Does anyone else feel worse?

[risingfree]

Hi
Just found this place on a link from the pituitary foundation and I hope someone can give me some good news.
I have Acromegaly and Sleep Apnea. I've had both of them for years but the Sleep Apnea has just recently been diagnosed. I've been on a Cpap (ResMed auto) for a week now and I feel much worse than I've ever felt before.
I wake in the morning with a tight chest and a splitting headache that lingers all day. I also feel more tired than ever before. I could hardly function at all yesterday.
With that in mind I did not put the cpap machine on last night. Woke this morning with no headache, no pain in my chest and much less tired than I was yesterday or all last week on the machine.
That can't be right can it??
The Hospital today said, take it or leave it! I've taken it back but I'm scared to use it now.
I'm just so disappointed because I was really looking forward to getting a bit of strength back

Cheers
Mike

[Gary5370]

nice of your hospital to be so supportive for a start.
i would stick to your machine though, try loosening the mask a bit maybe thats whats giving you the sore head in the morning. ask your consultant for a different type of mask anything might help but dont give up on it. osa is a serious condition left untreated so you need to give it a fair try before you drop.
im sorry cpap isnt working for you. i too have difficulties with it but i persivere with it and slowly and surly its getting easier and better.

[verytired]

hi

i also have this problem that as of yet isnt sloved. i am being refered to a chest specialist as he thinks i may have sarcoidosis as my father and uncle both have it. im not saying that this is the case for you but other medical problems could be the cause of the headaches and chest tightness. but do try and persevere with the cpap it could be that your headache is the result of another medical problem which as only come to light because you are getting a good nights sleep.

chin up
vtired

[risingfree]

Hi all,
Thanks for the responses.
I do think there is something else going on here. Everyone says, stick with it but it's really not that easy when I feel so bad.
I used the mask again last night but I feel like sh** again today.
With the mask I feel like crap, without it I'm the same as I've been for years.
Stick with it or pack it in? I just dont know.

[James @ Intus]

Try and find a consultant at the clinic who is willing to put some effort in for you. Sounds like your chest is initially struggling to cope with the new amounts of air volume. If you have a really big chest, this is not unusual. Some obesity hypoventilation could be part of the mix you have going there, making CPAP therapy problematic.

You'll have to get the consultant to take a good look at things that could be involved. Maybe an initial lower pressure could help you ease in to it, but get a consultant's feedback on it. Say you are not willing to give up yet.

[risingfree]

Hi James, Thanks.
Yes I think this is a problem. I've only seen the consultant once before diagnosis and he tried to tell me I was depressed and probably didn't have a sleep problem. Since then I've only seen Nurses who have a set list of things to do for everyone.
The last one I saw told me I was sleeping ok and they could do nothing more for me. Take it or leave it!
I almost told her to stick it but in the end I took it back for another try.

I have Acromegaly and my sleep apnoea is directly related to that rather than from any natural occurrence. I do have a big chest and my 'tubes' are narrow and a little missaligned.
I also think that there is a pressure problem. The last three nights I've tried the mask but I'm woken up three hours in unable to breath properly. When I go to sleep the pressure is about 4-6 when it wakes me it is about 12-13.

I'm going to see my Gp next week to see if he will fight my corner for me. I think he will write to the clinic but whether or not I get to see the consultant from that is anyone's guess. I'll probably have to wait the obligitary 6 months!
aaarrrggghhhh!

Thanks again for the support
Mike

[James @ Intus]

Another idea, but with your complications you should really talk it through with them, is to try and sleep more upright, semi-seated if you like. This could reduce the burden on the chest a little.

[ashvaj]

Do not take things lightly.I also feel that you must consult.This could be a problem with your chest and capacity of breathing with a machine.

[brummy]

ditto

i have been on cpap for over two years, like you i wake up feeling like i have been on a good drinks session.[ i haven`t]. headaches, drowsiness,and a feeling of lethargy.i too feel at times when i dont use cpap i feel fresher.i have told the clinic and am still waiting another appointment, 7 months on.

