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Haven't slept in a week - progressive insomnia w/ dysautonomia

insomnia dysautonomia

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#31 deeptrance

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Posted 26 August 2016 - 11:22 PM

It's strange that you'd have insomnia while having high dopamine and low norepinephrine. That combination of markers could cause drowsiness in some cases, but obviously not in yours. My guess is that's a symptom rather than a cause of what you're dealing with.. I hope you're still with us; you haven't posted in over 3 weeks. Hopefully that means you've been too busy sleeping and enjoying your waking hours. 

 

I experienced a 2-week period of sleep deprivation a year ago, while I was travelling. I was using 4-FA and 5-APB every day, and they were still active at night to the point where I'd spend the entire night in the back of my car blissfully resting, but never falling asleep. I thoroughly enjoyed it, as I spent every night parked on remote dirt roads in the vast open spaces of the western US, but after 2 weeks I suddenly went completely incoherent and my brain simply shut down. I was at my sister's house, washing dishes, and I'd been in a great mood that day, but in about 2 seconds I experienced the absolute dissolution of reality. My brain couldn't organize sensory information, and I had to lie down on the kitchen floor, much to the distress of my hosts. When my sister was able to get me to respond, I just burst into tears because I was so confused that I couldn't communicate with her.

 

For the next 3 days, I went through a bizarre Alice In Wonderland journey of psychosis and sleep that was saturated with extreme dreams. I had never gotten out of bed in my sleep in 58 years of living until one of those nights, when I got up in the dark and started piling every physical object I could find into a corner of the room in a chaotic jumble, and my sister woke me up asking "What are you doing?" I thought I had just flown a UPS plane from San Francisco to a town in Pennsylvania, and I was moving everything out of the way so that there'd be room for the plane to take off again. I was straight-up nuts. Of course the drugs I had been consuming during the preceding weeks surely contributed to the bizarreness of my experience, and I hope you haven't gone bat-shit crazy yourself after what you've been through.

 

I honestly have no helpful suggestions, other than to do everything in your power to get medical attention. If you have to lie about symptoms then do it. I'm shocked that you'd be dismissed so readily by your emergency rooms. Supposedly you have a good health care system, but that's insane that they'd fail to treat you. If you're still needing medical attention, then look up the symptoms of extreme sleep deprivation and say that you have the worst of whatever you find. There's no way you can have anything like a normal, enjoyable life in your situation. Ultimately it will kill you, and that's what ERs are supposed to prevent. See if you can fake psychosis. That could even be fun, although they might strap you to a gurney and inject you with something worse than hell, so maybe don't do that. Good luck, please post again to let us know how you're doing.



#32 Omega 3 Snake Oil

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Posted 27 August 2016 - 02:21 AM

Thanks everyone. I'm still not able to reach deep sleep, only very light, fractured, (I'm guessing) stage one-two sleep. The dysautonomia is still here but not quite as bad, other than the orthostatic hypotension (my BP was as low as 65/55 today).

I asked my biofeedback practicioner to run a check for prions, and her machine showed elevated numbers. I've been seeing her for Lyme for a couple of months. So I'm convinced I've got a prion disease like sporadic fatal insomnia. Seeing a neurologist soon, and will have results of my sleep study in two weeks.



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#33 Groundhog Day

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Posted 28 August 2016 - 03:36 AM

I have been through something very similar, complete sleeplessness with dysautonmia. I've done more reading on FFI than any person should....

 

I also still go through this at times and have myclonus, jerking awake continually every time I try to drift off. I also suffer from the strange stage 1, asleep/not asleep, lucid dreaming thing. Going through that now quite a bit.

 

There are some things I strongly recommend you try right now--- for the muscle jerking, get MCT oil. This has saved my ass many times. Get up to 2TBS as fast as you can. The research is there for MCT oil and greatly helping epilepsy... that's where I got the idea. It absolutely reduces my jerking at night.

 

The next big thing you want to do is come up with an anxiety stack. I had legit hyperhidrosis when these episodes first started happening, and I barely sweat ever, and my head was dripping at night- you'll note this is also a symptom of FFI. This subsided after I got a grip on things. I used Bacopa, NAG, Curcumin, b-vitamins, and probably a few other things to address anxiety which I didn't feel was the source of my problems, but could have been in the background. And I was right. It was making everything worse, much worse.

 

Get some L. Rhamnosus. I haven't completely figured this one out, but this probiotic strain is well studied- 800+ studies showing all kinds of potential mechanisms, but get this, if I don't take a certain amount of this each day, I don't sleep at all.

 

I'm not blowing smoke, I've literally gone through the same thing for the last 18 months.... but without the Lyme.

 

I have a lot more that I can share later. Check my post history for my Insomnia thread--- mine all started after an episode with the flu.

 

 



#34 Omega 3 Snake Oil

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Posted 28 August 2016 - 05:03 PM

I have been through something very similar, complete sleeplessness with dysautonmia. I've done more reading on FFI than any person should....

 

I also still go through this at times and have myclonus, jerking awake continually every time I try to drift off. I also suffer from the strange stage 1, asleep/not asleep, lucid dreaming thing. Going through that now quite a bit.

 

There are some things I strongly recommend you try right now--- for the muscle jerking, get MCT oil. This has saved my ass many times. Get up to 2TBS as fast as you can. The research is there for MCT oil and greatly helping epilepsy... that's where I got the idea. It absolutely reduces my jerking at night.

 

The next big thing you want to do is come up with an anxiety stack. I had legit hyperhidrosis when these episodes first started happening, and I barely sweat ever, and my head was dripping at night- you'll note this is also a symptom of FFI. This subsided after I got a grip on things. I used Bacopa, NAG, Curcumin, b-vitamins, and probably a few other things to address anxiety which I didn't feel was the source of my problems, but could have been in the background. And I was right. It was making everything worse, much worse.

 

Get some L. Rhamnosus. I haven't completely figured this one out, but this probiotic strain is well studied- 800+ studies showing all kinds of potential mechanisms, but get this, if I don't take a certain amount of this each day, I don't sleep at all.

 

I'm not blowing smoke, I've literally gone through the same thing for the last 18 months.... but without the Lyme.

 

I have a lot more that I can share later. Check my post history for my Insomnia thread--- mine all started after an episode with the flu.

 

This is awesome, thanks kindly. Is there a brand of L. Rhamnosus you'd recommend? I take this one which seems to have some... https://www.progress...ducts/hcp150/. Do you recommend taking it at night, I usually take it in the morning.

Also, I use a lot of coconut oil, but not MCT. Is coconut oil a decent substitute, if I take a lot of it?



#35 Omega 3 Snake Oil

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Posted 28 August 2016 - 05:41 PM

Also, wondering about trying uridine? Any thoughts on this?.... I had elevated liver enzymes for a few months, due to antibiotics I was on for Lyme. They've since come down but am worried about liver function. Also worried about because of some of the reactions I've had to noots lately, esp. NSI-189.

https://selfhacked.c.../06/23/uridine/



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#36 Groundhog Day

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Posted 28 August 2016 - 05:48 PM

That looks pretty good, although I know their are several specific strains of Rhamnosus.

 

I use the Swanson (5 billion units each) product: http://www.swansonvi...s-60-veg-drcaps

 

1-2 will not work, I need 3 after a lot of testing and taking them in the evening seems to work better. I've tried several brands and different formulations, and I think the rhamnosus by itself or a yogurt 1.5 cups work best. I tried a drug store version that was supposed to be 20 billion cfu and it didnt work at all.

 

No, the coconut oil is great, but you need the MCT oil.







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