Periods of ShutDown Fatigue

[taniaaust1]

Is anyone with this symptom taking evening primrose oil or consuming a lot of polyunsaturated fats? How about being on methylation or antioxidant protocols?

I wasnt taking anything at all alex when I had that symptom. The symptom was too extreme for me to even remember to take anything and I wasnt even waking up long enough to thinking about taking pills and stuff (all my awake time was spent.. eatting, drinking and going to toilet (which i didnt often a all due to being dehydreated due to sleeping so much.. I was only going once a day or less. Its amazing my kidneys didnt stop working). I dont even think I was even washing myself during that time...not awake enough.

I equate this symptom with being almost completely comatose. U hardly exist with it. I actually dont think this is a common ME/CFS symptom.. its different to just crashing and being bedridden with exhaustion ..even bedridden exhausted ME/CFS patients usually wake up at times. This symptom is life threatening... you could sleep throu world war three and the town being bombed and wouldnt know. (Others may not be able to wake u up at times when one has this.. you can be completely unresponsive to even being shaken). It's like narcolespy too at the short periods one is awake.

 

[alex3619]

I get this symptom sometimes myself tania, I am trying to understand the chemistry. The body is capable of doing this by itself, if I am right about the mechanism, but only so long as it has a steady supply of omega-6 fats which have to be in the diet. Secondary mechanisms including cytokines I am less sure about but investigating. One of the things that I am looking into is elevated alkaline phosphatase, which I only just recently realized acts like a phosphodiesterase and so might induce sleep. The trigger for this is probably blood LPS (possibly via TNFalpha), though I am still investigating this.

So under this model, which is only hypothetical at this point, serum LPS should correlated with serum Alk Phos, and serum Alk Phos will have a weak correlation with sleepiness (as there are other factors as well I am examining). However if one runs out of omega-6 fat substrate, or the supporting cytokines or enzymes drop, then the body should switch from severe hypersomnia to insomnia, even a complete incapacity to sleep.

That feeling of passing out from sleep no matter what you are doing is very disturbing. Typically I catch myself, I start falling then awake in alarm before I hit anything. I do not recall a time when I actually fell asleep before I lay down, but I am typically so brain dead by this point there is no reason to stay awake.

 

[taniaaust1]

I wonder if the comatose like state is similar to what those girls got after having the shot against that thing? (word loss) which causes cervical cancer. The media were calling their illness "sleeping sickness".

 

[lansbergen]

Do you know in the past animals were sometimes put in a comateus state to heal when nothing else worked?

 

[alex3619]

Sleep therapy was tried for ME at Charing Cross in the UK. It failed.

 

[lansbergen]

Sleep therapy was tried for ME at Charing Cross in the UK. It failed.

Did they put the patients in a coma?

 

[alex3619]

Did they put the patients in a coma?

Yes, I think so, this was decades ago I think. It was medicated sleep for some considerable period, I no longer recall the details.

 

[heapsreal]

Yes, I think so, this was decades ago I think. It was medicated sleep for some considerable period, I no longer recall the details.

It would be interesting to see the sleep quality of these patients who would have been anaethitised. Im guessing that it wouldnt have given them stage for deep sleep etc. Also the problem would have been that they would have gone back to not being able to sleep if without medications. Maybe M. Jacksons doctor would know alot about this??

My opinion is that poor sleep is a secondary issue of cfs/me, more sleep isnt curative but lack of sleep makes us feel alot worse. Healthy people who get sleep deprived end up with elevated inflammatory chemicals and hormone dysfunction, aches and pains etc Throw in a few chronic infections and over time everything deteriorates. I think thats why one of the first steps docs take is to try to help sleep.

cheers!!

 

[lansbergen]

During flare ups I could not sleep

When I reached a certain recovery level I slept a lot. My brain needed that to clean the cupboards and put things in the right place. I think blocked connections were restored.

 

[August59]

I've feel asleep standing up in a WalMart store for more than 15 - 20 minutes and woke up only to go find the furniture department to find a chair and sleep some more.

 

[taniaaust1]

During flare ups I could not sleep

When I reached a certain recovery level I slept a lot. My brain needed that to clean the cupboards and put things in the right place. I think blocked connections were restored.

Im the opposite to you. I sleep heaps (hypersomnia) if Im crashing or very bad and my sleep improves as I do.

 

[taniaaust1]

I've feel asleep standing up in a WalMart store for more than 15 - 20 minutes and woke up only to go find the furniture department to find a chair and sleep some more.

I once had a sleep for over half an hour in IKEA on their beds. (I made it half way around the store and just couldnt go no further and had to sleep). Their manager ended up waking me up and going to get a scooter for me. After that, I just use their scooters if I go there as I too easily go over my limit in that place.