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DancingLight

Clarification Needed On Sleep Disturbance Cause...

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emily (and others)

what i really meant to say is that i wish sleep studys would be done on dysautonomia patients so that scientist would be able to find out what causes sleep disturbances, but most of all what HELPS us.

well, off to bed now :) .

btw when i can't sleep i don't get out of bed but take a book and read, sometimes watch television and think things over. i like to think things over because there is no telephone to disturb me and no one is asking for my attention. i sometimes get great ideas for hobbies or to solve the things that i can't do anymore because of pots. the only thing i really hate is when my husband starts snoring ;) .

wish you all a great day AND night!

corina :)

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;) Hi Emily,

My doctor told me that our adrenaline works overtime all day and we can't just turn it off at night. I also have problems sleeping, big problems and nothing works, All of the script drugs, ambien, lunesta, rozerem, etc have the opposite effect on me and I stay up all night and even more wired than if I take nothing. Does anyone know of something natural that helps and doesn't exacerbate potsy symptoms. Good luck Emily, my doctors know that I am in limbo waiting for ssdi and with no income so they give me as many samples as they have. The drug rep is also a great idea.

Nity Nite (yeah, right, I wish)

Donna

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My husband recently had a sleep study done and has had his CPAP for just about 1 month now. He is noticing a decrease in his fatigue level although he never had a problem getting or staying to sleep. In his case, he never reached the deep restorative sleep level due to many arousals during the night (105 apneas and 565 muscle twitches!!!!). I read a really long presentation on sleep problems and I remember a statement that went something like this ' even with all of the really sophisticated equipment we have for evaluation, the best way to determine if someone has a problem is to watch how much they move around at night'.

Regarding the muscle twitches/RLS - they said that first they initiate the CPAP treatment and that in many cases it will take care of the twitches. If not, they will then work on treating the RLS. I think the CPAP may be doing the job.

They told us that it would take 3-6 weeks to see the benefits of CPAP therapy. Just last week, we had an all night power outage so no CPAP and he commented on how awful and exhausted he felt the next morning. The folloowing morning he felt great. We are really hoping for continued improvement.

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Here's a great presentation (actually it is a continuing education course) on The Diagnosis and Management of Restless Leg Syndrome: http://www.medscape.com/viewprogram/5101

Here's a quote from the study:

Sleep Disturbance and Daytime Sequelae

RLS patients may have the most disturbed and reduced sleep of all the sleep disorders. The majority of patients with RLS experience difficulty getting to sleep, frequent awakenings, reduced sleep time, and insufficient sleep.[40,66] Surprisingly, despite this sleep deficiency, daytime sleepiness or sleep attacks are not commonly reported by RLS patients. Instead, patients report fatigue, failure to concentrate, or inattention; vitality and cognition[82] are impaired. These daytime problems seem to arise as a consequence of the sleep impairment.[83]

Here is another good presentation that I found titled Sustaining Wakefulness in Excessive Sleepiness: Consequence Prevention

http://www.medscape.com/viewarticle/532398_27

Here's a quote from the section on Sleep Apnea

Slide 11. Regression Modeling of Subjective/Objective Daytime Sleepiness and Sleepiness Responsive to nCPAP

This table shows the 4 outcome measures: ESS, objective sleepiness (Oxford Sleep Resistance Test, or OSLER, which is a surrogate for the Maintenance of Wakefulness Test, or MWT), and the change in both these measurements with CPAP (Bennett et al, 1998).

These findings were remarkable. The best predictor of subjective sleepiness (ESS) was microarousals, with an r value of 0.51. The best predictor of objective sleepiness was the movement index. Movement index was a better predictor of changes in both ESS and OSLER scores than was neural net standard deviation.

These results show that even with all these sophisticated tests to quantify sleep disruption, the best way to predict who will be most sleepy is to simply look at which patient moves around the most in bed.

Reference

Bennett LS, Langford BA, Stradling JR, Davies RJ. Sleep fragmentation indices as predictors of daytime sleepiness and nCPAP response in obstructive sleep apnea. Am J Respir Crit Care Med.

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Neurobiology of sleep.Kalia M.

