Please read my story and help me out. It's a big read (suicidal, scared for my life and need help)

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Introduction:

So most people in this group will have most likely seen my few dicussions about my current journey through my inner ear problem. For those who don't know, I'm suffering with either Labyrinthitis or Vestibular Neuritis, it hasn't necessarily been fully diagnosed as to what it is I have. I've seen my GP who states I do have acute Labyrinthitis, as well as chronic fluid behind both my ear drums. I've been told I had an ear infection in my left ear during my first month of this illness, now into my second month my new doctor states I have an ear infection in my right ear. I have an appointment with an ENT specialist on the 31st of this month, so hopefully I can get the ball rolling on exactly what it is I have, and treatment for it, if possible. 

Doctors/Specialist's I have seen throughout the whole illness:

I have been to the hospital twice. The first time, was in my first week, they put me on IV fluid's which I guess was for dehydration, which I don't think I was really suffering from, but it was protocol apparently for them. This wasn't my local hospital.

They told me I had BPPV, and an ear infection in my left ear. 

Second time I went was during my first month of this, and I had an anxiety attack and went up there, this was my local hospital. They didn't do anything for me. The doctor checked my ears, said they were "clean" and gave me 3 Oxazepam 15mg tablets to help with my anxiety, that was it. 

I've seen 2 doctors. The first doctor I seen was in my first month, and he told me I "might" have labyrinthitis due to my symptoms I explained, he told me I had fluid in behind my ears and prescribed me Nasonex nasal spray to help my euchastian tubes to "open" up and free the fluid. He told me to wait a few weeks and come back to see if there was any improvement. 

Second doctor I've seen is my new GP in a different town, he has stated I have "chronic" fluid build up in my both my ears, possibly has been there for years, and it's more of a "gluey" substance rather than fluid, possibly due to how long it's been in there. Apparently my ear drums are very damaged, and I have scarring in my left ear due to when I had a grommet placed in there to help with fluid problems when I was a young kid. He has since referred me to a ENT, and told me I possibly need grommets in both my ears this time and that my dizziness and vertigo issues are due to "acute labyrinthitis". 

Mediation I've taken throughout this whole process: 

I was prescribed Stemetil at the hospital in my first week of this, I'm no longer taking any antivert medication. 

I was prescribed Low Blood pressure tablets at the hospital alongside my Stemetil since I was told I had very high blood pressure when they checked me. I haven't taken any of it since I stopped the Stemetil, since the side effects clashed, as well as opinion from a doctor stating I shouldn't take BP tablets if I don't necessarily have a BP problem. Though I have had high BP in the past, but it could be mainly due to my past few years of bad diet and weight gain. Still not entirely sure at this point. 

I have taken 3 Oxazepam 15mg tablets which my local hospital gave me to help with my severe anxiety, they mostly think I'm mentally insane rather than actually having something wrong with me. 

My step mother has given me a 5mg dose of valium 2 weeks ago, and 2.5mg dose because she cut the tablet in half. I now don't take any benzo's at all or anti-anxiety tablets. 

Medication I take now: 

During my 2nd month of this I've been prescribed Beconase nasal spray for my nose to try help the fluid that's built up in behind my ears, apparently it's chronic and been in there for years. I'm still taking this to date, I've experienced 2 blood noses already, but it seems to have helped with me sneezing and what not. Apparently I have issues with my nose or something my doctor stated when he looked up my nose. 

I'm also taking anti-biotics for my ear infection in my right ear, I've been taking them for 2 weeks now and I only have 1 tablet left before I'm completely finished. Apparently the infection in my left ear is gone. 

My current symptoms (2 months in):

- 24/7 Dizziness (more of a motion type feeling in my head rather than a dizzy/spinning feeling) it seems more milder now than in my first month, but it's still there, and it's still constant, just less... Or maybe I'm just learning to adapt to it, I'm not sure. 

- Visual distubances, during my first month I had problems with depth perception and slight nystagmus in my eyes. Those have since lessned and gotten better over time, but I struggle with my eyes easily going out of focus, I had problems with double vision during my first month, not so much anymore. I have issues constantly 24/7 with objects or walls or floors moving or "warping" if I stare longer than 10 seconds. It's very scary and it doesn't seem to be improving. 

- Spaced out feeling in my head, it seems to be the same every day. It hasn't seemed to lessen or stop yet, but I do have days where it seems a lot better than others. As well as "hours or times" when it seems to be better and than suddenly get worse. This accompained with the dizziness makes for constant 24/7 disorientation for me, and it's very debilitating, it's mostly where my anxiety stems from. 

