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Clarification Needed On Sleep Disturbance Cause...


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I would like to continue a bit the discussion started under Roselover's Vanderbilt post about sleep (ironic that it came up b/c I was JUST getting ready to write this post anyways...).

Mainly I am looking for some clarification on sleep disturbance issues.

I know that this topic has been discussed many, many times, and I have also looked for a link to an article stating what I am looking for and can't find it. (It may very likely be right in front of my nose, but I have so much trouble with reading and concentration as many of you know and my computer doesn't read to me like my books on tape! :)

I will ask my major question and then give some background on what is going on for me.

Can we truthfully say that the ANS disorders are the CAUSE of our sleep problems? I have probable chronic Lyme disease as well as POTS and NMH. My understanding has always been that the sleep problems I have (trouble falling asleep, staying asleep, getting refreshing sleep, and like Sophia when my ANS is wired I am awake forever and ever and it is awful) are a SYMPTOM of my Dysautonomia and I need not be looking for another 'cause' to treat.

I am asking this b/c if anyone has a clear link to research or quote from the NDRF handbook or Fainting Phenomenon that my local doc could use with MA I would be eternally grateful. Also, I do not want to have to go through an unnecessary sleep study at this point if I am correct in my understanding.

Second, my sense is that many POTS docs are prescribing Ambien (Dr. Grubb does this also I think?) for long term use b/c we just dont' have other options sometimes available or that work. B/c MA keeps telling me it isn't for long-term use unless 'medically necessary'--which I think it clearly is in my case. Also, I know Ambien CR is approved for long-term use, so I may try for that.

Two issues here:

1. Getting MA to cover Ambien. I have been fighting with them for several months now and have officially exhausted the appeal process.

If anyone has written letters to their representatives about such a thing and would be willing to share a copy with me that I could use as a template I would be eternally grateful.

My mom and I (especially my Mom b/c I am so sick) have spent ENDLESS hours writing about my case and why I need Ambien. I have documentation from my POTS doctor as well as our initial consult letter in which we discussed my sleep issues, that I do meditation, blah de blah.

I could go on and on about how absolutlely infuriating the process is, how insulting and condescending it is, and how you are absolutely set up to fail. I even had a lawyer for the first part and still lost, then tried to get a lawyer for the next phase and they said they wouldn't take my case. I have had a telephone hearing with a judge and 'advising doctor', and sent extensive information on my situation and need for this med. My mom and I joke that she has a PhD and the stuff they send is in such legalese and gobbledigook it makes no sense!

Bottom line is that I was denied b/c they do not cover sedative-hypnotics except under very specific formularies. (Except, maddening to me is that they WOULD cover it for someone who needed to work the night shift and would lose their job if they didn't have Ambien to sleep during the day! I thought, okay, and that is MORE medically necessary than my condition).

To MA I have not proven that Ambien is medically necessary, despite my doctor's saying it is. They insist on a 'formal evaluation of sleep hygiene.' They will not accept the letters from my POTS doc b/c they are not 'clinic notes'. It's ridiculous. The doctor making the call on my case had NO understanding of ANS disorders--said there was no relationship b/w them and CFS or sleep disorders. He insisted that we do not treat depression with Ambien, we need to find the root cause and use the appropriate meds. Blah de blah.

DOES ANYONE HAVE ANY TIPS AS TO HOW TO PHRASE THIS SO THAT MA WILL 'BUY' IT...OR JUST BACK ME UP THAT I AM ON THE RIGHT TRACK THAT THE ANS PROBLEMS ARE THE REASON FOR MY SLEEP PROBLEMS?

I am so frustrated.

2. Now to answer your questions about other meds, such as Klonopin. I have been sick for eight years now and the sleep problems started about 6 months after I got sick.

I have worked extensively with psychiatrists (who were amazing) and also my POTS docs to deal with the sleep problems. I have tried over 50 medications since I first became sick and many have been for sleep--or to calm the ANS and in turn help sleep.

I have tried almost all of the anti-depressants, the benzos, clonodine, bbs, melatonin, valerian, on and on.

