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DHughes
(@dawnurbanrborcare-com)
New Member
Joined: 8 months ago
Posts: 2
 

Hi, my name is Dawn.  I have PCS, diagnosed in 2014. I started seeing a new doctor in 2020 and I am just learning that I have vestibular nerve damage and who knows what other brain damage- 13 years after my original debilitating fall injury. Well, that explains a lot!

The trauma I have been through because of the missed diagnosis makes me sad and angry. I am in a bit of a crisis after being denied help on every level for so long.  Truth is, those doctors and the bullies were right.  It IS all in my head.  Now how do I come to terms with it?  Bullied, abused, assaulted, shunned, ostracized, and left to die for so long now.   I don't know where to turn or what is real or who to believe.  Is this really ever going to get any better?  

How are others managing to support themselves and their dependents long-term through this?  Keeping a household, bringing in the income, and keeping everyone else organized and together.  Having a brain injury doesn't negate financial and social responsibility.  Just ask the IRS! I am failing at everything and having huge meltdowns every day. I have no quality of life left. Yet I'm expected to do everything anyway. American Individualism at its finest! 

Is there an organization to help people dismantle their lives into something sustainable after a disabling condition?  Where do I turn? Where do I start? What if those around me are reliant on keeping things the way they are, and so they won't let things change, regardless of how much it hurts me?

Maybe I'm not even looking for an answer here.  I get that every person's situation is complicated.  I am just expressing extreme frustration, needing something to grasp on to that is real.

 

This post was modified 8 months ago by DHughes

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Tucson Carol
(@carolt)
New Member
Joined: 8 months ago
Posts: 2
 

@agram

This was a very interesting story, Graham. You were very clear and concise, so it was a pleasure to read about your experience. Thanks, Carol

This post was modified 8 months ago by Tucson Carol

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Tucson Carol
(@carolt)
New Member
Joined: 8 months ago
Posts: 2
 

@jebulgo

Thanks so much for offering to help folks, James! I'm even newer than you! Joined today (27 Feb 2021)!


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Dianne
(@dianne1088)
New Member
Joined: 8 months ago
Posts: 2
 

Hi, I’m Di from England

i was diagnosed with vertigo over 3 years ago but have since been told that it was a misdiagnosis.

My balance is poor & my quality of life has diminished greatly as I can’t go out on my own or concentrate enough to be able to work.

I’ve  spoken to 6 different doctors in the past 4 months who have all said different things.

I finally saw a neurologist recently who is amazing. She spoke with me for an hour to try to get an understanding of my symptoms. She has arranged different tests to see if we can get a proper outcome & treatment (hopefully there is one).

I am a counsellor & advocate but can’t concentrate enough to be able to work. I am also suffering with anxiety, something I have not experienced before.

It was such a relief to read the information on here as I can relate so much to many items. 

It’s so difficult not having a proper diagnosis & to fully explain what I am experiencing.

My symptoms started after a long cruise where it was thought a joke, as I felt as if I was still at sea when on dry land. Medication helped for a while but symptoms have since developed & nothing seems to improve my balance, headaches, lack of concentration & general fuzziness. Of course this all has an effect on my mental health as I feel it’s so out of my control & it’s taking so long to see specialist. 

I’m hoping to get a greater insight from all the information & others experiences on here..


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sandi64
(@sandi)
New Member
Joined: 7 months ago
Posts: 2
 

Hi Dianne,

I am new here so bear with me. I was reading your story and I felt the pain for you. I hope you are getting the help you need to overcome this terrible condition. When I first had the vertigo disorder over 10 years ago, one of the first things that I had struggled terribly with was the awful constant anxiety every day for 24 hours that lasted at least 8 years!! I struggled alone without any help, even my husband couldn't help me. Finally I got to the point that if I don't get help now with my mind I will end up with even more problems in my mind and body...I had to find a way to help myself no matter what. So, I looked online on amazon for books on mental health and found a book that actually helped me to overcome my mental issues(anxiety). It's one of those DUMMIES book that I had brought and it literally saved my life! My anxiety issues that came along with the vestibular disorder was greatly reduced by reading this life saving book in just a few months or so. If you have mild, moderate or extreme anxiety, I highly recommend this book to bring you peace and calm in your mind in the mist of your vestibular disorder. Wish you well in your recovery.:-)


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Sue
 Sue
(@vanoz)
New Member
Joined: 6 months ago
Posts: 3
 

@dawnurbanrborcare-com

 

dawn....just read your story and although I have suffered Vertigo for seven years I feel blessed that I do not have the added burden of having to support a family at the same time...I feel dreadful for you and hope you have at least had some treatment that has helped as I am unable to figure out how to view replies on this forum yet...I just want to wish you the best...

