Unknown Vestibular Disorder

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I've been a submarine sailor for 16 years knowing full well that I have a vestibular disorder. My normal symtoms include vertigo, tinnitus, full feeling in my ears, ear pain, extreme sensetivity to barometric pressure changes When I have episodes or attacks it culminates in depression, anxiety and panic attacks. Recently while at sea we had the ship pressurized to 33.5 in/hg and after about a week and a half of those conditions I was in full panic attack on a daily basis for the better part of 3 weeks. The depression, anxiety, and panic lead to suicidal ideations and I am now no longer on the ship. After we equalized ships pressure with the outside atmosphere I started to feel better immediately and I'm now trying to prove to Navy medicine that it's not psychological that is been a vestibular disorder the whole time and that I'm not crazy. I'm certianly being met with large amounts of resistance by the regular doctors and the ENT who are looking at me like I have three heads when I try to explain what happened to them. I don't know what I have but I know I'm not crazy or suicidal unless I'm in the middle of a vestibular episode. Anyone that can point me in the right direction it would be greatly appreciated. My career and my sanity my be at stake. 

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  • Posted

    Wow, that's insane that you are not getting the support you need. I can perhaps understand why the regular doctors may be out in left field with this but to have the ENT dr not familiar as to how all this can be tied in? Could you be referred to an oto-neurologist? They approach dizziness and balance disorders from the brain outward instead of from the ear in toward the brain (as in neurotologists). Surely there are others who have experienced that and hopefully someone on this forum has heard of this or know of someone who has experienced it. I will do some research myself on this. Sorry to read about that and I hope it gets resolved soon.
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  • Posted

    I sympathize with your symptoms, the anxiety and stress caught my attention. I too suffer like symptoms but on ground but am thinking your symptoms could be related and brought on by the anxiety and stress. Have you been diagnosed with a vestibular disorder? My neurologist cannot find any conclusive evidence that I have inner/middle ear problems yet I have what I feel is vertigo/balance issues along with headaches and tinnitus coupled with ear pressure.

    My best regards,

    Linda

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    • Posted

      Absolutely Linda, I agree with you. Most of us with this vestibular issues suffer from anxiety, stress, panic attacks ... and it's no mystery why.It goes hand in hand. I am sure there are more out there with suicidal thoughts due to how debillitating this is just some are ashamed to admit it.
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    • Posted

      I've only had thoughts of doom when I think when will this end. I could NEVER end my own life.

      I'm going to a chiropractor next for neck work. My p.t. Thinks I have issues. Tonight I'm actually feeling positive that I don't have a vestibular problem.

      Good luck to you all.

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  • Posted

    goodness imcan't think a being anywhere worse than punter or on the sea with this condition. Makes me feel,sick just thinking about it.  I agree with Marie, you need to see either a Otologist or Neuro,Otologist.,mod some research on line about them and see what chimes with you.  aSlo check out the Vestibular Disorders Association on line. They also have. Facebook page where you can ask questions etc. bUt they have some very interesting blurb on all the different kinds of vestibular problems in comprehensive and easy to,read and understand language.  nO you are not crazy, otherwise everyne in here would be too, ha ha!  iT,s only because you don,t have enough info that you feel that way. Once you educate yourself,in this condition you will realise there are loads of people with the same problem. 
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  • Posted

    Hi Brien ,just on pad ,no it's not you ,it's this condition ,Im sat here now with anxiety ,got it every day ,I have tinnitus as well ,so I think the 2 together has to raise our anxiety up .I have Mdds Rocking/ Swaying ,going into 5th yr now ,it makes your whole body virtually shake on bad days .

        I'm on an Aussie site ,plus 2 UK ones ,these are the ones who get it like those on here .so your not alone ,they give you tips what they know ,what helped them to cope med wise ,what treatments to go and ask for ,go on You tube ,look at balance and anxiety ,try some.

       What's been said here now ,write it down take to Dr ,

     You in UK Navy ? 

       Scary time being on a sub having this ,dreadful ,my anxiety I just need to move around ,in the hope it burns itself out ,adrenalin .Its worst time in my entire life ,guess most will be thinking exact same .

      Stay on this site ,don't give into those bad thoughts ,I can see how they drive you .the future looks bleak ,this condition would make a saint feel same way .