I have tried several times to go off of Ambien over the years and each time my doctors and I have made the CAREFUL decision that the benefits of being on it outweigh the risks of being on it. When I do not take Ambien, I literally just don't sleep. It's one of the only meds that I have tolerated or had success with, without miserable side effects.

I actually recently started taking Klonopin daily for pain, myoclonus, and the heart pounding stuff...and I do take it every day, but it doesn't help with sleep much. If I take more than a teeny bit I get too dizzy. We have gone so far as to try things like Marinol to help me sleep, but always come back to Ambien.

I feel that I have truly worked SO HARD on the sleep stuff and Ambien is all that has worked. I feel that if my POTS doctor (who is very amazing) felt that he didn't want me taking Ambien long term he would not continue to let me, as we have discussed it many times. Unfortunately, 'clinic notes' are not available for every word we exchange on the phone or via email and this is all MA will accept. Also, the psychiatrists, Dr. Grubb, and my previous CFS doctor all felt comfortable prescribing Ambien long term.

HELP!!!!!!!! It makes me sooooo angry that a doctor and a judge from MA can overrule years of medical care, and the advice of people who are SPECIALISTS in this disorder. Our doctors should be able to decide on the meds we need, not a doctor MA hires who knows NOTHING about Dysautnomia!

I have an appt. with my PCP on Monday and am wondering if I should try to have him do an evaluation of sleep hygiene? This is hard though b/c it is very hard when you have to lie down all of the time to engage in what they consider sleep hygiene???

Sorry for the incredibly long post. I feel completely caught b/w a rock and a hard place and don't know who else to ask for help!!!!

THANK YOU!!!!!!!!!!!!!!!!!

Emily

P.S. Sophia...thank you so much for your email...I do appreciate it! I am so grateful Klonopin works for you...I wish it did for me! It would make my life so much easier!

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Emily

I wish I had some answers for you as I feel your lack of sleep pain. Can I ask one question.

What does "MA" stand for or mean?

If I knew what that meant, that might help me to do a search for you.

Sophia

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Julia, MA stands for Medical Assistance, which is a state-run program that is administrated by an HMO--I'm thinking, Em, that it is Magellan? At least that's what it is in the Philly area and surrounding counties of Bucks, Montgomery and Chester.

Nina

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Em, I have gotten Ambien approved by regular BCBS for a year's supply. It requires that my doctor writes a justification. She says that a good night's sleep is mandatory for me given my POTS. Just recently, my neurologist got me 12 months approval for Ambien CR. I had one for Lunesta but I have found that ambien CR works the best. Good luck.

Lois

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Oops! Sophia, so sorry for the confusion!

I told you my brain was 'gone, gone, gone' today...I could hardly see straight to type.

MA is Medical Assistance--what I get for medical insurance from the state from my Supplemental Security Income. I do not have Medicare b/c I didn't work before I got sick, so don't qualify for SSDI or Medicare.

So, Medical Assistance is our gov't healthcare....not an HMO as Nina thought...

Hope this helps.

That's what makes it so hard to get meds, b/c they are cracking down sooo hard. I had to fight for EVERY med I take...even allergy meds and beta-blockers. It's ridiculous.

Emily

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Hey Em..I was wondering if you've thought of contacting the manufacturers of Ambien and seeing if they could help? I may be missing something...are you trying to get the cost of the drug covered? If so..don't some drug companies have programs in place to help individuals that can't afford the medications or don't have insurance coverage?

It may not apply here but I know I've seen articles were some of the major drug companies claim to have programs for those that can't afford their medications...I know that ambien is not a life saving drug but it sure does play a large role in your quality of life so maybe the manufactuer would help.

I hope you get something worked out soon!! :)

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Thank you.

I aplogize for the length of my post...I didn't mean to do that to you all, as I have so much trouble reading myself, why would I put you all through that long post????? It was so hard for me to focus today...

1. I have a cousin who is a drug rep in another state for Ambien CR, but I wasn't sure I wanted to bug her, but now I think I will! Roselover, AFTER you have rested up more, let me know what you find out. I have heard that going through these processes to get a med is hard.

