Well aren't you the lucky Duck !



Debi

I've been on a CPAP machine for 15+ years. I asked my dr for a prescription for new mask and such and since he wasn't the one that originally dx'd me he looked through my records and saw that I had not had a sleep study done since the original.....I didn't know you are suppose to have a study done every 5 years.....or if I did know I forgot.

So I started whining and moaning about having to do the sleep study again and he was like, you can do them at home now, and I was like Whaaaat ? WOW so cool until he said that if the home kit showed too many problems I would have to go back into a study. Not cool since my original study wasn't great on the results. I'm on 15 lbs pressure and have to use a mask.

Just wanted to add my experience. Hope you get the home kit and it works to dx you on the spot !

Debi from Georgia

Is the home kit self-administered?

I have read about having it done at home, but it said a technician comes out to your home and spends the night, instead of YOU going to the sleep study center.

Would a home kit be reserved only for those already ON a mask and used as a follow-up?

Or can it be used for an initial diagnosis?

I haven't opened the box yet but when I do I will let you know. It's self administered I do know that. I guess they will give me details on where to send the disc for whatever is in there to take the readings.

Not sure if they will let you use it the first time around or not. I was so happy that I didn't have to go in for a sleep study right away I didn't ask any questions....lol

But it the results are at a certain level I'll have to go in for a study. And with my luck dear Hope, and you know my luck, I'll have to go in for one. It wasn't a big deal just annoying mostly. They were very nice people that worked with me. I then had to go back in 2 weeks later for them to determine what pressure I needed to be on at home. Mine is 15 lbs of pressure and I think it goes to 20 but I'm not sure. If I take my mask off while it's blowing it's very powerful.... I can hold it at arms length and it will blow my hair everywhere !

After I got the machine for home and it was time for bed Bubba would say "come on Freddy let's go to bed" and I'd say "Freddy didn't wear a mask...Jason did"....just a funny memory of my sweet Bubba.

Debi

Dear Debi,

Let's hope you have better luck than your normal and you won't have to go in for additional testing. Let me know if the kit holds everything one would need that is NOT already using a mask.

I have no aversion with going in for a study but since I sleep on my stomach, I am not sure how useful the study would be if I have to sleep in another position. I would never get to sleep and if I did, I would never get into a deep sleep or one that would be useful.

That is my biggest concern. I would spend the entire night tossing and turning and they will never know if I stop breathing in my sleep as I would never get into a real sleep.

There are some other minor issues but nothing that I would have a real objection to going to the sleep center.

Another concern is nocturnal trips to the bathroom to empty one's bladder.

If someone has to get up during the night for that reason, do they have to remove all the electrodes so you can use the facilities?

Some nights I can sleep through the night but others are interrupted with trips to empty the bladder.

I know these questions are for the SLEEP DISORDER forum, not the PN forum on which I am posting but since the topic came up here, I have asked the questions, here. Sorry, I did not mean to hi-jack this thread.

This description of your pain describes mine to a tee - only mine also affects my hands and face. For me I've found that all the tests have revealed not a lot apart from confirmation that I have a connective tissue disease. I hope my doctors are right to assume it's benign but it certainly doesn't feel this way to me. I haven't found anything that helps yet and I have tried food eliminations, suppliments, cutting out sulphates in toothpaste because I also have this in the front of my mouth and nose now.

The doctors are implying that it's psychosomatic but I don't believe this for one minute. I'm being told to accept that I will have it for life and therfore have to learn to live with it. This seems to me to be a counsel of despair - if I knew I'd have to live with it at this degree of severity forever more then I'd take all my sleeping pills and have done. And yes mine feels as if it's in my bones too - foul thing it is!

Sorry I'm not able to offer you advice or give you something more positive but I think that it needs to be investigated and treated at source and I personally won't rest until mine is.

Hi Mat52

Hope you're doing okay - settling into your new home on the mainland?

I have to agree with you about doctors implying chronic pain to be psychosomatic. This seems to be becoming a more prevalent opinion. I just about 'spat the dummy' a few days ago when I read this article in the Health News Headlines:
http://neurotalk.psychcentral.com/thread228049.html

This psychiatrist appears to be so ignorant and dismissive of the severity of some types of chronic pain that he assumes they can all be alleviated without the use of medication. Then again he may just be trying to sell his yoga book!

In some ways the switch to "it's all in your head" attitude may be an over reaction to the over prescription of narcotics (in the US at least). Again doctors trying to minimize work and shift the cause back onto the patient (all while still collecting a hefty fee )

In regard to your face pain I heard something on the news today about studies being done using the hormone oxcytocin (in nasal spray form), to relieve some types of migraine headaches (on the trigeminal nerve). Found a link to the story:

http://practicalneurology.com/2013/0...-for-migraines

Apparently the company investigating this is planning on doing studies to treat TN as well (read bottom of article). Hope this might give you another option to discuss with your neurologist.
All the best - bluesfan

Bluesfan thanks so much for this - very interested indeed. I started a thread myself after writing this comment. Being off island has its pluses - not least all the beautiful trees in their Autumn splendour.

I am no longer under a neurologist's care so am back to square one in this regard unfortunately. The last one describes my stroke like episodes as "functional neurological episodes" - which sounds like a fudge of a non-title to me! So your link is very interesting but I somehow doubt that this spray is going to help me much up here in Scotland. Even my new rheumatologist seems to be hedging but I haven't received his letter yet - 9 to 11 weeks typing backlog I'm told. This is the state of affairs our NHS is currently in so I agree entirely with you about economics being another reason for why they are so enthused now with relegating symptoms to "all in the mind".
Cheers, Mat