You are all so sweet and I miss this board so much! I need to keep myself logged in so I can stay connected with all of you instead of getting all whiney on FB. I got the FB message for Oldfanfic and thought 'Why the heck am I not enjoying my 'rats??" and then I finally remembered my password again! <3
My condition is called Meniere's Disease (endolymphatic hydrops) but I also have Vistibular Migraine and a weird thing called Mal de debarquement (MDD) syndrome which causes you to feel like you're on a swaying boat all of the time or at least a lot of the time. My MD is bilateral, so I have it in both ears. My doctors all conclude that it started when I got sick in London back in 2017 with Labrynthitis and it just pretty much has played havoc with me ever since.
I am prone to drop attacks (when you just suddenly fall over as if God himself just reached down and pushed you over), sudden and violent onset vertigo with vomiting and all that other fun stuff and cluster headaches with almost daily dizziness. It really is no fun
I haven't had a full-on vertigo attack that lasted longer than 1-2 minutes since March so I'm optimistic about that. Most of my vertigo attacks last anywhere from a few seconds to may 2-3 minutes but my longest was 56 hours and my average is about 6 hours.
My GP referred me to an ENT who referred me to a neurological ENT who referred me to the Otolaryngology department at Seattle's Virginia Mason Neruosurgery unit. I have had endolymphatic steroid injections in my right ear, have taken every kind of weird med you can think of and even have some strange nasal spray to settle down a sudden cluster headache. I'm so exhausted from it all that I am cranky and absolutely unmotivated.
My surgery is scheduled for 8/19 and they'll remove the mastoid (sp?) bone behind my right ear and go in and alleviate the pressure in the endolymphatic sac and then replace the bone and staple me up
I'll stay over night and will lose hearing in teh right ear for maybe 6 weeks but the surgery should stop the vertigo and constant, never ending pressure cooking roaring and pressure on my right side. If all goes well, we will either do the left side or maybe I'll be good with just the right. It's my worst side and the most prominent trouble maker ATM.
Hubby wants me to look into my autoimmune disease and see if it plays a part and I talked to my doctor today to see if EBV (Epstein-Barr Virus) is a contributing factor. He said it wasn't but was willing to allow me to take an anti-viral to see if I felt better; but with as long as my symptoms have lasted consistently (since October last year) he doesn't think it's likely.
Anyway, sorry for the REALLY long post. And thanks to Anna for reeling me back to this wonderful and comfortable place. I get so upset and nasty on FB and need to just stay away from all that negativity for awhile.
Thank you all and I really love you all and love this group!
Dy
