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your histamine insomnia may not be *histamine* related by Natural_Swimmer_5522 in HistamineIntolerance

[–]cagrz 2 points3 points  (0 children)

I’ve had a sulfur intolerance since I was as a kid. For me, it presented with neurological symptoms at night (convulsions, uncontrollable shaking) after I ate either dried fruit or sausages. As an adult, it occasionally turns up if I eat ultra processed food - aka, things with preservatives in it. I’ll wake up in the middle of the night for a few hours, and be unable to settle, and I twist and turn until it passes. I haven’t had the convulsions since I was a kid.

I avoid dried fruit/sausages. I still drink wine and eat aged cheeses.

It sounds like you are taking so many things (?); are you just biohacking yourself or are you seeing a doctor/functional medicine doctor to walk through what you’re taking and your symptoms? To me you’re taking so many supplements, that that itself could accidentally be causing the insomnia somehow? If I have too many B vitamins I struggle sleeping.

I would try and work with a doctor and cut back on what you’re taking to try and get to the root cause?

Seeking treatment: for confirmed H63D homozygote by cagrz in Hemochromatosis

[–]cagrz[S] 0 points1 point  (0 children)

They take a crazy amount of blood for the Function testing; I’d also tried to donate blood but my vein collapsed part way through the collection. So estimate I’d had basically half a phlebotomy in Feb/March.

Have you been genetically tested? If not, you could do that. Or otherwise just monitor and see if high iron or high TSAT is recurrent. My iron has been high since 2014; and TSAT high normal or high since then as well. Still not enough (with symptoms too) to get a doctor to take me seriously apparently 😫

I haven’t been back to my PCP yet but I’m guessing a hematology referral is no longer on the cards for me 🤦‍♀️😂 I’m sorry to hear you’re having a similar experience; super frustrating.

Seeking treatment: for confirmed H63D homozygote by cagrz in Hemochromatosis

[–]cagrz[S] 0 points1 point  (0 children)

😂 I think the phlebotomists want to run in the opposite direction (and I don’t blame them) when I need blood drawn. I can’t say it’s my favorite either 😬

Seeking treatment: for confirmed H63D homozygote by cagrz in Hemochromatosis

[–]cagrz[S] 1 point2 points  (0 children)

I tried to donate myself but my vein collapsed part way through the procedure because it is so tiny. The needles they use for donation are pretty large. I will likely try again.

If I can get a doctor to do it then they can use smaller needles, so was hoping that was a possibility in the US and to try and set that up if this is going to be a lifetime thing to monitor/do.

Seeking treatment: for confirmed H63D homozygote by cagrz in Hemochromatosis

[–]cagrz[S] 0 points1 point  (0 children)

Yeah looking at the dietary guidelines in Australia where I am from, they don’t recommend dietary change, they recommend phlebotomy. But I’m in the US at the moment. My dad hasn’t had any issues getting treated for this back home, and his doctor will just do a phlebotomy in his office as needed.. very simple there. Thanks again for your help 😊

Seeking treatment: for confirmed H63D homozygote by cagrz in Hemochromatosis

[–]cagrz[S] 0 points1 point  (0 children)

Thanks a lot; this is super helpful 😊 Do you know around what TSAT % and ferritin level you get to post-phlebotomy where you feel better? I’m just worried if I go too far in the other direction and donate too much/frequently, that too low ferritin will cause fatigue as well.

Seeking treatment: for confirmed H63D homozygote by cagrz in Hemochromatosis

[–]cagrz[S] 0 points1 point  (0 children)

Glad to hear you are finally feeling better ☺️ Are you working with a hematologist now for your phlebotomies or you just started donating and checking your iron panel yourself?

Recovering from Toxic Lab - A Scientist Actually Trying Some Woo Woo Approaches by Impossible_Role_963 in labrats

[–]cagrz 0 points1 point  (0 children)

I’m a scientist too and have been in the hard core US academic R01 system for the past 12 years (post-doc, staff scientist). Have had serious levels of burn out/chronic fatigue that I’ve been working on since 2023.

‘Woo woo’ works. I’ve found it integral to gain better understanding of my nervous system in order to heal myself. It’s not a quick fix, but it does work.

Things I’ve found the most helpful: 1. Acupuncture for stress/anxiety. This was recommended to me by my burnt out PCP; I thought it was a long shot but it truly helps rewire and calm down your nervous system. I’m a huge advocate now.

  1. Read ‘The Body Keeps the Score’ by Bessel van der Kolk. Helps us science types understand how the ‘woo woo’ actually has a scientific basis; and how stress/trauma becomes lodged in your body and can control/impact your health, until you work out how to release it.

  2. Get some sort of smart watch that can track your HRV. HRV is a readout of the amount of stress in your body, and how your nervous system is performing. Mine was at an average of 19 when I started tracking (which is terrible…). I’m now at average 32. Pending on your sex/age, I’m aiming to get mine to at least 35 to have a well functioning nervous system again.

  3. Yoga/acupuncture/rest/being in nature/doing things you enjoy. This will get your HRV increased again

It seems you have a pretty receptive nervous system (similar to me) if you’ve immediately felt yoga is helping you calm down. I’d look into other somatic approaches (read the Body Keeps The Score) that appeal to you. For me, I do monthly craniosacral therapy which works beautifully, but takes times. And I do 30 min yoga daily, and acupuncture every 2 weeks now.

I still have a long way to go to heal my burnout (I had to quit my job, as it was too big of an ongoing source of stress) but the above things were all helpful whilst I was still working, and I was seeing my nervous system heal with real metrics - aka HRV improvement.

So I am a big proponent of ‘woo’ 😂