exercises if they have confirmed ‘ neck damage’. The programme I built up to involved several hundred head turns left/right and right/left per day. Not easy I’d imagine with a neck issue. Alot of people with vestibular issues have stiff necks which is part of the condition and not ‘neck damage’. You need to be able to release any tension in the neck and maintain that relaxation whilst doing the exercises. I’m in no position to comment whether VRT would help somebody with neck damage. I would imagine it could be detrimental.

From my own personal experience I wouldn’t suggested anybody went down the VRT path until they had a firm diagnosis that suggested the need to do so. It is not deemed beneficial for some conditions. It was suggested to me because the ENT consultant couldn’t think of anything else to suggest because he didn’t know what was wrong with me. Not a good reason at all. Dr Hain doesn’t recommend it for migraine associated vertigo which it what it was eventually discovered I had. @turnitaround and I are in total accord on VRT. Natural life/walking outside is the way to go as far as I’m concerned. Helen

http://dizziness-and-balance.com/treatment/drug/vestibular%20compensation.html

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hi Selina,
Welcome and sorry. Did you hit your head or how did you damage your cervicals? Just curious. I hit my head diving like 15 years ago and had to get c6-c7 fused. I did not have any dizzy problems then, I got MAV 4 months post partum, but I am curious if you have followed with doctors to see how cervicals are doing?
Laura

Hi Selina, loads of good advice have preceded me. Let me ask you a question. Do you have ear pain ? sometimes it is pain inside the ear or around the ear. People describe this as knife piercing the ear or sometimes like a cobra strangling your ear. I have this signature migraine symptom and hence asking to see if this can help distinguish an inner ear problem versus a migraine problem

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FWIW I had this for significant phases of my condition. Usually intermittent though with no discernable pattern. I do wonder if this symptom is related to the ET and not the inner ear though. That might help explain why ‘migraineurs’ get it as well as those with ear trauma as apparently both conditions can make the surface of the middle ear swell?

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Hi getbetter,thanks for your reply.I dont suffer from pain inside my ear(except when this first started maybe had odd ear pain which went away quickly) but sometimes my outer ear gets very painful so I cant lie on that ear.Other than that my ears crack and pop (not all the time).Sometimes I can feel my ear drum kind off vibrating or poping like my dog barks or a child screams next to me.I have sensitivity to certain sounds ie hair dryer,fridge which increase my tinnitus.I have to use earplanes on planes as they dont equelize all the time esp if I have a cold.These are my ear releted symptoms I suppose.Thanks again