Dysautonomia, nerve damage, narcolepsy and REM sleep disorder (RBD/RSWA)

[Random-Symptom Man]

So, I’ve just been getting used to a diagnosis. I now have 2 new diagnoses on top of Dysautonomia.

1) Narcolepsy (I can fall asleep quickly and get into REM sleep quickly) .

2) REM Sleep Without Atonia (I move my arms and legs during REM sleep and normal sleep when I shouldn’t).

It looks like I’ve had some symptoms of Dysautonomia and Narcolepsy my whole life, but everything has jumped to a new level. It looks like I’ve had low-level neuropathy for decades, but it has increased in recent years. I have no idea if one symptom caused the others or if there is something else waiting to be found.

I don’t know what to think about these new diagnoses. I don’t see my specialists for 2 more months. If anyone has experience with best practices for these co-morbidities, I would really appreciate any insight you can provide. 

thanks

[Jwarrior77]

Hey @Random-Symptom Man sorry to hear about these new diagnoses but I do know of some things that can at least help with one of them.

There are a couple things that can help peripheral neuropathy as the peripheral nervous system is much easier to treat than the CNS. There have been many studies that show that Vitamin B1 can help treat or even reverse nerve damage and is one of the most important B vitamins for this. The other ones that could help with this would be B6 and B12. They all help restore and protect the myelin sheath around the nerve.

Benfotiamine is a fat soluble version of B1 which is much easier to absorb than regular thiamine. It's better to take it with something high in healthy fat as that's what it needs for it to be absorbed well. It's been well known to help diabetics who have peripheral nueropathy. It is recommended to get the B6 and B12 in their methylated forms because it's also easier absorbed.

Also a cod liver oil supplement high in DHA and EPA is also great for nerve and brain function as well.  Taking the benfotiamine with it would be great as that is how it can be absorbed. 

As with the Narcolepsy and sleep issues I'm not that sure on what could help unfortunately. Do you have full blown Narcolepsy in which you just fall asleep midday or is falling asleep at night just really easy to do?

I wish you all the best!

[Random-Symptom Man]

@Jwarrior77 - thanks for the tips. I’ll look into those suggestions.

to answer your question, the narcolepsy is in between. I do fall asleep easily at night. I also get these instances where I ”hit an energy wall” or “run out of energy” or “crash”. It doesn’t happen every day, but many. I used to think it might be sugar related, but ruled that out. Then I just thought it was a natural part of fatigue. When I got my POTS diagnosis, I thought it confirmed my mistaken belief it was fatigue. I have fatigue too, but apparently this is different. The best way I can describe it is like a 100 pound blanket of tiredness is thrown over my body. It is hard to do anything but sleep.

I can fight the urge to sleep, but it takes willpower, pinching myself, flexing muscles and stuff like that.  It sets in over minutes, not seconds. its not like the movies. I don’t worry about driving because I can focus and pull over. After struggling for a bit to stay awake, I can do things that will wake me back up.

The late afternoon is the most common time for it to set in. But it can happen at any time. I fall asleep in action movies. I fall asleep at dinner time. I try to maintain good sleep hygiene, but it’s difficult. As I said before, I thought it was just fatigue. Apparently, it is both fatigue and narcoleptic sleepiness.