Waking up every hour....or not falling asleep at all after major crash

[soxfan]

So I got through the worse of my crash which lasted about 3 days....during that time I slept extremely well. I do take .025 of Klonopin at bedtime but I slept more deeply than usual.

Now my sleep has totally gone in the wrong direction and I am either waking every hour all night long or as last night...didn't fall asleep until three and woke up at six. Needless to say I am pretty useless at this point and feel almost as bad as I did during the crash.

Up until this time I had been sleeping well...I can't say it is perfect or that I wake up wonderfully refreshed but at least I was getting 6 or 7 solid hours.

Any one think this has something to do with the crash I just had or totally unrelated. I know nothing about this disease is normal and our sleep can go from good to horrible in just a night. I don't feel any adrenaline rushing or pounding heart...I just wake up or can't fall asleep..

I know there really isn't an answer for this but since I am having a bad day from 3 nights of basically no sleep I needed to complain a little. I might go scream and cry too....

 

[matters]

When I was living in mold this is exactly what happened to me. It got so bad I was waking up and falling asleep every few minutes. This lasted for a full year. No rest at all. It was absolutely frightening, so I know what you are going through. As I detoxed sleep normalized to some degree.

I still get wakeups but only 1 or 2 per night. But I noticed that after I did better I would still get those sporadic episodes of frequent wakeups. Sometimes working with energy medicine, ie: PEMF or Rife would bring it on, Or if i worked out the previous days.. Too much stimulation, even though I didn't feel it during my sleep time, not amped or anything as you mention.

Meditation and Neurofeedback has worked wonders..Training my brain to reset even when I don't feel tired. Eventually it takes over and able to drift back off.

 

[minkeygirl]

My sleep is mess. The smallest thing can mess it up. And I absolutely will not sleep at all unless I take something. On a good night I usually only wake up once. Sometimes 3 or 4 times.

I usually layer 3 things. A sleep initiator and a sleep extender. And the only thing I take every night is Trazodone. I alternate between Halcion and Zanaflex, and I alternate between 2 different OTC antihistamines. I have seroquel that I use at a low dose and have some doxepin to try.

When I wake up an hour or two later, I take more antihistamine and depending on the night more zanaflex or trazodone.

Finding a combination of things that works that you can alternate so you don't build tolerance is the way to go. I get the best sleep on the night I use halcion.

There are still nights when none of that works and then I just have to tough it out.

I just remember that in 2002 or around then, mine sleep was like yours. I wouldn't sleep 3,4 5 nights in a row and then I was so tired I'd finally sleep 12 hours then it would start again. It eventually stopped.

 

[soxfan]

@matters- I just moved into a brand new home which was thoroughly inspected beforehand so I am not sure mold is the issue. I am interested in the meditation...I have tried before but can't seem to stay focused. When do you do the meditation? I have printed stuff out online on how it can be done but I really have a hard time with it.

I think another thing happens is that once I have had a couple bad nights I don't want to even go to bed and that just psyches me out even more thinking that I will be awake all night. I have a couple relaxation things on my iPod which I could try when I get into bed.

@minkeygirl- Thanks for the suggestions but I was on sleeping pills for 6 years and never felt good on them. Sometimes I would sleep and still wake up feeling horrible or if I didn't sleep well on them that was even worse. I finally got off them in 2012 and its the best thing I ever did. I am extremely sensitive to meds...especially anything that makes you drowsy or puts you to sleep. I have tried basically everything you can name in the past 10 years that would be useful for sleeping.

I have had so many bad bad mornings after taking them I just can't go back there. I guess I will just have to tough it out as I know it is a part of this illness.. but wow....it is very depressing when this happens.

 

[minkeygirl]

@soxfan I'd never sleep, but I went through a phase where I didn't sleep even with meds and I just had to work through it. Maybe what you have to do, just wait it out.

 

[matters]

sleeping pills didn't work for me either, it was so strange. I used to be able to bite off 1/4 of xanax and sleep solid for 8 hours. When i was going through it nothing worked.

As far as meditation the method that works best for sleep is Trancendental or TM. This method is great because you don't have to focus, that is the whole point. To let go. but instead of the mind racing you focus on a mantra. If you sign up for TM class everybody is given an individualized mantra. you repeat the word over and over and you let your mind do whatever it's doing, you don't judge anything, you don't talk to your self, you dont' scold, just be. let the thoughts pass like the wind passes thru a tree. it doesn't get hung up on anything. The more you meditate the quicker your mind will settle down. In the beginning your brain has all these stresses it has to work through so it races. But as you clear that with your sessions it settles down quicker and quicker.
i do it 1 per day now, Did it twice a day for about 9 months. It takes about a week of 2 sessions per day to actually start working, if you are doing it right. Again, you don't challenge or ask why you are thinking, u just let it go and then get back to your mantra after the distraction/thoughts pass

Eventually the brain settles down (it basically runs out of things to think about, and you don't interact with it) that just feeds it.
you drift off into what they call an alpha or theta state.. Theta is dream like, your brain takes over and just falls asleep if that's what you need. I haven't completed a 20 minute meditation session without falling asleep in the last year. I'm so sleep deprived still..

