POTS site

Jill Admin Zipperhead Posts: 164	POTS site Jan 20, 2013 16:07:29 GMT -5 Quote Select Post Deselect Post Link to Post Member Give Gift Back to Top Post by Jill on Jan 20, 2013 16:07:29 GMT -5 Lots of information here on Dysautonomia, the actual diagnosis of Posterial Orthostaic Tachycardia Syndrome. dinet.org/
	Decompressed 6/1/12

Donna Junior Zipper Posts: 69	POTS site Jan 26, 2013 0:44:07 GMT -5 Quote Select Post Deselect Post Link to Post Member Give Gift Back to Top Post by Donna on Jan 26, 2013 0:44:07 GMT -5 Great site for information.
	Decompressed 03/08/12 CSF leak repair 04/12 Shunt surgery 11/20/12 POTS Sleep Apnea

Leslie Schrader Admin Zipperhead Posts: 161	POTS site Jan 26, 2013 9:55:26 GMT -5 Quote Select Post Deselect Post Link to Post Member Give Gift Back to Top Post by Leslie Schrader on Jan 26, 2013 9:55:26 GMT -5 Donna is our resident POTS expert, btw
	~~ Decompressed 11/30/11~~ Also diagnosed with sleep apnea.

Donna Junior Zipper Posts: 69	POTS site Jan 26, 2013 11:14:26 GMT -5 Quote Select Post Deselect Post Link to Post Member Give Gift Back to Top Post by Donna on Jan 26, 2013 11:14:26 GMT -5 Happy to answer any questions about it if any are asked.
	Decompressed 03/08/12 CSF leak repair 04/12 Shunt surgery 11/20/12 POTS Sleep Apnea

Jill Admin Zipperhead Posts: 164	POTS site Jan 26, 2013 12:12:39 GMT -5 Quote Select Post Deselect Post Link to Post Member Give Gift Back to Top Post by Jill on Jan 26, 2013 12:12:39 GMT -5 Awesome! I had many symptoms prior to surgery, but they seem to be leaving me as I recover. Glad to see those go...
	Decompressed 6/1/12

Donna Junior Zipper Posts: 69	POTS site Jan 26, 2013 12:25:04 GMT -5 Quote Select Post Deselect Post Link to Post Member Give Gift Back to Top Post by Donna on Jan 26, 2013 12:25:04 GMT -5 Mine are slowly leaving me after getting my shunt, but it won't go away, unfortunately.
	Decompressed 03/08/12 CSF leak repair 04/12 Shunt surgery 11/20/12 POTS Sleep Apnea

Leslie Schrader Admin Zipperhead Posts: 161	POTS site Jan 26, 2013 12:43:11 GMT -5 Quote Select Post Deselect Post Link to Post Member Give Gift Back to Top Post by Leslie Schrader on Jan 26, 2013 12:43:11 GMT -5 I have an appointment scheduled with a dizzy specialist in March, but I may cancel because I haven't had day-long dizzy episodes in months! yay!
	~~ Decompressed 11/30/11~~ Also diagnosed with sleep apnea.

Donna
Junior Zipper

Posts: 69

POTS site Jan 26, 2013 12:47:43 GMT -5

Quote

Post by Donna on Jan 26, 2013 12:47:43 GMT -5

Let me remind you, they may not be day long just early morning or after you start to get tired in the afternoon, it don't mean it isn't still there. Forget the tilt table test it can give false reports the best way to get the answer is with a standing blood test. There is no question on it. Normal is supposed to be less than = to 400, at 600 they call it pots mine was greater than 1300 on mine.

Decompressed 03/08/12
CSF leak repair 04/12
Shunt surgery 11/20/12
POTS
Sleep Apnea

Leslie Schrader Admin Zipperhead Posts: 161	POTS site Jan 26, 2013 12:58:24 GMT -5 Quote Select Post Deselect Post Link to Post Member Give Gift Back to Top Post by Leslie Schrader on Jan 26, 2013 12:58:24 GMT -5 I will look up the type of test this doc will do. He is a neuro-ophthalmologist however the heck ya spell that word.
	~~ Decompressed 11/30/11~~ Also diagnosed with sleep apnea.

Donna Junior Zipper Posts: 69	POTS site Jan 26, 2013 13:01:13 GMT -5 Quote Select Post Deselect Post Link to Post Member Give Gift Back to Top Post by Donna on Jan 26, 2013 13:01:13 GMT -5 The blood test is called a Standing Norepherine Blood Test.
	Decompressed 03/08/12 CSF leak repair 04/12 Shunt surgery 11/20/12 POTS Sleep Apnea

Leslie Schrader Admin Zipperhead Posts: 161	POTS site Jan 26, 2013 13:03:10 GMT -5 Quote Select Post Deselect Post Link to Post Member Give Gift Back to Top Post by Leslie Schrader on Jan 26, 2013 13:03:10 GMT -5 Is that the one your cardiologist did? The one this doc is supposed to do is look into my eyes. I guess one test takes about an hour, another takes an hour and I think there is even a third one.
	~~ Decompressed 11/30/11~~ Also diagnosed with sleep apnea.

Donna Junior Zipper Posts: 69	POTS site Jan 26, 2013 14:51:05 GMT -5 Quote Select Post Deselect Post Link to Post Member Give Gift Back to Top Post by Donna on Jan 26, 2013 14:51:05 GMT -5 Yes it is. Is this doc looking for palpidimia?
	Decompressed 03/08/12 CSF leak repair 04/12 Shunt surgery 11/20/12 POTS Sleep Apnea

Jill Admin Zipperhead Posts: 164	POTS site Jan 26, 2013 15:30:40 GMT -5 Quote Select Post Deselect Post Link to Post Member Give Gift Back to Top Post by Jill on Jan 26, 2013 15:30:40 GMT -5 I will learn so much here....
	Decompressed 6/1/12

Leslie Schrader Admin Zipperhead Posts: 161	POTS site Jan 26, 2013 16:09:55 GMT -5 Quote Select Post Deselect Post Link to Post Member Give Gift Back to Top Post by Leslie Schrader on Jan 26, 2013 16:09:55 GMT -5 I have no idea what the doc is looking for aside from the cause of dizziness (that like I said, I don't experience as much anymore)
	~~ Decompressed 11/30/11~~ Also diagnosed with sleep apnea.

Donna
Junior Zipper

Posts: 69

POTS site Jan 26, 2013 20:18:32 GMT -5

Quote

Post by Donna on Jan 26, 2013 20:18:32 GMT -5

A neuro-ophthalmologist usually checks your eyes for pressure and swelling and paplidema. That is one of the things I got checked for before my shunt. I don't know what they can do for dizziness. The tilt table test and blood test and heart echos is usually done for the checking of POTS. I am stumped now what they are gonna test you for.

Decompressed 03/08/12
CSF leak repair 04/12
Shunt surgery 11/20/12
POTS
Sleep Apnea

Teresa: Some days are better than others. I felt great the first couple weeks after surgery and then felt like I was taking steps backwards. Jan 28, 2013 17:38:08 GMT -5

Teresa: I'm still pushing through it for the most part. Yesterday I spent the day running around and then went on a date with my boyfriend. Probably another reason I feel so rotten today, but it was worth it. Jan 28, 2013 17:42:56 GMT -5

Jill: I think you have to push yourself a bit...to see where it goes. And if it was worth it, you probably didn't do too much. You rested today.

Jan 28, 2013 17:44:48 GMT -5