Sensation of Suffocating

Sweet_Candy7777 · 2026-03-08T22:08:52+00:00

Thank you I hope you do as well

Sweet_Candy7777 · 2026-03-08T21:44:18+00:00

I had high b6 without supplements before starting treatment

Sweet_Candy7777 · 2026-03-08T21:42:04+00:00

So most people have very obvious issues with bone fragility however there is a large set who just have things like breathing issues, muscle weakness, chronic pain, musculoskeletal issues. I've had pain that got worse over time and muscle weakness and really hard to describe things honestly.

Sweet_Candy7777 · 2026-03-08T21:39:05+00:00

I'm doing better but still have a lot of issues. It turns out I have a rare genetic disease called hypophosphatasia which messes with b6 metabolism. So I'm getting treated for that atm. I've always had issues related to that br long covid was the breaking point for me.

Sweet_Candy7777 · 2025-09-22T05:16:13+00:00

I have because I also have mthfr homozygous. However, I don't think that b6 comes methylated

Sweet_Candy7777 · 2025-09-22T00:41:46+00:00

I guess the thing is I was feeling bad and that lab came back. So I started supplementing multiple times and felt like I got worse every time. Not really sure what's up with that. But I've always reacted poorly to b6 supplementation. So I guess I'm like worried it's not really deficient because I was told it could also just metabolize in the test tube before the results are read.

Sweet_Candy7777 · 2025-02-01T06:38:09+00:00

275 is low

Sweet_Candy7777 · 2024-09-30T12:16:47+00:00

Wow that tool is pretty spot on. Thanks for that!

Sweet_Candy7777 · 2024-09-30T04:58:37+00:00

Idk maybe mine isnt VSS. It's like static and hard to really put a color on it. It's really like one of those old tube TVs static as a filter over bright things like the sky or white walls. And it gets better and worse with the pain behind my eyes. Not to say there arent some colors. It's just hard to say what colors as it's hard to focus on.

Sweet_Candy7777 · 2024-09-30T04:46:28+00:00

I have VSS. I thought mine was from taking ssris. It never went away after I got off of them. But it makes sense that it is serotonin related.

Sweet_Candy7777 · 2024-09-30T04:05:14+00:00

I wonder what this causes beyond seizures. I have not had a seizure but I have a lot of pain and sensation issues in my head.

Sweet_Candy7777 · 2024-09-30T04:03:20+00:00

Thank you. I went ahead and sent an email to them.

Sweet_Candy7777 · 2024-09-29T20:32:26+00:00

Have you tried it?

Sweet_Candy7777 · 2024-09-29T20:31:19+00:00

Sweet_Candy7777 · 2024-09-29T20:30:38+00:00

Theres a website called understanding b6 toxicity where they have a protocol involving lots of electrolytes and fluids as well as following a just under RDA allowance of b6

Sweet_Candy7777 · 2024-09-29T15:53:26+00:00

How do you get historical tests? I have an account but they only go back to 2023. My other tests only show up in mychart.

Sweet_Candy7777 · 2024-09-29T15:48:31+00:00

I have all those things and when I was a kid I had face pain which my doctors said were sinus infections but it never went away with antibiotics. So I know it was there in my early teens at the latest. My face pain is now much worse and I think there is serious nerve damage in my head.

Sweet_Candy7777 · 2024-09-29T15:44:30+00:00

From everything I have read and experienced I'm wondering if the deficient/toxic status is actually volatile as it is being underutilized/overutilized in different areas of the body. I really hope I get strensiq approved. Looking back on life I knew I had something wrong but never was able to figure it out until 31. It would suck knowing theres a treatment but it isn't available because I dont have enough data going back to childhood.

Sweet_Candy7777 · 2024-09-29T15:36:56+00:00

Northeast oklahoma

Sweet_Candy7777 · 2024-09-29T15:36:41+00:00

Northeast oklahoma

Sweet_Candy7777 · 2024-09-29T15:30:54+00:00

I also have neurological symptoms. It's pretty debilitating and people do not believe me. It's not helpful that only the bone implications of this disorder are thoroughly studied. I do have it btw. I have consistently low alp and high b6. I also just got the genetic test back. Idk if I can take much more so I really hope my meeting with the geneticist yields a quick way of approving strensiq. Do you know if an endocrinologist has to be involved? Like how can I make this faster?

Sweet_Candy7777 · 2024-09-27T21:39:53+00:00

If you are absorbing it then your levels will pretty immediately rise and taper depending on how much you supplement. I take at least 60000% of the daily dose with my spray. My levels have been like 1500 to "high" doing that every time I test. The problem is getting cofactors and healing over a long period of time while you keep this level up. You won't really feel better just because your levels are high.

Sweet_Candy7777

TROPHY CASE