Sleep issues. HELP!

[NancyM]

Just an update here…
He doesn’t have sleep apnea. The problems have continued, on and off. Waking up gasping, blood pressure increased, headaches, feeling ill and light headed etc etc. Doctors have no clue, mostly mention “anxiety” as a cause. Or sleep apnea. The blood pressure medication, a light dose, has brought that down, no problem. But the sleeplessness, lack of breath, the stress levels and general feeling of illness continued. Then, one night, a panicked trip to emergency in the middle of the night (I drove). “Anxiety” diagnosed yet again, and sent home.
No real answers here.
Then, he broke out in a rash as well, on his back and face. Then, he tried going on our inversion table, and all sorts of “muck” came out of his throat and lungs, hacking and spewing. I said it looked like an allergy. He took some antihistamine, and things improved. He slept that night. But ensuing nights, issues again. But we felt we were getting a handle on it.

Spent some time googling yesterday. And yes, it’s a reaction to histamine. It’s classic. He is reacting to some things he eats, and is now on a strict diet, removing the things that are histamine producers.

Our hopeless local GP doesn’t have a clue (we are FORTUNATE to have a local GP, with the state the health system is in, but hey, it’s a nightmare). But she’s going to get educated. We are pretty pissed off with the “health system”, who only sees the superficial symptoms, and looks no further. The ER doctor was no better. Treats the symptoms they see without ever looking deeper and asking why???
I just thought I’d update you guys, who have tried so hard to help us. If you have issues like this, and doctors are not helping, explore. The doctors we have had contact with simply are overwhelmed with what they are facing each day, and unless you have a broken bone or blood pouring out of a wound, you are dismissed. And labelled crazy. “Here’s some drugs to treat your symptoms… go away”.

[hoopoe]

You are in southern Africa, is that correct?

Many of the symptoms he is showing sounds like Alpha gal syndrome which is a tick borne issue, here in the SE US. Food allergy might be in play. Challenging to work through. A field trip to a large medical center may be needed. Don’t over look components if supplements he may be using

[JanM]

Does he stay hydrated? I recently was diagnosed with high blood pressure, and I’ve noticed that my pressure is up (I do my test first thing in the morning), if I didn’t get enough water, or liquid. If I do get my water intake on track, my pressure is much closer to normal. It’s just from my observation, but it seems to be connected.

[NancyM]

In Canada, not Africa LOL. Not a lot of ticks here actually.

[hoopoe]

OK you discription of the isolation from services, that is where my mind went to.

but I do wonder about food allergy or sensitivity, which Alpha gal is one of.

[NancyM]

An update on this, because so many people here tried to help, and thank you sincerely for that!!! All responses were helpful.
He’s had two MORE kidney stones. He had one pass a few years ago. Then these two new ones, a couple days apart, earlier this spring. It’s severe pain, but at least with these new ones, we knew what it was so less all out panic. And he went googling, which leads to all sorts of input, both good and hopeless. But what came out of it was diet related (which is what I’ve always kinda felt may have been the issue- as have some of you in your responses here). The sleeping problem, the gasping for breath while sleeping or partially sleeping is related to the kidney stones, and the amount of oxylates in the diet. Potatoes are one source. The classic is rhubarb, which he doesn’t much eat. Spinach is another (spinach is “healthy”, isn’t it???- not for someone who has an issue with oxylates.). There are a variety of videos available about diet, some helpful, and some that are “out there”. He’s seen them all. And since he has been actively AVOIDING oxalic acid containing foods, things have improved in the sleeping department. Avoiding more kidney stones is also the goal. There was NO HELP AT ALL from the medical system about this. It appears that our " general practitioner doctor" doesn’t know what oxalic acid IS. And/or doesn’t care. Because is she can’t write a prescription for a drug and get paid for that, it’s not important, or anything she is interested in. And that is the only doctor available in our area.

Thanks, I really appreciated the input from this thread, as did the DH.

