Research Group for ME/CFS, Chronic Disease, Aging and Cancer

Show Posts

This section allows you to view all posts made by this member. Note that you can only see posts made in areas you currently have access to.

Messages - Calluna

Pages: [1] 2 3
Member Blogs / Re: Calluna's journey
« on: August 11, 2021, 04:10:44 PM »
Today I learned that you can have sleep apnea without gasping and choking in the night and, usefully, that I have moderate sleep apnea. The at-home study didn't pick up anything because my oxygen saturation didn't drop, but in the in-lab study they recorded an average of 20 arousals per hour (normal is up to 5) due to moving my jaw around to reopen my airway. CPAP order's in progress, and I should have it in a couple of weeks.

I don't think sleep apnea is the cause of all of my issues, however. My sleep doctor said that sleep apnea can and will progress, but the timescale is more like decades than years. My condition has gone pretty steadily downhill for the past four or five years, which is somewhat speedier than implied. Also, there's still the matter of the positive EBV EA test result. I do wonder if it is not severe enough to be causing major trouble; the Labcorp test comes with a disclaimer that it's qualitative and not quantitative, so the number shouldn't be used for an indication of severity, but with other more severe folks' levels much higher than my 15 (with a negative cutoff of 10) I'm suspicious.

I am going to go ahead with testing for enteroviruses, if I can get someone to route my samples appropriately. I'm also still planning on a CMV check and a recheck for EBV (even though no one will attest to the accuracy of the score). Finally, as I discovered that the IGF-1 test I thought I had two years ago wound up being free growth hormone, which is practically useless for my purposes, I'm going to get that tested as well. I have a childhood history of growth hormone deficiency, which was successfully treated, but I haven't been retested. My symptom set is a good match, so if my IGF-1 is low and the CPAP doesn't improve me sufficiently I'll consider pursuing that pain-in-the-thigh definitive testing. I know that IGF-1 is far from a perfect test, but it's a quick and easy start.

Anyway, I'm going to go get some sleep, and be thankful that I have a treatable piece of the puzzle.

tl;dr enterovirus=unknown, growth hormone deficiency=unknown, sleep apnea=unexpectedly yes

Member Blogs / Re: Calluna's journey
« on: July 26, 2021, 07:03:21 PM »
Day 34, catch-up

I've been really sleepy and out of it for the past few days, and it's been hard to eat very much. I'm a little bit better today, and have avoided expending too much physical energy by bingeing on Rimworld (with plenty of neck and shoulder stretching at regular intervals). After speaking with Josh on Discord, I'm going to add a quantity of resveratrol to my daily protocol to try to help with any other co-infections going on. I should be able to pursue enterovirus testing next week; my in-lab sleep study is Wednesday, and with some other stuff going on I don't have the headspace for it yet.

Member Blogs / Re: Calluna's journey
« on: July 22, 2021, 07:01:53 PM »
Day 30

I think the sore throat has deserted me. Another household member also got a mild sore throat, around the same time, which cleared up early in the day like mine... ah well. Perhaps sleep will not desert me; we have assembled the new bed frame.

Member Blogs / Re: Calluna's journey
« on: July 22, 2021, 05:01:53 AM »
Day 30: Morning Special Edition

Hey, an immune reaction more like I expected! I started developing a sore throat late last night. It's still pretty mild this morning but definitely still there. Time to bump up the lion's mane, maybe eat some extra oat bran, and see what happens.

I switched from the NOW beta-glucans to 40g oat bran 1/d five days ago.

Member Blogs / Re: Calluna's journey
« on: July 21, 2021, 07:14:33 PM »
Day 29

Managed to avoid yesterday's symptoms today. Worn out from last night, but had a slow and nicely not-depressed day.

Member Blogs / Re: Calluna's journey
« on: July 21, 2021, 04:41:49 AM »
Day 28

Oof. Not sure whether it was immune response or poor postural decisions or a mix of both, but in the evening I experienced headaches bad enough to make me nauseous. Seemed to stem from neck and shoulder tension, and were ameliorated by constant gentle motion and stretching, enough that I could keep an ibuprofen down to get some sleep. I can't recall having headaches of quite that severity before, nor does 3 hours of gaming generally cause such a reaction. The one thing I did differently, diet-wise, was have my oat bran in the afternoon rather than the evening.

Ah well. The rest of my day had been tolerable, not great, mostly due to mood issues exacerbating low energy.

Going to get all the sleep I can today to make up for yesterday.

