Hello! I just found this website today and have been reading lots of posts and topics. I was unaware that others had issues like I do. I still do not have a real diagnosis (I just found a doctor that was able to help me with more than just its all in your head or deal with it), I am waiting to get an appointment to see a doctor that specializes in this (didnt even know what it was).
I am not even sure when this whole thing started--I had vertigo and dizzy spells back when I was in high school (40+ years ago) and back then my parents took me to doctors and specialists who ran tests (some not so nice---like the one where they inject air into your spinal column and do a ct scan); ultimately my mother put her foot down and told (at least one of ) the doctors a good piece of her mind....and that was the end of my journey to find relief from dizzy spells--until I had some orthodontia done--a pallet expander was put in and after one or two turns my dizziness was GONE! I spent the next 10 years blissfully free of dizziness, until the TMJ that resulted from the (poorly done) orthodontia sent me to a dentist. He used splints and ground my teeth down and yes, then my dizziness came back. I dealt with it on and off for the next 20+ years. I also have (had) been see chiropractors for the pinched disks (hereditary). Recently (4+ years ago), I started seeing a new chiropractor who does work with your atlas and had been free of lower back pain and such for a while. Then last July (2021) I woke up on my left side, did a minor adjustment to my neck (which I do just about every morning) rolled over onto my right side and sat up---WHAM vertigo the room went spinning and I went back onto my right side while I watched the room try to stop moving, took me a while to finally be able to get out of bed and try to get to the bathroom. I was also nauseous. It took a few days before I was even able to walk more than to the bathroom and living room couch. I did some googling and everyone said its the crystals in your inner ears out of whack and there is a maneuver to fix that (do not try that one at home--or for me, anywhere). Yeah, that didnt work only made me more nauseous and dizzy. After a few days of not feeling any better, we tried the ER where they gave me antivert and an anti nausea drug, both of which did exactly the opposite!! After hours and no answers, I was sent home.
At this point I started to figure it out on my own, I tried my reg gp (who was on vacation and her 'fill in' only took 'emergency cases' and told me to wait for her return), I tried an ENT, TMJ dentist and a few others only to find more questions than answers. I now only slept on my right side (and still have not slept on my left to this day). I had also been having 'panic' attacks which took me another night in the ER (thought it might have been a heart attack, now I know its not). Next new development happened about a week into the new year as I was watching tv sitting on my couch. My normal nightly heart racing had not started, but instead what feels like an anxiety attack (world ending, fight or flee, crying, etc). Panic set in as well. Knowing that the folks in the ER were not capable of dealing with these kinds of situations I tried to make an appointment with my gp ---who was now out on maternity leave (guess that vacation did wonders), but they suggested I try the immediate care facility instead. I made an appointment for 2 days hence (first available one) and waited (not so patiently as I was still in full panic/anxiety/dizzy mood). Not much help from them or the other 4 times I tried over the next week (other immediate care, reg doc--whose replacement this time tried to give me a drug I am allergic too!!! and finally the ER where they gave me an anti-anxiety shot which did finally let me get some sleep but the down side was horrible). So back to deal with it as the doctors can only see horses and not the zebra or unicorn in the crowd. I gave up on my gp (FIRED!) and started to look for alternatives. I found a Holistic clinic and have had some help from them (been doing acupuncture and herbs and such) but no diagnosis.
So about a month ago I had another really bad dizzy spell upon siting up (no need to wait for 10 minutes, its immediate) I had just turned my head right and BAM flat on the bed again. Turning left had no issues so I spent most of the day being careful when I turned my head or any other posture change. The dizziness past, but now I dont sleep on my right side either only on my back (which I still have 2 pinched disk and one bulging one in), so sleep is not restful nor very long. And not to much thereafter I had started to get that cold butterfly feeling in the base of my abdomen when laying down (which is the start of the 'anxiety'). So I have stopped sleeping in my bed and now use my love seat with pillows and stuffed toys strategically placed to keep me in one position. This allows me to get a few hours of sleep before that cold butterfly feeling wakes me up and wont let me go back to sleep.
Last week I finally decided to try and find out what I had (dealing with it is not doing it for me) and decided to go the route of it being a bad chiropractic adjustment (which I still think it might be or that pesky tmj) which led me to osteopathy. I was able to find a doctor who does that as well as holistic. She took the time to listen to me and take an indepth history with her preliminary diagnosis being POTS. Unfortunately its not her specialty and the doctor referral she gave me has more than a year wait list for new patients. I am unsure of the future, but at least there might actually be a light at the end of this tunnel?
Thanks for reading.
