VN, Labs, MDDS? It's ruining my life, very suicidal
Posted , 7 users are following.
Okay so about 11 days ago I posted a discussion here about how I think I might have a vestibular disorder. I've been to my GP again (a new one in a different town) who has told me that I have a "mild" stage of labyrinthitis even though I explained to him I've been suffering for about 6 weeks. That was last monday. He also told me that I've got "chronic" fluid in behind both of my ear drums and he seems to think it's been there for years, almost like a "glue" type substance. Now when I was younger I had a grommet put inside my ear to help drain the fluid in my left ear. That was when I was about 12. I'm 21 now, so it's been a while. He has also stated my ear drums are in very bad condition probably due to the fluid.
He's referred me to see an ENT which is on the 31st of this month, so I still have a while to go until I'll start seeing more answers other then what my GP has told me. My symtoms still are:
Slight sense of false motion still. I have good days where it almost feels like it's gone, then I'll have days where it's slightly back again.
My eyes are still very out of whack. It's almost like I HAVE to go out of my way to keep them focused or else they will go out of focus even just staring at something. They also seem to still have this "Warping" motion type thing happen when I stare at something, almost like the object or whatever I'm looking at starts to move around or go "wavy" or even move back and forth.
My anxiety is still very bad even though my symptoms from when they first started nearly 2 months ago are a lot better. I'm always fearful of it coming back severe again 24/7.. The mornings seem to be the hardest for me because when I wake up I tend to "dwell" about the day and how it'll be hard to do things. It makes me anxiety worse and if I let myself freak out I tend to start crying and panicing that this will never go away.
It's almost like this illness whatever it is that started 2 months almost now has changed every aspect of me. I'm super depressed these days and I struggle with anxiety which was never an issue for me before all of this. I feel emotionless most of the time, I feel like I can never relax and be "happy" for one second. It's hard for me because I'm 21, I have a girlfriend who I've been with for nearly 6 years, and we have a 4 year old son. But I stay home every day and look after him whilst she works every day and all day. I only see her late at night when she comes home.
It's been hard on me because I get anxious even more when I'm alone. I hate dealing with this illness whilst sitting at home every day doing nothing. I feel isolated and alone. I've tried visiting/contacting family but they don't understand. They all think that this appointment with the ENT will "fix everything" and I'll be normal again. They think it's mostly to do with anxiety and I'm "overthinking" everything.
I've even lost the feeling of doing hobbies and things I used to enjoy. I don't want them anymore. Even food I was once used to enjoy I don't want to eat them or anything. I did struggle with loss of appetite when during my first month of whatever is wrong with me. Mainly due to the nausated feeling I had 24/7 made me not want to eat. I've since managed to get some what of an appetite back but I don't enjoy most foods I eat anymore.
I'll be honest and say I'm very suicidal ever since having this. Mainly because of the fact I feel like I'll never be 100% ever again. And that the motion feeling will never stop, my eyesight will never come back fully and that I'll never be able to function properly in life ever again. I've tried some valium which my step mum gave me which helped a little bit. I only took 2 5mg tablets which seem to be make be calm down and stop the motion feeling as well as dwelling or worrying about it all.
My biggest problem is I can't help thinking about all these diseases and vestibular disorders and knowing how people struggle years or even their whole life with them. I hate knowing theres a chance I might never get diagnosed properly and be able to get some treatment to make me 100% again. It's all ruining my relationship and my family as well as my son. And I'm afraid I'll end up killing myself to end this struggle not knowing if there was ever a chance of me going back to the old me.
Literally 2 months ago I woke up with all of this, yeah I was much worse the first few weeks and it's gotten better since, but I'm scared it'll never just "fully" go away. Ever since then my life has been turned completely upside down.
My family think I'm just having a mental breakdown and threatening to put me into a psych ward, when really all I want is for people to understand that it's not all in my head.
So again, I'm not entirely sure exactly what it is that I have. Could it be Menieres Disease, or MAV since a lot of people say only people with those conditions end up developing anxiety disorders and what not. I know I'm technically past the stage of where normal labyrinthitis would end on it's own, but is there still a chance that it's just a simple case of it and that within the next month it'll be completely gone? I know that if the motion stopped completely and my eyes were fine again the anxiety would stop since my anxiety seems to only be affected since I "physically" can't stop this illness myself.
0 likes, 29 replies
lynniebimbom12 jlr
Posted
Hi jlr. I, like you thought that I would never cope with this whatever it is ( I've never been given a definitive diagnosis although it has been suggested it is labrynthitis or MAV or Menieres or a combination of BPPV plus one or more of the aforementioned. In other words, despite all of the tests they're not really sure. I think you may need to prepare yourself for the fact that they may never be able to give you the diagnosis you are looking for although hopefully they will. As I told you, this started up for me again in March 2015. I have periods of respite where it seems to virtually disappear only to reappear months later. I am currently experiencing a "flare up" and have tinnitus ( ringing in the ears), a feeling of soreness deep inside my ears , blocked ears, neck and back pain, shifting vision and if I move suddenly or tilt my head up or down or sideways too quickly I will fall over. When this first started to happen a year or so ago and I was in A & E for the umpteenth time I was totally panicked . The tests performed revealed a 30 percent hearing loss which proves it's not all in the mind! The only thing which helped me at all was the vestibular rehabilitation therapy which I received at the hospital. In terms of this illness it is likely to be very early days for you. I stopped taking any prescribed medicines as I was told that in the long term they prevent your brain from learning to compensate for any damage. I last saw a neurologist about 3 or 4 months ago and it was only after his reassurance that this is an ear problem rather than a brain problem that I stopped panicking when I get a relapse. My current relapse started two weeks ago after I had driven quite a distance, although driving itself has never been a problem. I also have a meningioma ( benign brain tumour in the lining of the brain) so this is why I had been so worried . I agree with Gillian that VEDA is a great website but my suggestion is that you take things slowly , wait for your appointment and see what they come up with, before flying into a panic about never feeling ok again. You may not feel perfect but you will definitely be able to function again and you may well be panicking for nothing. Let us know what happens when you've seen the Dr.