2. I guess my biggest question is the part of my first post that is in bold...do the ANS problems cause the sleep disturbances? If I can simply state this as a fact, then my PCP can just feed these words to MA and hope that they buy it.

Pooh--got your email just now....thank you so much. It sounds like from what you are saying that sleep problems are a RESULT of our ANS problems? And that is the consensus at Vandy, etc.?

Again, sorry for the ridiculous length of my post! I'll try to post when I'm not so foggy next time!

Later alligators!

Emily

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Dancing Light

Sorry that MA stuff is out of my jurisdiction. :ph34r: Many of us know the ANS affects sleep but getting it documented is something else. It must be mentioned in print somewhere. But that doesn't help you right now.

Yes, CONTACT the drug maker directly and try to get assistance. I used to get my $1000 worth of DDAVP for free until the !#!&*!()& medicare D program screwed that up. I can't afford to join it (LONG STORY FOLKS) but thanks to the OPTION of a program I can't afford, the makers of DDAVP told me they will no longer hand out the meds.

NICE. So, I feel for you Emily. The red tape is sometimes endless.

At least you are not on Medicare to put up with the bogus MEDICARE DRug program. My doc told me it has RUINED the lives of his poorest pts. But it sounds like MA has it's OWN HOOPS to stress people out.

So keep us posted what you find out from the company. Good luck.

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Guest tearose

Hi Em, long time touching base...I am too tired to pour through the entire thread right now but I skimmed and wanted to add...from my experience with my sleep study...

The dysfunction of the ANS due to dysautonomia is seen documented in the many sleep arousal's that wake me hundreds of times and never allow for true restorative sleep. I have no awareness of these numerous wake-ups cause I am "trying to enter deeper sleep" and am not "aware" of my pattern in that stage of sleep.

I was told that blood can pool while we are sleeping and that this may be what contributes to the awakenings.

I hope this information helps.

take care, tearose

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This is helping me VERY much.

Thank you tea! I owe you an email....so very, very sorry.

So, Wareagle, Sophia, Tea and Roselover...it seems the consensus is to contact the drug company! Thanks! I will call on my cousin to see if she can help me out. (Just for entertainment value, I am one of 40 cousins on that side of the family!)

I guess that I just wanted so much NOT to let the system win so I used countless energy points to pursue what I thought was 'just'--that they cover the drug. But, they set you up to fail, like they do with winning disability claims.

Sophia...I am sorry about the DDAVP...I had to fight for that one too. There is a generic now...it JUST came out a couple of months ago and I seem to find it equally effective as the original. But, I am not sure how much cheaper it is.

Yes, Medical Assistance is a MESS. People are going without meds that they absolutely need and are forced to try a series of meds that are part of the formularies. You must FAIL on each med before you can get the one you want. For example, if you have been on Allegra for years, you can't get it now unless you try Claritin OTC and a series of other meds. You have to prove that you can't tolerate them. I tried these meds years ago and couldn't tolerate them, but was told I would have to go through the process again. My system is just on the edge of crisis at all times, so this is not exactly a good plan for me! Do they want to pay hospital bills too?

In reality, they have spent more money for the trials, and judges and appeals than it would cost to cover the drug. Good grief.

Sorry, done with my rant, but something must change...it is NOT okay for people to need meds and not be able to get them.

You all rock!

Sophia--you are right...I was trying to find a good documentation and couldn't.

I want to go to sleep NOW with my AMBIEN, but it is thunderstorming and I just can't sleep in thunderstorms! So, I'm rambling to you all!

Goodnight!

Emily

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I agree with everyone about contacting the drug company. Also one thing to is my doctor knows I am waiting on SSDI, and when I first try new meds many time I get hand full of meds. Would yout doctor give you free samples. A few years back, I was taking a SSRI that BCBS would not cover "to new" and my doctor gave me all 6 months that I was on it free samplea that they got from the drug companies. Just a thought.

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EMILY!!

Geez it seems MA is a nightmare itself in GRANTING PERMISSIONS for the drugs you and others need. That a vicious merry-go-round for people.

Its' enough to make me buy a gun and start shooting toe nails OFF of the CRETINS that DECIDE the stuff for this CHOCKING government red tape.