I've also done neurofeedback on a few different software programs. The one that helped tremendously is called Infra Low. They hook some lobes to your head and you follow moving objects. Or when you get more advanced they just play sounds with a mask on. It's like TM on steroids, The therapist I worked with said that my 3 months of weekly Infra Low was equivalent to 5 to 10 years of just straight TM training.

I'm basically able to enter a dream state while still being half awake whenever I practice TM. it's pretty awesome.. It's the best investment I've ever made ,, despite thousands of dollars on supplements and dr visits including alternative. It freed me in a trapped, tired unable to escape body. And I thought i was never going to be able to sleep again. It was so bad. I feel your pain, Seek out these methods, it was the ONLY thing that worked for me, and I tried everything.

 

[soxfan]

@matters- thank you so much for all this information. I had never heard of TM so I am going to look into that first. My doctor mentioned Neurofeedback many years ago but I just ignored the suggestion and kept taking my sleeping pills.

We are actually driving up to NH in August so I have an appt. with him and I will ask about that. It took me a long time to realize that drugs to sleep do not work well for me. I went so many years on them and although they most of the time knocked me out it was not a good sleep. I have tried at least 10-12 different pills in order to achieve a good sleep.

Many mornings I would wake up feeling drugged and plain terrible and had to go to work. I just thought I was doing the right thing after such bad insomnia. I also came to realize that no sleep was actually better than the sleep I was getting on pills....

I slept a little better last night although waking at least 4 times I did fall back to sleep fairly quickly...even so it is still disruptions and not a good thing.

Thanks again for taking the time to explain all this as it is something I am definitely going to check out.

 

[taniaaust1]

So glad to hear your sleep is a bit better, maybe it will settle down again.

Eventually the brain settles down (it basically runs out of things to think about, and you don't interact with it) that just feeds it.
you drift off into what they call an alpha or theta state.. Theta is dream like, your brain takes over and just falls asleep if that's what you need.

Unfortunately some of us with ME, its screwed our brains up to the point in which we dont even have normal brain wave states while we are asleep or relaxed. Im a yogi and hence meditated for many years, I used to even run meditation classes, I then got ME and wondered why on earth I could no longer meditation. I only ended up figuring that out after I had EEGs done and found out my brain just wasnt working normally at all and was abnormal. (I later on then found out my abnormal EEGs were common findings in ME).

focus on a mantra. If you sign up for TM class everybody is given an individualized mantra. you repeat the word over and over

Some of us, repeating a word over and over can completely exhaust our brains to the point we can have a crash. (some of us get postexertional exhaustion just as much from working our brains as from doing physical things). Many ME people need to take care with that.

I'm basically able to enter a dream state while still being half awake whenever I practice TM. it's pretty awesome.. It's the best investment I've ever made ,, despite thousands of dollars on supplements and dr visits including alternative. It freed me in a trapped, tired unable to escape body. And I thought i was never going to be able to sleep again. It was so bad. I feel your pain, Seek out these methods, it was the ONLY thing that worked for me, and I tried everything.

Its cool that worked for you.

 

[maddietod]

Re meditation, the point is to teach the mind to be still. So practice holding a focus on anything that is NOT words. Classical music can work, or meditation tapes with thunderstorms or oceans.

Another practice that helped me a lot was finding the gap between thoughts. There's always a space. Jump into that gap and widen it......allow more space between thoughts. Sometimes I'd put a bubble into the gap and imagine sitting in the bubble and expanding it. This is a visualization, but without a story-line. You want to avoid stories.

Some people focus on their breathing, but I don't. I do notice it; as I go deeper, it gets much slower and very even.

EDIT: I did not mean to imply that a mantra, using words, is a bad idea. It's words making a story that's the problem.

 

[matters]

Heartmath is another pathway, if words don't work for you in TM. It's a different pathway (the heart) to achieve stillness and hopefully drift off.It didn't work for me, as it was also distracting to focus on breathing. Binaural beats, classical music, white noise, nothing worked, which was odd. Before my damage those were my go to methods.

