Help Desperately needed please

[Elle]

"Please tell us again Dear John how much better socialized medicine is than what the U.S. has???"

Not sure how this 'boast' is helpful but it seems to be a trait that will not die out any time soon.

[Judge Nap]

It's a question. John is the one who has posted many boasts here.

My question is only helpful if it gets people to think before they vote.

[chunkyfrog]

Hi, Jack.

[jencat824]

Stillo,
Since you have internet access, it may take time, but you may want to try and research 'sleep disorders' and try narrowing them down by what your read pairing with what is actually happening with you.

Perhaps someone on the forum may have experienced a part or all of what you have going on. I myself can tell you if you have something other than generally recognized sleep disorders, drs don't know exactly what to do.

My story (short version) - I was on CPAP about 3 yrs when I developed a seizure disorder. It turned out initial neuro thought there was some relationship with sleep and my seizures. It took several years for a good neurologist to decide we may never know for sure. Initially 2 neuro's sent me back to the pulmonoloist at the sleep lab saying they 'thought' my seizures were rooted in sleep, but did not know how to proceed. My new(and current) neuro (referred to me by the sleep lab) then worked for 8 yrs to get my seizures under control. During all that time, no one was able to definitely link the seizures with sleep, so I still don't know for sure if they are related. I think they may partially be, but I think the fact that I have MS is also a factor, so does my dr. Last January, I was cleared to drive & bought a car - something I had stopped even dreaming about, but it happened for me.

My point in telling you part of my story is so that you know there are people out there looking for answers the the medical community may never find. You may want to combine your research with letting this forum help you as much as we can. Look for other forum's that are individuals with sleep disorders too. You may want to know that a concrete answer may not be found, but untimately what you need is not concrete answers, but a treatment plan to help you get necessary sleep. You've already started by being CPAP compliant, and by posting here in this forum. Next, keep trying new approaches, even if the medical community isn't helpful, you may need to 'look outside the box' for answers on your own.

I researched & read up on everything I could get my hands on about the relationship between sleep & seizures, also between MS & seizures. I took evidence of my research to my dr (copies) & some he kept to look into further. Those he discounted I filed & kept anyway, in case something might lead me back to them. A couple of studies did connect the dots to discounted research, so I was glad I kept them, not just remembered "gee I think I remember reading that somewhere". This all sounds like work, but if you find answers that may help, not necessarily pin a label on it, but just help you sleep better, this work will be worth the time it takes.

I'll be glad to help you any way I can.
Jen

[Todzo]

Good afternoon all

As you can see i am new to these forums and i am ever so grateful for finding them, please for give me for this long winded post but i am in desperate need of help, i have been told by my respiratory specialist that i have Onset Maintenance and terminal insomnia and sleep apnea and there is nothing can be done to help me, i wake up on average of 10 times per night and i mean fully wide awake and it takes me at least two hours to fall asleep, i have a report from a neurologist that suggests that i have a problem which is unknown, can any knowledgeable person or persons please offer advise, the report is listed below

This is an abnormal sleep study showing moderately reduced sleep efficiency due to a disturbance of sleep maintenance and sleep initiation. Sleep architecture is altered with a fragmented sleep especially during the first couple of hours in the night which were spent waxing and waning between shallow sleep and wakefulness. The onset of deep sleep in the first sleep cycle is significantly delayed. There is also increased sleep fragmentation later on during the night. The reason for this is unclear from the study. No significant changes in the physiological parameters monitored (Oxygen saturation and Ecg} is seen in association with the awakenings.

I am sorry for this post but i am now becoming non functional due to severe fatigue and tiredness and i don't know where to go to next. I have been discharged from the Hospital with no help whatsoever apart from do i want to try cpap again but as can be seen from the report there is no changes in physiological parameters. Oh and thank you for reading this post

Cheers
Stillo

Hi Stillo!

Perhaps there is some help for you in this. FWIW my current use of EERS [2] helps me with sleep onset. From another post:

Proper Treatment of Insomnia and PTSD:

During a recent interview Dr. Barry Krakow related that his group has found that 90% of those presenting with insomnia had a sleep breathing disorder (half UARS half OSA) and in the rest the awakenings were over 90% attached to respiratory incidents[1].

The pathology for PTSD also appears to be a sleep breathing physiological problem not a psychological one.

This year I have found my symptoms of PTSD much helped by a simple solution which corrects the CO2 maintenance issues involved [2]. I believe it is so effective because the brain is so sensitive to changes in CO2 [3].

Please treat insomnia and PTSD as the breathing disorders that they are.

