This past Sunday I was presented with a challenge. Actually the past several Sunday's I have been presented with this same challenge. You see, along with the Visual Snow and it's crazy amount of weird neurological symptoms, I've seemed to have acquired some other weird symptoms.... while singing. I've always loved singing... I'm decent at it and enjoy it, so on Sundays at church I use that time to belt out some of my favorite songs that the band is singing. As of late however I have been having some odd symptoms. It seems as soon as I start singing my heart begins to beat out of my chest and I start to become faint... I literally have to stop singing, grab a drink and try to breathe. I have no idea why this is happening. I have tried to point my finger at it being nerves, but that's ridiculous because it's not like I am standing on the stage. Anyways, so I became faced with a challenge when I began to feel faint. I decided I was going to sit down, but first I looked around the room. I saw two other people sitting, one who was about 8 months pregnant and the other with an apparent broken back... I decided to stand. I couldn't allow myself to get into a position where I would have to explain what was happening to me. Wow, how ironic is that? I have a condition that very little know about and here I can't even speak out about it. How can I expect anyone to ever understand the condition, let alone donate to the gofundme page to raise enough funds for the next phase of research?
Maybe it's pride? I am sure it's pride. I've spent years and years trying to stand out from everyone else and now I do because I am different and I so badly want to blend in. I just want to be normal and not judged that I am not like everyone else. I have something wrong with my brain. The truth is... I look normal on the outside, so I don't think any of my previous statements are rational.... it's very much irrational to think that way.....
I did however experience a situation where the same person I've already told about my issues asked me to join her at the same function I already told her once that I could not attend because it was at night. She used the same responses she did last time stating she would drive, etc. I gave her the same answers as well. Needless to say it's very unlikely that she retained any information about my condition because... how do you explain an invisible illness when, in her own words, "You look so normal!".......
HI. I found your blog and I want you to know I totally understand what you are going through. I"m a 32 y/o who has had chronic autoimmune problems and other issues and a year was hit with BVL which i suspect is autoimmune in my case. I have Bilateral Vestibular loss, chronic eustachian tube dysfunction, severe environmental allergies, hashimoto's thyroiditis, t2 diabtes, hypertension, and degenerative disc disease.. I've got a 70 y/o back after one failed surgery and i'm 5'11 155 lbs and was in good shape.
ReplyDeleteBut of all the things I have, the vestibular loss has been the most crippling. I was getting my pilot's license which had been a lifelong dream and even though i was diabetic i got a waiver to fly only to be diagnosed with this stupid rare disease months later. Mine started 2.5 years ago when I got a severe cold and couldn't unblock my ears. Had to pinch my nose constantly to get relief. I was told this is common and diagnosed with Eustachian tube dysfunction which is a middle ear problem and has nothing to do with the inner ear. It never went away but a year later i started developing dry mouth, scratchy throat, burning and itching in my ears and worst of all constant ringing. ENT said my hearing was normal and allergy testing revelaed i was allergic to everything very severely which i had never been before. A month later a developed an off balance sensation that was constant and couldn't focus my eyes. VNG revealed very little function. ECHOG was normal so they are so saying probably not menieres. I don't get spinning vertigo attacks. I have been to 3 otologists and 4 ENT's with no firm diagnosis except BVL that is aggravated by severe allergies. Vestibular rehab has not helped and i have seen very little improvement in the one year i have had balance issues.
This has totally devastated my life. No on understands and im accused of beign a hypochondriac. No one knows how even watching tv or driving has become so difficult because my eyes can't focus on motion and how i get dizzy. I look normal and have normal gait so the docs say i'm compensating for the loss but I still don't feel normal and can't function normally even at my job as an engineer which involves a lot of computer work.
I'm sorry for the rambling post but do you have any suggestions or tips? I suspect the middle ear problem that i had with my e-tubes gradually developed into an inner problem even though they are unrelated according to docs but i feel it's too much of a coincidence that i developed a middle ear problem and an inner ear problem within one year. The only alternative i have left are allergy shots or immunotherapy which has been suggested but it's expensive and i don't know whether it will help. I keep being told once the hair cells die they are gone. Apparently i'm a very rare case of autoimmune mediated vestibular disease with no hearing loss but i'm so frustrated at how little the doctors's know about this condition and treating it. Anyway, thanks for reading and best wishes. Maybe if we put our heads together we can find a way to cure this awful condition
Hey, I would love to hear how you have been.
DeleteMy email is Candi.Malburg@gmail.com
Hey, I would love to hear how you have been.
DeleteMy email is Candi.Malburg@gmail.com
Hi! I am so sorry to hear of everything you are going through. I completely understand everything you are saying, especially about your life long dreams being taken away.
ReplyDeleteEverything you mentioned about your ears, I've experienced too. I was diagnosed with BVL a couple of years back even though my gait is normal... except when I close my eyes. I went to see another specialist who has me one this... Do you get dizzy with visual stimuli or dizzy for no reason. My answer was.. I get dizzy with visual stimuli... he said my problems sounds more of a migraine related issue as migraines cause dizziness (I get migraines and they cause dizziness for me) especially with movement... BVL usually causes a constant unbalanced feeling and being on un leveled surfaces make it worse. When do you experience it?
I tried vestibular rehab and thought I was getting better, but it actually made my vision worse... I have issues with processing movement in my periphery and my depth perception is bad.
I would try to get in to see another dr. for a second opinion. I went and seen an ENT at a well known university in my area for the second opinion. He looked at my tests which I had failed and said yes I failed them, but the responses still looked pretty normal. I also got very dizzy during the testing which I was told most BVL patients don't get.
If it is autoimmune, you may want to look into low dose naltrexone. I have heard lots of great stuff about it, in regards to helping auto immune disorders.
Never ever give up. You are so young and you may have to spend a good part of your life fighting this, but stay determined... don't listen to anyone who says you are making it up or a hypochondriac, and just keep persevering. I am 8 years into this and we just finished one set of research and are now onto the next one soon and hoping for a treatment. You just have to keep moving forward and trust that God will get you there, if you are a believer, and mentally see yourself flying those planes and doing what you wanted to again. Good luck friend!