(dont' worry, folks, dont own a gun, but maintain the fantasy! :ph34r: )

I am gunshy(Pun intended!!) of generics of NEW meds. I got some "generic midodrine" that crumbled as I tried to break off a dose. It was a tall pill. BASICALLY two pills stacked together?? I paid 89. for 30 generic pills. The pharamcist at Kroger told me to return the pills and she would break them for me. After I grocery shopped and SAT and waited 20 minutes, she said the pills were a NIGHTMARE to pill cut. So sent me home to pick up later.

I got home thought about it and called her. Said I wanted to return them and she said couddn't to it once they left the store. She said she had NEVER SEEN such a problem pill. I said I had taken the BRAND NAME FOR YEARS with no problem taking 1/4 pill. I told her I had not doctored the pills, they were a mess all by themselves and what if the odd shaped pieces SPIKED my BP?

SHE couldn't even cut them in half, therefore it was NOT SAFE DOSING, I REPLIED. After I continued to make many more points, she agreed to take the pills back, and charge me the diff to get the brand name (which I hated to do but as least I wasn't stuck with CRUMBLING GENERICS that did NOTHIING for me) It was the first time they had given a refund for an obviously poorly made generic.

They got me the brand name PROAMITINE two days later and I gotta call from the generic drug company. To cover their rear and they asked stupid question. But I RAISED CAIN for the brand name and got it.

So, I am going to attempt to find the page for Aventis or my old paperwork with a number on it and CALL THEM about my DDAVP situation.

Good luck Emily. It's terrible to get stressed out and FIGHTING for what we need and deserve when we simply want some SLEEP or to raise BP.

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Hey Em!

Yes, apparently the ANS disorders do have a direct relationship to not sleeping or not getting restorative sleep. I have just started working with a really good sleep specialist and we've had some interesting discussions.

The problem is, I don't think there is much published research yet on people with POTS, OI etc but I will send you a journal article that may help you a bit.

Have you ever had your catecholamines drawn? If so, did it show you were hyperadrenergic? If that is the case this journal article may help you even more. PM or email me to let me know how I can best get this to you. I can fax it; I MIGHT be able to scan the article and send it via email attachment or if none of that works then I can send you the abstract link and maybe your Dr can get access to the complete article or you could take it to a medical library and ask them to print the full article for you. Do you live near any medical libraries?

Here is the link for the manufacturer of Ambien that gives the app for assistance however, Ambien is not included in the drugs that they provide assistance with. However, you may want to call this number and explain your situation and see if they have any advice for you. http://www.needymeds.com/papforms/150.pdf#...assistance'

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Emily

I don't have any advice, but I just wanted to let you know I am thinking of you and so sorry getting the meds you need can't be easier. I know when I was very sick with POTS, I had major problems with falling asleep and staying asleep--as many of us do. It seems very obvious that this is a hallmark of ANS disorders--or at least POTS. I hope you get resolution to this.

Katherine

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Here are a few recent abstracts related to sleep and the autonomic system. I don't have access to the full articles so I'm not sure if you will find anything of use in them or not. I hope they help.

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

Med Klin (Munich). 2006 Mar 22;101 Suppl 1:178-81.

Related Articles, Links

[Chemoreflexsensitivity is reduced in obstructive sleep apnea and might be modulated by the autonomic system]

[Article in German]

Steiner S, Hennersdorf MG, Strauer BE.

Klinik fur Kardiologie, Pneumologie und Angiologie, Universitatsklinikum Dusseldorf. steinest@uni-duesseldorf.de

BACKGROUND: Chemoreflexes are important mechanisms for regulating ventilatory and cardiovascular function, which are supposed to be influenced in obstructive sleep apnea (OSA). PATIENTS AND METHODS: For determination of chemoreflexsensitivity (CHRS) the ratio of the RR-interval shift in the surface ECG during 5 min inhalation of oxygen via a nose mask was formed in 15 patients with suspected OSA. Noradrenaline plasma concentrations were measured and were correlated to CHRS. RESULTS: Patients with OSA showed a reduced CHRS. CHRS was correlated to the severity of sleep apnea (respiratory disturbance index [RDI]; r = -0.622; p = 0.013), and to minimal nocturnal oxygen saturation (r = 0.594; p = 0.032). Reduced CHRS was associated with higher noradrenaline concentrations (r = -0.542; p = 0.037). CONCLUSION: CHRS is reduced in patients with OSA and correlates with the severity of OSA. Further on, CHRS might be modulated by the autonomic system. Therefore, the determination of CHRS enables to estimate sympathetic activation in these patients.

