When Lying Down Makes You Worse

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I have had this problem for years. Sometimes when I'm tired enough I can lie down and take a nap but sometimes when I lie down it is just so uncomfortable. My heart pounding and my wired symptoms seem to increase markedly. After a while sometimes they calm down and I can rest but other times I just give up - it's too darn uncomfortable.

I can think of two explanations:

interoception - the ability to hear what's happening on our bodies increases when we lie down - so I'm probably more aware of the chaos...

and I forget the other one!

Does anyone else have this?
 

PamelaG

Member
I have recently , the past year had the same issue when I go to bed my heart is pounding. Sometimes I wake up way too early to get up same thing. It's very hard to sleep. My heart is not racing it's just pounding.

I started about 16 years ago after extreme stress with the relentless fatigue and brain fog. Discovered my low bp when standing
after reading adrenal fatigue blog about 3 years ago. I own a health club and have exercised my whole adult life. I had severe fatigue after exercise or any intense mental focus. I was always puzzled by the delayed onset of this fatigue.
Over time my sleep has gotten worse and my level of activity is so much less. Since finding what was referred to as SEID, which
for me described every symptom, it had been a lifesaver!
Thanks Cort for this website
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I have recently , the past year had the same issue when I go to bed my heart is pounding. Sometimes I wake up way too early to get up same thing. It's very hard to sleep. My heart is not racing it's just pounding.

I started about 16 years ago after extreme stress with the relentless fatigue and brain fog. Discovered my low bp when standing
after reading adrenal fatigue blog about 3 years ago. I own a health club and have exercised my whole adult life. I had severe fatigue after exercise or any intense mental focus. I was always puzzled by the delayed onset of this fatigue.
Over time my sleep has gotten worse and my level of activity is so much less. Since finding what was referred to as SEID, which
for me described every symptom, it had been a lifesaver!
Thanks Cort for this website
[fright]
Skye.jpg
[fright]Wow - an owner of a health club no less! I was an avid exerciser as well...

That pounding feeling is really something - I know exactly what you are talking about.

Here's Skye by the way, one of my dogs....your picture reminded me of her.[/fright][/fright]
 

PamelaG

Member
Yes a health club! The stress of it all LOL. I have the polar h7 and I am using elite hr app. I also have used the HRV program, at the time I didn't have a Bluetooth hr monitor. It is really helpful so far, the hr is much more accurate than the finger pulse!

Love your dog!
 

Ladyliegh

Active Member
Wow, I thought it was just me, yes I often feel my heart pounding when I lay down at night. I also have to pace my breathing to slow the beats to normal. Hasn't happened much this month with flu 's & now strep...odd it is gone when I am sick.
 

Issie

Well-Known Member
I have had this problem for years. Sometimes when I'm tired enough I can lie down and take a nap but sometimes when I lie down it is just so uncomfortable. My heart pounding and my wired symptoms seem to increase markedly. After a while sometimes they calm down and I can rest but other times I just give up - it's too darn uncomfortable.

I can think of two explanations:

interoception - the ability to hear what's happening on our bodies increases when we lie down - so I'm probably more aware of the chaos...

and I forget the other one!

Does anyone else have this?
@Cort, this is very common with s POTSies and MCAS people. We raise our heads up to lay down. I usually have 2 or 3 pillows under me. It does help. Mast cells degranulate at night and this is definitely felt while lying down. Again, head up helps. Have you tried MCAS treatment ts to see if it helps?

Issie
 
Last edited:

Still Here

Active Member
I only occasionally have this issue these days. But, when I have it, it definitely prevents rest. Like, I can lay there all I want, that doesn't mean my body is actually going to relax!

When it happens, my breathing is normal, and I'm not anxious in the least. It's just that hard pounding that prevents rest and sleep. Very uncomfortable, I agree.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thanks! good idea. I will try it.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thanks! good idea. I will try it.
@Cort, this is very common with s POTSies and MCAS people. We raise our heads up to lay down. I usually have 2 or 3 pillows under me. It does help. Mast cells degranulate at night and this is definitely felt while lying down. Again, head up helps. Have you tried MCAS treatment ts to see if it helps?

