Help Desperately needed please

[stillo]

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

[Sheriff Buford]

The first step to treating sleep apnea is to take a sleep study (if not seeking treatment for it). Normally (but not always), this will require two sessions. The first session is to see if you actually have sleep apnea. Be ready for around 38 wires to be hooked to your body. If the first session indicates that you do or do not have sleep apnea. If you do, you will be scheduled for a second session to determine what type of cpap treatment will treat the apnea. You seem to have to symptoms, but you need to know what the severity is. Tell your doctor to prescribe you a sleep test and get back with us...

Sheriff

[stillo]

Hi

Thank you for your reply, i have already had all the wires attached to my head chin cheeks and throat and that is what shows an abnormal sleep study, i have sleep apnea (only Very Mild )but due to something waking me up multiple times throughout the night i am unable to tolerate the cpap machine, unfortunately for me no one can tell me why i never complete all stages of sleep, the cpap machine makes thing much worse. i have also had a Mandibular Advancement Device Made but once again i have been advised not to use it due to it causing TMJ, looks like i could possibly be unable to get any relief from this sleep disorder, this has now been going on for 5.5 years thank you for taking the time to reply

Regards
Stillo

[herefishy]

I guess sleeping pills would be ruled out? How about tranquilizers?? For panic attacks?

[chunkyfrog]

Do what you can do (use cpap).
Either the rest will follow, the doctor will have to concentrate on other causes/solutions;
--or a DIFFERENT doctor may be smarter than the one you have now.
I have had to fire two doctors, because they were not addressing my problems.
Many have changed medical providers for this very reason.
Q: What do you call the guy who was a "D" student in medical school?
A: "Doctor"

[miltown]

I was diagnosed with sleep apnea a little over 2 years ago and since then i have been to 4 different ENTs. ENTs 2,3 and 4 completely disagreed with what ENT 1 had recommended to me as a course of action. Point being - always, always get a second opinion and realize that different specialists have different levels of sleep medicine knowledge. You are your own best advocate - do as much research as you can and even travel if necessary to see the right doctor(s).

[kteague]

You do sound like you desperately need help, and if your sleep apnea is untreated, it's understandable. It may take some time to get to work through some of the details, but let's start where we can. Insomnia can be so very frustrating. For those with sleep apnea, first for some it's poor sleep dealing with untreated apnea, then starting CPAP use introduces new and sometimes uncomfortable sensations so sleep may not be so great especially at first. Try to think of this as a marathon, not a sprint. The race is not about who "succeeds" quickest. Slow but steady progress will get you to the same place.

There's several questions I have but I don't want to bombard you with too many. Can you post copies of your sleep study report? When I've been on overload it has helped to "bottom line" things. (I can be the queen of excuses and rationalizing things.) Here's a bottom line - If one meets the criteria for a diagnosis of sleep apnea, it needs to be treated. How that looks may be different for different people, but something needs to be done. Seems prior efforts haven't worked for you, and you are asking a lot of your body and mind to force it to keep functioning at a deficit.

A sleep study is a snapshot of one (usually miserable) night in a lab. It cannot tell you if every night at home in your comfortable and familiar surroundings is like that night. When you are relaxed at home, it's possible (can't say for sure) that the evidence would be much more convincing. If your sleep study recommends CPAP, I would suggest you try it again. My first time I made it a few months then gave up because I was having trouble with it and my doctor wasn't helping me. The support and words of wisdom from experienced users here helped make my restart on CPAP successful in the end, though it was not quick and easy. Early on when I would wake up, I simply HAD to take off my mask. Couldn't tolerate it on while awake for even a few minutes. Funny, but at some point that all changed. For years now if I wake up I can just rest peacefully using the mask and machine until I fall back asleep. At one time if someone had told me I'd one day reach that point I wouldn't have believed them. You might be surprised as how different things look after some time and persistence.

