Help please - can't stop crashing

[Crux]

Thanks, hydralyte has salts so should be ok there.

I don't know how much NaCl is in hydralyte, but I mean salt your salt.

My crashes are different than an adrenal crisis.
My crashes are from some chronic infection, or some reaction to something I've tried to increase energy or lower pain.

Crashes also come from some unknown stressor.

 

[GlassCannonLife]

@GlassCannonLife, what do you mean by crashing? What symptoms does that refer to?

Normally the term crashing is used by ME/CFS patients to mean an episode of PEM which lasts some days or weeks.

Yeah I mean my normal PEM style crash - it normally comes with adrenal insufficiency symptoms so I can never tell what part is from where.

I have strong nausea, get short of breath, have a high hr, start having a fever, and have a nasty anxiety-like feeling in my chest. Normally some pregnenolone would help me with this, even in my worst crashes.

Currently, I've been having to increase my dose every day and now massively in the last few days. Having to take 50 mg pregnenolone every 20 min or so to stabilise the nausea and breathlessness.

It feels exactly like adrenal insufficiency is described as and it is somewhat helped by corticosteroids but apparently not entirely.. Just don't know what to do atm.

 

[GlassCannonLife]

I don't know how much NaCl is in hydralyte, but I mean salt your salt.

My crashes are different than an adrenal crisis.
My crashes are from some chronic infection, or some reaction to something I've tried to increase energy or lower pain.

Crashes also come from some unknown stressor.

But when you crash are your symptoms at all similar or only different?

 

[Judee]

I have to think about this a bit but just off the cuff, I wonder if you're getting law of diminishing returns with the steroids.

I've always felt for myself that they may help me get over a temporary bump in the road (like one of the times my Mom went into the hospital) but after that they revved up my system so much that they me crash worse.

I call them "exercise in a pill" cause that’s sorta what it felt like.

Anyway, I’m not advising you to stop using them because that could be dangerous too but maybe don’t keep upping the dose because I think it becomes like a push-crash cycle.

Also, one other thought. Do you have any niacinamide in the house? Not niacin because you don’t need that awful flush but if you have niacinamide, try just a pinch maybe. It’s supposed to act in small way similarly to benzos.

I like the idea of getting more electrolytes but I think it’s better to get them from food if you can…also less jarring.

Some of the things that used to help with my crashes (and sometimes still do a little) are vitamin c, licorice, chocolate, zevia caffeine cola, grapefruit or grapefruit juice.

Just be aware that licorice can short you on potassium and also raise your bp but it is also supposed to be anti-viral to some degree and that and the grapefruit juice support adrenals so it may actually help your dose of steroids last longer. (use caution) Plus, they can also react with medications.
https://pubmed.ncbi.nlm.nih.gov/21896619/

https://archive.kpcc.org/blogs/news...ruit-drug-interactions-rise-85-prescription-/
and for licorice interactions: https://www.drugs.com/drug_interactions.html (That second one doesn't have grapefruit )

https://cfsremission.com/treatment/symptom-mitigation/core-licorice-glycyrrhiza/

https://ndnr.com/womens-health/a-craving-for-licorice/

Please if you try any of my go-tos remember the ME adage to “start low and go slow.”

I’m sorry you’re going through this now. Its sounds miserable. I would be panicked too. Saying a prayer for you to be able to figure it out very soon so you can reverse the trend.

Don’t give up, okay. Remember we’re here if you need to vent some more.

 

[GlassCannonLife]

I have to think about this a bit but just off the cuff, I wonder if you're getting law of diminishing returns with the steroids.

I've always felt for myself that they may help me get over a temporary bump in the road (like one of the times my Mom went into the hospital) but after that they revved up my system so much that they me crash worse.

I call them "exercise in a pill" cause that’s sorta what it felt like.

Anyway, I’m not advising you to stop using them because that could be dangerous too but maybe don’t keep upping the dose because I think it becomes like a push-crash cycle.

Also, one other thought. Do you have any niacinamide in the house? Not niacin because you don’t need that awful flush but if you have niacinamide, try just a pinch maybe. It’s supposed to act in small way similarly to benzos.

I like the idea of getting more electrolytes but I think it’s better to get them from food if you can…also less jarring.

Some of the things that used to help with my crashes (and sometimes still do a little) are vitamin c, licorice, chocolate, zevia caffeine cola, grapefruit or grapefruit juice.

Just be aware that licorice can short you on potassium and also raise your bp but it is also supposed to be anti-viral to some degree and that and the grapefruit juice support adrenals so it may actually help your dose of steroids last longer. (use caution) Plus, they can also react with medications.
https://pubmed.ncbi.nlm.nih.gov/21896619/

https://archive.kpcc.org/blogs/news...ruit-drug-interactions-rise-85-prescription-/
and for licorice interactions: https://www.drugs.com/drug_interactions.html (That second one doesn't have grapefruit )

https://cfsremission.com/treatment/symptom-mitigation/core-licorice-glycyrrhiza/

https://ndnr.com/womens-health/a-craving-for-licorice/

Please if you try any of my go-tos remember the ME adage to “start low and go slow.”

I’m sorry you’re going through this now. Its sounds miserable. I would be panicked too. Saying a prayer for you to be able to figure it out very soon so you can reverse the trend.

Don’t give up, okay. Remember we’re here if you need to vent some more.

Thanks Judee. Not been doing anything to push. Been resting as much as possible and having minimal covid symptoms in the last 2 weeks, just the fatigue mainly. Fatigue was getting worse and worse and needing more support.

