Inability to sleep, chest pain, please help

[ChelsBells]

Hello,

I would so greatly appreciate y'alls help. Please forgive me if this is all over the place. @haidut Over the last few days I've been experiencing some pretty scary issues and have been seen by seven different doctors in ER/Urgent Care/Clinic. Most are suspecting this may be vertigo or a POTS flare up, but some of the symptoms they thought may not be related to POTS.

I was laying back in bed, and just started to feel like I was losing consciousness. I felt just an all over uneasy feeling. My heart rate started up, so I sat up in bed and it still happened. I felt the need to shoot up out of my bed and stand (which is unusual for POTS). If I kept moving, I felt slightly better. I had quite a few episodes, tried to calm down and get to sleep and things got worse when I tried to lay (even slowly transitioning to laying).

So I went into urgent care. And they chalked it up to vertigo and gave me meclizine to take. The next day, if I simply just looked down - I felt like I was going to pass out - so I went back into the clinic. The other doctor chalked it up to vertigo as well. Although the nurse said "I see symptoms like yours in the cardiac faint & fall clinic all the time, I would suspect POTS but I'm not a doctor".

That night, the same thing happened when I was falling asleep - it almost felt like my body was not allowing me to sleep and almost like it was sleep apnea while I was awake (despite being in a sitting up position). As soon as I remotely relaxed I would get a weird chest feeling, major rushes of adrenaline, fast heart rate, shaking, diarrhea, panic, cold extremities, difficulty catching breath. So I went to the ER. They did an EKG, D-Dimer, and a whole bunch of other tests.

I had numbness in my face, ears, neck and cold extremities would come and go. When I could not breath and my heart rate was going up, I thought I was going to die. It happened the second might in a row now with added pressure/pain near my diagphram or potentially in my back near my lungs?

The EKG was good. They put a holter monitor on me.

I am trying to stay as relaxed as possible. Trying not to obsess over this but I just want some answers. I have gotten about 17 hrs of sleep over the past 4 nights. I cannot sleep. Yet I am exhausted. As soon as I start to fall asleep, I get a stomach dropping feeling, or chest pain, or difficulty getting breath.

Worth mentioning, I have Ehlers-Danlos, (I believe I have) endometriosis, and I suspect I have cranial instability that may have hurt something in my neck and that sparked POTS episodes. I know POTS can feel miserable, (not to be dramatic) but I was preparing to die the other night. I feel slightly better today but still cannot sleep.

Please help.

 

[andrewlee224]

I had something slightly similar last year.. also felt terrible, had very strange and scary sensations around my heart. Couldn't fall asleep as I was so 'wired and tired'. Also I felt my heartbeat in my ears (like blood pounding) which also scared me and prevented me from falling asleep.. I believe it was triggered by a bout of mental and physical stress.
Had EKG/holter/heart ultrasound which did not show anything out of the norm.
That was the catalyst to look more into Ray Peat actually, because any other stuff I tried failed (like 'eating clean' - i.e. eating stuff devoid of energy...).
I remember red light did help me and even allowed me to fall asleep - I already had a red light lamp back then.
I also felt better after drinking water with sugar, or salt (not at the same time). I must have been in an extremely low energy state and even simple things like these helped me. Since then I've switched to drinking OJ rather than sugared water, but I didn't have access to quality OJ then.
If I had more knowledge or peaty supplements back then I think I would've definitely tried cyproheptadine/pregnenolone/progesterone to recover more quickly.

 

[Jessie]

Isn't POTS an CNS issue? Trying something like frequent high doses of thiamine hcl might help this issue, say, around 400-500mgs three to four times a day.

 

[SonOfEurope]

Updates?

 

[ChelsBells]

I had something slightly similar last year.. also felt terrible, had very strange and scary sensations around my heart. Couldn't fall asleep as I was so 'wired and tired'. Also I felt my heartbeat in my ears (like blood pounding) which also scared me and prevented me from falling asleep.. I believe it was triggered by a bout of mental and physical stress.
Had EKG/holter/heart ultrasound which did not show anything out of the norm.
That was the catalyst to look more into Ray Peat actually, because any other stuff I tried failed (like 'eating clean' - i.e. eating stuff devoid of energy...).
I remember red light did help me and even allowed me to fall asleep - I already had a red light lamp back then.
I also felt better after drinking water with sugar, or salt (not at the same time). I must have been in an extremely low energy state and even simple things like these helped me. Since then I've switched to drinking OJ rather than sugared water, but I didn't have access to quality OJ then.
If I had more knowledge or peaty supplements back then I think I would've definitely tried cyproheptadine/pregnenolone/progesterone to recover more quickly.

Thank you so much for your reply. Although it's taken me so long to respond - I read this and although it's unfortunate you experienced these same symptoms, it made me feel not so alone at the time. So, thank you for sharing your experience. It truly helped me.

