Unable to Lay Down

[MorganIsASiren]

Hi has anyone experienced pots where they were UNABLE TO LAY DOWN AT ALL? If or when I do I get:

severe burning in my chest(not like gerd or heartburn), arms, neck, and sometimes face, severe anxiety and panic attacks, bad joint pain and sometimes muscle pain, vision changes, tremors, shaking, flushing, unstable high BP. 

I also feel like my body will shut down if I lay down or most severe restless leg for my chest, arms, etc. No burning below my waist. 

If I am able to lay down I can only lay on my right side or all of the symptoms start.

This is worst at Night. No sleep. 

I haven't found anything on the internet that has lead me to any answers even with rare diseases.

The only thing close I found was adrenaline dumping causes you to be restless.

Although some of these things I now feel even when sitting up and standing it's much worse when laying down. 

These symptoms are all worsening. It's truly unbearable and I haven't really slept since the first of October. 

I was recently diagnosed with hyperandrenergic pots and MCAS. I was diagnosed with POTs years back but due to medication intolerances or side effects, unable to take pots medications for management. 

I've also developed since October medication intolerances to even meds I've been on for years. 

 If Anyone knows what this is or has any help or can refer me to someone on here who can help, please do. I'm at my wits end and I won't be able to live much longer if things continue or progress without intervention. I just want my old pots life back.

Thank you ahead of time,

Morgan

 

 

[JaneEyre9]

What you are dealing with sounds truly miserable! The medication intolerances are something I can relate to, and it turned out the cause for my POTS symptoms was intestinal permeability caused by dysbiosis. I changed my diet to be anti-inflammatory and took natural antifungals like coconut oil and olive leaf extract, histamine-reducing probiotics, and l-glutamine to heal the gut lining. It gave me my life back, and I am still working to improve my bacterial overgrowth and the consequences of it. Please also look into toxic mold if you have any water damage in your home. It can be hidden but cause major health issues. This was the trigger for my illness.

[Pistol]

@MorganIsASiren I have HPOTS and developed this same inability to lie down during a brief trial of clonidine. Do you take any meds that could be causing this?

[MorganIsASiren]

@Pistol Thanks for taking the time to respond! when this first started I weaned myself off all of my medications including pain meds with the exception of BP meds. I eventually had to get back on pain medications as I have severe neuropathy and a bladder disease but that too I changed in case it was a problem. It made no difference. I was finally introduced to  in December to Clonidine. It has helped stabilize my BP most of the time but hasn't helped my ability to lay down at all. I'm not sure if it's not making things worse to be honest. Did you try something else after? Find any luck with anything else? So, as far as original medications I'm still on it's BP meds but they are extremely reduced as I've lost 30 pounds since this started. So, they too were lowered. Endocrine says its nothing to do with them and think it's fine. How is not being able to lay down or sleep for months, fine? Lol. I really appreciate the response. Any tips or thoughts, questions, please feel free to continue to correspond. Everything is helpful! It's nice to finally meet someone with Hyper pots . ❤️

[MorganIsASiren]

@JaneEyre9 Thanks for your response! You've given me a lot to look up and look into. Histamines have definitely causes me issues. Are you taking any medications for them? International permability sounds a lot like some of my issues. How was this diagnosed and by who? 

The medication intolerances have been such a disaster and seem to have last affects after. Hives I don't mind, but severe anxiety with panic attacks, it's just too much. I even experience these things taking ANY medication even in small doses.

Im.currently on a low histamine diet and fodmap and eat as organic and fresh as possible and follow mast cell guidelines online. Doesn't seem to matter. If I eat anything I have adrenaline spikes, panic attacks, anxiety. I've lost 30 pounds so far. I truly hate eating now.

Antifungals! Since this started I've had tons of fungal issues. I literally slap coconut oil all over myself each day to prevent it or I'm overloaded with it.

Would you mind sharing the products you used and where you procured them? Thank you!

Doesnt seem to be water or mold here. My place is two years old and I keep it clean. I live in a dry climate. But you're right, you never know. I'll look into it. Thank you.

Again, if you have any more ideas, thoughts, questions, or can refer me to anyone on these issues, please do. Thank you so much for taking the time to respond. 

 

❤️ Morgan

[JaneEyre9]

14 hours ago, MorganIsASiren said:

How was this diagnosed and by who? 

Hi Morgan -

The Cleveland Clinic offers both integrative and functional medicine departments to help with finding the root cause of chronic illness. An MD there diagnosed me in 2010, and I was incredibly skeptical. I had previously been prescribed beta blockers, florinef, midodrine, compression socks, a high salt diet, birth control pills, and cardiac rehab. I reacted poorly to all of these (except the compression hose!) so I was willing to try the prescribed diet change and to supplement vitamin D since I was deficient. Those initial changes made a big difference, so I kept going with the treatment recommendations and slowly regained function. The Candida antibodies in my blood showed that I was reacting to yeast, thus I went on olive leaf extract. The yeast dying off made me miserable, so I had to go very slowly. I've since learned about binders like activated charcoal to help. I was convinced this was working once I was able to do things like stand to cook a meal and go for a walk on the same day! 

Please message me or reply here if I can help further. Finding the right functional medicine doctor can make all the difference. The Mastcell360 website might have some helpful resources for reading up on sensitivities:

https://mastcell360.com/histamine-lowering-probiotics-for-people-with-mast-cell-activation-syndrome-and-histamine-intolerance/

[Pistol]

17 hours ago, MorganIsASiren said:

I was finally introduced to  in December to Clonidine. It has helped stabilize my BP most of the time but hasn't helped my ability to lay down at all. I'm not sure if it's not making things worse to be honest. Did you try something else after? Find any luck with anything else?

My autonomic specialist tried most recommended meds for HPOTS with me but nothing really worked until I tried the calcium channel blocker Diltiazem. In HPOTS we suffer usually from excessive sympathetic overcompensation, causing the blood vessels to contrict and therefore restricting blood flow to the brain, along with tachycardia and hypertension. The Diltiazem keeps the vessels relaxed and lowers BP. I n addition I take the beta blocker Carvelidol which helps with tachycardia and palpitations.

I am not able to keep oral fluids in my body, since I have an overactive bladder, so hydration is difficult for me. Since this was last resort for me I have a port and get twice weekly infusions, but this is not a commonly used practice and most people do not have to go this dramatic route. Adequate hydration and regular exercise as well as avoiding overstimulation and taking FREQUENT restperiods are important! I used to not be able to sleep due to the high adrenaline levels, but since I have established a routine that allows me to be active yet rest often and when needed I am able to sleep well. I do have a prescription for low dose Ativan that I can use when too stimulated, and some nights I will take one before bed time, but rarely.

I assume that MCAS can cause a type of hyperstimulation as well, so your supine and night time troubles may possibly improve if the MCAS si controlled. Are you on H1 and H2 blockers?