Issie
 

Aidan Walsh

Well-Known Member
I have had this problem for years. Sometimes when I'm tired enough I can lie down and take a nap but sometimes when I lie down it is just so uncomfortable. My heart pounding and my wired symptoms seem to increase markedly. After a while sometimes they calm down and I can rest but other times I just give up - it's too darn uncomfortable.

I can think of two explanations:

interoception - the ability to hear what's happening on our bodies increases when we lie down - so I'm probably more aware of the chaos...

and I forget the other one!

Does anyone else have this?
Hypo/Hyper intracranial pressure is likely & links now to Brain/Spinal fluid leaks??? Stanford Research Dr. Ian Carroll MD
 

Aidan Walsh

Well-Known Member
Ew....I'm so interested in this topic...Do you have any links?
I can send to your Facebook Cort Johnson message link it is a Major Major breakthrough from Stanford Dr. Ian Carroll he first got involved his daughter started getting very Sick they realized the LP from earlier testing was leaking they

corrected it also some get epidural injections then get same symptoms he is finding these with Spontaneous leaks in us & he is also finding in some Bone spurs or calcium leaks at Brain or Spine...He started looking at other illnesses as

well from CFS Fibro even Parkinson's one Patient had Spontaneous leaks I will now send you those links look at your Facebook message box let me know you got them ok you should interview him & other Doctors involved

Duke University is also involved it is treatable blood patches, glue & or Surgeries at Spine and/or Brain through Nose ENT or Neuro Surgeons likely most have spine issues
 

Not dead yet!

Well-Known Member
I can send to your Facebook Cort Johnson message link it is a Major Major breakthrough from Stanford Dr. Ian Carroll he first got involved his daughter started getting very Sick they realized the LP from earlier testing was leaking they

corrected it also some get epidural injections then get same symptoms he is finding these with Spontaneous leaks in us & he is also finding in some Bone spurs or calcium leaks at Brain or Spine...He started looking at other illnesses as

well from CFS Fibro even Parkinson's one Patient had Spontaneous leaks I will now send you those links look at your Facebook message box let me know you got them ok you should interview him & other Doctors involved

Duke University is also involved it is treatable blood patches, glue & or Surgeries at Spine and/or Brain through Nose ENT or Neuro Surgeons likely most have spine issues

That's interesting. I had a very bad reaction to a spine injection for pain recently. Vitamin D in gigantic doses finally stopped it. I figured it was due to the cortisone they used, but if it was leaking also, then it would lend more credence to the theory. Is cortisone hygroscopic? That was my other theory for why, if a bunch of water was pulled in and increased the pressure.
 

Merida

Well-Known Member
I am late to this important discussion.
@Aidan Walsh
@Cort
Yes! Abnormal pressures in the CNS. I have the same issues with lying down as you have mentioned. I mentioned this whole problem of lying down to the neurosurgeon I consulted, who was one of the few experts in tethered cord syndrome. He told me that lying down ( especially on hard surfaces) flattens the curves of the spine and puts more tension on the spinal cord. It is now appreciated that the tethered spinal cord ( from a too tight connection in the sacrum due to various abnormalities in the filum terminale or adjacent structures) can transmit that tension all the way up to the neck and lower brain areas.

Having said that, my experience has been that the more my neck is 'out' the more difficulty I have lying down - especially on my back. But, again, the neck is influenced by what us happening in the pelvis.

I have helped this problem of lying down by folding a queen size comforter in thirds, covering it with a sheet, and putting it on top of the bottom sheet. This makes the bed very soft and more comfortable. Also, a feather pillow helps.

Anyone else try this?
 