- Anxiety, I have struggled with it ever since my first visit to the hopsital during my first week. Now into my 2nd month it seems a lot better, but it's always there, I just seem to manage it better now, but I have times where my dizziness and visual problems are worse, my anxiety turns into a full blown anxiety attack because I start freaking out. 

My symptoms which have since stopped: 

- Fatigue issues. I struggled bad with overall fatigue during my first month, I had weakness in my legs and it was difficult to go for walks or do anything because my body was "slow". This has since almost completely gone. I mean, if I lay in bed all day than I'll feel tired in my body and overall, but I can function normally without huge amounts of fatigue and weakness in my body now than I did in my first month. 

Things I'm struggling massively with right now and I'm hugely afraid of:

- Suicide. I'm seriously very suicidal at the moment and have been during this whole process. I've done a lot of damage mentally to myself but googling nearly every inner ear disorder on this planet. I'm a stay at home Dad whilst my girlfriend works all day every day. And I get scared that I'll end up slitting my wrists or something because I want all of this to end. 

My biggest fear is never being normal again, or recovering. I try to wake up every day and stay positive about all of this, but it's very hard. My girlfriend helps me take my mind off all of this when she's home with me, but when I'm alone I can't help but sit on the computer looking everything up and trying to find a cure myself, which I know I'll never get. 

The worse part about all of this is I can't just jump on heaps of medication to help me through this because EVERYTHING hinders recovery/compensation for this whole illness. It sucks. I wouldn't mind some anti-anxiety pills or SSRI's but I know I can't use anything and that hurts the most. I don't like feeling like I might kill myself over this whole thing. 

If you've read down to this far, then I applaud you for listening to my current journey and story through this all. I'm just trying to find light through this dark journey and hoping there's light at the end of it all. I'm hoping this appointment at the end of the month will start the ball rolling and hopefully once I start reaching my 3rd month I'll see some big improvements and recovery. It's my only hope at this point. 

Does my story sound more towards your average case of Labyrinthitis or VN, or is it more MAV or something more serious? I need some answers, and I need some assurances that I'll make it through this and be 100% normal again, or else I'm afraid I'll be left with suicide, and that scares me. I don't want to live like this anymore or for the rest of my life. I've lost everything since all of this, I've been bed ridden for 2 months straight and lost family because of this because they think I'm just having a mental breakdown. 

 

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  • Posted

    The constant in all this is the fluid build up in both middle ears, which you have not managed to fix.  The dizziness you feel could be due to this, as pressure changes in the middle ear can transmit to the inner ear and cause dizzy spells.

    Therefore, it is very likely that once the middle ear fluid issue is resolved that all your problems will go away.  The ENT appointment you have on the 31st should settle this.  Perhaps microsurgery should be considered to clean the middle ears on both sides if medications do not help.  Discuss this with ENT.  It is about time the middle ears are finally cleaned.

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Surgery.

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    • Posted

      Thanks for your reply. I've read up that fluid build up can cause dizziness, but I've had this fluid in my ears for years, ever since I had issues with fluid in my ear back like 8-9 years ago. I had a grommet inserted in my left ear because of problems with draining fluid. 

      I've always had problems with flying in planes due to the equalization in pressure in my ears ever since the surgery done years back with the grommet. I also have the same problem with going up hills or elevation in general like driving in a car up a mountain. 

      But I've never suffered from dizziness or vertigo. I literally woke up 2 months ago with all of this and it hasn't stopped. I'm hoping it has something to do with the fluid build up and that once I get grommets put back in, or surgery done it'll stop the dizziness but who knows. 

      I don't have dizzy spells, it's 24/7 constant for the past 2 months. And I've already been told it's likely due to the fact I "might" have acute labyrinthitis, but I don't suffer from hearing loss apart from the hearing loss I've always had since I was a kid. So I was learning more towards Vestibular Neuritis. 

      Plus I doubt fluid in my ears can cause visual disturbance 24/7 as well. I see objects and walls move/warp in front of me. It's very scary.. 

      I will discuss all of this with my ENT surgeon. I've read his biography and he has 14+ years with experience with vertigo issus so hopefully he can give me some proper treatment whether I need surgery or not. 

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  • Posted

    Its easy for doctors that havent experienced it it is a hell of a thing I lost my job through it ive had it for 3years and its a killer ive had every test mri scans youu name it ive had it and still no better suicide has crossed my mind a few times some tablets they.put me on caused gallstones had to have my gall bladder out but still really dizzy I read all your story I really feel for you but you arre not alone I can asure you more experimenting should be done with diziness my doctor said I gotta live with it not nice at all hope it eases soon for you x
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    • Posted

      Yeah see, stuff like this scares the hell out of me. I'm so sorry you've gone 3 years with all of this. Have they given a likely diagnosis to what it might be that you have? Are you constantly dizzy or have false sense of motion 24/7 like me? Do you see stuff move in your visual? 

