Feel like I've lost everything
This is just a long, highly parenthetical complaint about my symptoms. But no one I know understands what I'm going through, so I'm venting as part of my introduction.
I'm a 50 something she/her. 10 years ago, I had an amazing career, an active social life, many active hobbies and had just started climbing. (GREAT fun!!) I dated, had several people I considered "chosen family", and felt generally positive.
I had noticed for a few years that sometimes I felt "light-headed". Since I have a problem with low blood sugar, I would usually sit down and eat something and the symptoms would pass.
Then, at a conference out of state, I collapsed in a conference center. I had taken over half an hour to walk 3 blocks from my hotel to the location of the conference. I was weaving back and forth - I was convinced, when I walked into the conference hall, that people would think I was still drunk from one of the many "networking" functions held the previous evening. A security guard spied me as I entered the conference, asked me if I was OK (to which I replied, "I'm fine.") Then the floor rushed up and hit me in the head! The guard insisted on calling an ambulance.
I was "tacky" (LOL - southern interpretation of the term) and found out on the ambulance ride that I have a Left Bundle Branch Block. I was admitted to the local hospital. My electrolytes were very "off" (my term). Sodium was so low, "...I've seen people with better values having seizures..." as one nurse commented. I was kept for 3 days before the "benign" positional vertigo was stable enough for me to take a cab back to my hotel.
It was not BPPV. I still do not know why I have vertigo. I've been unable to work for 6 months, I've gained 40 pounds due to inactivity, I've been diagnosed with almost everything possible. My best friend blocked me when I postponed a cerebral angiogram ("It's like you want to draw this out"), I've spent thousands on co-pays, thousands on glasses (4th nerve palsy) and seen a LOT of doctors. I've lost hearing in one ear (who knows why?) and I'm driving myself all over a large metropolis just to get to specialists.
Normal life issues (my dog is going blind, my landlord has not fixed/replaced the washing machine in almost a month, my family is - well, a family - and there is a LOT of snow) seem insurmountable.
I LOVED my job! I'm in IT - meaning, I have 2 very large screens that I stare at for 12 or so hours a day, and I used to love every second of it. I can barely log on to read a forum or research my condition now, and I'm super lucky if I can remember a damn thing I read. 80% of my job is research - online. My second hobby was reading - I collect first editions. Can't do that anymore! I constantly trip over my feet or just get vertigo if I try to do anything physical. Most environments seem "loud" either visually or literally, so I don't socialize anymore. That climbing harness I bought 8 years ago is way, way too small for me now. Even shoveling snow can bring on a vertigo attack.
I really am at a loss. The vertigo just got so, so much worse about 6 months ago and it has not let up. I can't get consistent medical information, and I can't research what little information I do get. I wake up, watch TV (I found that buying one of the new 4K TVs helped, since I rarely used my TV previously, I just had a really old one), drink some wine (no, skipping the wine doesn't help. Alcohol apparently works on the same GABA receptors as traditional vertigo treatments - is it a good thing? I'm sure it's not, but what do I have to lose?) and then I go to bed and start the same thing the next day, except for medical appointments.
I have "weird anatomy", the heart thing comes and goes, I've seen every specialist I can find. At this point, they are actually starting to refer me back to each other. I'd really like to have the low range hearing back in my left ear, and I'd like for the ringing to stop. I'd like to be able to see out of my right eye. I'd like to be able to go up stairs without the world tilting, be able to walk my dog or walk more than a few blocks without feeling lost.
This is a nightmare.
Hi, sorry for the delay in response. I am a patient as well and understand how difficult this disorder can be. There are support groups, Facebook groups and other coping ideas. Try to educate yourself as much as you can, by going to vestibular.org. Wishing you more balance in your life.
I am so deeply sorry for what you're going through! I read your post with sorrow and could relate to the genuine feelings of despair, as I've had vertigo for 6 months, continuously, recently had two surgeries to remove bladder cancer tumors and also developed gastritis and reflux esophagitis which all together has destroyed the life I knew. Even one of those diseases destroys our lives.
I have been praying and trying to remain positive that as i work at eating as well as I can, i can make progress. My diet was very good before all this happened last summer, but now I'm doing everything I can to give my immune system the ammunition it needs to kick these damn diseases to the curb!
I wish you all good things and am sending good vibes for your healing.
Sometimes it helps to know you are not alone and someone understands.