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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Scary headrushes and dizzy spells

frozenborderline

Senior Member
Messages
4,405
Does anyone get head rushes that are disorienting and scary with this illness. ? Almost like a hot flash or something? Its different from normal pots stuff in my experience... that's why I ask

Orthostatic intolerance feels very characteristic to me , and what I'm describing is sort of new and separate from orthostatic intolerance, a different kind of dizziness that feels unfamiliar, quickly comes on, with rushes of confusion.

I've had something like it that was resolved by traction (I have cci), but I haven't tried traction or inversion yet for this.

I've had both neuroimaging and imaging of my veins as recently as a few months ago, that was very thorough, when I had a similar spell, and it didnt turn anythi ng up. They were worried I had a TIA though. Really hoping that's not the case.
 

Judee

Psalm 46:1-3
Messages
4,494
Location
Great Lakes
I used to get something that I called "spiral down" whenever I turned to lay on my right side. I do wonder if it had something to do with my heart.

It sounds sort of similar to what you are describing. It almost felt like what little strength I had was spiraling down or being sucked out of me so to speak. I always turned back over quickly because it felt like I was going to black out or something if I didn't.

It went away when I went off the DHEA, Iodine and some of the thyroid medications I had been on for years.

I think these medications/supplements were just too much for my system but my doctor at the time kept insisting I needed them and would be on them the rest of my life even though they weren't doing anything to help with the ME/CFS.

I didn't expect that spiral down feeling to go away when I went off them. I just realized months later that I wasn't getting it anymore. It was very scary so I'm glad it went away.

Anyway, all that to say, perhaps you could see if anything you are on is maybe rev-ving your heart or your metabolism up too much.

Of course, it could just be the progression of the disease. I know that someone mentioned adrenal spikes. I don't get those anymore either nor the daily hypoglycemia incidents either.

Hope you can find what's causing yours and remedy it.