At my wits end

[witsend]

I discovered this forum after getting to such a low point it was time to seek some help. I am at a point where I am seriosuly concerned about my health. Please xcuse the length of this thread, but It is best I paint a full picture, in order to get the right advice.

My BackGround:
I am a 37 year old male from London, I have suffered from depression with suicidal tendencies most of my life, this in turn led to anxiety and then onto agoraphobia. Inevitably the agoraphobia led to obesity due to not getting out of my home. Over the last year or so I have had serious sleep issues. Mentioned to the doctor many times, but nothing was ever done about it, Doctors just blamed the depression.

Eventually My G.P put me forward for surgery in regards to my obesity, in the run up to this, seeing the consultants, I was then referred to the surgeon. The surgeon was concerned a little in regards to my sleep and respitory, so I was sent to have tests, the first being one where I had to take home a monitor that monitors the oxygen in my blood etc, little flashing thing that pegged onto my finger. The result was that I was waking over 100 times an hour, well this explained why I have no energy at all, and as soon as waking, would fall asleep during my normal activities. This is making my depression much worse.

I was then loaned a Cpap machine and nasal mask, machine is adjusted by my consultant and is not adjustable as locked. no joy with this as once asleep I would as normal breathe through my mouth, as soon as this occurs I would struggle to breathe as the cpap was blowing a force 9 gale from my nose straight out of my mouth, the last occassion this happened, simulataneously I had what I can only call a night terror, whereas I am aware of what is going on, but in a state or paralyses, unable to shout out, move etc, although it feels as if I am. With this last occasion I was unable to remove my mask and seriously thought I was going to die through not being able to breathe. That was that, not using that mask again.
Back to the respitory department, I am issued with a full face mask. I thought this would solve the issues and daydreams with the thought of getting some sleep. Not the case unfortunately, The cpap blows my cheeks open so I feel like a hamster laden with stored food, So I set the machine to increase the flow gradually, hoping I will be asleep b4 it reaches full pressure. This did not help, but due to being totally exhausted fall to sleep. Within the hour I have ripped the mask off, either through being unable to breathe or due to the fact my tongue feels as though it is welded to the bridge of my mouth, I can feel the tumbleweed crossing my mouth, and hear the sound of a camel in the distance. Regardless, I try to carry on, thinking things will improve, sadly they have not.

If I do not get on with the machine, how will I ever get any sleep?

I did have some hope, thinking that once I have had the gastric Bypass operation, after losing some weight things will get better, well this scenario has been going for a year, backwards and forwards to consultant, because I suffer depression they did not want to perform the Op, even though my obesity is one of the reasons my depression is as bad as it is. Eventtaully the consultant agrees to the Op,after much complaint from myself. Next you have to see the surgeon, first time I was sent away to decide what Op I wanted, Band or Bypass, since then each appointment with the surgeon is cancelled at short notice, this puts me to back of queue again. I am not even on the waiting list for surgery, so there is no light at the end of the tunnel, just more and more time goes by, I get heavier and unable to do more. I am now at the point where I can walk only a 100 yards or so before I can no longer walk due to lower back pain (Apparently caused by weight) no help or cure, just told I will be like this until I have lost the weight. Personal hygeine is now extremely difficult, If I bath, I struggle to get out again, even the simple things like wiping your rear after a toilet is a struggle, all this is set to get worse. The worse the combination of all the things above gets, the worse I feel. I am at the point now where I just want to end it all. I have no existence, I am becoming a burden, what does not help is I am a very private person, basically I dont do people, the thought of getting to the stage where I have to have constant care scares the crap out of me, I know I wouldnt be able to handle it, would refuse and then go into self destruct mode. The future looks very bleak. AT prsent the only reason I am still here is because I know talking drastic action would hurt the few people I know, but this is wearing thin and I feel I should just consider myself for once and do what I feel is right for me.

I know this thread is not totally Cpap orientated, so if you need to move it, please do so.
I also know some may say I need to go and see a phsychiatrist, this is no help, the shrinks we have where I live are totally useless. Because I failed to attend some appointments I was signed off their books......this is even though they knew I had issues getting out due to the agoraphobia. When I have seen them they have just prescribed pills that do not work for me, often I believe as the dose is too small for me due to my size. The last time I see the head shrink, I was told I was born with depression and had to just deal with it, but then previous to that I am diagnosed with behaviour issues amongst other things. They cant even get the diagnosis right and stick to it.
I did have a good GP, but she retired, I have little faith in doctors now, they are not like they used to be, not understanding and as stated, failed to even diagnose the sleep apnoea.

Once I used to plan ahead, thinking what I will do when I am on the road to recovery, thoughts of returning to work, getting a job, being independant, all I can see now is more dependance, dark thoughts and DLA.

[James @ Intus]

Hi and welcome to the forums.

Long story indeed and complex. It sounds like you could be on the higher end of being overweight and that in itself makes sleep apnoea very complex. There could be heart problems leading to central sleep apnoea, daytime hypoxia and a lot more.

We do a lot of sleep tests but at BMI well over 40 we tend to advise to go back to the NHS for a full polysomnogram. Only when the cause is determined with accuracy can the right treatment be found.

