Sleeping Issues - Dealing with Chronic Deprivation

[NeuroNixed Craig]

I know everyone experiences "similar" and sometimes very different symptoms with chronic neurological illnesses. I seem to specialize in sleep issues. How long can this go on?

I, on the other hand, am totally messed up. I seem to be sleeping now in 1 to maybe 2 hour blocks and not functioning well between, only existing.

Last night I crashed at 7pm up at 8:30pm, crashed at 10pm, up at 11:30pm. Attempted to check email and forums - barely. Crashed in my office chair 45 minutes, moved to my office sofa 30 minutes. Moved to the living room and watched a bad Showtime movie until 2:30am. Tried to do some stuff on the computer, but ended up crashing in my recliner for 2 1/2 hours.

I looked so bad this morning my dogs wouldn't even allow me to let them outside. My wife took one look at me and said, "Have a little breakfast and go back to bed until whenever." It is snowing a "tad," but only about 2" expected and very pretty sticking to the trees.

So, once again a very unroutine routine night for me and I will attempt a shower when I get up. To top it off, I feel like absolute "CRAP!"

Other than that, have a great Saturday all!

[mjan]

I tell you Craig NO ONE is looking into your meds or combo of meds and HOW its affecting your brain, liver etc.and now of course your sleep cycle.

The reason is my husband had a very good med used for seizures (he had plenty) and instead of it having downer effect, it keeps people UP UP UP!! And it affected him emotionally. It even affected our relationship. He liked the high of staying up and getting so much done, but we all know its not healthy and eventually we will crash. Then he had plenty of downers which zapped his energy, drive and ability to work.

I know you would never consider letting go of any of your meds.. none of them? We are lead to believe we need such and such a med indifinely and we go along with it. Why? Cuz no one knows the difference, or until it gets reported how toxic a med can be. Otherwise we stay on meds until eternity.

And I know you know that many many docs treat via RX only. They are ONLY trained in RX methods. Nutritional therapies were removed from Med schools curriculums

I was evaluated (so was my hubby at the time) by a specialized nutritionist who uses NRT or Nutritional response testing. He/she will evaluate for toxicity, decifiencies and built your system up. Also he tested the effects of meds on the body/brain systems and could counteract the side effects. NEVER would a nutritionist diagnose/prescribe, or recommend NOT taking a med.

My neuro at the time thought the effects were amazing and often said I need to return to this nutritionist as he could SEE how beneficial his program was to my symptoms.

Toxicity or build up of too many chemicals on the brain can and does causes lots of neuro symptoms. THE BRAIN NEEDS WHOLE FOODS, critical minerals etc that we lack in our American Diet to function at its optimal level. He ONLY supplments in his nutritional program. BUT he can tell you what you need or combo in the EXACT amt (dose) to be used ONLY for only a certain length of time your body needs it. NONE of our RX do that.

We all take a guesstimated dose based on others studies, forever it seems, right? The prescribing MD does not seem to know how LONG someone needs something. Its educated guessing IMHO!!

Even my poor husband, during a complex partial seizure was yelling, "my meds are killing me, my meds are killing me" and sure enough, in the end his meds (toxicity) did shut off his brain and he died peacefully. He knew it, I knew it.. I told his doc..but to no avail.

I know you'll think you are different, but its worth it to try.
Look up NRT and folks trained to evaluate. IF you want LOL

Best to you.. hope you can sleep..and SOON!! While you figure this out, ask GOD to give you some healthy, peaceful sleep.

Warmly, Jan

[Sequoia]

Hi Craig,

I have a similarly disordered sleep pattern, which has gotten slowly but steadily worse as my MS has progressed. I sleep better in the daytime than at night, but I never get more than 3 hours of sleep at a stretch. Usually it's more like 2 hours, or 1, or less.

That leaves me perpetually exhausted, and perpetually trying to catch up. In other words, I completely sympathize--or rather, empathize--with your situation.

Although Jan's suggestion of looking into the effects of your meds is a good one, I have to say that I'm on no meds myself, and haven't been for several years now...not even symptomatic meds.

Sleep disturbances seem to go with MS for many people, and it sounds as though your neurological disorder is similar in that respect.

I deal with my extreme lack of sleep by sleeping when I can, meditating regularly, making maximum use of what awake/alert time I do get, and working on acceptance of the fact that not sleeping is just how life is for me now.

The meditating part--which I actually do several times a day--is key for me. Not only does it help me cope with all my MS-caused deficits, it gives me periods of genuine restfulness if not actual sleep throughout the day.

I hear you, I understand how it is, and I'm sending you a gentle cyberhug and a wish for your sleep pattern to improve somehow.

[mjan]

Hey there Sequoia.. YESS I agree with meditation as well.
Its that MIND/body/SPIRIT connection that is often unerestimated.