Went to hospital on Saturday, lay down the whole time feeling terrible. Got home Saturday night and literally been bed rest until now (Monday morning) but just still needing more and more support..

Going to try some cumin now. Might cause rebound PEM but I don't know if I have a choice atm.

 

[Crux]

But when you crash are your symptoms at all similar or only different?

Sometimes it's a tough call when I need some extra HC.
I try to make it the last thing I do as a remedy. The long term effects of high dose HC can be very damaging,

There used to be a longer warning period. . Vomiting is guaranteed, so is diarrhea. I often fall and injure. That's a crisis. It's been ~ 10 months since last crisis. Good.

When I crash, there usually isn't nausea, but if so, it's very mild.
I rest, of course. try to figure out why the crash. Try to find remedy. If it's something I tried ,try to find out why.
Wait it out.

I've been having good results lately with spraying a dilute H2O2 in sinuses.

It's bad you're having a miserable and prolonged crash. I wish I could find something for you.

 

[GlassCannonLife]

Thank you @Crux. I had a crisis like that in the past but now I try to keep on top of it when I first notice the signs.


@Wishful , have you encountered anyone having rebound PEM from cumin? It is mildly helpful and I'm doing very poorly. Don't want to end up worse by using it though..

 

[GlassCannonLife]

Ok so a tsp of cumin has cut through most of the symptoms as much as a heap of hydrocortisone and pregnenolone.. I guess that means it's not adrenals directly? Just my PEM manifests exactly like adrenal insufficiency..? Or it is somehow induced by my PEM?

I guess I will do strict rest and try and have cumin every few hours as needed.. Just can't run out now. As long as there's no rebound PEM..

 

[GlassCannonLife]

Ok false celebration..! Lol. Cumin definitely helps but feeling a bit nauseated and shitty anyway.. Having more pregnenolone.

Don't know how I'll get through this one guys.. Never had a crash continually get worse day by day for over a week before..

 

[Shanti1]

Still struggling, had 60 mg hydrocortisone and 700 mg pregnenolone already and it's 6 am.

Is it possible that adrenals need more than this?? It seems like so much already. Don't know what to do..

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.

 

[Violeta]

I don't know what to try next, but I from reading about COVID, I am thinking that a way to consider what to do next is looking at it as oxidative stress or cytokine storm.

 

[GlassCannonLife]

Spoke to my GP. He thinks if I need more pregnenolone I should just let myself start to crash and go to the hospital and try and get admitted.

Has anyone had a good experience with going to hospital? Not sure what to do.. Again

 

[Martin aka paused||M.E.]

Spoke to my GP. He thinks if I need more pregnenolone I should just let myself start to crash and go to the hospital and try and get admitted.

Has anyone had a good experience with going to hospital? Not sure what to do.. Again

I don’t know how it’s in the US but in Germany they wouldn’t give you hormones if they don’t see evidence that indicates a hormone replacement therapy

 

[GlassCannonLife]

I don’t know how it’s in the US but in Germany they wouldn’t give you hormones if they don’t see evidence that indicates a hormone replacement therapy

Thanks - I'm in Australia but yeah I think it is the same. I don't know if more pregnenolone is the answer (I have more), I just more don't know how to stop the crash build up..

Like I start to feel weak, fevery, nauseated, trembling, intense anxiety feeling in the chest area, etc. Is that how you feel when you crash? I don't ever see people mention the same things that seem to happen to me.. I let it go a couple of years ago and ended up vomiting and going hypo but then a small dose of pregnenolone restored me to function so I thought it must have been an adrenal crisis as the symptoms match..

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..?

 

[Violeta]

I don't know where to go with this but somebody else might.

Vagus nerve plays a part in nausea and vomiting.

"Dopamine is a neurotransmitter responsible for many functions throughout the human body. In the brain, dopamine plays several crucial roles in motor control, cognitive function, pleasure/reward system, hormonal control, and nausea and vomiting."

 

[GlassCannonLife]

I don't know where to go with this but somebody else might.

Vagus nerve plays a part in nausea and vomiting.

"Dopamine is a neurotransmitter responsible for many functions throughout the human body. In the brain, dopamine plays several crucial roles in motor control, cognitive function, pleasure/reward system, hormonal control, and nausea and vomiting."

Thanks @Violeta that's a good idea. I wonder if I'm having neurotransmitter deficiencies from some type of brain inflammation..?

I have l-tyrosine, I'll try it in the morning if I make it ok

 

[GlassCannonLife]

@Martin aka paused||M.E. forgive my asking, but how do you know when you get more severe than severe? I've only been housebound.. Do you feel generally ok but you get PEM from getting up etc? How can you find your limit? It seems like it'd be so hard.

 

[Violeta]

Thanks @Violeta that's a good idea. I wonder if I'm having neurotransmitter deficiencies from some type of brain inflammation..?

I have l-tyrosine, I'll try it in the morning if I make it ok

I saw a study that says peroxynitrite blocks dopamine receptors.
And I also saw a study that covid causes peroxynitrite. (Bad wording, but it's 3AM here and I can't sleep)

 

[GlassCannonLife]

I saw a study that says peroxynitrite blocks dopamine receptors.
And I also saw a study that covid causes peroxynitrite. (Bad wording, but it's 3AM here and I can't sleep)

Thank you! Let's hope it'll help.

Sorry you can't sleep. 3 am is the worst time of the day!

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. forgive my asking, but how do you know when you get more severe than severe? I've only been housebound.. Do you feel generally ok but you get PEM from getting up etc? How can you find your limit? It seems like it'd be so hard.

After thousands of crashes I know my limits. They fluctuate