PMID: 16802549 [PubMed - in process]

A network of (autonomic) clock outputs.

Kalsbeek A, Perreau-Lenz S, Buijs RM.

Netherlands Institute for Brain Research, Hypothalamic Integration Mechanisms, Amsterdam, The Netherlands.

The circadian clock in the suprachiasmatic nuclei (SCN) is composed of thousands of oscillator neurons, each dependent on the cell-autonomous action of a defined set of circadian clock genes. A major question is still how these individual oscillators are organized into a biological clock that produces a coherent output capable of timing all the different daily changes in behavior and physiology. We investigated which anatomical connections and neurotransmitters are used by the biological clock to control the daily release pattern of a number of hormones. The picture that emerged shows projections contacting target neurons in the medial hypothalamus surrounding the SCN. The activity of these pre-autonomic and neuro-endocrine target neurons is controlled by differentially timed waves of vasopressin, GABA, and glutamate release from SCN terminals, among other factors. Together our data indicate that, with regard to the timing of their main release period within the LD cycle, at least four subpopulations of SCN neurons should be discernible. The different subgroups do not necessarily follow the phenotypic differences among SCN neurons. Thus, different subgroups can be found within neuron populations containing the same neurotransmitter. Remarkably, a similar distinction of four differentially timed subpopulations of SCN neurons was recently also discovered in experiments determining the temporal patterns of rhythmicity in individual SCN neurons by way of the electrophysiology or clock gene expression. Moreover, the specialization of the SCN may go as far as a single body structure, i.e., the SCN seems to contain neurons that specifically target the liver, pineal gland, and adrenal gland.

PMID: 16753939 [PubMed - in process]

http://eutils.ncbi.nlm.nih.gov/entrez/quer...l=pubmed_DocSum

Am J Physiol Regul Integr Comp Physiol. 2006 May 4; [Epub ahead of print]

Related Articles, Links

The link between cardiac autonomic activity and sleep delta power is altered in men with sleep apnea-hypopnea syndrome.

Jurysta F, Lanquart JP, van de Borne P, Migeotte PF, Dumont M, Degaute JP, Linkowski P.

Sleep Laboratory, Department of Psychiatry, Erasmus Academic Hospital of Free University of Brussels, Brussels, Belgium.

Aim of the study We hypothesize that sleep apnea-hypopnea alter interaction between cardiac vagal modulation and sleep delta EEG.' Background Sleep apnea-hypopnea syndrome (SAHS) is related to cardiovascular complications in men. SAHS patients show higher sympathetic activity than normal subjects. In healthy men, NREM sleep is associated with cardiac vagal influence while REM sleep is linked to cardiac sympathetic activity. Interaction between cardiac autonomic modulation and delta sleep EEG is not altered across a life span nor is the delay between appearances of modifications in both signals. Methods and Results Healthy controls, moderate SAHS and severe SAHS patients were compared across the first three NREM-REM cycles. Spectral analysis was applied to ECG and EEG signals. High frequency (HF), low frequency (LF) of heart rate variability (HRV), ratio LF/HF, and normalized (nu) delta power were obtained. A coherency analysis between HFnu and delta was performed as well as a correlation analysis between obstructive apnea index (AI) or hypopnea index (HI) and gain, coherence or phase shift. HRV components were similar between groups. In each group, HFnu was larger during NREM while LFnu predominated across REM and wake stages. Coherence and gain between HFnu and delta decreased from controls to severe SAHS patients. In SAHS patients, the delay between modifications in HFnu and delta did not differ from zero. AI and HI correlated negatively with coherence while HI correlated negatively with gain only. Conclusions Apneas-hypopneas affect the link between cardiac sympathetic and vagal modulation and delta EEG demonstrated by the loss of cardiac autonomic activity fluctuations across shifts in sleep stages. Obstructive apneas and hypopneas alter the interaction between both signals differently.