As far as getting into that "gap" that is exactly what happens with TM, when you don't force yourself in it. The mantra is not said out loud in your head, it's a soft barely audible in your own mind, it's only purpose is to keep you from having your mind drag you through it's stresses and thoughts and worries etc and you interacting with it. You can find that gap. I barely use my mantra now, it's maybe said 10 times in 10 minutes. I'm mostly in that gap.

Also, as far as neurofeedback and abnormal brainwaves. My spect scan showed MAJOR TRAUMA in limbic system, basal ganglia and prefrontal cortex. The dr who analyzed my scan said the WHITE areas in these parts was extremely rare (hot) he had never seen such high activity from a 45 year old even. He said a 40 year old can't even produce that much heat. He was shocked. They do two tests, one while you are concentrating and one where they put you in a room and tell you to just hang out for 30 min before taking the pic. My brain was moving just as fast as when concentrating or playing challenge game.. So you can heal. I was breathing mold/poison for two years. Like sniffing glue, Even using many different meds, when i did eventually fall asleep on meds my dreams were in fast motion, like somebody was holding the fast forward button on the dvd player, i would wake up exhausted, it was so F'd Up, it was hopeless. The damage was real

. My waves were all over the place, High Alpha, my normal waking operating speed was 13.5mhz. This is extremely rare, My doc preforming the INFRA LOW promised me she could stabalize me, I was doubtful but it worked. You have to find a good dr that knows what they are doing. FOR SURE. Keep in mind, I also tried "neuroptimal" -that's the software - neurofeedback for many months with no success.
You need a practitioner that is really knowledgeable. Again the system that worked for me is INFA LOW. And btw, do not use "lens" training.


There were many months before treatment that not only would I wake up every 5 min but when i did eventually fall asleep it was that half awake /half sleep.. really crappy. like i was sleeping on a plane, My brain simply would not go into the deeper levels of sleep. This went on for 2 years.

I was stuck in alpha, like a car with a bad transmission can only go into 1 gear. There was definite brain damage. But through treatments the brain finds alternative pathways to get to homeostasis. Do not underestimate it's plasticity even in a damaged state.

I sympathize with everybody suffering from this. All I can say is it worked for me. The TM was a prefect adjunct. I would try TM for a few weeks at least before giving up.












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[soxfan]

I have no idea if I have problems with my brain as I have never had any testing at all on it. I do know that I get extremely tired in social activities and I also will have severe PEM a day after traveling in a car for a long period of time.
I figure that is from my brain trying to process all the activity for example of the other moving cars and scenery.

I have had sleep studies done to try and find out why my sleep quality was so poor but I only slept about 2 hours total during each one so they were totally useless.

We are all so different so it is always great to get a lot of different ideas on what works for people. I never get tired of gathering information on anything that might help.

Just as sleeping pills do not work for me but other people get a great night sleep with them...

 

[Christopher]

If it's a brand new home, how much toxic material was used in the construction? That would be my first guess.

 

[roxie60]

My sleep is also a mess. Had a couple breif periods where it was 'normal', I was so thrilled when I was blessed with f few weeks of normal sleep.

 

[heapsreal]

I would consider changing sleep meds before thinking about increase dose of klono. It doesn't sound like a tolerance problem but it could be a part of the problem???

 

[soxfan]

I am not going to take any other types of sleeping meds or change the dose of Klonopin. I can't take any more or else will be groggy the next day. I won't ever take anything else after the very bad experiences I had with some of them. I will just stick it out as it is a little better...

@christoper- this use to happen at my previous house as well. I don't have it all the time and was just curious if it was happening because of the crash I had. I have been living here almost 7 months and this is the first time I have had this problem which happened immediately after the crash....

 

[matters]

Maybe your adrenals are sputtering from all the stress caused by the crash? Just thinking of other possibilities.

 

[soxfan]

I thought so too but cortef didn't help at all....in fact it just made me very sleepy during the day. I still think I have low adrenal function but then sometimes I think it is too high at night...crazy.

I don't think I will ever figure any of this out...I haven't in 10 years why I feel so differently awful everyday. I just want to get up some morning and feel refreshed and normal....

 

[matters]

That's a sign of adrenal fatigue. when the rhythm is all off like that.

 

[CFS_for_19_years]

I can't get to sleep (and stay asleep) without 3mg sublingual melatonin. Have used it for years.

Pregabalin (Lyrica) @ 150mg in the evening also helps initiate sleep.

 

[heapsreal]

I thought so too but cortef didn't help at all....in fact it just made me very sleepy during the day. I still think I have low adrenal function but then sometimes I think it is too high at night...crazy.

I don't think I will ever figure any of this out...I haven't in 10 years why I feel so differently awful everyday. I just want to get up some morning and feel refreshed and normal....

look into phosphatidyleserine and or the herb withania.