[1] :
MP3 of - Expert Interview: Dr. Barry Krakow on PTSD, Insomnia, and Sleep Apnea http://doctorstevenpark.com/expert-inte ... leep-apnea

[2] :
J Clin Sleep Med. 2010 Dec 15;6(6):529-38.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Source: Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[3] :
Philip N. Ainslie and James Duffin, Integration of cerebrovascular CO2 reactivity and chemoreflex control of breathing: mechanisms of regulation, measurement, and interpretation Published online before print February 11, 2009, doi: 10.​1152/​ajpregu.​91008.​2008 AJP - Regu Physiol May 2009 vol. 296 no. 5 R1473-R1495
Link: http://ajpregu.physiology.org/content/296/5/R1473.long

[Julie]

The request about how much caffeine you're drinking was not out of nowhere - there's a syndrome called Silent GERD (acid reflux) which normally people are all too aware of, but a few are not, yet it wakens them during the night - and I think one thing you could do is ask (beg) for an esophagoscopy to see if your esophageal anatomy (where it meets the stomach at a sphincter) is good or possibly needs to be addressed in some way. Good luck!

[BlackSpinner]

Hi

I guess its only fair to point out that im in the UK and we are sadly lacking behind you guys when it comes to medicinal things,

Yours is a case where you really want to take the time and effort to go to one of the top sleep centers in the country - I don't know where you live but you need a second opinion from someplace like the Mayo Clinic, John Hopkins, Mass General or the NIH

Please tell us again Dear John how much better socialized medicine is than what the U.S. has???

People are not dieing of treatable diseases. Lower infant mortality rate. People don't go bankrupt trying to pay for their kids treatment. People in general live longer. Some issues aren't as well treated as rich people in the USA are.

[johnthomasmacdonald]

judge nap, "
Please tell us again Dear John how much better socialized medicine is than what the U.S. has??? "

Sure, NO problem - he's been given a sleep test and has been seen by a respiratory specialist who has told him that there is nothing that can be done to help in his case ( I'm assuming that YOU know differently) and that the use of a cpap machine didn't help him

So By COMPARISON - i've been paying $10,000 a year for US insurance (starting jan 1 I'm up to $24,000 per year since i realized that $10,000 a year is like having NO insurance (although $10,000 per year is more than any european company pays per capita to insure everyone) and was REFUSED a sleep test by my insurance company - then i paid for a home sleep test which diagnosed with osa with an ahi of 21 and have Bought 3 cpap machines - a PR auto, an S9 vpap and an ASV with not a Penny from my insurance company - still didn't get my apnea under control so I bought a dental appliance for $1000 and when I went to my sleep doctor ( board certified) she couldn't read any of the sd cards ( funny that Pugsy could and now so can I) and was totally useless and my insurance company REJECTED her bill of $265 by claiming it as a preexisting illness ( total crap of course but my insurance company rejects ALL claims and makes you fight them for it -

Now let's include Mozart ( and all the others who come on here) who is in here with NO insurance and bought his own machine and is trying to get the forum to treat him since he doesn't have the money for a sleep test and is totally fatigued and feels worse than he didn't before trying cpap on his own


Then consider how many of the 50 million americans with NO insurance actually HAVE sleep apnea but we'll never see or hear from them hear since they will never even get a diagnosis ( again this doesn't happen to ANYONE in the UK

Then consider that the UK spends about a third per capita on health insurance relative to the US yet their longevity is about 2 years on average longer than the average american

[johnthomasmacdonald]

Oh judge nap, i forgot to add - if you are not happy with the level of health care provided by the National Health Service you are perfectly free to buy additional insurance on your own - at a cost WAY lower than what it costs in the US

[kaiasgram]

Could we please stick to responding to this first-time poster's request for help with his sleep and cpap therapy?

[kteague]

... i have what they call been compliant with cpap for the best part of 14 Months and no one would believe me when i said i was waking up as often as i was until i agreed to turn off the cpap machine at every arousal, once i presented the cpap machine to the sleep specialist so that he could see that i was indeed awake did he start to take notice. Stillo

Stillo, was the time of turning your machine off every time you wake up just for a night or two to show the doctors your pattern of wakings? Just asking because if you have a ramp feature on your machine, that would restart the ramp each time, really decreasing the amount time you are protected from events. If you are not using the ramp feature, disregard that comment.

Has there been any mention on your reports about limb movements? Even though my CPAP treatment was doing just fine, I still had a limb movement issue that kept me waking every few minutes. If you could determine through machine data that your treatment is indeed therapeutic for your sleep apnea, then methodically rule out other possible contributors to your fractured sleep. Are any of your meds known to cause sleep problems? It may just be that you have more than one issue to address. Good luck with sorting it out.