PMID: 16675631 [PubMed - as supplied by publisher]

Rapid-eye-movement sleep behaviour disorder and neurodegenerative diseases.

Gagnon JF, Postuma RB, Mazza S, Doyon J, Montplaisir J.

Centre d'etude du Sommeil et des Rythmes Biologiques, Hopital du Sacre-Coeur de Montreal, Quebec, Canada; Unite de Neuroimagerie Fonctionnelle, Departement de Psychologie, Universite de Montreal, Quebec, Canada; Centre de Recherche, Institut Universitaire de Geriatrie de Montreal, Quebec, Canada.

Rapid-eye-movement (REM) sleep behaviour disorder (RBD) is characterised by loss of muscular atonia and prominent motor behaviours during REM sleep. RBD can cause sleep disruption and severe injuries for the patient or bed partner. The disorder is strongly associated with neurodegenerative diseases, such as multiple-system atrophy, Parkinson's disease, dementia with Lewy bodies, and progressive supranuclear palsy. In many cases, the symptoms of RBD precede other symptoms of these neurodegenerative disorders by several years. Furthermore, several recent studies have shown that RBD is associated with abnormalities of electroencephalographic activity, cerebral blood flow, and cognitive, perceptual, and autonomic functions. RBD might be a stage in the development of neurodegenerative disorders and increased awareness of this could lead to substantial advances in knowledge of mechanisms, diagnosis, and treatment of neurodegenerative disorders.

PMID: 16632313 [PubMed - as supplied by publisher]

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Guest Julia59

Emily,

Sorry fro chiming in a bit late. First, I wouldn't worry about your long post----sometimes we need more space to say what we need.

Second--------Have you ever tried melatonin? Just a thought---it's cheap, and it does help some people.

I'm by no means trying to sell you on it---I just know you don't need a prescription for it.

Here's a link about melatonin--------again, by no means am I trying to advertise a specific brand---it's just one of the links that popped up in my search on melatonin. All I know is that it's supposed to help with sleep, and that it's mild---that's about it.

http://www.melatonin.com/

Recently a Doc gave me a prescription for a prescription sleep aid----Rozerem---it's fairly new. Here's alink about that drug---maybe you can get this med covered by your MA.

http://www.drugs.com/rozerem.html

I don't know why it was prescribed ------All I said was that I dream a lot, and sometimes I wake up in the middle of the night, but usually go back to sleep. So I'm not altogether sure I need this drug. On the nights I don't sleep---I am really a mess, so I can relate in part to what your going through, but can't imagine this going on long term---I would be more then a mess---more like a train wreck.

Sophia-------do you notice that klonopin makes you dream more then usual? Since I have been on it---(I take it for the anxiety/panic issues) I notice I can almost think about what I want to dream about, and dream about it. I take about 1/4 of a .50 dose---sometimes another 1/4 if I'm out and feel over stimulated.

One thing I noticed it helped with was that it's slows my ANS down, and let's me catch up with myself---and overall I think it saves me from the wear and tear this can have. MY HR/tachycardia has been down, and before the klonopin beta blockers didn't do the job of lowering my heart rate completely.

I also heard it's useful to help with insomnia.

I think checking with the drug companies is a good idea also...........but I thought I would add a couple more possible options. I didn't read the entire thread, so forgive me if I repeated anything.

Julie :0)

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Julie

Melatonin makes me dream more and is notorious for VIVID DREAMING. However, perpetually sleep deprived folks sometimes dream more some daysm than others due to the vicious cycle of poor sleep patterns.

So Klonopin does not provoke dreaming though I can do weird dreaming on my own when I fall asleep w/o meds.

Yes, the melatonin MAY be worth a try. I tried it years ago with some success but the TIMING of the taking of the med is tricky. It can kick in w/i half an hour in some folks, a hour or more with others.

