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Officially Diagnosed After Ttt


Rafiki
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I had the tilt table test on Thursday and although had normal woozy symptoms did not pass out until they gave me a nitro tablet, then out in a few seconds. I have now been diagnosed with Neuromediated Syncope and POTS as well as Orthostatic Hypotension. My supine BP is usually 100-110/70, unless I am at the doctors and this proved no exception. It started out at 140/90! After the test while I was recovering in the room it settled back to 100/65. The TTT was not bad, I was not sure what to expect after reading other's experiences.

I am glad to have an official diagnosis and a beginning treatment plan. (Midridine, compression hose, fluid and salt). I just pray this takes care of the problem and I can return to Kenya to my husband and son! I also have to receive medical clearance from our mission board to return and they want to make sure that there is not a treatable underlying cause. I also had an echo, chest x-ray, EKG, stress test, and arteriogram this week and my heart is fine. A few weeks ago an echo showed pericardial effusion, but yesterday that did not show up on echo.

I'm feeling a bit more hopeful, though I have to admit I would rather have something a little easier to treat and fix! While hospitalized a few weeks ago and with way too much time on my hands I decided to "pick" my own diagnosis. I was on a neurological website though and I soon discovered I did not want most of those conditions! Most of them began "a rare and fatal condition..." I was laughing so hard while doing this (I guess you had to be there). However I did find one condition that was intriguing. It is called Exploding Head Syndrome! Now that sounds absolutely horrible, but it merely means that you hear exploding noises which wake you up and it usually goes away on its own. I'm sure it would be bothersome, but much better than POTS!

Sorry for rambling! Hope everyone has a good holiday weekend!

Debbie

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Debbie,

I'm glad that you found the right place and now have an official diagnosis. Now, at least, you're on the right track with a good treatment protocol and can hopefully get home soon! I'm sure you miss your family a lot. Good luck and always remember this site when you need some support or have questions.

Take good care,

Jana

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Good to have things pinned down. Great to have the solid cardio workup. It seems like you made it through this diagnosis rather efficiently, especially compared to many. Was it Autonomic Center in Birmingham, AL that got most of this done so fast?

It was not long ago that you were stuck with a frustrating cardio who didn't give much credence to autonomic issues at all! So glad that turned around and you've got results. Much credit to your persistence. Congrats to that... very tough to do when one is run down by an illness. I bet you are on the road to a solid recovery. Hope so.

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A lot did happen fast this week after the frustrating appointment on Monday. In fact when I left the cardiologist office I went in person to the Autonomic Disorder Clinic (in same building) and referred myself for an appt. There was a month wait, but after I told them my situation they promised to try and get me in quicker and I was able to get in on Friday. Meanwhile I was chatting to a friend in Kenya who used to be a nurse in Birmingham and she called her physician/friend and told him my story and he called me and told me to come right in! (that was Tuesday afternoon). He has been amazing. Has done lots of lab and set me up for a TTT at hospital (i still thought I had a month wait at other place). When they said it would be a week the PCP called them and had me in the very next day. I kept the appointment at Autonomic Disorder Clinic and they confirmed the diagnosis and treatment and gave me some additional info. I am glad it has gone so quick, the PCP is still looking at possible underlying causes but I think the possible tests are drawing to a close. Now I am just hoping for the midodrine to work. Day 3 and so far I can't tell any effect, except I get freezing cold. But heart rate still increases and BP is the same sitting and lying down. (Can't get a reading standing up).

Thanks for the welcome here. It is nice to know there is a place where people understand and can help answer questions.

Debbie

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Are you trying "blood volume increasing" treatments in addition to the Midodrine? ...like fludrocortisone or at least lots of extra salt in diet? Those are appropriate for POTS with Orthostatic Hypotension... or even just OH by itself. They can take longer to notice benefit from.

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