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. 

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  • Posted

    I'm not going to address your disease .

    I'm going to address your mental state only.

    I went through all hell many times in my life about different health conditions that seemed dire and dangerous at the time only to see them vanish several months later , I was extremely depressed and hopeless then but eventually different doctors explained me that extreme stress and anxiety can make your body and mind go awire and display convincing symptoms of terrible diseases that you don't really have ,and eventually will go away.....only to be replaced by new psycosomatic symptoms again induced by stress . This is exactly my personal experience .

    I'm over 50.

    If that helps ,you should think positive and remember that maybe 95% of the world population lives worse than you , in poor countries ,terrible health ,dirty water ,dictatorship ,famine ,. And in developed countries think about those with cancer ,paralyzed , in death row , in their 90s , that should make you feel a little better mentally , at least it works for me.

    Now I hope your doctors will cure you .

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    • Posted

      To be honest. And I don't mean to sound rude, but I'd much rather have some sort of cancer than this. In case you have no idea about vestibular disorders, they're one of the most hardest things to diagnose/treat. It's not classed as a disability but you ask anyone on here who lives with one or has been through an experience with some sort of disorder involving the inner ear, it's pure hell. It might as well be called a disability considering 80% of everyone who I've seen experience it have gone on to live with it for years and still do to this day. 

      Atleast with cancer you have a fighting chance in some cases, and diagnosing it is as easy as anything. Yes the treatment is harsh and is a journey of it's own for the patient suffering but at least you'll be diagnosed and in most cases treatment is there. 

      My mental state is because of this disorder whichever one I may have whether it's Vestibular Neuritis, Labyrinthitis, Meniere's Disease, MdDS, MAV or whatever else in that catergory.. I'm dizzy 24/7 every day and I'm housebound and with little sympathy from anyone. I'm alone in all of this and it drives me insane because I can't make it stop, and there's a chance medical professionals can't make it stop. 

      Most of my family think me being suicidal is disrespectful, and going too far even though it's my choice to feel that way considering I have to struggle everyday with this condition and try "crack" a smile and live life the best I can. It's not fair. 

      I thank you for your post, but I take no comfort in it. I hate knowing my life is on the brink of ending because of something I simply "woke" up to 2 months ago. Only to be told by numerous doctors to "stop stressing, it'll pass on it's own". 

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  • Posted

    Can you tell me first which country you live in?
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    • Posted

      Ok. I used to,live in Oz too,,Sydney. And have family there. I wld think they wld have a good medical,system,there? Younreally need,to see a Neuro Otologist. What is your main hospital in area you live in?
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    • Posted

      I live in rural NSW of Australia. I live in a very small town of 8,000 population. The closest "city" is nearly 4 hours away which is Melbourne, Sydney is much further away. There's a minor city which is where my ENT appointment is which is an hour and 45 minutes away. 

      My town is that bad I can't even see a GP here since we have only 2 clinics here and very few doctors and they will not take on any new patients. Very sad indeed. 

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  • Posted

    Hi there jlr. I just want you to know that I know EXACTLY how you are feeling. I first had this vestibular problem about 15 years ago. I tried to sit up in bed one morning and it felt as if I had been thrown back violently onto my pillow. Everything was swirling around me and I couldn't even stand up. After a week or so it was replaced by a feeling of imbalance and nausea. When I walked, it was like being on board a ship and it looked as if things were jumping up and down or moving side to side. I was diagnosed with labrynthitis and the good news is that eventually it disappeared completely and I was back to normal. 12 years later whilst on holiday in Spain, I turned over in bed and the room started spinning. I couldn't walk unaided and felt sick all the time. This was with me every day for months and like you,my anxiety levels went through the roof and like you, I was feeling suicidal and actually thought I was dying anyway. Nobody seemed to understand how drastic all of this seemed to me but I'm sure that if they felt the same they would probably have felt suicidal too. There is nothing abnormal about you. You have a horrible illness. It's not going to kill you. You WILL get better although it may take a lot of time ( or you may be lucky like I was the first time around). You are in the right place on this forum as the people here DO understand what you're going through and are here to support you. If I can answer any of your questions you only have to ask. Remember that you are not on your own. X

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    • Posted

      My biggest issue is I can't seem to stop doing my own research about all of this. And the problem is I have no idea truly what I have. As I said in my post, I have an appointment with an ENT specialist at the end of the month, but my worst fear is walking in there only to walk out with a diagnosis of Menieres Disease, or MdDS or something. It'll kill me knowing I've been struggling for so long with this and this appointment is my only shining light of hope for all of this and I don't want to be told it'll be forever, or that I'll never be the same ever again. 

      I hate being housebound every day and feeling alone in all of this because my girlfriend nor my family understand my situtation properly. They know there's something wrong, but they don't know if it's just in my head or if I'm going crazy or becoming a hypochondriac. Which I'm not. 

      My suicidal thoughts are only because I fear this will never stop, and that I won't be able to continue fighting it. I love my life, I love my son, and my girlfriend and my family but I hate living like this, I won't live like it. I woke up with this, I didn't ask for it nor do I need it in my life. I'm 21 and have... Sorry, had a bright future ahead of me. Now it's all gone because of this stupid illness. 

      As long as doctors and specialists can promise me at some point I'll be 100% again I'll fight it. I'll do any sort of therapy or medication or surgery just so I can be the old me again. 

      But if they tell me it's something that's incurable and that I have to live the best I can. I won't.. I simply can't. 