[Sir NoddinOff]

You've already got several good suggestions from this forum, so congratulations on that. Only when you're ready, I suggest you talk about how you live your life. We may be strangers on the internet to you, but there could possibly be lots collective wisdom on this forum that can help you. Tell us about your CPAP equipment by filling in your equipment profile. What are your meds, tranqs, Z-meds, benzos, diabetes, anti-depressants etc? Alcohol habits? Caffeine usage. Diet issues (sugar, fatty foods, excess carbs) Exercise efforts? Body type and weight (this is a tough one to tell strangers, I know, so skip this if you're not comfortable). I'm probably missing something but others can target in on specifics. What have you got to lose???

I guess what I'm saying is your doctors are drawing a blank, but I know you'll get lots of support from this forum, some may be great, and some not so great, but at least you'll get feedback and that will get your brain mulling new suggestions. Good luck taking this first step

[johnthomasmacdonald]

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

[stillo]

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, 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. I was kept in Hospital overnight and videoed he agreed that i did wake very often, i then had all the wires attached to my head for 24 hours and as you can see from my first post i have very fragmented sleep. I am not nor have i any need to exaggerate my sleep issues and here in the uk getting hold of any reports is virtually impossible.

I have been prescribed sleep medications and anti anxiety medications unfortunately they had no effect whatsoever and here in old Blighty getting them for more than a week is not possible at all a Gp will give you no more than seven days due to addiction, so for me it looks like Cpap will not work, there is no explanation for the amount of awakenings i have and there is not much help available in the UK, Thank you for your time and help but as the Specialist says i will just have to live with it there really is not much more i can doi was hoping that maybe there was an explanation for my multiple awakening

Cheers
Stillo

[johnthomasmacdonald]

Stilo, I also normally live in the UK, in Cambridge - can you get a referral to the papworth sleep clinic there? I'd call them and ask them how you can get seen since you are not getting any treatment from wherever it is that they have seen you already - you want to be seen at a research facility http://www.papworthrssc.nhs.uk/sleep-services.php

[kaiasgram]

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, 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. I was kept in Hospital overnight and videoed he agreed that i did wake very often, i then had all the wires attached to my head for 24 hours and as you can see from my first post i have very fragmented sleep. I am not nor have i any need to exaggerate my sleep issues and here in the uk getting hold of any reports is virtually impossible.

I have been prescribed sleep medications and anti anxiety medications unfortunately they had no effect whatsoever and here in old Blighty getting them for more than a week is not possible at all a Gp will give you no more than seven days due to addiction, so for me it looks like Cpap will not work, there is no explanation for the amount of awakenings i have and there is not much help available in the UK, Thank you for your time and help but as the Specialist says i will just have to live with it there really is not much more i can doi was hoping that maybe there was an explanation for my multiple awakening

Cheers
Stillo

Welcome Stillo. Don't go away yet. It is not time to conclude that there is nothing more you can do. Of course there is an explanation for the number of arousals and awakenings, even if you and your doctors don't know what that explanation is yet. Is there really no way to get a copy of your full sleep report? What you posted in your first post, is that a summary report from your sleep study, or is it what you recall the doctor telling you?

If you have a cpap machine that records and stores information (besides just how many hours you've use it), there could be some clues in that data which could be a starting point for taking more control of your sleep health. If you post your make and model of machine we could begin helping you with how to access the data and take a look at apneas, mask leaks, and things that could be affecting your sleep. For example, have you heard of RERAs? Respiratory effort related arousals -- they don't turn into full blown apnea events but they cause arousals from deeper stages of sleep and prevent a person from getting adequate deep and unbroken sleep. Many doctors do not pay attention to this condition. But it can wreck your sleep. There might be some clues in your machine's memory that could be accessed with easy to obtain software -- depending on the particular machine you have.

There's so much information that's missing from this picture, at least as far as we can tell at this point. I encourage you to stick around here and let the forum help you out. I believe you when you say that you've been compliant all this time, but have you actually been able to monitor your cpap therapy during this time? If not, then you've been flying blind for over a year -- there may be a lot you can do for yourself and there are knowledgeable willing people here who will be happy to help.

[Elle]

Are you drinking a lot of tea or coffee?

[Judge Nap]

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???

[herefishy]

Oh, but it's all free!