Doctor's haven't been able to pinpoint what this is. I'm still going to doctors appointments. However, I have started working a lot more on my mental and physical health, as I was extremely stressed the day before this started (as you mentioned stress may have induced your spells too).

I have also started to focus more on not only mental and physical health, but my energy state as well - like paying attention to body temps, energy levels, etc. I'm going to keep Peating, being grateful for the health I do have, and hopefully the anti-inflammatory foods will help. I hope this never happens to you again! Take care.

 

[ChelsBells]

Isn't POTS an CNS issue? Trying something like frequent high doses of thiamine hcl might help this issue, say, around 400-500mgs three to four times a day.

Thanks for your help! I believe you're right, either than or an ANS issue - I'm not sure which. Does Thiamine need to be supplemented with anything else? (I can also look this up, but figured you might know).

 

[ChelsBells]

Updates?

Thanks so much for your concern. They did multiple EKG's, a halter monitor, an echocardiogram, a test for Postural Orthopedic Tachycardia Syndrome & Mast Cell Activation Syndrome, and some type of tumor. Everything looks good. I am still getting tremors at night, but during the day I am able to function pretty normally. I know it's not the best, but I have been taking .125 mg of lorazepam at night and that's what makes the tremors stop so I can sleep.

I'm hoping to not have to supplement with this much longer or that my doctor can find me a better solution for the tremors right now. In the meantime, I'm trying to find out what may be causing my tremors and how to make them stop more naturally like with food and movement.

Although, I suspect this flare up may have to do with stress that triggered something to do with Ehlers Danlos.

Currently, I'm trying to get some answers (but not trying to obsess) I'm using food as medicine. I'm doing leisurely walks, meditation, and trying to get to get these tremors at night to stop. My mental health was very poor before this, I constantly felt like I was in fight or flight mode and I've noticed being mindful, doing meditation, eating healthy, and exercise is already helping a lot with anxiety and stress.

 

[Peatness]

Thanks for your help! I believe you're right, either than or an ANS issue - I'm not sure which. Does Thiamine need to be supplemented with anything else? (I can also look this up, but figured you might know).

You could have magnesium deficiency? It's one of the first minerals to be wasted when stressed. I would correct that before supplementing thiamine. Epsome salt bath or foot soak is very effective.

I am not sure what condition you have but as you mentioned POTS this article might be of some use

Autonomic dysfunction

The autonomic nervous system (ANS) is responsible for controlling blood pressure, fluid and salt balance in blood and body tissues, visceral (e.g. heart, lung, kidney, bowel) function and body temperature. Individuals with hypermobile Ehlers-Danlos syndrome (hEDS) can suffer with symptoms that...

www.ehlers-danlos.org

 

[Jessie]

Thanks for your help! I believe you're right, either than or an ANS issue - I'm not sure which. Does Thiamine need to be supplemented with anything else? (I can also look this up, but figured you might know).

Not really. Like @Pina said, you could try magnesium. Both thiamine and magnesium need each other as co-factors to work properly, and unsurprisingly a deficiency in either results in similar symptoms. But I believe thiamine deficiency is more specific to nervous system complications.

As a disclaimer, I should let you know I'm completely unfamiliar with POTS. So take my advice with a grain of salt. But I think thiamine would be worth a try considering it can help (even cure) other CNS adjacent issues like beriberi.

 

[ChelsBells]

Updates?

Thanks so much for your concern. They did multiple EKG's, a halter monitor, an echocardiogram, a test for Postural Orthopedic Tachycardia Syndrome & Mast Cell Activation Syndrome, and some type of tumor. Everything looks good. I am still getting tremors at night, but during the day I am able to function pretty normally. I know it's not the best, but I have been taking .125 mg of lorazepam at night and that's what makes the tremors stop so I can sleep.

I'm hoping to not have to supplement with this much longer or that my doctor can find me a better solution for the tremors right now. In the meantime, I'm trying to find out what may be causing my tremors and how to make them stop more naturally like with food and movement.

Although, I suspect this flare up may have to do with stress that triggered something to do with Ehlers Danlos.

Currently, I'm trying to get some answers (but not trying to obsess) I'm using food as medicine. I'm doing leisurely walks, meditation, and trying to get to get these tremors at night to stop. My mental health was very poor before this, I constantly felt like I was in fight or flight mode and I've noticed being mindful, doing meditation, eating healthy, and exercise is already helping with anxiety and stress.

 

[ChelsBells]

You could have magnesium deficiency? It's one of the first minerals to be wasted when stressed. I would correct that before supplementing thiamine. Epsome salt bath or foot soak is very effective.