Edit: Quoth Josh, in Discord:

If my urea gets too high, I get something that reminds me of PEM from the old days - that weird flu/heat stroke feeling and headache.. usually accompanied by tense shoulders, neck and irritability.

I can drink a litre of water, pee and shake that off quickly.

Usually takes me dehydration or experiments involving nitrogen retention to trip that.

That... sounds pretty familiar. Quite possible that I wandered into that.

Member Blogs / Re: Calluna's journey
« on: July 19, 2021, 05:38:56 PM »
Day 27

Was able to sleep through the night, and have had a reasonably good energy day today. Not amazing, but not terrible, and better than this past week. I'm interested to see how I feel tomorrow, if I can sleep through tonight again.

Member Blogs / Re: Calluna's journey
« on: July 19, 2021, 05:41:05 AM »
Day 26

I've had a lot of days in the past week where I haven't been able to get back to sleep after awakening around 4 AM (normal rising time for me is about 8 AM). Part of it is needing to get up to use the bathroom in the night (extra fluids due to protocol); part of it is that I'd usually gone back to bed for a few hours the day before; and, I realized, part of it is that my old bed frame isn't the most stable thing around and I feel it every time my husband so much as twitches a toe. I've ordered a new bed frame which is supposed to be "zero motion transfer", and I'm hoping that this will help, because there's a lot of toe twitching going on in the pre-dawn hours that prevents me from relaxing.

Between that and the hormonal fluctuations (still present but diminishing), I've been pretty tired and haven't been able to get a good grasp on what the protocol's been doing for me. It's been hard to eat consistently or take all of the pills, though I do make sure I take all of my reishi. Hoping that this next week will see better sleep, and that it'll improve further once the bed frame gets here.

Member Blogs / Re: Calluna's journey
« on: July 18, 2021, 03:34:53 AM »
Day 25

Bit more energy today, unfortunately offset by external stressors. Had some oat bran in the evening. Gonna try to take it slow this coming week.

Member Blogs / Re: Calluna's journey
« on: July 16, 2021, 06:12:44 PM »
Day 24

I think some of the funk is passing. Slept an extra four hours today, but I also got less than five hours' sleep last night, so my total need for sleep is getting back to normal levels. Mood could still be better, but has been steadily improving. All of these symptoms have had me operating under my normal functionality level, so maybe I'll start seeing something useful in the next few days.

Member Blogs / Re: Calluna's journey
« on: July 16, 2021, 03:01:43 AM »
Day 23

Slept extra again, almost 7 hours. Mood issues. I have some hormonal interference going on; hopefully it will pass in the next day or two.

Member Blogs / Re: Calluna's journey
« on: July 15, 2021, 04:06:06 AM »
Day 22

Better than previous, no levocetirizine, no a-GPC 😄 Very nearly went back to bed in the morning, but didn't, and energy and mood improved as the day went on.

Member Blogs / Re: Calluna's journey
« on: July 13, 2021, 05:37:12 PM »
Day 21

Things which were a bad idea today:
  • the allergy pill (levocetirizine) which seems to have encouraged me to sleep for an extra 8 hours today
  • 300mg NOW a-GPC which seems to have caused a depressive episode within 1h of ingestion; it's wearing off now, but I'm just gonna avoid that one in the future. Interesting topic for later research when the world is not quite so grey any more.

Member Blogs / Re: Calluna's journey
« on: July 12, 2021, 05:57:51 PM »
Day 20

Not too much to report. Woke up early and couldn't get back to sleep, went back to bed for a few hours a little later in the morning, but wasn't horribly groggy and wiped out afterward like I usually am. I assume this is because I only really made up for lost sleep rather than trying to make up for metabolic death spirals.

It's nice to not have to deal with pre-breakfast pills.

Member Blogs / Re: Calluna's journey
« on: July 11, 2021, 06:35:51 PM »
Day 19

Regrouping and rearranging today, based on Josh's recommendations and my challenges so far. I've rearranged things so I'm not taking anything before I have food in the morning, so 🤞 no more nausea. I've tried glycine and creatine mixed in with my BCAAs and that's working well, so I'll keep that up instead of encapsulating them. Doses of everything are pretty much back to baseline levels.

Diet will have more protein; I'll add sandwiches on nutritionally-useful bread into the rotation, and get someone in the house to cook some chicken so it's not all fish all the time. That should give me a little more variety, and be a little less effort for me to prepare on bad days (physical or mental).

Pages: [1] 2 3