UK advice please (PLMD new dx)

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
EricTheRead
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Re: UK advice please

Post by EricTheRead » Tue Nov 12, 2019 8:15 pm

rick blaine wrote:
Mon Nov 11, 2019 8:10 am
Most practitioners in the NHS now work to 5 or under, regardless of other conditions. Most of the regular contributors to this forum – and also the author of Sleepyhead – have better ambitions than that :) – and say 2 or under. As to wanting to sleep more, some people do find that, once they get CPAP to work well, they go through a period of sleeping more. But it is usually only for a period.
Fascinating. My doc said he wants people to have an AHI of 5.0 or less. Mine is typically less than 1.0, occasionally in the 1.0 range, he says he is not worried about me anymore.

I do wear my APAP when I take a nap. He didn't say I should, I just do. I figure sleeping and APAP go together, it needs to be a habit. I don't regret it.

Do I sleep better? Sometimes. After a month on the APAP, I returned to the doctor and he said, how are you sleeping? I said I get about four hours of sleep and then I am so sore, I wake up and have to walk around to relieve the soreness. He laughed and said, yes, that is the number one complaint I hear from new CPAP users. He said it is normal. So, I also get migraines - far fewer of them, I must say since using the APAP, which is a good thing - but those get me up. I'm not complaining, the fewer migraine headaches - down from four or five a week to two a week is worth it. Ten years of four a week and now I only get two? Its a godsend. I'll take it.
--> Less headaches, its worth it

JustBreathe234
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Re: UK advice please

Post by JustBreathe234 » Thu Nov 21, 2019 5:06 pm

So I had a bit of a disturbed night last night, waking a couple of times feeling like I needed to breathe in. I got up feeling terrible then had to go back to bed for a few hours. Still felt rough after the extra nap, confused and headachy. The Oscar report looks alot more 'eventful' than other nights but AHI was OK.

To those who understand these graphs; Do I need more higher pressure or could this be an oxygen issue? I've ordered a 2 night overnight oxymetry.
https://gyazo.com/69a1243967c0d87503bb14a2cf348f95
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rick blaine
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Re: UK advice please

Post by rick blaine » Thu Nov 21, 2019 7:10 pm

Hello again, :)

The first thng is: are you still under your new doctor's care? You said before that you were being loaned a machine for two weeks, and then would be evaluated. Where are you in that process?

Second, you have no events for two hours, and then you have clusters of events. And then after a break, events are clear again. Is that where you got up and moved about? Ie, changed position.

One possibility might be to increase the pressure – but with the EDS, it may be better to leave the maximum alone, and look for other explanations.

Sometimes clusters like these are a sign of temporary head/ neck mis-alignment – ie, from moving about in bed. And with a normal person, a soft neck brace works to keep the head and neck from falling into mis-alignment. (And you wear it with the machine running – it's not usually sufficient OSA treatment on its own.)

But I don't know how that might work with EDS. Do you have any contra-indications about things round your neck? Easy bruising, etc?

There are degrees of softness wrt neck braces. Some are all foam, with no hard edges.

Another clue to head/ neck mis-alignment is if the clusters happen some nights, but not others. And from what you say, this is just one night. Usually it's better to see if something happens over a few nights before calling it a change or a trend.

In any event, I go back to my first point – about being under this new doctor's care. Given the fact that you have EDS, and given the fact that you are in 'new treatment phase', I do think you should take your questions to your new doc. His opinion is what you are paying for.

Best.
Last edited by rick blaine on Mon Nov 25, 2019 10:14 pm, edited 1 time in total.

JustBreathe234
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Re: UK advice please

Post by JustBreathe234 » Thu Nov 21, 2019 7:55 pm

Hi Rik :)

Yes am still with new private doc for now, I have a follow up on Monday with his sleep tech who is pretty experienced/knowledgable. I may have upset her slightly as I asked for the overnight oxymetry (£300!) and then cancelled it as went via Hope2Sleep which cost £35 + delivery for 2 nights recording. Am awaiting that to arrive in next day or so which will be interesting. Anyways, may try and get my moneys worth and call the tech tomorrow and see what ideas she has.

The private clinic have loaned me the ResMed Airsense 10 until Monday and I now also have my own ResMed Airsense 10 For Her which just needs setting up. The private tech can monitor the loan machine remotely.

