In the UK.....Is it my heart, or my sleep-- or both?

Hi all, I'm new here. I'm in the UK, and because the healthcare system here is in crisis at the moment, I'm having trouble accessing diagnostic services to find out if I have sleep apnea. Unfortunately the fact that I'm a mid-40s woman with a relatively slim build and youthful appearance means that I'm not being taken seriously at all; according to the last GP I saw, I don't "look sick." Meanwhile, I'm short of breath much of the time and am having chest pain, which suggests to me that I am, in fact, sick. I'm just not sure whether I'm having heart problems or suffering from sleep apnea or both-- but I am sure I want to figure it out fast. One of my grandmothers died in her sleep from heart problems at age 48, so as you can imagine, having heart and/or sleep problems and being ignored by physicians because of my appearance is extremely stressful.

Because I'm having to pay £££££££££££££ for private cardiac testing procedures, I'm hoping I can rent a ResMed CPAP to try to confirm or dispense with sleep apnea as a complicating factor. Here's what's holding me back: because of the heart-related concerns, I'm scared that a CPAP could potentially harm me if I don't have sleep apnea or if I have central sleep apnea. My first question, then, for anyone more experienced (which is probably all of you!): Is it risky to self-diagnose with a ResMed Airsense if I don't know what type of apnea I have?

My second question is whether the results I've been getting from wearing a Viatom Checkme o2 monitor during sleep could help determine whether I have apnea, and what type of apnea I have. If anyone is able to take a look at the attached readouts and give an opinion, I'd really appreciate it. I understand no one can render an ironclad medical opinion over the internet-- I'm just looking for anything that might help me understand my options for diagnosis a little better so that I can best direct the money I have to address some pretty scary health issues.

Some other information that might be useful:
1) I bought the Checkme in part because of the alarm function, and I've noticed that when it wakes me due to low oxygen, it's always when I'm on my left side or my back. I don't always wake up when it buzzes, however.
2) I don't feel notably tired during the day, and the oxygen "score" that Viatom's app provides doesn't seem to correlate with my energy levels.
3) I have classical Ehlers-Danlos, a connective tissue disorder that can make both sleep apnea and heart issues more likely (it's also one of the reasons I have a more youthful facial appearance and am getting fobbed off by doctors--even the one advantage of EDS is a double-edged sword in this case).

THANK YOU in advance to anyone able to give me some pointers!

Use this if it helps. It may do more good than the O2 printouts:

"Obstructive sleep apnea was linked to debilitating symptoms of EDS [Ehlers-Danlos Syndromes] such as fatigue, generalized pain and lower quality of life. It is thought that the reason OSA is seen in the hypermobile population is because of increased nasal resistance. It is a highly prevalent comorbidity that is often underestimated in this community, particularly in children. A recent paper stated that the prevalence of OSA among people with EDS is 39%. In addition, it claimed that 'those with EDS or [Marfan syndrome] are six times more likely to have OSA than those without a hypermobility disorder.' Physicians that are not experts on the hypermobile population should be aware of the peripheral and central risks of OSA despite the thin frame that often accompanies these patients."--https://www.heraldopenaccess.us/openacc ... tic-review

I as a layman can find nothing that contraindicates a trial of PAP. Chest pain alone would not contraindicate a PAP trial for someone in the general population.

It angers me how females often get ignored by doctors. As a large male, I have accompanied females to appointments in order to help them get taken seriously. The world isn't supposed to work that way.

Keep up the fight. I wish you all the best with it!

I would push harder to get some cardiac testing or whatever's available to you there, not suggesting any of the above should be ignored. The apnea as a possible problem with EDS is one thing, but I'd want to know more about the cardiac issues first, at whatever cost you can manage at all.

And often the most healing thing to be done for the entire cardiovascular system and the entire body is to use the lightly pressurized air of PAP to keep the airway stable at night to allow for good breathing, which facilitates the natural healing effects that come from improved sleep. It is difficult to follow all the rules of sleep hygiene and to reduce stress and inflammation until the airway is sufficiently stabilized. Ignoring the one third of patients' lives spent sleeping is often the biggest mistake doctors make.

When visiting the doctor, don't get gussied up.
Look like yourself.
Act and talk as bad as you feel.
Make sure your doctor records your family's health issues.
Be a pest.

athinglikethat wrote: ↑

Fri Sep 08, 2023 2:01 am

Hi all, I'm new here. I'm in the UK

welcome.

i just wanted to add that it's a good job you put uk in the title. forum member rick blaine is a uk resident. he'll be along shortly to give some specific advice and maybe suggest something you hadn't thought of.

in the meantime, good luck!

athinglikethat wrote: ↑

Fri Sep 08, 2023 2:01 am

Because I'm having to pay £££££££££££££ for private cardiac testing procedures, I'm hoping I can rent a ResMed CPAP to try to confirm or dispense with sleep apnea as a complicating factor.

Have you considered / checked the price of a home sleep test?

