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Desperate for help 20+ years of untreated Vertigo

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(@42joe42)
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Joined: 1 year ago
Posts: 1
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Greetings & Hii to all from this community!

I am reaching out and sharing my story & health as it's about time I extend my reach for help and solutions, to be quite frank I am extremely desperate for any type of help so I am praying someone will have some sort of guidance or just anything to potentially help me. I also would like to apologise in advance as this may be a very long post and I know reading lots of text on a screen isn't always great for everyone.

My name is Joe and I am a 25 year old male from the UK. From age 0-5 I had a perfectly normal good life. I was walking by 8 months old and by age 4 my mother had me in all sorts of athletic curricular programs including gymnastics where I was doing all kinds of rollovers & flips. Everything until this point was either great or normal, the only negative thing to happen to me during this time of life is I had a very traumatic birth and was on life support & incubators, I am not sure of the details but my mother told me I was very very sick and that the Dr's used forceps on my head to pull me out which is what she thinks caused my issues today. Skip to age 5-6 I am now in Primary School full time public education still perfectly normal and excelling but one day out of nowhere I was running on the playground and I got struck with a bout of dizziness, nothing too intense just a dizzy spell of spinning sensation. I was sent home and it passed but this is where everything then began. Each year I would get these bouts of dizzy spells more and more each year. I could still do most things when I didn't have the spells but eventually it got worse even more to the point where I'm not having an attack of dizziness but I can still feel it in the background like something is off and that if I did something wrong like turned to quick or went upside down it could make an attack come on. Come to age 15 the dizziness evolves from what started off as just spinning sensation now when an attack comes to now more severe where gravity feels completely sideways or shifted, I feel like I'm falling in the wrong direction, my balance is gone, my heal tilts, I visually see movement that isn't there, the motions loop, I really wish I could explain it well but it honestly just feels like being put in a washing machine or physics breaking roller coaster. So now when an attack comes I get disabled and panic, unable to move which has started giving me anxiety. But now it evolves again, after an attack comes sometimes it can have a lasting effect where I have been stuck in bed laying down for up to 4 months unable to move at all due to small movements bringing on an attack. More years go by and the same story I get more and more attacks throughout the year and I now live in fear daily with the amount of little background vertigo that is there. Sometimes I have had a solid year where I am almost unaffected but I have had to live carefully in those years no planes no boats no elevators no sleeping on my back no sports or anything that could trigger a possible attack. Fast forward to today I am now 25 years old I suffer from chronic depression & anxiety all due to my vertigo. I have tried to end my life multiple times due to the vertigo being so intense and me realising I can not live like this anymore its torture and completely un berable. It has prevented me from getting a job, going to university, having children, travelling, getting a driver's license, missing family & friends events the list is endless. Lately this year I have noticed now I have been getting some tinnitus in my left ear only but it's very minute and new and doesn't happen 24/7. This could also be unrelated but since age 20 I started getting tremors in my hands too along with body convulsions when a vertigo attack comes.

 
I hope I managed to fit every detail about my condition and how it progressed over the years. As for doctors I have had no luck at all most have just tried to brush my aside and give me anxiety medication because they think it's in my head, some wanted to try MRI scans and other tests but I can't physically do any of those cause they trigger an attack for me and they refuse to put my under anaesthetics for any scans. No DR has seemed to grasp how intense this is for me even though I am suicidal from it. I tried to explain that if they do anything to trigger an attack I could be bed bound for months after it and have even higher anxiety on top of the severe attack of vertigo. So it's been really really difficult to do anything with health care. I even tried stem cell treatment in 2020 which was not cheap and it did work. I was 70% myself again and able to do a lot more than usual like going on a plane or playing sports BUT it only seemed to last about 18 months before wearing off or so it seems. Dr's have given me all sorts of theories too from Meniere's Disease to Positional Vertigo some even suspected a brain tumour but to be fair I have only tried a handful of medications or treatments as I explained I am terrified of something I try whether it be medication or treatment to trigger an attack.

So now I am completely lost and very close to giving up because I can't live much longer like this. I have already missed out on so much of my life due to this condition so I am desperate for any help or just something. I don't even mind not having a cure. I just want to be able to live normally and do all the things I dream and desire in life without any limits from my health. Personally I have no idea what could be the issue. I used to think it was an issue in the inner ear as I have a little bit of difference in hearing in one ear and that's also the side which the vertigo and world feels and looks tilted too but at this point I have no idea because stuff like Meniere's Disease to Positional Vertigo doesn't seem to add up to all my symptoms and how it seems to get worse over time too and evolves in the way the motion and visual things look. I really don't know. I am booked in with a neurologist next month who apparently specialises in vertigo so lets see but please anyone who has any suggestions or ideas I am willing to pay any amount of money for help. Also I know I mentioned anxiety & suicide but please do not be alarmed I am being cared for and in a safe space as I write this I just had to be upfront about how severe the vertigo is that it leads me to suicidal attempts in the past so people can hopefully understand this isn't just a spinning room sensation or that when it passes I am okay.

 
Thank you to anyone who reads this, whether you can help or not. I am just glad this has reached somebody and can maybe even help someone else out there who has the same experience as me to know you are not alone.
 
From Joe 🙂

   
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(@pcmaker)
New Member
Joined: 9 months ago
Posts: 1
 

Have you tried doing physical therapy for vestibular issues, Joe? It has helped me a lot.


   
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(@pbrixey)
New Member
Joined: 9 months ago
Posts: 3
 

Posted by: @pcmaker

Have you tried doing physical therapy for vestibular issues, Joe? It has helped me a lot.

 Occupational therapy was a total waste of my money and time. 

I have seen several Neurologists over the years and none could find a cause or recommend treatment or therapy that helped. My insurance company did not help either.

 


   
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(@john1644)
New Member
Joined: 8 months ago
Posts: 2
 

 Had balanced problem since 2005.   Dagnosed with Bilateral Vestibular Loss  (finally) March 2017.  Many physical therapy sessions.  All waste of time.

Difficult getting around house with walker.  Appointments made with my electric scooter. Sit most of day to avoid falling.   Talk about  luck   ??????


   
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(@libbyboyd)
Active Member
Joined: 3 months ago
Posts: 40
 

Your symptoms sound very severe and I understand how this can have a serious impact on your life and mental state. Seeking medical help and specialist support can be the first step towards improving your condition. In addition to medical help, it is also important to find support in your community.
Don't give up, Joe. Although things may be difficult right now, there is hope for improvement. It is important to remain hopeful and seek help.


   
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(@trina83)
New Member
Joined: 3 weeks ago
Posts: 3
 

Hey Joe my name is Trina I’m 25 as well and am going through exactly what you are. I would like to talk if that’s alright. I thought I was the only one living this way! It would be great to connect with someone who understands what we go through! Please get back to me ! Or message me! 


   
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(@darcyb)
Joined: 1 year ago
Posts: 12
 

@trina83 Hi Trina, I am Darcy with VeDA. I am so sorry you are going through vestibular problems like Joe. Let me know if you have any questions or need someone to talk to. I know it is difficult.


   
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