What does this sound like to you.

[gjensen]

I have been bouncing among specialist for some time. It has become obvious that I have some form of autonomic dysfunction.  This is new to me, so be patient. I might spell something wrong, or get a fact wrong.
Eight months ago I was complaining of difficulty swallowing. My palate does not close off my nasal cavity. My ears were ringing and I had dizzy spells. I also had breathing attacks.
Eventually I identified some triggers, and realized I had some posture/blood pressure issues. Sitting (particularly leaning forward) was a problem. Then I could not lay on my sides. Now I cannot remain on my feet. I have drastic heart rate spikes upon standing.
I have become overly sensitive to sound stimulus. Easily startled. In a fog. Weird total body sensations. My digestive system has went crazy, or not working at all. I have lost a lot of weight off of an already thin frame.
Now when I drift off to sleep, I quit breathing. I had a sleep study recently, but I will have to ask for another one. I did not have these episodes then. This problem is new, but is here to stay now. haven't really slept in a few days.
I get hot or cold easily. No sexual dysfunction. Yet. All of tis has progressed to where I am in eight months. Most of this is new or much more dramatic than what it has been. I wonder if I am not in trouble, considering all of the issues developed so quickly.
I have had some heart related issues recently, but was not caught on an ekg an hour later. I have had and failed a tilt table, though they explain that the results were not typical. Holter monitor showed heart rate spikes. Feels like I need the monitor more now than I did then.
Anyways. Please share your thoughts. Is this run of the mill POTS? The new very pronounced central sleep apnea has me concerned the most now.
What is next?

I am 40 and a father of three. Married.

[gjensen]

Thank You. I hope that you are doing better.

I am going to Duke now. though I am impressed with the level of care, I am concerned about the details that involve this subspecialty. They have started digging into causes, but no autonomic testing. No mention of sympom management.

I want o be able to get out of bed.

What amazes me is the extreme blood pressure/hr changes from just riding down a road that is bumpy. It is like riding a roller coaster.

[Heiferly]

Yes, it sounds like your tilt may be incorrectly interpreted. Make sure you ask for "copies of the original EKG tracing and all timestamped blood pressure, heart rate, and symptom data NOT JUST THE FINAL REPORT" when requesting the records from your TTT to send to the new docs you are consulting. Make sure you set eyes on them yourself so you know you're getting the whole thing!! There should be a big, long strip of EKG included.

The other new symptoms you're describing further bolster my opinion that you need to get in with a good neuromuscular specialist. Please update as you're able. I just got out of the hospital and I'm only at partial power, so I'll follow up another time with info on tests.

[gjensen]

Figured that I would share the "non results" from the tilt table test.

Toward the end of the test (with nitro glycerin), they noted a heart rate +160, and the blood pressure had fallen to 72/50. They do not mention where I was @ rest, or upon standing and before the nitro. Knowing me, I started at 110/70 and 65bpms, increasing to 110bpm and 135/90, then falling with the nitro to what they did mention.

The "Impression" was  . . . . "Negative tilt table test without evidence of neurally mediated syncope. However, exaggerated heart rate and blood pressure responses were noted of uncertain clinical significance."

On the follow up, the neurologist told me that this was not a neurological issue.  

[gjensen]

And . . . any information on any test will be helpful. There is a lot to swallow in such a short period of time.

[gjensen]

Thank you Heiferly. I was hoping that you would reply.

This is still progressing fast. Do these things typically progress this fast?

Now I am having mini seizures. I might have been, but they are more clear now.
Now when I have my sleep episodes, and quit breathing, I start chattering.
Today, every time I swallow, I chatter.
I am starting to get these little muscle tremors, and little (sometimes not so little) leg jerks.

I have an appointment with Duke, and UNC this week. They would see me the soonest.

[Heiferly]

The symptoms you describe are very concerning. Have you been worked up by an EP (electrophysiologist) cardiologist and/or neuromuscular specialist at a major teaching hospital. The interpretation of your tilt table test is raising red flags for me. You may need a second opinion on its interpretation from a specialty autonomic clinic like the one at Cleveland clinic (OH) or Mayo clinic (Rochester, MN). TTTs are pretty frequently misinterpreted.

I think it's possible that you have some form of dysautonomia other than POTS, as I do, which is another reason you want to get to the best hospital your insurance/budget allows. I can give you a list of tests to inquire about, but frankly, for 99% of them you'd be wasting your breath asking anyone but CC, Mayo, or Vanderbilt about them.

Let me know anything you want to know more about: testing, types of dysautonomia, etc. There's so much information it can be overwhelming. I hope I can be of help to you!

-Heiferly.