Strategic Planning Initiatives Group, Thomas Jefferson University B-6-A Scott Building, 1020 Walnut St, Philadelphia, PA 19107, USA; Departments of Biochemistry and Molecular Biology and Anesthesiology and Neurosurgery, Jefferson Medical College of Thomas Jefferson University, Philadelphia, PA 19107, USA.

The central nervous system undergoes several dynamic changes during sleep, which are coordinated by the pons, basal forebrain areas, and other subcortical structures and are mediated by three major neurotransmitters-norepinephrine, serotonin, and acetylcholine. The neuronal populations that produce these neuromodulators constitute the central representation of the sympathetic and parasympathetic subdivisions of the autonomic nervous system. The locus coeruleus (noradrenergic) and the raphe nucleus (serotoninergic) are most active during waking and become progressively less active in the transition from non-rapid eye movement (non-REM) to rapid eye movement (REM) sleep. On the other hand, the cholinergic neurons in the dorsolateral tegmental and pedunculopontine nuclei area are active both during waking and REM sleep. Over the past decade, a number of studies have provided interesting new evidence supporting the role of sleep in sleep-dependent memory processing. These studies have been directed specifically towards the role of sleep in memory encoding, memory consolidation, brain plasticity and memory reconsolidation, and have confirmed the hypothesis that sleep contributes importantly to processes of memory and brain plasticity. It has been shown in humans that sleep triggers overnight learning on a motor-sequence memory task, while equivalent waking periods produce no such improvement. These findings have important implications for acquiring real-life skills and in clinical rehabilitation following brain trauma and sroke.

PMID: 16979421 [PubMed - as supplied by publisher]

http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_DocSum

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I'm so sorry for all the unnecessary struggles the system is putting you through. I'm on Medicare, and I'm dreading the day I want to try a really expensive treatment or drug.

In case it's relevant (for anybody reading this), I also had not worked enough to be eligible for SSDI in my own right, but when my parents went on Social Security I became eligible for a Disabled Adult Child Benefit. I think the requirement was that I had been unable to work since before I was 21, but I'm really not sure about that age. It took a few tries to get approved, but thanks to a good lawyer and a sympathetic judge, I did eventually get benefits. Granted, the official decision was that I was disabled due to depression, which I'm not too pleased about, but at least they send me that monthly check.

Good luck.

Spike

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Spike,

That is interesting...my Dad has been looking into how to get the SSDI thing like you did, but I really do not see ANY way I am eligible.

I was still in college full-time at age 21, so there is not way they are going to say I was sick!

Congrats on being able to get that done though, it will give your family much more peace of mind. With SSI the scariest thing is that you cannot have any assets, so even if my parents save money to take care of me after I am gone, I lose my benefits. I cannot afford to lose the health insurance part! The other part (the moentary part is so piddly it's pathetic).

It's a nightmare for me, but I try not to catastrophize! But, it is hard. My parents are in good health so I just hope they are around for a LONG, LONG time and I don't have to worry about it! They are my caregivers, my friends, my world!

Emily

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Emily,

I'm sorry the SSDI won't work for you. As you say, the medical benefits are the important part. Fortunately, my parents are very supportive, and it sounds like yours are, too. My siblings are my backup line of support, and they are 100% behind my parents spending their inheritance on me. It is a little scary to be so dependant financially. I guess we just cross our fingers and hope for the best.

I hope the drug company at least comes through for you on the Ambien.

Spike

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Hi Emily, <_<

I have not been able to sleep since I got sick. It is so frustrating, and I also have tried almost everything available. None of it works, although my insurance will pay for Ambien, it doesn't work for me.

My EP told me that the reason why we can't sleep is that our adrenaline has to work so hard all day just to keep us going that when it is time for us to go to sleep, it can't just shut off. That made alot of sense to me. The only thing that works for me is .5 mg of Xanax, and that doesn't work all of the time.

I'm not sure of the website, but have you seen Montel Williams advertise a company that pays for drugs for people who can't? Maybe they would help, have you tried to get samples from your doctor, my doctor gives me samples of the expensive stuff. Also, there was a discussion about this several months ago on this forum and several recomended writing the drug company.

Hope you find a way soon, it is miserable being awake all night and watching the clock. Take care,

donna

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