Here's what's holding me back: because of the heart-related concerns, I'm scared that a CPAP could potentially harm me if I don't have sleep apnea or if I have central sleep apnea. My first question, then, for anyone more experienced (which is probably all of you!): Is it risky to self-diagnose with a ResMed Airsense if I don't know what type of apnea I have?

There are a number of problems with using a CPAP machine for self diagnosis, none of which is related to your cardiac concerns:

1. You have to get used to sleeping with a mask on your face -
2. It has to be a fitting mask that does not leak, and there's no knowing which mask that would be.
3. Sleep apnea happens when you're asleep, however the CPAP machine has no idea at all whether you're asleep or not. The identification is based on breathing patterns - and waking patterns can throw the algorithm off. The machine could misidentify events and you won't know what the score means.
4. Many of us know from experience that sleepless nights will drive a "central apnea" score up, just because the machine doesn't know we were asleep.

My second question is whether the results I've been getting from wearing a Viatom Checkme o2 monitor during sleep could help determine whether I have apnea, and what type of apnea I have.

Not really. Some people have disruptive breathing problems that don't make their O2 drop too much, but keep them from sleeping properly.
Have you attempted to show your oximetry data to a physician, as a basis for asking for further investigation? Or is the crisis in the NHS such that you will maybe see a doctor in a year?

I'm just looking for anything that might help me understand my options for diagnosis a little better so that I can best direct the money I have to address some pretty scary health issues.

I think it would be best to direct your money at getting sleep study - and a home sleep study would be cheaper than one in the lab.
Can't you get support in your quest for further diagnosis from EDS specialist?

I'd focus my resources on a home sleep study, because that monitors you oxygenation and pulse, your sleep (via EEG) and your breathing,

(duplicate post - please ignore)

zonker wrote: ↑

Fri Sep 08, 2023 11:34 am

athinglikethat wrote: ↑

Fri Sep 08, 2023 2:01 am

Hi all, I'm new here. I'm in the UK

...
i just wanted to add that it's a good job you put uk in the title. forum member rick blaine is a uk resident. he'll be along shortly to give some specific advice and maybe suggest something you hadn't thought of.
...

It's possible to put your location in your profile on this forum, so that every post includes your location. I'm curious why more people don't do that! I often take a peek at the info on the left to see where the poster is located, and 90% of the time it's not filled in. Is it because 90+% of the people on this forum are US based?

lazarus wrote: ↑

Fri Sep 08, 2023 7:46 am

Use this if it helps. It may do more good than the O2 printouts:

"Obstructive sleep apnea was linked to debilitating symptoms of EDS [Ehlers-Danlos Syndromes] such as fatigue, generalized pain and lower quality of life. It is thought that the reason OSA is seen in the hypermobile population is because of increased nasal resistance. It is a highly prevalent comorbidity that is often underestimated in this community, particularly in children. A recent paper stated that the prevalence of OSA among people with EDS is 39%. In addition, it claimed that 'those with EDS or [Marfan syndrome] are six times more likely to have OSA than those without a hypermobility disorder.' Physicians that are not experts on the hypermobile population should be aware of the peripheral and central risks of OSA despite the thin frame that often accompanies these patients."--https://www.heraldopenaccess.us/openacc ... tic-review

I as a layman can find nothing that contraindicates a trial of PAP. Chest pain alone would not contraindicate a PAP trial for someone in the general population.

It angers me how females often get ignored by doctors. As a large male, I have accompanied females to appointments in order to help them get taken seriously. The world isn't supposed to work that way.

Keep up the fight. I wish you all the best with it!

Thanks so much for this perspective. I'm definitely leaning towards doing the ResMed rental option for a few days.

And thank you for being an ally to women you know in the fight to get taken seriously! I've definitely found that if I take my male partner with me, doctors will listen to his testimony about my body in cases where the same doctor has fobbed me off about the same symptoms. In fact, his presence is the only way I've made any progress at all over the past couple of years. He's found it pretty eye-opening and shocking and maddening-- I think he might be more incensed about it than I am at this point, since I've had a few decades to get used to it.

Julie wrote: ↑

Fri Sep 08, 2023 9:21 am

I would push harder to get some cardiac testing or whatever's available to you there, not suggesting any of the above should be ignored. The apnea as a possible problem with EDS is one thing, but I'd want to know more about the cardiac issues first, at whatever cost you can manage at all.

Thanks, Julie, for keeping my focus on the big picture here. I got a little bit of good news yesterday-- I've got an appointment this afternoon with a cardiologist who has expertise in connective tissue disorders thanks to a last-minute cancellation. I've been on his waitlist for many months now to see him privately. (He works for the public health system here as well, but I was told it would be 2-5 years to see him through that path IF I could even get my GP to refer me.) I'm keeping my hopes up and my mind open and going in with the attitude that this doctor may actually help me figure out some answers... but if not, I'm certainly going to keep pursuing answers about my heart through any means I can get them.

chunkyfrog wrote: ↑

Fri Sep 08, 2023 11:15 am

When visiting the doctor, don't get gussied up.
Look like yourself.
Act and talk as bad as you feel.
Make sure your doctor records your family's health issues.
Be a pest.

