Swaying

This sounds to me like Mal de Debarquement Syndrome (MDDS). It's a maddening feeling, and definitely makes functioning hard! If you look it up, you may notice that there's suicide hotline numbers at the bottom of the webpages. Maddening! I did get used to it after a while, and it helped to know I was okay neurologically. (I was cleared by the "top dizziness expert" ENT in Boston as well as several neurologists. They just shrugged and told me to go see a specialist that I found online myself. There's a doctor at Mt. Sinai in NYC who treats MDDS by mapping the swaying pattern of an individual, and then programming a platform to move in the opposite manner while they stand on it, sort of re-mapping the brain's proprioception. My hunch is that this works best for people whose MDDS is caused by long boat trips (as the name implies) or other environmental input, and not people who have it as a symptom of inflammatory illness. As far as I read when I was looking into this, there's not a serious condition associated with this symptom that you should worry about (e.g. brain tumor). I got better without seeing the specialist.

I believe that the cause is neurological inflammation. What fixed it for me were: decreasing overall inflammation (taking curcumin, treating MCAS, etc.), addressing neurological dysfunction (POTS remedies, restorative yoga, craniosacral therapy), and DNRS limbic system retraining. I can't really be sure which was the most helpful because I did them all around the same time. The MDDS still appears mildly when I am sleep-deprived, very stressed, overloaded with too many things for my body to process, or occasionally when there's a rapid fall in barometric pressure.

I actually swayed, too.

http://mdds.nyc/

Girlie said...
Yup - I used to sway.
It wasn’t bad enough that I would lose balance and fall down though.

It went away with treatment...I believe it was after several months on the Bart treatment - Rifampin and mino.

I don’t fall either but it’s hard to manage. Just standing in the kitchen to cook dinner is a huge effort.
Everything is a huge effort. This has to be my worst symptom because there is no break. It’s constant.

The only break is about an hour in the morning before it starts.

Plus I have an internal shaky feeling too.

I had swaying along with some other balance and perception issues. I did not have mal de debarquement syndrome. Both my doctors had me walk across the room heal to toe. I immediately started falling over. They both said, “Mold.”

It got better after I left the first moldy house and office and started detoxing. I also walked like a drunk at times; bumped my head on cabinet doors and car doors; ran into door frames and the edge of my cubicle; nearly fell off the curb trying to step down onto the street; banged glasses on the table trying to set them down; felt like I was moving backwards while stopped at a traffic light when the car next to me was the one moving instead of me.

I had the internal shaking when symptoms first appeared in 2009 and felt like something was “off” in my head. Couldn’t drive for 2 weeks. Couldn’t stand to watch TV. Felt like I was off-kilter walking outside or in large open buildings like Walmart, but didn’t notice it much in the house. That was 6.5 years before knowing it was Lyme/co. Got better on its own.

Post Edited (WalkingbyFaith) : 2/12/2021 1:18:40 PM (GMT-7)

I used to have these symptoms so badly that I could hardly function. Driving was a joke as the movement around me made me so confused since I already swayed and shook so much already on my own. I literally would sway so much as to completely fall down standing with my eyes closed. Partially it was ruled out as nerve damage on one side of my body, which was probably true since I had lessened feeling in one side as well (so minor I didn’t realize it until my chiropractor was pounding on the base of both of my feet with a reflex tool and then I could tell finally).
but with treatment and with removing myself from mold and with tons of lymphatic drainage massage treatment (2years worth) my toxic load finally has reduced enough for that symptom to leave.

All the best. I know the torture of that feeling.

sdarrah said...
Can you tell me if you used binders? My main symptom that I am desperate to get well is not being able to walk, I have no balance or coordination and I am very lightheaded or brain fog. I have been told to take Bentonite Clay, Act Charcoal and I take Lipsomal Glutithione and Meriva Cucurmin and was told it could take at least 4-6 months to see any improvements by Dr. M R in Washington. I'm praying, its been 4 years since I could walk normal!

I’ve been on lipsomal glutathione and cucurmin and I see no change in my swaying.

These things don’t kill the infection.