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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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