Daytime sleep paralysis

I have an EDS diagnosis and am taking Nuvgil. This helps me concentrate but does nothing for the other symptoms I am having. I told my neurologist about the following symptoms and he FREAKED OUT, advised me to go to emergency + local GP, and says it is not cataplexy/sleep paralysis. I am now looking for a neurologist that would be a better fit. Here are my symptoms:

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All of the following occur together:

• It usually starts with sudden feeling going down through torso like adrenaline with a general feeling of weakness, almost nausea. NO sweaty palms, racing heartbeat, etc.

• A hunger pang or thirst.

• A need to swallow once or twice.

• Voice goes low and gravelly, and can stay that way for hours, or clear up within a few minutes.

• Vision can blur.

LABORED BREATHING (this is what freaked out the Dr.):

• Feel weak and winded (has happened for a long time).

• Breathing is shallow, in a limited range (this is new).

• It’s difficult to breathe in. It’s hard to lift to get a breath (this is new).

• It feels like I don’t have enough breathing muscles that I can control. The effort is tiring. Like a fish gasping.

• Full deep breaths take concerted effort.

• Autonomic breathing is working. Blood O2 is actually OK! 97.

• This has been getting worse. I had a recent day where it got to the point where I couldn't do anything else, except sit and try to breathe.

• An occasional breath can feel like contaminated air or “smogged” lungs. That can be the first indication that weakness is coming.

Other symptoms:

• Walking is slowed, it’s like walking through water.

• Some yawning.

• Difficulty concentrating / speaking during weakness feeling. It can interrupt a sentence.

• Weakness in legs, can stumble briefly.

When:

• The above can last for hours, with heightened weakness events at random intervals every 10 minutes or so.

• It can happen during activity like walking, or when resting.

• More likely to happen after walking. Or when I start to relax, or am waiting for something. More likely to happen when emotions are high.

• I have zero control of when any of this occurs. Trying to relax, meditate has no effect (may make it happen more often).

Trigger: Eating something (first full swallow, or drink of hot tea) can trigger a very intense reaction.

• I feel like my head is being pulled downward.

• It is hard to open my eyes.

• I struggle rigidly to stay upright, to unbend and sit up straight and open my eyes.

• One of these lasted for up to 5 minutes. After that I started feeling better, could get up, and voice went back to normal.

Sometimes I have noticed my overall energy level while walking can get linked to phase of breathing. I haven't noticed any difficulty breathing when this is happening (not even noticing breathing in any way). This happens maybe once a month, usually when walking after a near-nap. I'm walking along normally, then the sudden slowdown feels like being held back (while breathing in), speedup feels like an increasing spring in my step (while breathing out). I did not connect this to breathing the first 5 or so times it happened. It just felt like I was being suddenly impeded while walking, like walking into a soft wall. Once I figured out what was happening, I could experiment with it by slowing my breathing out to make the speedup last longer, or breathing in early to make the slowdown happen. I tried to fake myself out by saying "breathing in is faster...zoom!", but that had no effect. My Dr. has been SOOO helpful by telling me "that's not cataplexy". Fine. Then what is it?

Episode of getting stuck: After lying down for some time not feeling well (see above). Got up and shuffled to stove to get a bowl of soup. Got bowl to table, set it down, put hands down on it to steady myself (feeling weak), and could not move. I could not initiate movement. It lasted about a minute. I felt bad -- helpless, because I couldn't move.

This same difficulty starting movement happens when being awakened from near-napping (I don’t have to be all the way out, intermittent dreaming, can hear what is going on around me). Difficulty moving can last a short time under 10 seconds (normal sleep paralysis).

Blood oxygen seems OK 97 (I got a pulse oximeter). Heart rate 51-58 BP 145 / 88

I don't have: Catiplexy as a result of being startled. Hallucinations.

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There are things there that don't match standard Narcolepsy symptoms.

• The breathing difficulty is a recognized sleep paralysis symptom (not by my Dr.), but this happens to me during the day, not when waking up. I have found no references to sleep paralysis during the day.

• I have found nothing about energy level locked to the phase of breathing.

• The episodes after swallowing something sound like cataplexy to me, but I haven't heard of swallowing as a trigger.

• I don't spontaneously fall asleep. Ever. I often feel exhausted and attempt to rest sitting and leaning back wherever I am. I start to dream, but rarely go all the way out. I can still hear. I usually have difficulty moving for a few seconds when brought out of that kind of near-nap.

I have attempted a MSLT, but that was a fail for several reasons. A very close relative has something similar, and Xyrem works short term, but has bad longer term side effects. It's likely that I would have the same results.

I'm left with:

What the heck is it?

What kind of neurologist could help? Doctors throw up their hands when any part is outside their narrow subspecialty. I'm looking at:

• Movement neurologist

• Neuromuscular neurologist

Any ideas?