Even though you are are NO meds, (good) your brain/liver can still be toxic and very deficient. Not to mention what the inflammation does. We live, eat, drink and breathe toxins. Just a FYI ok hon?

And do you know what time of day you get really sleepy?
Sounds like you listen to that.

I have the opposite issue, my brain issues caused by several other illnesses besides MS, cause a severe alertness reaction where I cannot remain alert from seconds (like a seizure) to HOURS!! I lay there paralyzed unable to ask for help. BUT its improving with the supplements I am takng and monitoring of my electrolytes. It a rare kidney disorder that spills out electrolytes. Always something...

Be well..SLEEP my dear~

Jan

Good post ..thx

Warmly, Jan

[Sequoia]

Hi Jan,

I'm pretty well detoxed.

I follow an anti-inflammatory diet, no gluten, no foods of animal origin, flaxseed oil and extra virgin olive oil for Omega 3 fatty acids, etc. I've been eating this way for a long time now.

I received nutritional counseling years ago at the highest level of macrobiotics, and I still follow those recommendations with minor tweaks as new knowledge pertaining to MS & diet has surfaced.

I also take several carefully-selected supplements.

Thanks so much for your warm-hearted post! I'm so sorry about your health issues in addition to MS. It really seems like one major illness per person ought to be the rule, doesn't it?

Best wishes,

Sequoia

[NeuroNixed Craig]

Thank you for taking the time to read my post and respond.

Jan, you are so perceptive and warmly supporting I just want to hug my screen. Your sincere concern is appreciated. I have an outstanding PCP who carefully monitors all of my meds, interaction potential and believes in keeping me on the minimum number and dosage, as I too believe. He is in constant conversations with my personal pharmacist to double check his thoughts. I have reduced all of my meds to a bare tolerable minimum since September.

Sparky, ever supportive and wise in your counsel. I actually cover my bedside clock with a face cloth just so I don't refer to it for any reason and am guided by my physical feelings to get out of bed or not. I sleep when feel like it and wake when my body tells me to wake. I've given up on trying to fight the situation and make the best of it. Not an area I would get an "A" in at this time.

Sequoia, a fresh perspective is always appreciated. I'm very in-tuned with my body and always have been. I'm at peace with the finality, but that doesn't stop my urge to look for answers and keep fighting the best I can. Although, that is becoming less each month.

Allow me to add some details to give a better idea of my circumstances.

* December 2008, near fatal brain stem stroke
* 68% of all stroke victims suffer sleep disorders
* My primary neurological disease has progressed involving degeneration of the Cerebellum
* Meds like Ambien, Lunesent even with narcotic pain meds ineffective
* Adding to this, I must use a CPAP for severe sleep apnea
* Sleep outside of bed is worse due to no CPAP
* I am very considerate of my wife's quality of sleep, she still works full time


I have a sleep disorder clinic and specialist, but only see them once to twice a year. His conclusion, even though my CPAP data looks like a DNA sample's inconsistency, as long as I'm getting a minimum of 6 hours sleep total in a 24 hour period, he's not concerned.

My diagnoses are terminal with continual progression. Not treatable, no cure, they can only make me as comfortable as possible. I personally draw the line when this effects how "I" desire to live life on my terms and NOT in a stupor.

I hope this aids in your understanding.

[mjan]

Craig..just so you know, my first part of my initial response to this post was supposed to be a Question..gee..

And I know docs check the liver via enzymes lab values but do NOT really know other ways was all I was saying.
Yes have a good doc to monitor and a great pharmacist who knows you personally is wondeful. You and I are lucky in that sense.

So.. until you find other ways to know, alternative methods safe and natural..you will not know other ways to help this situation out.

The other way, is to ASK for a decent/good night's sleep from God/Higher power/Mother god..whatever..it HELPS.
I have even asked for a loving dream and ALWAYS get one.

Its the price we pay, eh Craig? You are such a great guy for coming on to this MS forum when you did not have to. WE need YOU, I hope you know and realize that!!

I only was thinking of your best interest. YOU know this situation the best. I just want to make sure you know how much I love you..and support both YOU and your wife hon.

Mucho Love, Jan

[lchoppel]

Since you have a sleep disorder physician, have you had a sleep study? I have the same problem, and use Ambien to help me get several hours of sleep in a block. Otherwise, my sleep pattern would be exactly like yours. It's frustrating I know. Good Luck. Sounds like you have some very good recommendations with this thread.

[NeuroNixed Craig]

Craig..just so you know, my first part of my initial response to this post was supposed to be a Question..gee..

"WOW!" I sure missed your first post being a question, just great information and insight. A question mark (?) some where would have helped. My wife always says I don't take hints at all.

So.. until you find other ways to know, alternative methods safe and natural..you will not know other ways to help this situation out.

