When Lying Down Makes You Worse

[Merida]

 

[Issie]

@Aidan Walsh, I can't find that article would like to read about vein leaks and sticking together. I'm having a lot of issues with edema right now. Trying to figure out what's going on. If there is a leaking of water from veins into tissue is EDS the reason? And could this affect the thickness of the blood? Mine being too thick. (Positive Lupus Anticoagulant for APS.) Yet I feel dehydrated, like water isn't going into cells.

Would you link that article?

Issie

 

[Merida]

One more comment: The illustration of the asymmetry is overly exaggerated to better show aspects of this asymmetry. When I first saw this information I thought it was ridiculous. Then I began to look closely at my body. I got out an old MRI and saw noticeably smaller lower brain space on one side. Read as normal.

I actually gave a copy of the scholarly, detailed book, Chiropractic: The Anatomy and Physiology of SacroOccipital Technique ( the illustrations are from that) to the expert neurosurgeon ( then 80 years old) in tethered cord ( and other CNS anomalies) He read it. I asked what he thought. He was silent, walked the room, and said, " It will take 20 years."

 

[Issie]

One more comment: The illustration of the asymmetry is overly exaggerated to better show aspects of this asymmetry. When I first saw this information I thought it was ridiculous. Then I began to look closely at my body. I got out an old MRI and saw noticeably smaller lower brain space on one side. Read as normal.

I actually gave a copy of the scholarly, detailed book, Chiropractic: The Anatomy and Physiology of SacroOccipital Technique ( the illustrations are from that) to the expert neurosurgeon ( then 80 years old) in tethered cord ( and other CNS anomalies) He read it. I asked what he thought. He was silent, walked the room, and said, " It will take 20 years."

I don't know your guys ages but I hope I can survive another 20 years. This chronic stuff is exhausting!!!!!!!

Issie

 

[Merida]

@Issie
Big hugs. I am soon to be 69 and struggling. I really did the science, medical for 20 years - maybe more in depth than 99.9 per cent. But here I am still struggling. So, I have turned to " magical " thinking, which, in fact, may not be magical at all. With a Philippina healer from ancient tradition. Don't know.

The dehydration you talk about - have that too. Drink, drink, pee, pee. Have wrinkled, flaccid skin. What about that antidiuertic hormone that the pituitary secretes? also, thinking acid/ base balance and the kidney. Believe it or not regular Coca Cola helps me - not too much - maybe 4 ounces. Ridiculous.

Not giving up. May All that is Good and Strong and Beautiful be with us.

 

[Issie]

@Merida , you've got 12 years on me. Cort and I are same age. I've dealt with a good bit of this all my life. Didn't get reasons why until I went to Mayo AZ and got all sorts of answers in my 40s. Then had a trail to other great docs who discovered more.

We think we know why I have the dehydrated thing. I'm DXd with CIRS. Part of what goes along with that is low MSH and high osmolarity (salt). She said when we get the mold/biotoxins cleared and my Lyme better that should clear up. If not there is medicine for it. Usually they use Lorsartan to help with it. But I tried that years ago and it made my heart hurt. Some POTS people are getting good results with it. It helps up potassium and that is a good benefit to POTS people. So, I just got some potassium to take and also use black strap molasses when I'm having an extreme time with POTS or that dehydration thing.

Funny, docs keep trying to "make us" POTS people increase our salt. We are not all the same and some of us have too much salt - despite not using much on our food. I really disagree with a lot of the things suggested for POTS. They need to make sure they have your subset correct and understand it. We have to educate people - lest well meaning docs kill them. We are not all the same. My husband and I had to just fire a doctor for not listening or trying to learn. He was so sure he knew about POTS that he wanted me to revisit everything already tried. Been there, done that......and science doesn't even back his insistence.
Issie

 

[Issie]

There is also another medicine that helps you hold onto water, but you have to limit how much you drink when you use it. It's given for diabetes insipidus.