I am not sure what condition you have but as you mentioned POTS this article might be of some use

Autonomic dysfunction

The autonomic nervous system (ANS) is responsible for controlling blood pressure, fluid and salt balance in blood and body tissues, visceral (e.g. heart, lung, kidney, bowel) function and body temperature. Individuals with hypermobile Ehlers-Danlos syndrome (hEDS) can suffer with symptoms that...

www.ehlers-danlos.org

Thanks so much for that article!

So, the thing that stumped doctors is that normally when patients have POTS they feel better when laying down - but that's when I feel the worst. Like, I can generally function well throughout the day but as soon as I lay down for bed, I get tremors, which I may have been mistaking for adrenaline surges?

When it was really bad my blood pressure and heart rate would sky rocket as soon as I would lay down all of the way for bed.

They tested me for a more rare form of POTS called Hyperadrenergic POTS which can raise blood pressure instead of lowering it. They tested my norepinephrine levels and did a tilt table test to check for Hyper POTS & Regular ol' POTS and concluded I had neither.

My major lasting symptom now are the tremors when lying down.

I was supplementing with topical Magnesium Oil when the dizziness started, at the ER they told me to stop that immediately and tested my magnesium levels. Which were fine - 2.2mg/dL and the standard range is 1.6 - 2.6mg/dL.

I was taking magnesium oil, aspirin, and grassfed dessicated liver pills but stopped taking all of those just to be safe.

 

[ChelsBells]

Not really. Like @Pina said, you could try magnesium. Both thiamine and magnesium need each other as co-factors to work properly, and unsurprisingly a deficiency in either results in similar symptoms. But I believe thiamine deficiency is more specific to nervous system complications.

As a disclaimer, I should let you know I'm completely unfamiliar with POTS. So take my advice with a grain of salt. But I think thiamine would be worth a try considering it can help (even cure) other CNS adjacent issues like beriberi.

I read an article about beriberi and thiamine after you suggested thiamine - really fascinating how one vitamin (or lack thereof) can wreak havoc on the body. I was drinking Body Armor drinks thinking they had B1 - but they don't. I should probably start magnesium & thiamine up.

 

[Peatness]

sorry wrong post

 

[Jessie]

I read an article about beriberi and thiamine after you suggested thiamine - really fascinating how one vitamin (or lack thereof) can wreak havoc on the body. I was drinking Body Armor drinks thinking they had B1 - but they don't. I should probably start magnesium & thiamine up.

Oh definitely. For all the talk you hear about vitamin D or vitamin C or whatever, as important as they are, vitamin B1 is perhaps the most underrated vitamin that hardly no one (Dr. Lonsdale excluded) is talking about. If you're deficient in B1, hardly nothing will function properly within the body.

 

[Nemo]

Hello,

I would so greatly appreciate y'alls help.

Not saying this to be scary, but I had symptoms like this when I had cancer. That doesn't mean you have cancer. It might be as simple as panic attacks from fatty acid oxidation rather than glucose oxidation.

I went to emergency clinics twice with the panic attacks and they couldn't find anything wrong.

If this is what's happening, Idealabs' Pyrucet would be very helpful. If Pyrucet is helpful, you need to continue with a Peat-type diet to get your metabolism back to working the way it should.

You might even start with a couple of aspirin or 25 mg of niacinamide every few hours, always with a glass of OJ or sugared and salted skim milk. If that seems to help, let us know and we'll help you get Peating.

 

[ChelsBells]

Not saying this to be scary, but I had symptoms like this when I had cancer. That doesn't mean you have cancer. It might be as simple as panic attacks from fatty acid oxidation rather than glucose oxidation.

I went to emergency clinics twice with the panic attacks and they couldn't find anything wrong.

If this is what's happening, Idealabs' Pyrucet would be very helpful. If Pyrucet is helpful, you need to continue with a Peat-type diet to get your metabolism back to working the way it should.

You might even start with a couple of aspirin or 25 mg of niacinamide every few hours, always with a glass of OJ or sugared and salted skim milk. If that seems to help, let us know and we'll help you get Peating.

Uff da. I'm so sorry to hear that - how are you doing now? And if you dont mind me asking what type of cancer?

Did you have the tremors when lying down? That's my main symptom now. They did a CT scan of my head and neck and didn't find anything alarming there.

Thank you for your help with this - Peating is a lot of work trying to balance everything.

One of my thyroid levels was very high. Aside from HEDS, I believe I also have endometriosis. I was extremely stressed before this happened.

For the last like, 3 years at least I have been in a stressed state. I wasn't exercising at all and eating like crap. I'm hoping I can reverse whatever I did - forgive myself - and heal with time.

 

[loess]

Highly recommend watching the videos on Eliot Overton's YT channel on thiamine deficiency and on the therapeutic efficacy of thiamine tetrahydrofurfuryl disulfide (TTFD or sometimes referred to as allithiamine) in addressing some the kinds of issues you're having. TTFD was a miracle for my recovery from a COVID infection and also with what I've come to realize was a long-standing B1 deficiency. His product Thiamax is very good, but it is quite powerful and so important to educate yourself on the context and cofactors around thiamine before jumping in on supplementing it. I started with very small doses and have been slowly and carefully titrating up.