[stillo]

Hello again

Im sorry im new to all this asking for help and getting it but for me i have done everything that has been requested of me by the NHS Doctors, i have not had any caffeine for nearly 2 years i am diabetic and i have to watch what i eat so i believe i have a healthy diet i also have very good sleep hygiene . i turned off the cpap machine every time i awoke which at the time was about every 30-45 minutes i never ever get into any deep refreshing sleep, the ramp feature was turned off and i say was because my cpap machine was taken away from me 2 years ago due to the severe insomnia i am suffering and not being compliant.

The Medication i am taking at the moment does not cause insomnia this has been confirmed by the Hospital and by my own searches i am not under any pressure i do not suffer from stress i am happy and i have a very loving family life, in answer to one of the replies about Gerd i can tell you that sometimes i have actually vomited in my sleep which i can tell you is frightening i also suffer from sleep paralysis on a regular basis and i cannot ever remember having any dreams, all this has been reported to my Specialist who tells me its nothing to do with my insomnia. In my first post the that was the full report word for word from the Neurology department to my sleep Doctor, i can probably get hold of any other reports but that will take a while we have to jump through hoops here to get them and we have to pay for them which is not a problem. Thank you for your very interesting thoughts and i have every intention of going back to my Doctor this week and asking to see someone else.

Cheers
Stillo

[Todzo]

Hello again

Im sorry im new to all this asking for help and getting it but for me i have done everything that has been requested of me by the NHS Doctors, i have not had any caffeine for nearly 2 years i am diabetic and i have to watch what i eat so i believe i have a healthy diet i also have very good sleep hygiene . i turned off the cpap machine every time i awoke which at the time was about every 30-45 minutes i never ever get into any deep refreshing sleep, the ramp feature was turned off and i say was because my cpap machine was taken away from me 2 years ago due to the severe insomnia i am suffering and not being compliant.

The Medication i am taking at the moment does not cause insomnia this has been confirmed by the Hospital and by my own searches i am not under any pressure i do not suffer from stress i am happy and i have a very loving family life, in answer to one of the replies about Gerd i can tell you that sometimes i have actually vomited in my sleep which i can tell you is frightening i also suffer from sleep paralysis on a regular basis and i cannot ever remember having any dreams, all this has been reported to my Specialist who tells me its nothing to do with my insomnia. In my first post the that was the full report word for word from the Neurology department to my sleep Doctor, i can probably get hold of any other reports but that will take a while we have to jump through hoops here to get them and we have to pay for them which is not a problem. Thank you for your very interesting thoughts and i have every intention of going back to my Doctor this week and asking to see someone else.

Cheers
Stillo

Hi again stillo!

Please spend some quality time on my previous post this thread.

Others become distracted and distracting. I regret that for your sake. Please forgive us.

Some of us have our "urge to breath" control set too high. The changes that makes in the way metabolism occures in our body and in the upset it causes to our sleep, in my experiance, would likely be the cause of your symptoms. The constant pressure of CPAP tends to make us breath even more. Resulting events press the control even further upward.

I hope you do find a way to get good sleep!!

Todzo

[Sir NoddinOff]

My story (short version) - I was on CPAP about 3 yrs when I developed a seizure disorder. It turned out initial neuro thought there was some relationship with sleep and my seizures. It took several years for a good neurologist to decide we may never know for sure. Initially 2 neuro's sent me back to the pulmonoloist at the sleep lab saying they 'thought' my seizures were rooted in sleep, but did not know how to proceed.

Here's an interesting thread, plus there were several others on this topic about a year ago: viewtopic.php?f=1&t=80502&p=732539&hilit=+jerks#p732539 Search for hypnic jerks on this site.

[kaiasgram]

Stillo, no need for apologies -- all of us have started out with many questions, and most of us have needed more attention and help than our sleep professionals have been able to give us. This is why we're all here, so please feel warmly welcomed and ask away.

Can you clarify a point of confusion for me -- are you saying that you did have a cpap machine but it was "confiscated" from you because of "noncompliance"? If so, have you been without a cpap machine since then? And during the time when you were on cpap, did you have any way to know if the cpap was doing its job -- preventing apneas, keeping your airway open, etc.? Of course there are many types of sleep disorder besides sleep apnea and many possible reasons for your broken fragmented sleep, but one thing we know for sure is that sleep apnea is at least a piece of the puzzle. So I would want to ensure that the cpap therapy is actually working effectively and once that's established, investigate anything else that might still be affecting sleep quality.

Your description of fragmented sleep with multiple arousals and failure to attain deep sleep is the same story I've heard from people who end up being diagnosed with UARS -- upper airway resistance syndrome. This causes the RERAs that I mentioned in my previous post, and the effortful breathing is what causes all the arousals and makes it difficult to impossible to get into deep sleep. It may show as mild apnea or even no apnea on a sleep study. If you'd like to read more about it: http://doctorstevenpark.com/uarsthehiddensleepcondition