Yes I did get up and move around when the events stopped. That's a great suggestion the neck brace, although I wouldn't know where to start getting the right one for me. I wondered why I have some nights that aren't too bad at all then others like last night that are horrible. As far as I'm aware there aren't any particular contraindications to a neck brace. I am diagnosed EDS but not as bad as some I suppose. We are all different with the diagnosis, no 2 people the same.

I'm currently still pretty much attached to the sofa, feeling slowed mentally which is not nice. Really hoped for better things with the new machine but as yet early days I suppose. Also still have the oxymetry to do. Is there an overnight oxymeter that is recommended to save costs in future?
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JustBreathe234
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Re: UK advice please

Post by JustBreathe234 » Mon Nov 25, 2019 5:28 pm

Fast update.

Turns out I may have another sleep disorder - Restless legs or similar which is also disturbing my sleep. I'm going to get a referral to the clinic on the NHS then need polysomnography. This was determined from the oximetry which showed rapid heart rate throughout the night and disturbances. Good test!
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rick blaine
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Re: UK advice please

Post by rick blaine » Mon Nov 25, 2019 5:42 pm

Restless leg syndrome. Kteague of this forum is a great source for advice on this.

FYI, the term 'polysomnography' is used by some people in the NHS to refer to both the three-channel home sleep study and the 16-plus channel over-night stay in a hospital's sleep lab.

Obvs, it's only the latter which can really look at RLS.

WakeWalker
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Re: UK advice please

Post by WakeWalker » Wed Nov 27, 2019 10:29 am

Hi there, I'm sorry that I haven't read all the replies to this post, but there are over a thousand. Really sorry if this repeats anything someone has already said, but I thought my experience of East Grinstead would be useful to you. Created an account to reply to this...

I started using an APAP about 6 weeks ago, having done a sleep study at the clinic in East Grinstead, and I encourage you to get yourself referred there if you can, even if it means a wait - I didn't have a long wait.

So, after I filled in the sleep questionnaire they called me up and told me I should come in the following day because current guidelines say they had to see me within two weeks because my sleepiness score was so high - a tip there! (I didn't do it on purpose to get a quick appointment, at this stage I wasn't worried because I didn't know what I had, but being asked "can you come in tomorrow?" by the NHS was alarming! I can't get a next day GP appointment for love nor money.)

I did the overnight sleep study and got an appt to go back and discuss the results with the dr/consultant within a few days (less than a week) and was fitted for a mask a few days later.

So, it was incredibly quick. I can't recommend them highly enough on that score.

It may also interest you to know that I had a scheduled follow-up with them about how my therapy was going last week, by phone, which was my choice (6 hour round trip for me :shock: ) and I told the woman I spoke to that I had adjusted the humidity, the temperature - not the air pressure, to be fair - and she was fine with that, in fact she was great, listened to me, gave me advice, and following that I'm no longer getting the daily headaches I was.

Good luck, I hope you can get to see them. I haven't taken them up on it, but every person I've spoken to there has said "call us any time you need help".

(Again, apologies if my response is redundant! I read your "fast update" and thought this might still be relevant for you, or others here in the UK.)

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zonker
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Re: UK advice please

Post by zonker » Wed Nov 27, 2019 12:21 pm

WakeWalker wrote:
Wed Nov 27, 2019 10:29 am
Hi there, I'm sorry that I haven't read all the replies to this post, but there are over a thousand.
welcome to the zoo!

not to be pedantic, but that's over one thousand VIEWS. replies before this one is fifty one. still, a lot to plow through.

in any event, my observation takes nothing away from the value of your post.

please carry on!
"Age is not an accomplishment and youth is not a sin"-Robert A. Heinlein
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rick blaine
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Re: UK advice please

Post by rick blaine » Wed Nov 27, 2019 12:41 pm

Hi WakeWalker,

It's not 1000+ previous replies to an original post, it's 1000+ views of the thread.

As to your being seen quickly, there are reasons other than severity. Under NICE guidelines, the recommendation is that patients who drive for a living get their first appointment within four weeks.

One other thing: if you have anything to say or ask about your own treatment, it's better forum etiquette if you start your own thread.