      Stay talking hey ,

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  • Posted

    Hi Brien,

    I got recently diagnosed with Vestibular Neuritis. Though, i may not be of great help to you but i can surely tell you that Vestibular issue is NOT a joke! Airpressure sure do create trouble and did for me when storm hit NYC. However, i am supposed to improve with this issues showing up here and there whether it is air pressure related, allergy, cold, congestion or even acidity etc. Every little details can bother our vestibular system for sure. One would think its a ghost they are dealing with and most ppl will not understand unless they go through it. Though, it may not be deadly like major cancers and etc. it can sure make one feel like its the end of the tunnel. I have had no trouble with anxiety, panic, stress etc. every in my life. Small stuff yes but after i got this virus i was attacked by everything including insomnia! It can truly mess with you. I am not sure which doctor you are seeing but you must switch and only go to vestibular specialists and avoid ENT and go to Otoralyngist and Neuro who speciliazies in Vestibular issues. The point is that you need your loved ones who should believe in you and help you guide thru this. Other people will never understand you and if anything will laugh at you. Well F them! Every little nerve in human body can play huge role. LIke i am sure plenty of people cannot scuba dive for same reason i believe. I hope this passes for you and hoping i myself get better soon smile

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  • Posted

    Hi Brien - Ive never heard of anything so ludicrous. Ive got silent migraine or MAV (migraine associated vertigo) and am dizzy 24/7.  In addition to that, I have pins and needles on top of my hair, if I touch my face or hair or head it feels really weird and buzzy.  The back of my head is very painful as well as my cheek, behind my left eye, my temple.  My neck creaks and cracks and gets stiff.  My jaw aches and teeth. I get very very hot. My lips go numb and so do the bottom of my feet.  My ears feel full from time to time and pound and I get earache.  The front of my head aches and so  does the back of my head. Then on occasions I get the full blown migraine with the splitting head and feeling really sick.  My sinuses get really bad and my eyes are itchy and sore.  My eyes did used to jump about all the time but I had botox and that seemed to stop it.  I also used to get panic attacks about what was wrong but being on these sites have shown me it is silent migraine so I now beleive my neurologist.  Ive had endless medications none of which have worked for me,  I wish I could find something that did so I could go back to my latin and ballroom dancing and ski ing but I cant ever see that.  I would like to get rid of the 2stone Ive put on my not dancing.  And clearly all the posts on this site are the same proving this illness does exist.  Any neurologist will tell you the same.  Is it the UK navy ?
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  • Posted

    Iam suffering from anxiety and depression from this illness. It can take over one's life as it controls you and you cant do anything about it. Because most people do not understand this problem they dont believe how hard it can be on you.
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  • Posted

    So becuase the message that went off the boat stressed that it was sucidal ideations they are more interested in the psychological part of this disease rather than the physiological aspect. The current ENT on base is a gigantic tool, so much so that when he refered me out to an audiologist for vestibular testing last week the referral that came to my house had only hearing test on it not vestibular testing. When I went to the clinic on friday to find out why I talked to his nurse and she told me that he doesn't listen to her or any of his patients and not only did she fix the referral for the vestibular testing but she started my second opinion referral on the spot. So now I'm waiting for two referrals to come in so that I can go get tests done. I still don't know if anyone read or saw anything on my MRI and I've been stuck with no job or purpose for the last three weeks. As a very senior enlisted person in the US Navy sitting and doing nothing is probably the most stressfull thing you could ask me to do. The worst part of this whole thing is losing my sh*t out at sea and having to admit defeat and leave my Sailors who I am devoted to and my brother Cheifs to carry my water for me. I am humiliated that this disease has done this to me and on top of it all my very successful career may be over. I just want to know for sure this time that it's vestibular. I haven't had anxiety, panic, or sucidal thoughts in weeks and I'm feeling better except for the normal vertigo, tinnitus and ear pain and fullness I always have, but I don't really have the confidence that going back to my old job on the boat is the right answer, not without anything in place to mitigate another episode. So I'm not receiving support from Navy medical, I have no purpose at work, and I have no idea what the future holds for my career. That pretty much sums it all up. I'm not hopeful that this will end well with the Navy thank god I'm working on a back up plan and have a super supportive wife and kids at my side. We'll get through it, it's just frustrating to not have answers.
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    • Posted

      Hello Brien,

      I am glad to read that you have a super supportive family system, that goes a long way in helping you deal with this crap. That is great you are working on a back up plan. Take each day as it comes and don't look too far ahead. Don't let this disease weaken your spirit. Thank you for your services and keep us posted.

