Help please - can't stop crashing

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Hi @GlassCannonLife I'm so sorry to hear about your crash and hospital visit. I tend to agree with Judee about the hydrocortisone. While PWME often to have low cortisol and feel better with replacement,40-60mg hydrocortisone is above what the body would make physiologically, so if you are on that dose and still have crash symptoms, I would venture that the symptoms are due to more than adrenal insufficiency. That isn't to say a higher dose can't be helpful to suppress inflammation and an overactive immune system, jump-start the engines a bit, increase blood sugar, but at that point, it is a very pharmacological effect beyond what the body would normally do and isn't sustainable without some negative effects. Of course, if you feel it is helping, we do what we need to to get through a crash. I think you know it can't be stopped suddenly.

Are you still testing positive for COVID? It seems that even "normal" people who get COVID can pass through a couple of weeks of intense fatigue before turning around. I imagine COVID fatigue compounded on top of ME fatigue is just crushing. Anyhow, if you are still testing positive, do you think trying to get ahold of some Paxlovid would be worth it?

These are probably thoughts for another time, but pregnenolone In addition to being the "mother" hormone" is such a neurally active steroid with mechanisms on multiple neurotransmitter receptors, looking at those actions may help you find other things that could be useful. I'm guessing your pregnenolone receptors have down-regulated quite a bit atm due to the large amount of pregnenolone that must be circulating in your system, making it harder to get the same previous response.

Sending you my best wishes to feel better soon. I wish I had a magic bullet, I wish I had one for all of us.
Thanks @Shanti1 , sorry I was too ill to reply properly before but I appreciate your input.

Not sure if I already said here but I spoke to my endo and GP today and they both are recommending that I stick to a max of 20 mg hydrocortisone daily (GP says go down over a few days, 15 mg less each day or so). Endo wants me to limit pregnenolone to 400 mg, GP thinks try and lower gently over a number of days, and if I can't manage that without getting super unstable, to just go to the hospital again and let them witness the full crash.. Just not sure what they could do, as you'd be lucky to get a doctor that even knows what ME is.!

I'm not sure if I'd still be positive on a RAT but I heard you can be positive on those a while after you have recovered. Don't want to use the effort to try and get a PCR test. Still have a little bit of a stuffy nose and super mild cough, but traditional covid symptoms were never bad for me, it was just the fatigue and crashing that started almost right away.
 
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I don't know what's wrong.

But anyway, look up adenosine plus your symptoms.
That's really interesting.! Could it be that when I crash really badly my ATP is broken down too much and/or released into serum and I get side effects of adenosine in circulation? That's your theory right? How did you stumble onto that.

I wonder if there are any ways to improve its recycling or clear it somehow..
 

Violeta

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I had always heard that restless leg was caused by something about dopamine, but last week someone was talking about adenosine causing it. I started googling about adenosine. Last night I remembered reading about an area of the brain being involved in nausea/vomiting so I started googling about that. Then dopamine I guess was my first neurotransmitter to search with. Tried to go back to sleep and wondered if it was interference of some sort by adenosine, and did see some stuff about excess causing nausea/vomiting. I don't know if that's the reason for you, but the adenosine/dopamine thing is so common in ME/CFS type issues, so there's a possibility.

There's a study about pathological overproduction of adenosine that I'll provide the link to, if you're curious.
Adenosine can be metabolized by adenosine deaminase or adenosine kinase. Zinc activates the deaminase, I forget if there's something to increase the kinase. Oh, caffeine activates the deaminase, too. I guess it's possible one could get too much caffeine and have some backlash, but in a bad situation it might be worth it. I find coca cola made with real sugar very helpful, I didn't know why.

But yes, body isn't breaking down the adenosine and/or not enough dopamine and/or peroxynitrite blocking dopamine receptors; it's an overwhelming amount of information for me.

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC6398520/

Pathological overproduction: the bad side of adenosine
Pier Andrea Borea
 
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Crux

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But now with all the hydrocortisone not helping (and cumin helping a bit), it makes me think it must just be my ME.. But what do you do when you start to vomit and pass out and start to get numb arms and face? Have to call the ambulance right..?

The numb arms and face may be a symptom of another condition; Calcium deficiency. HC can lower it. HC can lower potassium too, but often it's the Calcium with numb face.

Hypocalcemia, if it shows up in blood serum, though it may not, can cause heart arrhythmia and make you pass out.

I would have the Docs check for it. It can happen with covid too. May be a parathyroid issue. Docs can check :

PTH , ionized calcium , phosphorus, magnesium , FGF23, active vitamin D.


https://www.healthline.com/health/tetany#causes

'Tetany can be the result of an electrolyte imbalance. Most often, it’s a dramatically low calcium level, also known as hypocalcemia. Tetany can also be caused by magnesium deficiency or too little potassium. '
 

Wishful

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@Wishful , have you encountered anyone having rebound PEM from cumin?
No, no one has reported that effect, or any other long-term side effect. Everything we take has at least some chance of making our ME worse, but there's nothing to indicate that cumin is any more likely than anything else, and probably less so than many other things. ME is a constant experiment in seeing what works or doesn't work for us as individuals.

I'm glad that cumin is helping at least a bit. Hopefully it will keep being effective for you.
 
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Don't want to speak too soon but I am hopefully stabilising slowly.

