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What has helped more with your sleep?

rosie26

Senior Member
Messages
2,446
Location
NZ
I have noticed just lately when I wake up in the morning I haven't been counting how many hours I slept !
I have been getting some good sleeps since June this year, I think I have only had about 4 nights where I was awake all night.

I am so over insomnia and all the hell that goes with it. I don't know how many times I have watched the clock turn 2.22am 3.33am 4.44am in the last 12 years - too many to count. I hope this good patch I am going through at the moment continues.

@MeSci
I have an ME friend who does the same as you, going to bed in her clothes. I can't wear anything much to bed as my temp regulation is so bad, I wake in the night boiling hot and have to throw everything off, so I quickly learnt that it is pointless wearing a pyjama top (sorry if this is too much info) but I really do wake up boiling hot to the point of feeling sick with the heat. Wonder if others have that temp problem too with overheating. I never seem to wake in the night cold, its always waking up lots of horrible trapped in heat.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I have noticed just lately when I wake up in the morning I haven't been counting how many hours I slept !
I have been getting some good sleeps since June this year, I think I have only had about 4 nights where I was awake all night.

I am so over insomnia and all the hell that goes with it. I don't know how many times I have watched the clock turn 2.22am 3.33am 4.44am in the last 12 years - too many to count. I hope this good patch I am going through at the moment continues.

@MeSci
I have an ME friend who does the same as you, going to bed in her clothes. I can't wear anything much to bed as my temp regulation is so bad, I wake in the night boiling hot and have to throw everything off, so I quickly learnt that it is pointless wearing a pyjama top (sorry if this is too much info) but I really do wake up boiling hot to the point of feeling sick with the heat. Wonder if others have that temp problem too with overheating. I never seem to wake in the night cold, its always waking up lots of horrible trapped in heat.

I only wear lots of dayclothes to bed in cold weather, and my house gets cold due to poor insulation and not enough money to have enough heating on. Maybe it's warmer where you are?

I do get extreme hot flushes at other times, and some hot flushes even in winter, but not so extreme that I have to take everything off in winter!

Great that you're getting more sleep.
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
In fact MeSci, just getting to sleep earlier makes a BIG difference. Yesterday I was with the family of my father for 7 hours! The birthday of my grandma, it was tiring and stressful but I could bare it. In the past when I was getting to sleep from 2 to 8 AM I would ALWAYS decline and loathe any kind of activity especially those regarding going outside and interacting with people.

I´ve been doing the leaky gut diet and now some supplements for a long time now. I think my sleep problems have more to do with hormones, free testosterone and estrogen, adrenals and thyroid. Because of tests and symptoms but especially tests!
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
In fact MeSci, just getting to sleep earlier makes a BIG difference. Yesterday I was with the family of my father for 7 hours! The birthday of my grandma, it was tiring and stressful but I could bare it. In the past when I was getting to sleep from 2 to 8 AM I would ALWAYS decline and loathe any kind of activity especially those regarding going outside and interacting with people.

I´ve been doing the leaky gut diet and now some supplements for a long time now. I think my sleep problems have more to do with hormones, free testosterone and estrogen, adrenals and thyroid. Because of tests and symptoms but especially tests!

That's great about your family get-together. Make sure you rest now for a couple of days.

How long have you been on leaky-gut diet?
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
Probably a year, or more, but my diet has varied during that time, sometimes hell broke loose I was eating organic mermelade with whole spelt bread or a lot of peanuts everyday for weeks. Nowadays I avoid all grains except rice and only eat nuts once every one or two weeks.

I eat lots of meat, fruit, fish, sea products and vegetables, potatoes and sweet potatoes. It is like an adapted paleo diet, not optimal but quite healthy. I don´t know much it differs from yours though.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Probably a year, or more, but my diet has varied during that time, sometimes hell broke loose I was eating organic mermelade with whole spelt bread or a lot of peanuts everyday for weeks. Nowadays I avoid all grains except rice and only eat nuts once every one or two weeks.

I eat lots of meat, fruit, fish, sea products and vegetables, potatoes and sweet potatoes. It is like an adapted paleo diet, not optimal but quite healthy. I don´t know much it differs from yours though.

I'm a vegan so very atypical! I don't avoid pulses, but try not to overdo them. I avoid sugary things except a little fruit, and occasionally some veg that is quite sweet. I use xylitol in tea and coffee, and occasionally have xylitol-sweetened chocolate. I don't completely avoid nightshades but don't have much. I have 2 slices of gluten-free bread most days, and a couple of corn crackers/corncakes. Some potato, and no limit on coconut oil or salt! I eat quite a lot of nuts and also seeds (e.g. in a nut roast, and tahini added to various things).
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
Yeah I know methylation can be huge with sleep. However I think I would be one of these persons that react negatively to SAMe. I will leave methylation for later, first I will deal with hormones and gut.
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
SO I tried the melatonin alone the other night and discovered is the thing that works for sleep onset insomnia. I also took NAC later when I woke up at the 5 hours mark. Anyway this is good news because I can cut back on supplements. Have crazy dreams on this stuff! Me likes.
 

WoolPippi

Senior Member
Messages
556
Location
Netherlands
hi Beyond, do you wake up with a dry/sore throat after your 5 hours?

(I do. I'm looking into it as a symptom of CNS-neurotransmitters and sleepstages.)
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
Will need to pay attention. I seem to wake up with some thirst. I had neurotransmitters tested and the most defficient was GABA.
 