Chunkyfrog, believe it or not, I had a similar thought recently, and tried going in to the GP in very casual clothes and without so much as lip balm on. The result was that the doctor started asking me "safeguarding" questions: Am I depressed? Do I have any hobbies? Do I have friends? Most of the time for the appointment ended up going towards my defending my mental health status. There was certainly something insane about that interaction, but the insanity wasn't coming from me. In any case, thank you for the supportive suggestions-- even though dressing the part hasn't panned out for me, I definitely need to be more insistent on the family history point. You are very right I need to be a pest about having that information logged. The grandmother I mentioned is the most ominous early death in the family, but for almost everyone on both sides of my family with a known cause of death, it's heart failure or stroke.

ozij wrote: ↑

Fri Sep 08, 2023 10:33 pm

athinglikethat wrote: ↑

Fri Sep 08, 2023 2:01 am

Because I'm having to pay £££££££££££££ for private cardiac testing procedures, I'm hoping I can rent a ResMed CPAP to try to confirm or dispense with sleep apnea as a complicating factor.

Have you considered / checked the price of a home sleep test?

Here's what's holding me back: because of the heart-related concerns, I'm scared that a CPAP could potentially harm me if I don't have sleep apnea or if I have central sleep apnea. My first question, then, for anyone more experienced (which is probably all of you!): Is it risky to self-diagnose with a ResMed Airsense if I don't know what type of apnea I have?

There are a number of problems with using a CPAP machine for self diagnosis, none of which is related to your cardiac concerns:

1. You have to get used to sleeping with a mask on your face -
2. It has to be a fitting mask that does not leak, and there's no knowing which mask that would be.
3. Sleep apnea happens when you're asleep, however the CPAP machine has no idea at all whether you're asleep or not. The identification is based on breathing patterns - and waking patterns can throw the algorithm off. The machine could misidentify events and you won't know what the score means.
4. Many of us know from experience that sleepless nights will drive a "central apnea" score up, just because the machine doesn't know we were asleep.

My second question is whether the results I've been getting from wearing a Viatom Checkme o2 monitor during sleep could help determine whether I have apnea, and what type of apnea I have.

Not really. Some people have disruptive breathing problems that don't make their O2 drop too much, but keep them from sleeping properly.
Have you attempted to show your oximetry data to a physician, as a basis for asking for further investigation? Or is the crisis in the NHS such that you will maybe see a doctor in a year?

I'm just looking for anything that might help me understand my options for diagnosis a little better so that I can best direct the money I have to address some pretty scary health issues.

I think it would be best to direct your money at getting sleep study - and a home sleep study would be cheaper than one in the lab.
Can't you get support in your quest for further diagnosis from EDS specialist?

I'd focus my resources on a home sleep study, because that monitors you oxygenation and pulse, your sleep (via EEG) and your breathing,

Thanks for the detailed and helpful response. I have indeed looked into home sleep tests over here, but they get a lot of criticism from the patients who try them because they're single-use home tests and a lot of people feel that paying several hundred pounds for one night of data isn't a solid bet to make for a lot of the same reasons you mentioned with the CPAP machine rentals-- you might toss and turn with the test sensors on and get data that doesn't reflect a "normal" night for you. We don't have anything like Wesper here, where you can track data over weeks or months. That's one reason I've looked at going to the CPAP option directly, but you raise really excellent points about the potential drawbacks of that path. I certainly have no idea which of the general mask types would best work for me-- let alone which specific model.

I'm on the NHS waitlist for a rheumatologist who's an EDS specialist. Last time I called to ask for an update on the wait I was told it's now "indefinite." The doctor isn't taking any new patients privately, and I'm afraid it's a similar story for most of the EDS physicians over here. At the GP level, because the NHS is partially privatized, it costs GP practices and local administrations money to make referrals, so some GP practices do everything they can to discourage patients who have chronic illnesses from seeking help. The BBC reported on some of the issues with this system back in 2015: https://www.bbc.co.uk/news/health-34421115# -- and 2015 seems like a golden age for healthcare over here compared to 2023! Honestly it's hard to explain how quickly things are sliding downwards and how many barriers are in place for chronic conditions, and it's especially hard to explain if you happen to be coming from an American context. I know that particularly well myself because I was born and raised in America. After a decade in the UK, I still get surprised sometimes when something I think would just be common sense turns out to be anything but common over here. I'm sure people going from the UK to US feel the same way, of course.

zonker wrote: ↑

Fri Sep 08, 2023 11:34 am

athinglikethat wrote: ↑

Fri Sep 08, 2023 2:01 am

Hi all, I'm new here. I'm in the UK

welcome.

i just wanted to add that it's a good job you put uk in the title. forum member rick blaine is a uk resident. he'll be along shortly to give some specific advice and maybe suggest something you hadn't thought of.

in the meantime, good luck!

I believe that addition must have been made by the moderator who kindly approved my post since I'm a first-timer!

Thanks very much for the welcome and well-wishes.

If you don't sleep, at least a correctly analyzed home study is capable of showing that fact.

Is a month's rental of CPAP + mask/s cheaper? And who will you bring those result to? What is it you expect will happen?