Issie

Well-Known Member
I am late to this important discussion.
@Aidan Walsh
@Cort
Yes! Abnormal pressures in the CNS. I have the same issues with lying down as you have mentioned. I mentioned this whole problem of lying down to the neurosurgeon I consulted, who was one of the few experts in tethered cord syndrome. He told me that lying down ( especially on hard surfaces) flattens the curves of the spine and puts more tension on the spinal cord. It is now appreciated that the tethered spinal cord ( from a too tight connection in the sacrum due to various abnormalities in the filum terminale or adjacent structures) can transmit that tension all the way up to the neck and lower brain areas.

Having said that, my experience has been that the more my neck is 'out' the more difficulty I have lying down - especially on my back. But, again, the neck is influenced by what us happening in the pelvis.

I have helped this problem of lying down by folding a queen size comforter in thirds, covering it with a sheet, and putting it on top of the bottom sheet. This makes the bed very soft and more comfortable. Also, a feather pillow helps.

Anyone else try this?
I have found microbeaded pillows (Tony Little - King size) to be best for me. I put one under my back. Get a flatter pills above that one at head and put another microbead pillow on top to get my head up. When I lie down, I squish around on the pillows so they conform to every curve and it supports my back. I've also found wearing a collar on my neck at night keeps it from going out. Since I have EDS - it's very important for me to make sure my body isn't tweaked or twisted or I will wake up with something gone out. This has been my most comfortable fix, so far.
Issie
 

Aidan Walsh

Well-Known Member
Dr. Ian Carrol is now finding Spontaneous Multiple Spinal Fluid Leaks & Tears in EDS Fibro CFS even Marfan's & one Parkinson's he says we are constantly Leaking, I also know one Woman here in the UK they found something wrong with her Veins sticking together by ultrasound in her Neck she was diagnosed in the UK but had to go to

see a Vascular Neurosurgeon familiar with this Procedure she had microscopic Surgery & he said it will take up to a year for her to fully recover including absorbing her nutrition in the Gut he did say the word Cure she has EDS3 She posted her Story in a UK Paper & it is on EDS Support UK Timeline on Facebook she says she never felt

better wants to go back to work & get a Car Driving License :) Something is going on with our Spines is it Leaks, Tears or Veins stuck together in our Necks? Or all of the above or in some?
Veins stuck together in our Necks? Or all of the

above or in some? We need more CT Myelograms done & we need the best Ultrasounds at Neck areas & imaging forget about useless MRI a complete waste of time & effort. A Doctor years ago in California said we are crooked maybe he was 100% right we need also someone to seriously Start measuring us on both sides it could be

possible we are short on one side causing us stress when upright & I do not mean Tethered or Scoliosis. I am tired of hearing about every infection under the Sun lets look at physical body structures & also get tested for (HFI) hereditary fructose intolerance we could have all of the above combined
 

Merida

Well-Known Member
@Aidan Walsh
Yes, I have thought for 20 years ( since my 'chiropractic adjustment' for a sore hip - bed ridden one year- evolved into typical FM/ CFS - including immune abnormalities) that the basic, foundational problem is structural for many/most.

Yes, one side of my face is smaller - only picked up by a geneticist. Don't under estimate the scoliosis factor. A wonderful book by Professor Dr. Valentyn Serdyuk ( Odessa Univ.), Scoliosis and Spinal Pain Syndrome, delves into the multiple, various structural differences associated with scoliosis. Yes, vascular differences are discussed and can be important. But he says that the most important and common problem is small foramina in the upper cervical vertebrae - where the vertebral artery passes through to the brain. I have hemangiomas at T8/T/9 and in the liver. So, this could be another issue.

But, it is also appreciated that there is a high rate of scoliosis in Chiari people.

Yes, it was thought by one neurologist that I had a possible CSF leak. Maybe a tear in the vertebral artery. And I totally agree that MRIs are a waste of time. Yes, we need studies done by vascular neurosurgeons. But good luck! I tried to get an appt. with one here in L.A., but when they hear CFS/ME/ FMS they run the other way. Could not get in!!!

Thanks for video reference! The craniosacral chiropractors discuss in detail the asymmetric body. Trying to post a photo.

@Issie
thanks!! Yes, someone needs to explain why EDS people have a higher incidence of CFS
 

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