      I won't stop until I figure out what's wrong with me. I won't live like this. It's hard to be humble about it, I can't imagine how hard it has been for you to accept that you have to live like it. It's unfair and you should really push to keep getting help. No one deserves to live life like this. 

      I love my life, my family and everything, but suicide crosses my mind because I can't accept living like this forever. I won't. If I can't find a cure, I'll live off medication to get me through if I have too, but I won't stop until something happens. 

      I've already seen 3 doctors, now I have an appointment with a ENT Surgeon, if nothing goes from that, I'll push for a Neurologist, if nothing there, than I'll push for a Neurotologist and keep going until I find something. 

      I woke up with this out of the blue, I won't spend the rest of my life like this. 

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    • Posted

      Yes visual disturbances its all very frightening cos you dont know whats going on ive had the eply manouvre and every test you can imagine ive seen nueros and ent the consultant im under now tells me I gotta live with it chin up you are not alone think of the positive things your family the love they have for you it really does keep me going and a dream that one morning I will wake up and its gone as quick as it come a girl can dream I suppose x
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    • Posted

      If I was you I'd find another ENT to see, or push to see a Neuro-Otologist, as you will most likely get a diagnosis from them. That'll be my plan if the ENT fails to help me. 

      Are you taking any medication for it? Like anything? If not, then you need to be... Even if they can't find what's wrong with you, you'll need meds to help function. I've always told myself that if I get diagnosed with something chronic and that's lifelong, I'll get on any med to make sure I can function normally some what. I don't care, I won't live like how I am right now forever, no way. 

      Family helps me get through you're right there. If I didn't have them I probably wouldn't be able to make it through each day. I always go to sleep every night praying when I wake up it'll be all gone but it never does ha. sad 

      Have you tried or been referred to VRT? You should... You have to try everything possible to get back to being you again. 

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    • Posted

      Ive paid to see neuros and the consultant im under now supposed to be the best in wales ive been on pitzofen toprimate propanolol and nortriplene the only 1 that takes the edge off is stematil and he wont give me them cos he said they are a cover up not a cure but dont think il ever get cured had it too long x
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    • Posted

      I've seen a heap of cases with people that most medication if it's not working to try up the dosages, and start seeing some relief from the symptoms. Especially with people suffering from MAV. 

      I've taken Stemetil which honestly to me seems like an utter joke. It literally did nothing for me besides make me unable to vomit. It didn't stop my dizziness or anything. I don't understand how Stemetil relieves you, but okay. 

      And yes he's right, Stemetil and any kind of antivert medication is only meant for temporary use as it hinders compensation recovery. It's really only supposed to be used for the first 2 weeks whilst you're not in the acute phase. 

      I'd see about maybe asking about scaling your dosages to see if find more relief from any of the medication you described, it seems to be a normal thing for vestibular disorder patients, especially with Meniere's and MAV. 

      And again, you need to keep pushing and finding out what's wrong. Don't take no for an answer Alison, I mean you're still clinically un-diagnosed, look for a diagnosis please.. 

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    • Posted

      The consultant said imbalance of the brain he cant do nothing to help me then he said a silent migraine and now hes saying its mennierres put me on serc which made me a lot worse. X
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    • Posted

      Meniere's Disease is periodically though? You should be fine, but have "attacks" of these symptoms.. You also should have issues with deafness during your attacks and fullness in the ear. 

      If you don't have those, I highly doubt you have Meniere's Disease. MAV might be more plausible for what you're experiencing, and as I said, you might have to jump on a heap of medications to find the right one, and try scaling dosages but you WILL find relief from one of them. 

      Imbalance of the brain? So you have nothing wrong with your inner ear at all? It's all in your brain? Can't you get brain surgery for that stuff? 

      Honestly, I'd change specialists tbh. Sounds like he's just grasping for anything since he really doesn't know what's wrong with you. 

      Don't suffer if you don't have to Alison. 

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  • Posted

    Hello,

    I'm sorry that you are having such problems.  I know that they can be very disorientating

    I am not a doctor, but I suffered from BPPV for several years and the symptoms were very like yours.  It is usually one sided, and you feel dizzy when you change posture ( eg turning over in bed, or looking upwards and sideways.).  You also feel spaced out and very tired.  The first time I had it, I was sent to a physiotherpist who did a procedure called the Epley manouvre on me.  it's painless and takes about ten minutes.  The effect is immediate. After this, I did not have it again for 4 years and this time the Epley procedure did not work for me. Apparently it works in around 80-90% of cases if it repeated once.  I was reffered to an ear nose and throat specialist who put me through a number of postural exercises to check the diagnosis, making me vlose my eyes and wlk with one foot in front of the other etc.  She then performed a more vigorous Epley that worked.  The relief is unimaginable.  I would urge you to get a referral to a specalist as nppoone seems to have given you a proper diagnosis.  They may get a scan of your ears too ( my doctor did).  If it is BPPV it can be fixed.