WoolPippi

Senior Member
Messages
556
Location
Netherlands
I found a handfull of other people who also sleep 5 hours and then wake up and have insomnia for two hours.
We all share a double mutation on the MAO A gene: TT for MAO A R297R, rs6323. a clue?

MAO A enzyme:
This enzyme breaks down the excitatory neurotransmitters (adrenaline, noradrenaline, dopamine and serotonine).
With the mutation these neurotransmitters bounce around the head longer than intended, making us fast thinkers, quicksilvery, 'caffeïnated' and keeping the sympathetic nervous system activated.

oposit ADHD:
Especially noradrenaline and dopamine are highly needed in the prefrontal lobe for attention and thinking. It's the stuff ADHD people have not enough of and Ritalin provides to them, giving them more focus and concentration.
People with the MAO A mutation might have oposit-ADHD and thinkThinkTHINK all the time. (do you? I have a feeling you do. Also with the cursing and frustration. Sounds like the sympathetic nervous system is ON with you)

With all this pinball machine action in the head, the para-sympathetic nervous system doesn't get the time of day. Or night (it governs your sleep). No Rest&Digest. No zen in the brain.

Because breakdown of the neurotransmitters is way too slow all kinds of processes are out of sync throughout your day/night, making you very vulnerable to small impulses and giving you long after effects that build up with others.

DISCLAIMER:
this is just a thought, with no good statistical base and certainly no claim that many MAO A-homozygotes relate to this. It just ticks a lot of the boxes I've had from birth: constant Fight or Flight, quicksilver mind, that sleep pattern, that mutation, ridiculously sensitive. And it explains certain accomplishments in my ME healing process.

ON THE FORUMS:
and because I'm always late to the party: there's already lots of info on the forums, including a poll, for this very enzyme. Including from you. But I'm focusing on the link to the nervous system and sleep stages. "Mental problems", smental problems. not of interest.
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
Hehe yeah nail in the head! I discovered a year or so ago that I am the Sympathetic Guy, when I was trying Nutritional Balancing for AF. It actually would explain in part why I got ill. I never was the relaxed type and for years social or responsability situations made me extremely stressed (although it wasn´t exteriorized much).

Nowadays my adrenals are so burnt out that the other day when a beggar gave me his mobile phone to call the police because a guy was about to steal a bike, I had horrible itching all over and started to sweat. I managed to control myself but as soon as I got home I removed most of my clothes. No longer tolerate stress at all.

So how do we treat MAO A? In fact I will tell you, I am also homozigous for MAO B. Double whammy! The treatment of Yasko for MAO sucks, at least the last time I checked it. Hey I investigated a bit and curcumin slowes down both monoamine oxidases, but has more effect on MAO A.

I started a thread on these two genes and also a few more than seems to be prevalent in the CFS population. Here is a quote:
In this work, we used the proposed feature selection approaches to assess CFS-susceptible individuals and found a panel of genetic markers, including COMT, CRHR2, NR3C1, POMC, and TPH2, which were more significant than the others in CFS. Smith and colleagues reported that subjects with CFS were distinguished by MAOA, MAOB, NR3C1, POMC, and TPH2 genes using the traditional allelic tests and haplotype analyses [8]. Moreover, Geortzel and colleagues showed that the COMT, NR3C1, and TPH2 genes were associated with CFS using SVM without feature selection

http://forums.phoenixrising.me/inde...ine-effector-and-receptor-genes-in-cfs.25927/
 
Last edited:

maddietod

Senior Member
Messages
2,859
I have this mutation, and I've had insomnia for >10 years. But I never sleep 5 hours at a stretch. I wake every hour or two and usually go right back to sleep.
 

WoolPippi

Senior Member
Messages
556
Location
Netherlands
So how do we treat MAO A?
This I want to kow! My experience thus far is:
  1. no magic pill or supplement, sadly
  2. anti-histamine and other second-messenger blockers might reduce effectiveness of the neurotransmitters in the cells. Cannabis and aneastetics come to mind... :s
  3. prevent the sympathetic system from firing up in the first place. Or at least from going bananas. That means easy living, mental hygiene, training myself to be easy gong and not getting anjoyed, slow breathing, no more perfectionism, no shy high ambitions, forbidding yourself to worry untill it's 10 in the morning. These are all new habits one can adopt. Just practise til they become second nature. It's like adopting a new driving style for the batmobil you've had for years. You may inititally feel like an old grandpa but who knows what new features you discover on the dashboard.
  4. calming the system: valerian, magnesium, progesterone, no sugar spikes, no intestine upsetting food, adrenal support when there's a body burden, taking supplements and drugs in small doses through the day instead of one pill once a day, mental kindness towards the body, petting a pet, continious checking if muscles are tensed up and relaxing them, ...
While I wait for that magic pill I approach it from the top-down, working the nervous system. This has actually helped me go back to sleep within a few minutes after the five-hour-mark. Sometimes.

PS on new habits:
I hate the tendency of self help books and some doctors that it's somehow my/your faulth for not having these habits already or when I fail to adopt them. As if that means I don't want to solve the problem seriously enough.
I rebel against these views!

Invitation to new habits:
for me, I only was willing to go down this route when I decided to see it as a change to explore new terrain. Taking advantage of the unique features these mutations give: a mind that's able to shift gears and shift views easily.