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Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
#1
Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
So, I'm 23 years old, male and was diagnosed with Central Sleep Apnea late November through the NHS home sleep test. I live in England.

I had all the typical symptoms. Waking up to pee 6-7x a night, tiredness, fatigue, etc. Completely wrecked my life. 

After getting a home test through the NHS, I was told by my consultant that I had Central Apneas but only in the first hour of sleep (study was 4 hours). Very few obstructions. He said the hospital didn't have ASV but that he would offer me a trial of BiPAP,  because by symptoms were severe. 

Well, weeks go by and he ends up transferring my case over to a Specialist at a bigger hospital. The new consultant tells me that he wants to do his own tests and puts me on waiting list for the sleep study. Fair enough I guess. But he then tells me the waiting list is extremely long (the waiting list for first hospital was fast). 

So I ask him whether I could at least have a trial of BiPAP in the mean time because I'm suffering, and he refuses. I was devastated. I begged him but he did not budge. He did however say that "if the first hospital want to give you BiPAP, then I will not stand in the way". 

So I call back the first hospital and tell them what he said and ask for a trial of BiPAP. And they refuse, saying they will listen to his advice. I then tell them could I at least have a prescription for BiPAP so I could buy one privately, and they refuse that request. 

I am so hopeless right now. I am thinking to ask my GP to refer me to another hospital.. my hope is that I'd get a hospital which see the results of my first study and offer me a trial of BiPAP in the mean time. I don't even mind if they ask for another sleep study, just as long as I could get a trial in the mean time. 

I don't know what to do??? Should I go to a private doc? That will cost me. Please does anyone have advice.
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#2
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
For those unaware, NHS is free so the machines they would give are also free. So me going private would mean forking out thousands.
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#3
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
I'll defer to others that live in England on healthcare. If I'm hearing correct, you had CA pretty much only and little obstructive. Any BPAP that is not ASV or Pacewave as in a BPAP not having backup breath rate will send your CA up not down and not effectively treating, so be aware. Best answer is ResMed ASV or Pacewave. An APAP would be better than BPAP like a VAuto, again due to almost all CA you're stating.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
PS if you look at ResMed machine comparison charts, it'll state ASV treats CA and no other can do it as good.

Here's ResMed statement on ASV
AirCurve 10 ASV
Leveraging adaptive servo-ventilation (ASV) to target a patient’s recent minute ventilation, the AirCurve™ 10 ASV offers truly personalized therapy for obstructive sleep apnea (OSA), central and/or mixed apneas and periodic breathing. Auto-adjusting pressure support is designed to treat central breathing disorders, while auto-adjusting EPAP is suitable for upper airway obstruction.

ResMed ASV
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
APAP is better for Centrals than biPaP? That's very interesting. Where did you get that from?

That might help me as APAP is easier to get.

Also I have read mixed things about BiPaP for centrals. Some people have said it helped while others said it made it worse. CPAP definitely seems to make it worse tho.
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#6
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
By my own long difficult path to ASV. CPAP to BPAP to ASV with months between and sleep study and titration for each. BPAP without backup breath rate will be worse as the pressure swings, PS as well, will be very bad if it's close to my own experience. AND very bad is an understatement.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
If you truly have central apnea, neither an APAP nor a bi-level machine will treat your condition. I think what Dave was referring to is the fact that the extra pressure support that a bi-level machine can provide can induce additional central apneas in some people.

But I think the experts here might want a look at your sleep study. Central apnea events are not uncommon during the period when your body is doing the neurochemical hand-offs between waking and sleep. Any chance you can get a copy of the study report and post it here, after removing personal information?

Is the additional study you're waiting for an in-lab study or another home study?
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#8
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
Yes all would be accurate involving CA and machines. If there are significant CA on the sleep study, nothing but ASV will help. Good thing others interpret my thoughts. Coffee

PS I'll ditto show the study results if you're able.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#9
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
Just confirming what Dave said, bilevel pressure will not help your central apnea, however a CPAP at low steady pressure often does reduce events. You need the ASV. It seems you have a long wait ahead, and an alternative is to purchase a machine out of pocket and import it. JasWilliams from U.K. is a member and monitor here and has a Resmed S9 VPAP Adapt 36037 which is an auto ASV he got privately. The newer version is the Resmed Aircurve 10 ASV. Supplier #2 sells the VPAP Adapt (gently used) for $1249 USD and the Aircurve 10 ASV for $1595 USD gently used and $2149 new. Supplier #2 ships overseas, but you might have takes or import costs. Fortunately ASV is fully automatic and very easy to setup.

I guess the bottom line is you will need to keep pushing for an ASV with NHS. It is the only technology that will effectively resolve your central apnea. If you wer
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#10
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
(01-09-2021, 12:57 PM)Dormeo Wrote: If you truly have central apnea, neither an APAP nor a bi-level machine will treat your condition.  I think what Dave was referring to is the fact that the extra pressure support that a bi-level machine can provide can induce additional central apneas in some people.  

But I think the experts here might want a look at your sleep study.  Central apnea events are not uncommon during the period when your body is doing the neurochemical hand-offs between waking and sleep.  Any chance you can get a copy of the study report and post it here, after removing personal information?

Is the additional study you're waiting for an in-lab study or another home study?

Mmmh I see.

Well, you see, I asked my doctors for a copy of my sleep report but they refused to give it to me. They said I "wouldn't be able to interpret the results" as I am not a doctor. All they told me was that my AHI was 25 in the first hour or two. I think it's a form of transitional/onset centrals, maybe positional too.

So I'm at a loss as to.how.i get a copy.of it. My next door neighbour is a doctor at the hospital and he took a look at it and confirmed it was pretty much mostly at the beginning of sleep. 

The only way I can see me getting the sleep report is if another doctor wants it. I don't see why they didn't give it to me. I thought I was entitled to my results? 

The additional study is another at home test. Due to COVID, tho they could get me for in lab. Like I said, I think I'll just change hospitals. 

I don't mind doing another study, but I'd at least like a try with one of the machines. I recognize it might not work, but there are anecdotal accounts of people with centrals that give me hope.

ASV is usually not in clinic. I think to get that theh would put up.way more resistance than they would for Bipap or APAP. But yea I would eventually want to move to ASV if that's what I need.

(01-09-2021, 12:54 PM)SarcasticDave94 Wrote: By my own long difficult path to ASV. CPAP to BPAP to ASV with months between and sleep study and titration for each. BPAP without backup breath rate will be worse as the pressure swings, PS as well, will be very bad if it's close to my own experience. AND very bad is an understatement.

I think I could get ASV but it will take a while thru the NHS. 

If I change hospital and they allow me a machine to trial, i doubt it will be an ASV. Most likely i think they would ask for another test but hopefully trial me a machine in the mean time that isn't ASV (due to how expensive it is etc). 

So between CPAP, bipap and apap, which would be the best? I mean i am hopeful.i could maybe get them to trial me an ASV, but I can't get my hopes up.too much.
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