    However, you also sound very depressed by your circumstances and it might help to get treatment for that too.  Don't sufffer in silence.  Help is available.

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    • Posted

      Thanks for the reply. I think I did have BPPV at the start during my first week, which ended up passing, but when it came back on my 3rd week, I think it was due to the infection I had in my ear, so I'm definitely not a BPPV sufferer, but more of an inner ear disorder sufferer now. 

      I'm just hoping it's either VN or Labyrinthitis and nothing too serious.. I want another chance at life normal again, I don't think I could live like this forever, it's very debilitating and sad. 

      I had the epley procedure done on me during my first 2 weeks, it gave me slight dizziness but nothing too serious, nor did it clear anything for me. I seen a chiropractor who said I had stiffness in my neck and cracked it, which relieved neck pain, but didn't stop my dizziness. 

      I'm getting the ball rolling so far with seeing an ENT, so hopefully he gives me some relief or on the right track to recovery. If all fails there, I'll refer to see a Neuro-Otologist. But I have two issues at the moment, I need surgery done to relieve the chronic fluid behind both my ear drums, and I'm currently suffering with Labs or VN which makes it worse, though we don't know for sure if the dizziness is caused by the fluid. We'll know on the 31st. 

      And yes, I'm very depresssed. I have my good days and bad days with it but I'm honestly at wits end with this illness, not being able to sleep properly at night, always disorientated by this dizziness and visual problems 24/7 makes me very sad and depressed. Though unfortunately I won't be able to take any medication whilst I'm like this, which makes it even worser haha. sad 

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  • Posted

    I found some relief in my Vertigo reducing greatly my viewing of computer screens and smartphone ,I'm very sensitive to those light ,expecially at night ,I use night filter for the screen or sunglasses and no use 2 hours before sleeping .

    Also I found out that some type of alcohol mess up my ears , so I found 3 that don't affect me at all , after many trying.

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    • Posted

      I find I'm the complete opposite throughout my journey. I've found using my computer every day has helped me greatly since I've been housebound/bedbound throughout all of this. 

      I mean, yes I've had moments of massive amounts of eye strain from using it, which doesn't help but it's helped me in moments I was very down. 

      I don't struggle with looking at the screen or anything, but I found in my first month I did struggle with bright lights and stuff as well. Not so much now. 

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  • Posted

    Hi jlr,

    I can't say anything about your diagnosis, except that it's very clear from everything you're saying that you have a very real inner ear condition that needs proper investigation. I'm glad to hear that you have an ENT appointment in two weeks' time. I know ENT doctors get a bad press on these boards but that's only true when it comes to treating BPPV, which most of them don't seem to be very interested in. For someone like you, I think an ENT specialist is the right place to go.

    As a former nurse, I'd like to give you some advice (non-ENT related) though you're not obliged to accept it of course. My nursing experience was in the UK, and I realise from one of your earlier posts that you're in Australia. However, I suspect their health systems are similar and in any case, doctors seem to have the same approach all over the world.

    When you attend the appointment, try to stay as calm as possible and avoid talking about suicide, your life being wrecked etc. I understand your feelings and fully believe this is genuinely how you feel. However, doctors all over the world tend to be hard-pressed and working to a tight schedule, and unfortunately are sometimes on the lookout for an easy solution. When faced with a patient who's extremely agitated and anxious, I'm afraid there can be a temptation to attribute all the symptoms to anxiety without investigating too thoroughly. This attitude is very wrong in my opinion. Symptoms should never be put down purely to anxiety until every other possible cause has been explored. But unfortunately we live in an imperfect world.

    To summarise: stay factual and as calm as you can when you go to the appointment. It's clear from your posts that you are able to describe your symptoms in a perfectly lucid way. Try and use that ability to communicate your physical symptoms to the ENT doctor calmly and without emotional content.

    Best wishes for a good outcome at the appointment.

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    • Posted

      Thanks for your reply Lily. 

      You are correct, my Dad told me about this weeks ago. It's easy for me to try talk about suicidal thoughts, but I understand the moment I try symptomising myself whilst also talking about heavy depression, anxiety and suicide it's very easy for people to think I'm literally going insane, which isn't the case. 

      I've lost a few family members already by bringing up the suicide stuff, and it's hard for them I know, but I just want to be honest and open about this whole ordeal. I won't make that mistake twice with a specialist, I want proper help and treatment, not to be thrown in the looney bin. 

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