I would use the STRAIGHT plain Melatonin, 3mg pill. Break in half and if you can put under tongue. It has a neutral taste but is grainy...but this gets it into the cycle quicker. Also, do not judge by one or two doses. If your day night rhythms are out of balance, you made need to let the melatonin build up.

I first tried it 10 years ago...I know I took it an hour or more before bed when I swallowed it..I think it took a week to kick in and help me ALONG with the klonopin. Then sometimes I could take just the melatonin.

But it is a hormone so I didn't want to take it long term. Check it out Em and see what you think.

Good luck in this hoop jumping to the the sleep med you deserve.

Soph

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  • 2 weeks later...

I wanted to thank you all again for your help and update you a bit...

I went to my PCP this week and was hoping we'd make a bit more progress on the MA stuff. They want a 'formal assessment of sleep hygiene'. Does anyone know what exactly this is??? My doctor referred me for a sleep study which I am dreading. Haven't decided what to do yet. I'll be one of the lucky ones who doesn't sleep AT ALL and they get no information.

Frankly, I think my PCP referred me for a sleep study b/c he didn't want to do the work of doing the hygiene assessment. Even though I had a 45 minute appt. booked with him. He's a good guy, but not good on follow-through. It's like pulling teeth. Even though I go in with everything he needs to document in a letter. I've even gone so far as writing the letter FOR him and he doesn't send it!

I do feel badly for the docs though, b/c they need to be spending their time on other things...not arguing for things they know their patients need. Not fighting with a doctor who knows nothing about my case. He said, what kind of doctor is this guy? I said, I don' know but my lawyer thinks he's a veternarian! ;)

I've filed another appeal with MA. I have grand plans to contact legislatros etc. but the way I have been feeling lately, makes it hard. My mom will have to write the letters for me and as if she doesn't have enough on her plate right now!

Below are individual responses to all of you helped me out sooooo much. I wish I could report that I've gotten the darned drug approved! Will keep fighting and keep you posted!

THANK YOU A HUNDRED TIMES OVER!

Let's see:

Goldie--my PCP said that no other insurance companies are giving them any problems with getting Ambien approved. But Medical Assistance is a bear.

Pooh--yes, I probably have high catecholemines--my POTS doc suspects it based on my symptom complaints, but he's just not into doing much testing. He's much more into observation and discussing things. I would love to know about the article you are talking about. Both my parents work at the university, so if you just give me the reference information--the journal, article, pages, etc. we can probably even access it online, or otherwise easily get it from the 'braire. THANKS!

Buddyleeswife--I really appreciate you posting all of those article links. That was incredible thoughtful and generous!

Wareagel, Roselover, Pooh, and all who encouraged me to contact the company--Because I live at home with my mom (even though I only get SSI) her income counts and it looks, from the link Pooh sent, that I do not qualify. Also, it says that if you are a recipietn of Medical Assistance you also do not qualify. Helps a lot considering MA doesn't cover it, eh!? My doctor did say he would try to find a rep to bring in samples for me.

Julia and Sophia--Thanks for your support. Sophia...we could both get pretty passionate about this stuff, eh? Thanks for your support! I tried melatonin under the supervision of a psychiatric nurse practitioner without any success. Bummer.

Julia--Have you tried the Rozeram (or however you spell it). I have started to hear it advertised. Is it another sedative hypnotic like Ambien? MA won't cover it b/c it is that class of drugs, but I would be very interested to see if others try it and like it!

Later alligators!

Em

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Rozerem is more related to melatonin than anything else is my understanding. It does not keep you asleep like a hypnotic but helps you fall asleep. My own personal experience, I do not like it. I do not have trouble falling asleep, I have trouble staying asleep. Everytime I dream, I wake up and have trouble getting back to sleep. This starts 2 hrs after I go to bed and often occurs at least 2 more times during the night. Some nights I just get up and read, very frustrating.

A lot of us must have the sleep problem from the looks of it.

Lori

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Guest Julia59

Emily,

I haven't taken the new sleep drug-(Rozeram). Bev in Dr. Grubb's office suggested it, and quickly wrote a prescription. I have opposite reactions to drugs. In fact I do sleep, but I mentioned that I have weird dreams, and the next thing I know this prescription is being written. She told me that beta blockers can affect your sleep according to some study she read somewhere. I guess something like restless legs syndrome can happen ect.