 

I have not found a treatment that has suited me as yet or a professional to diagnose a treatment that doesn’t cause me more problems but reading your story makes me want to appreciate the fact I can cope as long as others aren’t relying on me to be well..My family are all grown up.

 

Good luck

 

sue


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Bluestar
(@bluestar)
New Member
Joined: 5 months ago
Posts: 2
 

@soniacn hi I was interested and if there was any progress in your condition?


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Ray Love
(@rachaellovett)
New Member
Joined: 5 months ago
Posts: 1
 

Hi all, my name is Rachael and I'm 52.  About 3 years ago I decided to start taking HRT as was struggling with perimenopause symptoms.  However, within a few days of taking the tablets (estrogen), I started to feel dizzy and disorientated.  After 8 days I was advised to stop.  However, this seemed to be the start of my hellish journey with what's believed is vestibular migraines.  I visited my GP 10 times in 4 months in the worst state I've ever been in.  I kept getting rebuffed saying it's just BPPV.  However, by this time, I noticed my symptoms were far worse around menstruation.  I constantly felt cotton-woolly, disorientated, detached from reality and struggled to make sense of my surroundings.  I was struggling to be a Mum, wife, daughter and employee etc., and after lots of begging, finally got GP to refer me to ENT consultant.  Was given Nortriptylene which seemed to settle the sympoms somewhat.  It was later advised that I might benefit from trying the HRT patches, which I stupidly agreed.  Within a week of wearing the first estrogen patch, my symptoms worsened before I had chance to try the progesterone patch.  I later suggested to my GP that I might benefit from the progesterone only pill to regulate my (possible) low levels of progesterone.  These also seemed to keep my hormones regulated.  However, I'm fast approaching 53 and have noticed that I constantly feel fuzzy headed, struggle to concentrate or make sense of everything going on around me and never feel like I'm fully with it, or firing in all cylinders.  I'm wondering if my GP would refer me to a specialist, a thorough blood test might reveal exactly what' going on with my hormones and if it's worth me stopping the mini pill to see if I've gone through the menopause?!  My GP is happy to prescribe pills but never wants to refer to a specialist, but I'm fed up of feeling fed up!  My medication keeps me going, but never completely helps my symptoms.  Can HRT really have set off this dreadful condition?  Has this happened to anyone else?

 


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RebeccaBower
(@rebeccabower)
New Member
Joined: 4 months ago
Posts: 2
 

Hi, my name is Rebecca I am glad to join you, you have a lot of useful information on the forum! 😘 


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Scooter
(@satcoop3903)
Active Member
Joined: 5 months ago
Posts: 15
 

@rachaellovett hi it sounds like you should find another PCP I don't think they are listening because they believe the pills can only help but I know from experience benefits don't out weigh the side affects its the other way around. I use a lot of Dramamine to help me with my balance at least you can function with everyday life


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Scooter
(@satcoop3903)
Active Member
Joined: 5 months ago
Posts: 15
 

@dawnurbanrborcare-com I can totaly relate my situation is very much the same as yours. I always thought I was the only one but seems that are health sytem is failing. They see so many patients I think they have a time limit almost like they work in factory on a assembly line its all about money sorry your goung through this


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Keyboard Lime Pie
(@happyhourglass)
Eminent Member
Joined: 4 months ago
Posts: 20
 

I may have posted in the wrong section of the forums so sorry in advance. I'm new here and this place has me a bit confused but I'm happy to have found this place cause it seems like the perfect place to interact with others that are also going through the same things I am. Thanks! And I'm from Texas


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Ubbi Dubbi
(@buckwheat)
New Member
Joined: 4 months ago
Posts: 4
 

Newbie here and I'm glad to have come across this website/forum. Seems like a very understanding place with helpful resources and support. 😀 . Hoping to talk to you all soon.


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Karen R. Mizrach
(@krmizrachgmail-com)
Eminent Member Patient Forum Moderator
Joined: 1 year ago
Posts: 49
 

@happyhourglass Hello Keyboard Lime Pie! Welcome to the Forum. It can be confusing navigating the site at first, but there is so much good information and great people to connect with. These disorders are often very difficult and lonely to deal with, so being able to communicate with others is key. Glad you're here. 


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Bob LaBlah
(@chriskannenberg)
New Member
Joined: 2 months ago
Posts: 2
 

@lance396 Hi may I suggest plugging your ears and seeing if this helps, wishing I had just stuck with that after getting surgery 


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