With very obese people CPAP might make things worse and often BiPAP is needed. If all you've had up till now is the finger test, I don't think that is sufficient in your case. It is suitable for most people but not for those with more extreme weight difficulties. Perhaps you can stress this with your consultant, saying you want an overnight Polysomnography with a view to determine whether you may need BiPAP instead.

As you are in London, you have a good choice of very good sleep clinics. Royal Brompton is one I can recommend.

With your depression and phobia it won't be easy of course, but you'll have to find a way to take action. Taking care of the sleep apnoea will almost immediately give you a much better outlook on all the other issues as many here on the forum can confirm.

And if the phsychiatrist wasn't a good experience, perhaps a NLP practitioner could be worth a try.

[witsend]

Hi
Thanks for the advice james, I am due back in a couple of weeks and will ask for a Polysomnography.

What I am finding now is that at times my limbs drift off before I do, I feel them going into a state of paralyses, then I drift off shortly after. Its horrible when I have a cup of tea in my hand at the time, or a cigarette, as I am aware of what is occuring, but helpless to act, is this all part of Apnoea?

Another thing that has gone on for a long time is finding myself sitting on the edge of my bed, both feet out as if I am about to get up, but I remain in this position, head slumped, dribbling down my chest, on most occassions I fall, either backwards which hurts my back as at last second attempting to stop the fall, or in other cases I fall to my knees or dirctly forward, often hitting the radiator or the cabinet. I feel myself going, but my body fails to react. Again, is this all part of it?

Before I was diagnoses with osa, I used to think my sleep issues were due to me living very close and in between two massive TV masts, covered with all sorts of other transmitters.

My surgeon appointment was cancelled yet again, on the day before, the NHS excuse of the week........Restructuring! Twice in a row now

[James @ Intus]

Hi
Thanks for the advice james, I am due back in a couple of weeks and will ask for a Polysomnography.

Given what you told us, that's definitely a good idea.

What I am finding now is that at times my limbs drift off before I do, I feel them going into a state of paralyses, then I drift off shortly after. Its horrible when I have a cup of tea in my hand at the time, or a cigarette, as I am aware of what is occuring, but helpless to act, is this all part of Apnoea?

No, at least not the usual type. Perhaps your blood is so oxygen starved your muscles simply fail. But that's me guessing and I'm no doctor. A Polysomnogram will help to see what's going on with your muscle activity.

Another thing that has gone on for a long time is finding myself sitting on the edge of my bed, both feet out as if I am about to get up, but I remain in this position, head slumped, dribbling down my chest, on most occassions I fall, either backwards which hurts my back as at last second attempting to stop the fall, or in other cases I fall to my knees or dirctly forward, often hitting the radiator or the cabinet. I feel myself going, but my body fails to react. Again, is this all part of it?

No, definitely not the usal OSA. Perhaps more like narcolepsy.

Before I was diagnoses with osa, I used to think my sleep issues were due to me living very close and in between two massive TV masts, covered with all sorts of other transmitters.

It may all be adding up, check this as a possible solution for this one.

[witsend]

I asked for the Polysomnography, this was declined, apprently the results speak for themselves in regards to my Oxygen test thing, meaning the clip on finger overnight as well as them taking blood from my ear.

They sent me home with a trial machine, one that automatically sets, with this they would take the readings and input into my other cpap machine.

Still no joy, for love nor money can i get on with the machine, I can sleep with it when ramping, but wake not long after.

I have a blood test tomorrow, which I am 99% sure will come back proving I am type 2 diabetic now, I had all the symptoms before except for the thirst, dry mouth and excessive drinking/urinating, especially at night.

So what with getting no sleep due to osa, to top that I now get up, up to 12 times a night to wee.

I did aske for help from my GP, GP wrote to my professor of respitory medicine. Drugs are a no no as can be dangerous.

Now it looks like my obesity Operation maybe affected, The professor above states it is unlikely that the anaesthetist will be happy to put me under, amongst other important aspects of cpap.

If i continue to fail the cpap, then what next? feels like i will just be left to continue this struggle and get nowhere

[James @ Intus]

If there are signs of OSA but you don't get on with the gold standard therapy, most clinics would re-evaluate and consider alternative diagnosis. That can only happen with more in-depth studies, with polysomnography at the top end but a repiratory multi-channel study in the middle of it (yields more data than pulse oximetry alone).

If they deny you the opportunity to investigate further, there's little you can do. I'm not a doctor but from what you say, I'm not convinced it's just OSA. That, in my opinion, warrants a more in-depth sleep study.

You can get these privately, the London Sleep Clinic does Polysomnography, we do multi-channel respiratory studies as well as finger pulse oximetry. If you want a second opinion and have the funds, that could be a way forward. Get more data yourself. Only then can you draw a better picture about what type of treatment is correct.

But that's just my opinion.

CPAP aside, there's also Oral Appliance Therapy with splints like the SomnoDent MAS. It's a great alternative for those with OSA who can't tolerate CPAP. But it's no good if it's not OSA!

[witsend]

Private funds is not an option unfortunately, to be honest i currently feel like bluffing and saying that I get on with the cpap so I can have my operation for the obesity. Inevitably the op will help, obviously my weight will decrease, hopefully aid the possible diabetis amongst a whole lot of other obesity related ailments. I know this will put me at risk, but then remaining in limbo will do the same, a bit of a catch 22.