You are absolutely right! That's why I don't mind sharing as I do as someone may have information or an answer I have never considered. I have no problem asking for God's help, support, and healing on a regular basis. That's one area that keeps me sane. I just don't appear that way to other people.

I only was thinking of your best interest. YOU know this situation the best. I just want to make sure you know how much I love you..and support both YOU and your wife hon.

Mucho Love, Jan

Jan, I completely and confidently understand this. Another major reason I so strongly appreciate your insight and counsel.

Ichoppel, a sleep study was done some 7 years ago, a CPAP prescribed, my use is totally compliant and well monitored. During the test I experienced 47 episodes where I stopped breathing per hour. Additionally, since my stroke I have weak respiratory response syndrome. Meaning, should I take just a tad too much medication to sleep, I easily may never wake up. My wife would have no sense of humor about that after everything she's been through with this illness.

Thank you for your support and sharing with me on this issue.

[Redwings]

Hi Craig:
A someone who also sleeps in little chunks, your thread and Sequoia's post mentioning meditation got me wondering about a few things. If you've already been through this, please disregard...

I'm wondering if several sessions of meditation during the day (or even at night) could help to replace some of the restfulness you're not getting by being unable to sleep continuously through the night.

In theory, even though you'd be at very low brainwave frequencies, you'd still be conscious and able to control your breathing. I'm wondering how your stroke would have affected that ability. And even if you had to wear your CPAP while meditating, I'm wondering if you could get good enough at meditating to get down into those brain frequencies in spite of the distraction and still get the restfulness benefits.

I'm also wondering if biofeedback would be useful to help in training yourself how to get down into those lower frequencies. I'm wondering if, in addition to the restfulness and health benefits, biofeedback could help with your sleep apnea. I'm wondering about that because I haven't researched biofeedback's affect on central sleep apnea, with or without stroke.

I'm wondering if being able to consciously control breathing at deep brain levels could -- by brain plasticity -- also teach your brain how to have better control of breathing while at those same frequencies while asleep. Sort of like monkey see, monkey do.

So even if there isn't any improvement in your breathing/apnea, perhaps you could at least get some brain relaxation from meditation so you're not so wiped out when awake (i.e., at beta frequencies). I dunno... just wondering. Any thoughts on that?

[NeuroNixed Craig]

"WOW!" For just wondering, you sure do cover all the bases Redwings. I had to read your post 3 times to make sure I absorbed what you were talking about.

Yes, I've looked into meditation with my professional counselor and ironically, we both marked it up as a major failure to reach the objectives. She felt the same as you, there would be more benefit than loss. We went through the process over a period of time and it just didn't grab. Frustrating to both of us as I was very optimistic as to the potential results.

Again, we are dealing with a dieing cerebellum through disease progression and atrophy. Even the neuros lack terribly regarding the total effects as each person is unique and they love to just pigeon hole everybody. Research is very sketchy on this subject pertaining to my circumstances also.

Thank you for the information and offering your insights. I've been dealing with this disease and then the post stroke effects for over 10 years now. I am quickly running out of any possible options, but accept the fact that science and psychology can only go so far at this time.

Thank you again.

[BusyMom]

Hi Craig,

I don't know a lot , but just my own experience. I do know that my ms affects my sleep. I had similar sleep issues to what you are describing long before I was dx. So, even though medications can cause sleep problems, I know my ms is the primary culprit for me.

Sometimes, I can go weeks getting maybe 2-3 hours sleep a night on the average, then suddenly I will go several weeks sleeping almost all the time.

Right now I'm on the pattern as you describe of sleeping a couple of hours then awake... Wish I knew a good answer. But I don't.

[Sequoia]

Hi again, Craig!

Following up on Redwings' post and your response, I just want to add that although you've tried meditation with your counselor and found it not to be effective for you at that time, all forms of meditation are not created equal.

It may be that another form could be of some help to you...or not. But if you have any interest in exploring other meditative options, I have 35 years of meditative experience under my belt and would be glad to make some suggestions.

Of course all of us are different from one another, but in my case I am well into Secondary Progressive and have atrophy, and meditation continues to work well for me...in fact, it seems to be getting more effective as the MS wears on.

I'm just grasping at straws here on your behalf, but do want to help in any way I possible can.

[Sir-Voor]

I will recommend switching to Daylight Bulbs in the rooms you send a lot of time in.
Daylight bulbs and sunlight produces a chemical in your eyes that help you sleep at night. And may help your issue, I know they helped me sleep better.

Here is link to a thread about them.
http://www.msworld.org/forum/showthread.php?t=107307

[Redwings]

Yes, I've looked into meditation with my professional counselor and ironically, we both marked it up as a major failure to reach the objectives.

Craig, I have to admit that the image of that description made me laugh... because "reaching objectives" with a professional counselor is pretty much the opposite of what meditation is about.