Well I get RLS one in a while, and after doing the jig with my legs for about 45 minutes, I usually go to sleep.

I have no plans on getting it filled because I don't think I need it----at least not at this time. I will see what the sleep specialist has to say. Although I sleep, I do need to see a specialist about oxygen levels, and breathing issues---due to the brain stem compression.

I'm not saying I have these issues in my sleep, but the pulminologist suggested I have a sleep study because of my spinal compression/brain stem compression. I see him Monday. I actually drove out to the far side of West Toledo--(I'm from South Toledo--near MUO), then there was a sign on the door saying they moved to Maumee, Ohio---which is much closer to me--------dang......... :) I didn't feel like driving that far---I wasn't sure I would make it home------- ;) --

They were cool about it and apologized---and made the appointment for Monday.

I talk with a lot of people who have POTS and other forms of dysautonomia, who really struggle to sleep at night, sometimes only getting maybe an hour at a time---if that. I could not imagine that, I would be a complete train wreck.

I hope you can figure something out------------I get so mad about what people who are on MA go through----it's just plain crazy.

Julie :0)

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Julie,

I have a lot of dreams too! I don't know if I noticed having more since starting the Klonopin. Usually I have found it to be more related to the SSRIs I have taken...I have been having a lot of vivid dreams lately too!

Let's see, just the other day I was having one of my weird anxiety dreams...I was in high school and taking calculus and couldn't get there b/c it was first period in the morning and I failed a test and blah de blah de blah. My dreams are soooo bizarre! Just like me! hahahahaha!

Later alligator!

Goodnight!

Em

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emily,

i am almost sure that sleeping problems must be related to dysautonomia, altough it's not that i have schientifical proof. so many of us (if not all of us) have sleeping problems that (in my humble opinion) that can't be a coincidence.

i'm having sleeping problems for years and years now (at least 6 and i think even more) but am lucky enough to be able to not let it rule my life. when i sleep, i sleep, when i don't, i just don't. i CAN'T rule my sleep but i don't use any meds for it (that is because i am afraid to not hear my kids during the night when they might need me). the thing is that even when i don't sleep (or just sleep for the last hour beofre my alarm clock wakes me) i can still function somehow (be in my chair and walk around a bit; not going oudoors though). meanwhile i also don't sleep during the day. this situation can last for weeks followed by weeks when i sleep day and night (having very vivid unrealistic dreams and actually seeing things that don't exist). now that i read this, it does rule my life but it's not my worst symptom. i hope you understand what i mean.

i am very very sorry that your insurance comp. is giving you so much trouble with the ambien. i do hope that you can find something soon (ambien being paid for or something else that works for you) to help you get a better quality of life.

although i'm not sure you will succeed as you already tried so very much,

love

corina ;)

(and sorry to be so long)

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Dancing Light,

What is a formal assessment of sleep hygiene? I do not know the official answer but I can give you a "guesstimate" since I've seen a sleep specialist.

The sleep specialist had me keep a diary for (I think) two weeks marking down every time I fell asleep and whether or not meds were involved. This was prior to his visit. That way he could tell how many hours total sleep my body seemed to need each day.

He also asked me questions as to HOW I go to sleep. The upshot was, he did not want me to take naps; he wanted me to sleep ONLY in my bedroom (no reading, or watching TV); he wanted me to keep to a regular schedule as much as possible.

I can't remember the other stuff.

Anyhow, once I got the sleep study done, they could tell I had restless leg syndrome also.

Hope the info helps and I hope you get the meds you need approved.

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I think its very important to have a sleep study. You go , mine outpatient centre overnight. They wire you for everythin. Then they can see what your brain is doing. I thought with my first one that I slept well. When I went back to have the second, to get my c-pap, they said I didn't have any REM sleep and it took 3 hours to go to the first stage of sleep or whatever. It's not bad get your own room TV . Good luck Miriam

Don't you come to pitsburg for stuff? There are a couple places that will get you in in a week or 2.

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