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Moving, Yet Lying Still


suziebear
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Hi again,

I am on a downhill slide and trying to figure out if it is just POTS or is there something else going on.

Has anyone ever had a strange feeling like they are moving a little while lying still. Sounds crazy I know - is not like big movements but when I lie / sit or stand it is like my body does this thing where it feels like it is moving a little forward, then a little back, then a little the other way. I keep calling them dizzy spells but I guess they are not so much a dizzy thing. Is kind of like a preasure thing as well cause I keep getting pressure feelings through my back / neck / head. I also have time when sitting / standing like I am being pulled forward or backward to the ground. I feel like I lean forward or backward to compensate for it.

I have in the past 3 weeks had a head / and cervical spine MRI to cheack it out and all came back normal. I have had a MRV and again normal.

I have a EEG booked in for Monday but the neurologist is saying she expects it to be normal too.

They are saying either POTS or migraine related. I am not on any meds at the moment so can't blame them. I am due to start florinef (fingers crossed third time lucky as the last 2 times it made me feel awful) and then inderal (as this is also a anti migraine med and I suffer from migraines). I am cautious of starting these meds which I was meant to start yesterday while this is going on so badly.

This feeling is stopping me from going anywhere and doing anything. There is now no relief. I used to be able to go and lie down and it would all settle so I at least had some relief from dizzzy / woozy spells. But now when I lie down I have this whole new feeling and it really is quite scary. There is just no letting up.

Can people also please share with me there experiences on Inderal and Florinef. I have searched the archives and this helped alot but I was just hoping some people would share some more current expereinces as well.

Thanks and I hope everyone is having a fantastic day.

Cheers

Susan.

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When I am lying down I often get a feeling like I am rocking on a boat. Sometimes it is really extreme, and it feels like I am lying on a see-saw with my waist at the center axis. It feels like my head goes a foot or two in the air, and my feet go a foot or two through the mattress, and then it reverses - with my feet going up in the air and my head going way down. It is a very strange feeling! I have found that if I roll over onto my side the feeling usually goes away. For me, I am pretty sure it is just dysautonomia related.

Rachel

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