Biphasic Reality & Stress

Have you checked to see if there are medical studies that would accept you as a participant?

For example, if you had a rare neuroimmune disorder, you could visit the SRNA website to see what trials are looking for participants.

Have you tried to contact any researchers who study sleep patterns or attended symposia. (Some might offer free admission to patients.)

I'm too busy navigating my local crap. I don't have 3 years of "perhaps", regardless of what my education and industry forefront is. Participants don't get lifetime administration. Trials are just that.

So moving on, I'm finding I have a Narcolepsy Type 2 possibility. My GP is a temporary guy that's 100% government (Canada) and he's useless. But he's gone in 3 weeks, so my regular GP is coming back. I have more sleep tests (done 2 already) and my CPAP machine is horrible. It simply doesn't work for me.

Costs for meds for this, if it is this, are steep and apparently are severe meds like SSRIs. I don't want antidepression meds. That's introducing a horrible state of affairs.

I'm just beside myself that this is happening. The sleep is SAD level of complete inclusion. At this point I don't know what to say or do. I've tried everything. If I get more advice on breathing techniques, I'll freak out.

Any advice?

How about a couple glasses of wine

I got into some beers last night.

Did it help?

It helped last night. I slept this afternoon, as per all this week and last week and before that.

This disorder keeps changing. I'm in front of SAD season which is a normal horrible time, but now I'm getting more normal sleep. And since I'm type 2 narcolepsy (assumption), there is no orexin depletion, or minimal.

Three doctors appointments this week, and more sleep tests coming.

OK, an update.

- Been heavy on the vitamin D, but still having sleep issues.
- Just literally got semi-diagnosed with something between IH and T2N, somewhat approaching the latter, but continuing to flush it out.
- I have much elevated Ferritin, which is probably causing my RLS. So phlebotomy starts in ~two weeks. That should be not fun. Donating blood every 2 weeks for minimum half a year. Then doing so for as long as I live.
- I'm also getting onto a generic Lyrica which should help me with the RLS. I apparently sleep half the hours I'm in bed, so fixing the interruptions is what we're doing now.

I hope you see vast improvement, @PhilMC

Thank you. I'm on meds and soon this absolutely insane blood-letting schedule. I'm a frickin cave-man again.

I started on CPAP in 2021. Then I was switched to BiPAP (at a different clinic) in very late 2022. I have been on BiPAP since which is better.

The mask, though, stayed the same. And a couple of weeks ago I saw a sleep technician at the clinic for a mask fit. And she told me that the mask I had had all along, for more than 3 years, had set me up for failure. And gave me two alternatives. I have so far used one of them and I like it a lot, but it is not the one she thinks is optimal. That one, a full face mask, I am yet to try.

Several doctors/PAs, one durable medical equipment provider, two types of machines, and... it took 3.5 years to get to a tech at a clinic who actually knows what she is doing. So it turned out that the tech at DME in 2021 did not select a well fitting mask. How was I supposed to figure it out?

The point is, there are many variables in the CPAP therapy and there might be options you have not tried yet and that is why you believe the CPAP does not work. So, in my case, CPAP did not work but BiPAP did, and then it turns out I should be on a different mask. So many variables. Maybe if you keep combining/permuting, ultimately you will find a solution for the therapy to work for sleep apnea?

I am not implying that it will resolve biphasic sleep, though. Just that you need to get to a low AHI.

I've been using CPAP for more than 6 years at this point and it worked ok when it did work. The reason it isn't working isn't because of fit, but because of the inflammation that it now causes. My machine has variable pressure, so it basically does what you have.

I taped last night and had the best sleep in a very long time, but it did have my legs issue, which had me up at stupid times anyway. My AHI was low to begin with as it started out as very high years ago.

Is it RLS? The legs issue?

Restless Leg Syndrome. I have high ferritin, so I'm facing at least 6 months of blood letting and am on meds for my neurological system.

oh now I remember! You posted about blood letting. But this is so unusual, as RLS is typically a sign of LOW iron, no?

Yes you are correct that RLS is associated with low iron. But also high iron. Even my GP had to look that up as well. That insight is from my sleep doctor.

[Restless legs syndrome in patients with high serum ferritin and normal iron levels] - PubMed

So it is iron right in the middle of the normal range plus minus that is ideal. More is not better. Gives the same symptoms as too little. I did not realize that.

There is a proper range where things behave properly. And there are 3 measures of iron that need to be measured. My storage is the only thing that is very high, which is ferritin. I'm still investigating that this high ferritin has my RLS whacked up, so that's the current theory. All of this, makes me not happy about any of this. I just want a normal life.

Of course you do. I wish I could take some of your ferritin.

This apparently comes from systemic inflammation. I have a load of issues, and Metabolic Syndrome seems to be just that, as it encompasses a lot of these things.

Well here's a March 2025 update.

The sleep pressure continues, but I'm getting more a handle on the stuff. I'm losing my house and it should be on the market in a month. Then I found some potential places to live and they're expensive and very small. Very. I am now 56 and I don't think anybody will hire me at this point, so I don't know what to do. And it's driving me batshit. I'm very nervous about my future, well beyond the bad health. Oh so I tried to see if I could try some drugs to stay awake, so my GP told me to see a cardiac specialist as he thinks I can't survive the drug. I can ride a bike like the wind, but can't survive a medication to keep me awake?

So cardiac specalist is an all round narcissist. Arrogance is a perfected hobby for him. So I went from 'heart ok' to 'you're gonna fall over tomorrow' in one appointment with a few questions. More tests which his office messed up, and he now sees me annually for the same investigatory test. Apparently I have an enlarged aorta.

So my life changes very soon yet again, with no clear line of sight what my life will be like. I never married and I'm fine with that, as historical dating has been an absolute colossal mess. So it's easy to avoid problems. But that leaves me trying to work on my computer chasing no job, or out walking around trying to stay awake.

The ENT said I have deviated septum, and that's about it. Nothing wrong with my head physically so fixing an enlarged uvula won't fix sleep apnea. This is neurological. Otherwise it would continue and it apparently hasn't. The apnea has subsided for the most part, but my sleep issues are all over the place.

Anybody have an insight for me? I don't know how my life got here, and I don't know where it's going. I spoke to a psychologist a couple of times, but she only said "ya you're going through some times." That didn't help. Just made me feel like I was conned out of some dosh.

Cheers

Have you worked for 10 years cumulatively? Meaning, can you qualify for SSDI with a constellation of your symptoms?

I've always worked for myself so it's not provable. The government here in Canada takes this money for themselves. They've already turned me down and I have to show a small balance in the bank. It won't save my house. I just want to get working with some stability. I thought that could force me somehow to focus on something. I'd love to work from home as I work best here. Forcing me onto public transit for an hour twice a day will not work out well for me.

Oh I am sorry, I didn't realize that you are in Canada!