Dr. Chandler Marrs has a website called Hormones Matter with excellent information on thiamine and its fundamental role in the production of energy at the cellular level. She co-authored a book with Derrick Lonsdale called Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition. You can preview a good portion of it for free on that Amazon link.

 

[Nemo]

Did you have the tremors when lying down? That's my main symptom now. They did a CT scan of my head and neck and didn't find anything alarming there.

Thank you for your help with this - Peating is a lot of work trying to balance everything.

One of my thyroid levels was very high. Aside from HEDS, I believe I also have endometriosis. I was extremely stressed before this happened.

For the last like, 3 years at least I have been in a stressed state. I wasn't exercising at all and eating like crap. I'm hoping I can reverse whatever I did - forgive myself - and heal with time.

Brain and sinus, Chels. Yes, had tremors. Can't remember if they were only when lying down.

That's excellent that your CT scan and EKG were normal. Great start!

Was it your TSH level that was high? Did any doctors talk about supplementing thyroid for you?

So let's deal with this stress. We may not be able to control what the world is throwing at you, but there is a lot we can do to control your body's stress reaction.

How much do you know about a Ray Peat diet? How much do you know about how to check thyroid function at home?

What's your diet like right now?

I'd get started with more sugar/fruit and salt right away. Just add them to whatever you're already eating or replace some starch with fruit/sugar. Aspirin too. Are you off polyunsaturated fats yet?

 

[SonOfEurope]

Happy to hear back from ya, whatever is helping keep it up, the lorazepam, my story with benzoes is different, tremors at night sounds terrifying but at least it's the good time of the year to heal too you know what I mean.

Have you gained a bit of weight? I believe you were underweight, just eat what you crave as long as its low Poly and don't care about anything else.

 

[ChelsBells]

Brain and sinus, Chels. Yes, had tremors. Can't remember if they were only when lying down.

That's excellent that your CT scan and EKG were normal. Great start!

Was it your TSH level that was high? Did any doctors talk about supplementing thyroid for you?

So let's deal with this stress. We may not be able to control what the world is throwing at you, but there is a lot we can do to control your body's stress reaction.

How much do you know about a Ray Peat diet? How much do you know about how to check thyroid function at home?

What's your diet like right now?

I'd get started with more sugar/fruit and salt right away. Just add them to whatever you're already eating or replace some starch with fruit/sugar. Aspirin too. Are you off polyunsaturated fats yet?

Thank you so much for helping me. You're an awesome human.

These are my TSH Reflex Free T4 results:

Your Value 6.870 uIU/mL
Standard Range0.465 - 4.680 uIU/mL

They did not say I need to start supplementing for the thyroid but they did say they wanted me to return in 6 - 8 weeks to test these levels again.

I have suspected a thyroid issue for a while, I am overweight but don't eat all that much. Graduating college last year was hard af due to brain fog, lack of concentration.

When I started to read about Peat's work (in January of 2020) it made a lot of sense. I started a Happy Thyroid Diet and lost weight really quickly. But the diet was so restrictive, I found it really hard to do the research I needed to do, read the scholarly articles posted because comprehending the reading took me so long. It was really overwhelming to read enough information to formulate a balanced diet based on the info here. And after Peating for a while, I started to feel really weak, so I gave up, and went back to most of my old ways. I continued doing daily Orange juice, grass fed milk, butters & meats but little else besides that.

I am also anemic probably due to Endometriosis. The anemia is a big reason why I started dessicated grass fed liver up because of the heme-iron. But I took that for three months and felt good, but then these spells started severely & abruptly. I really didn't want it to be the liver because it helped with my endometriosis better than anything ever has. But I stopped taking it just in case, initially I thought it could be heavy metal poisoning.

Prior to taking liver though, I had two of these spells they just were way less severe and I blamed feeling faint and a rapid heart rate on anemia.

But, I tried my hardest to think of what I had changed in the last year and a half. And a few months before my first spell, I was drinking Body Armor supplement drinks daily.

Based off all of the information about thiamine everyone has mentioned, I am starting to think the high amounts of B3, B6, B12 Vitamins in both the Body Armor and Liver (&too much sugar) depleted my body of B1 & B2. Potentially leading to a severe B1 deficiency?

I have started a B1 supplement, started taking magnesium again, and will start B2 as soon as it arrives. I'm going to continue to supplement with the other B-vitamins as well. As I read a few places that if you supplement one B vitamin it's important to supplement with the others as well. I am walking everyday and trying to meditate daily too. I'm cutting out Pufa's as much as possible (I still eat my Mom's home cooking monthly though).