[risingfree]

Hi,
Thanks for all of the above comments.
In the end, I've stopped using this because it was making me much worse.

I seriously believe now that the prescribing of this form of treatment is flawed. Yes, there is no doubt this works for some people but for some people there seems to be problems that can make this worse if not downright dangerous.

This was prescribed to me on a take it or leave it basis without any form of testing whatsoever. I believe it has caused problems to both my sinus and my lungs and I've not had a good day on planet earth since the first time I used it.

I will be discussing this with my consultants, both Endocrine and sleep, when the appointments come around but till then I won't touch this and I would not reccommend it to anyone without some sort of compatibility test.

[James @ Intus]

Trials are indeed ideal.

There is also a chance you were misdiagnosed to begin with. If you didn't have OSA then CPAP obviously wouldn't do any good. That's another thing to consider when you talk to your consultants. Or move to a splint like the SomnoDent, which can be a real saviour for those who really tried but didn't get on with CPAP (and really have OSA).

[Pedigaba]

Mike...I had a go at the auto adjust machine and had the same reaction as you. I wonder if your pressures are correct ? It took me a while to get used to my original machine but now am having better sleep , and dreams, than I've had for years. Ask your clinic to prescribe the same machine as I have so that the pressures can be adjusted manually (by yourself maybe ?) The headaches were typical of many apneas at night...mine were 25 per hour, so never did get much sleep. Just do not give up on the CPAP machine. It eventually works.....

[Martina]

Manual may be better

I have a manual CPAP machine - when pressure is 10 I am fine ,but I was put up to 14 at one point. This gave me the same feeling you have - tight chest etc.I thought I was going to go pop as I felt some of the air go into my stomach ( well thats what it felt like). I had the pressure reduced back to 10 and now I sleep much better. Good Luck - keep persevering - it is worth it.

[seasidegirl]

Better or not?

I really couldn't say if I feel better or worse for using the CPAP machine. it took at least two weeks for me to tolerate using it for any length of time.

I first went to my doctor because of waking up with a sore throat and a waking up choking in the night. I was also tired all the time.

Being a bit of a cynic, I strongly suspect the placebo effect is responsible for a lot of people who say they feel brilliant, it has changed their lives etc, etc.

I'll be interested to see the results on my card when I see the consultant.

So far I'd say I definitely snore less, haven't had a sore throat and I might be slightly less sleepy, in that I haven't fallen asleep on the train recently or had to go out of the room at work because of dozing off while looking at my computer screen. on the other hand, it's summer and I'm always less sleepy when the sun shines.

However, I am still very tired, have a slight ache in my chest, wake up in the night with a dry throat and nose and have had cataarh and a short bout of labrynthitus since I've been using it.

I suppose it's swings and roundabouts for most of us. I still think I was misdiagnosed!

[pavarottiman]

Feeling worse on cpap.

Dear All, I've been using a cpap for the last 5 years and have been speaking to my doctor about feeling as though I have been out the night before on the beer even though I haven't had a drop. I also complained about a dull pain on my rightside around my rib cage and had an ultra sound to check things out, the doctor said I had gall stones and a fatty liver and that was the cause of the pain and was told to adjust my diet etc, etc. The strange thing is that I went away for a long weekend a few weeks ago and when I got to my destination, I had left the mask for my cpap at home and ended up not using my machine for about a week. The pain in my side went away and I lost the feeling of having been out drinking the night before although I did after a few days feel a bit dozy. I have been back home for a few weeks and have been using my machine again and low and behold the pain has come back and so has the boozy head feeling. I am begining to wonder if the cause of so many people experiencing muzzy headed feelings and other aches and pains is due to the cpap causing deep dehydration which does not give rise to thirst?
Another thing that makes me suspect this is when using my cpap my urine is darker in the morning than when not using it. I have yet to speak to my doctor about it but don't hold out much hope about him understanding it as they tend to look down their noses if you self diagnose your symptoms, or my doc does.
Any thoughts and comments wold be gratefully received and sorry my story is a bit on the long side.
Regards
Alex.