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    • Posted

      Theres nothing wrong with doing yr own rearch but too much of it can just confuse you and then you think you have all of the symtpoms.  Have younlooked at the Veda website, Vestibular 

      diasorders Association.  It is an American website, but v.v.good also has a FB page. I dint do FB anymore, but it,wld be the only one i'd,look at for this problem, apart this one!  Apart frommi fo on all of the different probs,they have details,of support groups, and i think, think there may be one in Australia!  Also they have lists,of consultants in all countries.  Think it's best if you stick to one decent site,like that for,your info. Or you will end up in a right mental state worrying.  There is another side to this which you will come out of, but the anxiety makes it worse!!

      if you get time without kids when they're napping or whatever, go on line and find some (You tube for eg) calming guided meditations to,listen to.  It's not weirdo stuff. I'll find one guy for you who does work with Google employees.

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    • Posted

      i just sent you a long reply and because imused the word Google,the moderator has blocked it!!  so Administation, can you put this reply back up,please!! GOogle fgs!!
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    • Posted

      n the meantime intil they out my LONG response back on go to the Vestibular disorders Association, or Veda , website. The only one i would recommend. 
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    • Posted

      I've been on VEDA. It's useful information but it doesn't really help me. I'm mean, realistically nothing helps me. That's just the way it is with stuff like this. I have an appointment at the end of the month, that's the only hope for me at this point. I need to stop looking up about all of this though since I'm becoming obsessive about it all and I can't seem to allow my mind to focus on other things and positive things. 

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    • Posted

      If ever I write a long post, I copy and paste it into a Word document just in case, then send it via PM if it gets taken down. Usually it turns out just to be something like a full stop without a space after it, which the system interprets as a web address.
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    • Posted

      No i worked that out by using both again,haha! Dont know what else it cld have been as i didnt use any names or titles, maybe they dont like,the words dr and hospital!!

      yeah so so! You? Not having good week really, not sure why. Could be lots of tree pollens around maybe??

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    • Posted

      i'm on ipad, so although i can do copy paste etc. I dont always think about it until i"ve written more than I intended! I,often will have commas or full,stops inbetween word without space, as u can tell becos the keyboard on ipad is just like a phone one but bigger really and space bar too,close to those two things! It's either those or an ,m'!!

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    • Posted

      I'm great! Had a more or less permanent headache for at least a month after the Epley manoeuvre cured the BPPV but am absolutely fine now.

      I worked out that the headache was due to moving my neck again after two months of holding it completely rigid. I have osteoarthritis in my neck (and all points south of course at my age!) and everything seized up in those two months. Once I started being able to bend my head backwards again, the pull on my scalp muscles created really bad headaches. I just took ibuprofen (as little as possible) and continued gentle neck exercises till it eventually subsided.

      Sorry to hear you're having a bad week. For some reason, the tree pollen season hasn't affected my asthma this year - well, not yet anyway. But maybe that's because I obeyed doctor's orders (for once!) and used a daily maintenance dose of my steroid inhaler throughout last winter.

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    • Posted

      Glad to hear you're feeling bit better.  I know re neck as i have what they call !wear and tear'!! Get bad stiff and sore neck,shoulders.  Started to have Bowen treatment once a month, which has  started to help somewhat and I have a nice lady who gives me tips to get relief etc.

      i've been tried on inhalers but they dont agree with me, i end up after only a few days with either oral thrush, or v.sore mouth!

      oh well onward and upward huh? X

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    • Posted

      Very important to rinse your mouth thoroughly and spit out the water where possible immediately after every use of a steroid inhaler to avoid oral thrush. I got this pearl of wisdom from a fellow sufferer over on the Sjogren's syndrome board and it's worked for me so far. As one of the common symptoms of Sjogren's is a very dry mouth with an increased tendency to thrush, this was a useful piece of advice.

      Glad the Bowen treatment is starting to bear fruit.

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    • Posted

      Yes i knew to do that, and did it, but made no diff for me and when I have any kind of candida going on i feel worse in myself all round, including dizzy stuff and as i dont have excessive dry mouth (Which felt worse with inhalers, not just steroid one, other ones too) and dont believe my breathless probs are lungs connected (Have seen a Respiratory consultant who says lungs fine)! It wasnt worth it. Only get breathless when tired or unwell,go,figure!!
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    • Posted

      Hey, how come you're allowed to mention the "c" word and I'm not?! Every time I try and bring it up over on the Sjogren's board (where I think it's very relevant as many researchers now believe it's at the root of all autoimmune disorders) our sainted mo der@tor takes my post down! He says this is because I'm "campaigning". I'll never get my head round all the rules on here...

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    • Posted

      C word? You mean Candida? What the heck!  candida is a very important problem for lots of people,,with all sorts of illness, Gutwise etc.  In fact CANDIDA! Can affect your body from your mouth to your ANUS!! Haha!  A d Campaigning? How is talking about candida campaigning, it's a,physical,problem fgs!!

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    • Posted

      Yup - that's the word! I think it started over on the Sjogren's board with people discussing the possibility that autoimmune diseases were caused by - I'm going to be careful how I write this - le@ky intestine. In this expression, the second word is usually replaced by the more common word g*t. You've probably heard of it. That was the first no-no. As far as I can make out, the fatwa was declared because this is a rather fashionable, faddy theory. (Though I think it should be more thoroughly researched as it sounds feasible to me.) Hence the "campaigning" aspect.

      The LG theory suggests that the distortion in the cells of the intestinal walls is originally caused by the action of C in the digestive track. After a while we found we were getting posts deleted just because we mentioned C, without even bringing LG into it! We now have to say thrush, which in fact is only part of the C story.

      Did your missing post get reinstated btw?

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