JustBreathe234
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Re: UK advice please

Post by JustBreathe234 » Wed Nov 27, 2019 2:58 pm

Hi WakeWalker and thanks for stopping by. :)

Not sure if you're aware but I was originally seen and diagnosed by the sleep clinic at Haywards Heath (cannot recommend) where they missed the restless legs dx and I never got any follow up for the OSA. The private clinic is run by the doctor & a senior tech from the East Grinstead hospital and yes I'm now just waiting for the clinic letter to get to my GP and then I can go and be asked to get referred to them on the NHS. I got a really good feeling when I was there despite the fact they apparently look after 19,000 patients they at least know their stuff! My previous clinic was just one Chest doc and one nurse and very inadequate probably for the amount of people they cover baring in mind they both do other things too!

I went private for speed as I was in a mess having been through major surgery and my CPAP wasn't working properly and I needed alot of supplemental oxygen - not to be recommended. I saw the tech for 2 week follow up after they loaned me a machine and she had me wait to see the Dr after she saw my oximeter study which was a bit wild. They then realised how bad I am (restful sleep wise) as those symptoms of confusion, energy etc don't show up in a standard sleep questionairre.

For the restless legs I have to get off the antidepressant I am on which is likely making it worse (swear that was just wrong treatment for a sleep disorder!) and get my iron levels up well. Depending how that works then the full monty sleep study and possibly medication. I slept 10 hour slast night and could have still slept on a washing line today. :roll:

I'm assuming you got a ResMed machine? That seems to be what they favour. Karen the tech was horrified at my old ResMed Quattro mask. lol Hoping to get a new shiny mask on the NHS!

I really appreciate the affirmation about the guys at East Grinstead, I've been more than neglected and let down by the previous clinic so have everything crossed for a speedy referral although I have treatment underway now at least.

Hope your treatment is going well. x
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JustBreathe234
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Re: UK advice please

Post by JustBreathe234 » Wed Nov 27, 2019 3:09 pm

PS How did you end up being referred to East Grinstead if you're 6 hours away? I'm a 40 minute drive! I know they cover a big area but 6 hours is mad. lol Good for you.
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WakeWalker
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Re: UK advice please

Post by WakeWalker » Wed Nov 27, 2019 4:32 pm

I rely on public transport, so although I live in Kent, it's a train and a bus, then another bus. Only one bus an hour... It's 3 hours each way rather than 6 hours each way though (6 hour round trip), and most of it's waiting for buses ;)

Glad you are getting treatment already, and I really hope the clinic in East Grinstead lives up to expectations. (Slightly off topic, but If you arrive early for your appointment, I discovered there's a fantastic bookshop on the tiny high street with sofas upstairs you can sit and read to kill time.)

Yes, they gave me a ResMed full mask APAP machine with humidifier and heated tube. It's OK, the data from it is a bit disappointing, very basic, but I'm down to an average of 1 apnoea an hour, so I'm not complaining!

...ah yes, 1000 views not 1000 posts. Oops. Not a big forum user, clearly. Thanks for telling me so diplomatically, zonker :) Now I think about it, over a 1000 replies is a bit unlikely.

JustBreathe234
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Re: UK advice please

Post by JustBreathe234 » Wed Nov 27, 2019 4:48 pm

Just wondering if they left the data card in the machine? It's top left under a flap. If they did you can download software called OSCAR, there will be a thread about it here somewhere and then see all your data. Other than that there's another site you can register with that gives more basic but non the less handy info. https://myair.resmed.eu/Default.aspx?ur ... 7A43492B45

Could probably buy your own data card if there isn't one there already.

I'll pop into the book shop then for a break. My son dropped me off on my first trip and toured the hospital. It was the Guinea Pig hospital in WW2 so quite interesting.

Very dedicated of you traveling on public transport that distance. They seem used to people travelling from afar and I'm assuming post out items or make phone follow ups as they can see all your data at the clinic via the web. Really handy!

Take care. :)
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WakeWalker
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Re: UK advice please

Post by WakeWalker » Wed Nov 27, 2019 5:07 pm

There's a data card!! Thank you so much for this advice! They probably told me at the clinic, but nothing went in back then. I assumed these were just basic machines without that option. Wow.

Sleep well x

JustBreathe234
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Re: UK advice please

Post by JustBreathe234 » Wed Nov 27, 2019 5:16 pm

They're probably the best the NHS is handing out tbh, especially with the humidifier and heated hose. Not many folk get them straight off the bat.

You're very welcome for the data card advice. By now you're probably knee deep in downloading OSCAR and finding out your stats. LOL! I like looking at them every morning for reference, no doubt the novelty will wear off in time.

Have fun. x
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