Woke up at midnight having palpitations etc and took cumin, then at 1 am took more cumin and 500 mg pregnenolone. Managed to doze for a bit and had to take some more at 330 am. Then I just dozed on and off and have managed to slowly calm it all down, had 12 mg hydrocortisone at 530 am, and have little bits of food throughout the day.

Having intermittent moments for an hour or so here and there of the chest discomfort/crash feeling but I'm continuing to just rest and keep fluids up etc and so far it has stayed under control. Very weak and fragile but the first progress since Saturday morning.

Hoping this will continue. I'll take cumin and pregnenolone before bed and ideally will not wake up crashing again. We'll see!

Thank you all so much for your support so far.
 
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Made it through the night ok!

Weak, shakey and fried this morning but took a tsp of cumin, 200 mg pregnenolone, and 8 mg hydrocortisone. Will see how I go through the day. Going to do another IVC around lunch time.

Might try skipping cumin later on so I can get it out of my system and have a true assessment.

Seems like I have broken through the worst of it though..!
 

Wishful

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and just took a tsp of cumin as well.. Doing IV now.
I read that as: "IV cumin". "Mainlining curry". :woot:

You're doing some pretty drastic chemical changes (mostly the pregnenolone), so drastic swings in symptoms severity are likely. You might need to taper off the pregnenolone and see what sort of severity you stabilize at. Cortisols aren't something you want to take long-term. Also, it may simply stop working for you. When I first tried prednisone, it gave me complete remission, but the symptoms returned after tapering off. The second trial had the same effect. I tried it twice again, later, and it had no effect on my symptoms. That's just how many treatments work with ME. So, if higher dosages of pregnenolone don't work for you, there's probably no point in taking it (and suffering the downsides).
 
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I read that as: "IV cumin". "Mainlining curry". :woot:

You're doing some pretty drastic chemical changes (mostly the pregnenolone), so drastic swings in symptoms severity are likely. You might need to taper off the pregnenolone and see what sort of severity you stabilize at. Cortisols aren't something you want to take long-term. Also, it may simply stop working for you. When I first tried prednisone, it gave me complete remission, but the symptoms returned after tapering off. The second trial had the same effect. I tried it twice again, later, and it had no effect on my symptoms. That's just how many treatments work with ME. So, if higher dosages of pregnenolone don't work for you, there's probably no point in taking it (and suffering the downsides).
Thanks, yeah I'm trying to taper off gradually, doc thinks that would be best.

The preg appears to have functions aside from being a cortisol precursor (it addressed nausea and crash symptoms when 50 mg IV hydrocortisone didn't help at all). I'm not sure what it is - the neurosteroid activity? Gaba/glutamate balance?

Current plan is to hold this dose (550 daily total) for a few days and see if I can remain stable for the full day durations, then start reducing properly once I have achieved that for a full day or so.. Will see how it goes.

Doing 99 % aggressive rest therapy atm (less than 1 h total phone use in the day, just get up for toilet and to eat sitting in bed), so hoping that can make a dent in the PEM over the next few days/weeks.

Previously I had managed to reduce preg max 150 mg in one week (best rate ever), with an average of 35-40 per week. Will see if I can go faster than that now but worst case I will lower it over some months.. But hopefully remain stable/retain more function.

Happy to hear thoughts on the plan!


PS haha yes mainlining cumin might be the answer.! @Martin aka paused||M.E. Have you tried cumin? Just thought of your Abilify/ativan etc thread and not sure if you have ever tried using it
 
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Thanks, but I spoke too soon.. Up to 500 mg pregnenolone now and just took a tsp of cumin as well.. Doing IV now.

Struggling to stay positive.. Worried that I'm just super severe now and just haven't realised it yet or something..
Do you mix the cumin in something before taking it?
 
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Doing ok atm.!

Yesterday only took 500 mg pregnenolone during the day (woke up in the night being a bit crashy and took it at 1 am), then took 100 before bed but skipped cumin.

Last night slept pretty well finally, had a few moments where I woke feeling a little weird in the chest etc but managed to sleep and not medicate. This morning have taken 450 mg pregnenolone (trying to split to have more in the evening and less in the morning). Have had a few moments of high hr etc but feel pretty stable.

Going to keep resting completely and see how I go tomorrow morning etc. Meant to do another IVC tomorrow, which should help even more hopefully. If I can stay completely stable on this dose then I'll try dropping 50 from my morning dose and keep everything else the same.

But luckily seems like the worsening finally stopped overall and I am stabilising..not to jinx it lol but yeah.
 

Violeta

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Doing ok atm.!

Yesterday only took 500 mg pregnenolone during the day (woke up in the night being a bit crashy and took it at 1 am), then took 100 before bed but skipped cumin.

Last night slept pretty well finally, had a few moments where I woke feeling a little weird in the chest etc but managed to sleep and not medicate. This morning have taken 450 mg pregnenolone (trying to split to have more in the evening and less in the morning). Have had a few moments of high hr etc but feel pretty stable.

Going to keep resting completely and see how I go tomorrow morning etc. Meant to do another IVC tomorrow, which should help even more hopefully. If I can stay completely stable on this dose then I'll try dropping 50 from my morning dose and keep everything else the same.

But luckily seems like the worsening finally stopped overall and I am stabilising..not to jinx it lol but yeah.
Good, glad to hear you are seeing improvement!