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    • Posted

      Holy, i feel so bad for you. I could not imagine having this disorder and having to be on some ship/boat. All i know is i feel at times iam on a boat. .not a good feeling if you feel sick. I feel that way alot of the time. Been dealing with it for 8 years. It took my hearing, my energy my spirit.. iam a singer. .iam a Mom of 4 boys..3 of my boys are musical. One that has played with some big acts from canada he is 28..he met Gordy Johnson from Big Suger. He then became one of his vocalist girls Meredith shaws guitarist. Played with Andee Leclerc..randy Bachman. ..so many.

      Iam a singer..i had to step back from what i love the most is singing..this illness finally kicked me on the butt. I went through 8 years of no hearing in my left ear. being a part of a band was difficult...but i did it. Now that it is really bad.. i had to step away..iam crushed..all that work..group took on one of my best friends that sings lol she hasn't sang for years yet she gets my spot i earned..sorry going off track..but all i have to say is this disease sucks soo bad

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  • Posted

    Hi Brien - so sorry to hear your story.  Because you live your life via the navy it must be impossible to hide.  Something that the rest of us who work are all trying to do to keep our jobs.  I know how the navy take over I was based at HMS Collingwood many years ago.  Weve all found that ENT are totally useless.  None of them have a clue.  Weve all had a long tedious journey to get to neurologists.  Ive had MRI blood tests, many ENT, neuro surgeon until i finally got to neurologist.  It took almost a year.  There is a massive amount of anxiety involved and panic attacks because you just cannot find whats wrong.  I thought I had MS.  I finally got a diagnosis of silent migraine or MAV.  Im afraid to say Ive had it three years now.  Because there is nothing to see, I had to convince the doctors that there was something wrong and not just anxiety or my imagination.  Luckily this forum helps you feel you are not going insane and we all seem to have the exact same symptoms.  Air pressure affects all of us, so surely the sub pressure must have some problems.  I cant help knowing exactly whats wrong physically but please be assured you are not going insane.  Is there a neurologist you can see ?  Maybe going back to sea would not be a good plan if you now have vestibular problems.  Im sure you dont want to feel suicidal again and Ive been there.  Can you do something land based while you get to the bottom of this or find the right drugs to control it ?  Unfortunately it may take a long time and doesnt seem to be a quick fix.  I found once I got my head round it I felt a bit better but thats only happened recently.  Im glad your family are there for you and I hope you get your career back eventually but dont lose your sanity.  These vestibular issues def cause that.  Much love. 
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  • Posted

    So to clarify, the anxiety and panic is caused by the vestiblular issue maybe not in the way you think though. I'm not anxious or paniced about the vertigo or any of the other symtoms. I know it's my ears the whole time instead the problem with my ears triggers the "fight or flight" response in my body and when there is no inherent danger my mind "chooses" something to be scared of. It may be the most bizarre thing some of you have ever heard. I can even begin to rationalize the fact that it's my ears in my head but I can't arrest the fear and panic. It just won't go away. The only thing that I've found in the past that has helped has been Sudafed and Motrin when I've had attacks like this in the past Sudafed to dry everything out and Motrin to get the inflammation in my ears to go down. That's how I got it to go away last time and that's how I arrested this episode, that and getting out of the extra atmosperic pressure of the boat. The inner ear is directly connected to the cerebellum "primative brain" and when the ears get triggered they trigger the primative brain to run or fight. I get the dumps of adrenaline and everything except there is nothing to be afraid of so my mind picks so random fear out of the deepest darkest parts of my brain and says "here be freaked out about that for a while". It sucks. I guess that is the best way I can explain it. Now couple that with trying to prove to the navy I'm not crazy and trying to get an actual diagnosis. Oh and did I mention that I have no job right now either they have taken me from super high stress environment (which I'v thrived in for 16 years) to sitting on my butt doing nothing all day. I think that is more annoying than anything. In the end I'll figure this all out and make the doctors look like idiots. It also sucks trying to dumb down your explanations of things for a person with a PhD. Doctors--Dumbest smart kids I've ever met! Thanks for all the support on here I really appreciate it. I'll keep posting as I get through this thing.
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