[JB]

Oh that’s fascinating, thanks for that update! Yeah, sadly, there are lots of truly healthy foods which are “unhealthy” for the right person

It might be worth testing his urine for the oxalate level, to see just what sort of reduction in higher-oxalate foods he needs

And, ANY chance he’s got any IBS/IBD going on? That can interfere with how well oxalates are digested and subsequently contribute to kidney stones

[NancyM]

I don’t think so about the IBS/IBD. Not that I’ve heard, anyway. He doesn’t discuss EVERYTHING with me. The urine test he had showed blood in the urine, from the stones passing, which we pretty much knew already having dealt with it. Anything else I suspect would require a doctor who has heard the words “oxalic acid” and understand what that is, and where it comes from, and what the effects in some people can be. We don’t have that sort of doctor for our GP. With the doctor shortage, especially in remote areas like ours, many doctors here are educated in a foreign country. This one’s from Iraq. Makes you wonder ???

There has been a marked improvement with the change in diet. Then he ate some potatoes the other night, I dunno why (I had brought them in for MYSELF). And he’s been miserable for the last couple of days, lack of sleep again etc. “Live and learn”. It’s amazing the number of things that have oxalates in them, many that are considered “healthy eating foods”. Peppers, he also WAS eating orange peppers daily. And potatoes, and almonds, and spinach. He WANTS to “eat healthy” and “live healthy”, these things have been very important to him for decades. And this issue is the result. He finds it to be pretty depressing. Passing the kidney stones was quite horrific. Intense pain. No relief until they pass. Intense desire to avoid having this happen again.

[Alterwho]

The actor Liam Hemsworth had to have kidney stone surgery because of calcium oxalate kidney stones. Apparently the was eating huge amounts of spinach and almonds.

“Every morning, I was having five handfuls of spinach and then almond milk, almond butter, and also some vegan protein in a smoothie,” Hemsworth continues. “And that was what I considered super healthy. So I had to completely rethink what I was putting in my body.” "

Liam Hemsworth Reveals Surgery Forced Him to Rethink His Vegan Diet

[NancyM]

Yes, that is exactly what is going on here! (but no surgery required YET). But it is freaky how it effects my DH… he was just a wreck when things were bad. And no answers to be found with the medical doctor.

[Alterwho]

@NancyM

Yes, that is exactly what is going on here! (but no surgery required YET). But it is freaky how it effects my DH… he was just a wreck when things were bad. And no answers to be found with the medical doctor.

Yep, I went through the same thing starting way back in 1989. Spent a couple of decades after that with recurrent kidney stones and not one single Dr mentioned oxalates. I learned all about them on my own over a decade ago. My main problem foods were almonds and almond butter (which I ate just about every day), dark chocolate, black tea and beets. Every once in a while I’d fall off the wagon and start eating those foods again and - wham!- kidney pain (only on the left side, my problem kidney) and just overall feeling like crap. Doing pretty well now

[JB]

5 handfuls of spinach isn’t really a lot. But, it does start to add up when you’re eating lots of high-oxalate foods

[Alterwho]

@JB

5 handfuls of spinach isn’t really a lot. But, it does start to add up when you’re eating lots of high-oxalate foods

I cup of raw spinach has about 650 mg of oxalate. I’m assuming Liam Hemsworth doesn’t have tiny hands so 5 handfuls is going to be well over a cup, probably many cups. A person prone to oxalte kidney stones should keep their daily oxalate intake to 40-50 mg a day

[forwardmarch]

Sending sympathies from a fellow oxalate stone sufferer. In my experience, this University of Chicago website is the gold standard for advice https://kidneystones.uchicago.edu/

I found I could just pay attention eliminating the top handful of oxalate foods and not have to worry about all the lessor offenders. My initial stone seemed to occur after eating A LOT of spinach and almonds.

Good luck!

[NancyM]

Thanks, I’ll let him know. Things are MUCH improved here in the sleeping department! And general health, with avoiding the right foods. We just find it amazing that the medical “professionals” were of NO assistance with this issue. Our medical doctor does not know what “oxalic acid” is, or what it does. He has had to educate himself on this subject. Thanks, internet!!!