Barbara, thanks for pointing out you posted that video. :cheese: I am fairly certain the hard collar will bring relief and also be somewhat diagnostic in itself. Have to ask you though and I know you are in the UK so medicine works differently (lived there two years as a teen) if you had head and neck injury and Diamox helps, have you had imaging, rephrase, GOOD imaging (upright MRI, Flex/Ext MRI or such?) to see what is going on?
Interesting about the head and neck injury connection. I remember when I was in what turned out to be the temporary IRB for CCSVI treatment, ahem, one of the questions was if I (patient) had had a head injury/fall as a child. And, I had two bad falls onto my head as a small child. Had a whiplash injury at about 21 y.o. also. Plus HEDS. Besides being sick all through my childhood, the one thing that really disrupted my life, starting at about age 11 or 12 was the back of the neck/top of shoulders pain. Unrelenting. Dr’s stuck different labels on it (Scheuermann’s Disease first, which I believe was totally wrong Dx and later tendonitis). Then at 14 the headaches started. CT report said Pseudo Tumor Cerebri, but doctor told my mom that didn’t mean anything, so I went untreated until 2.5 years ago when I started Diamox. My neck subluxes and goes out of place easily, very unstable.
Which brings up one other thing that might have lead up to this extreme flair up, and that is that a few days before this intractable head pain started I had a chiropractic adjustment. Hadn’t had one in a long time and my neck was so tight I wanted to give it a try. And, even my chiro commented that I adjusted (cracked) more than I usually do.. by a lot (my ribs too). Still, the pain didn’t start till 4-5 days after that. So ???
Dr. Diana, my levels are monitored and are all good, potassium included (I take Potassium Citrate every day). I too would like surgery to be of last resort, but from where I am right now, with a house full of children who depend on me, I need help now. :down: If I get imaging that shows structural issues, the kinds that Dr. Henderson sees/treats I guess I’m not understanding how anything but surgery can help? As it is, getting into see Dr. H is 8+ months out right now (just read that on another forum). He’s getting as “popular” as Dr. Francamano.
It is difficult to walk right now (like you mentioned, dizzy when I turn my head, plus my balance is just totally off, left leg is dragging, etc.), brain fog is so thick I can’t think very well and struggle to find words (you can’t tell from this post, like how many mistakes and how long it took to write this, ha), reading words incorrectly, etc. and the totally disabling fatigue on top of the intractable head/neck pain. Oy.