One of the medicines used for POTS is Florinef - helps kidneys retain salt and therefore water. But with me already having too high salt and having kidney dysfunction. .....that was a HORRIBLE experiment. I have low aldosterone and renin. Also was for a while CKD stage 3. Reversed and normal with diet. The kidney doc said with low renin and aldosterone they usually use high diuretics. But with me having POTS, he wouldn't even entertain that direction. With my edema I use B6 and parsley to pull the fluid down.

Issie

 

[Aidan Walsh]

@Aidan Walsh, I can't find that article would like to read about vein leaks and sticking together. I'm having a lot of issues with edema right now. Trying to figure out what's going on. If there is a leaking of water from veins into tissue is EDS the reason? And could this affect the thickness of the blood? Mine being too thick. (Positive Lupus Anticoagulant for APS.) Yet I feel dehydrated, like water isn't going into cells.

Would you link that article?

Issie

I went over the article today on the Woman in the UK it was actually not her Neck but Vascular abdominal Surgery the opened her up about a foot long to fix her Veins she is now back on foods & gaining strength The article was I think in June in UK Newspapers & online her Surgery was not done in the UK I heard before she had Ultrasounds done

 

[Aidan Walsh]

There is also another medicine that helps you hold onto water, but you have to limit how much you drink when you use it. It's given for diabetes insipidus.

One of the medicines used for POTS is Florinef - helps kidneys retain salt and therefore water. But with me already having too high salt and having kidney dysfunction. .....that was a HORRIBLE experiment. I have low aldosterone and renin. Also was for a while CKD stage 3. Reversed and normal with diet. The kidney doc said with low renin and aldosterone they usually use high diuretics. But with me having POTS, he wouldn't even entertain that direction. With my edema I use B6 and parsley to pull the fluid down.

Issie

Dr. Carroll says POTS is a misdiagnosis in Leaks/tears he does not like that diagnosis at all

 

[Issie]

Dr. Carroll says POTS is a misdiagnosis in Leaks/tears he does not like that diagnosis at all

With me, POTS, EDS and MCAS is in our family. Being thought to be an electrical system issue (basically) - with autonomic nervous system malfunction. Now whether or not this vascular issue is the cause ---- I don't know. Makes sense that it could play a part in that there is definitely issues with blood flow, oxygen and blood volume. I suppose leaky veins could cause these things. But I think it's more complex than that.
I had leg vein surgery when I was only 26. Had varicose veins so bad I couldn't sleep, it was so painful. They took out branches of the bad veins. Not a stripping like is usually done. It was one of the best things I've done for myself as to the pain in my legs. However, I still have vascular issues. My lower legs and feet turn purple and swell and I have neuropathy. I'm starting to have issues with my hands now. My dad had this same problem. But my EDS, POTS and MCAS comes from my mom's side of the family. Maybe I just got a double whammy. Cause my dad possibly had Marfan - he had the caved in chest wall. He was in constant pain and had really bad headaches. My whole family has a FMS DX. But I'm the first to have an EDS Dx in addition to FMS. I think it's in other family members - just undiagnosed.

Issie

 

[Merida]

Oh wow. Been wondering about the whole vascular issues. I have hemangiomas at T8 and T9, and in the liver. Could have them in the abdomen as well???? But also these long, redundant colons may have all kinds of odd circulatory issues.

There are so many structural issues that come up in me and my side of the family that I keep thinking there is some very basic metabolic process that is off that affects fetal development. And I wonder if it is a glycogen storage type disorder. I have odd fatty lumps all over the place.
So, maybe my connective tissue isn't structured correctly? But not diagnosed as EDS at this point.

@Issie
My Mom had terrible varicose veins too. And, yes, all through my maternal line - many health issues: heart problems, scoliosis, an unusual cousin with no speech, congenital heart issues, short neck and stature, asthma, so much more.

It seems as if researchers are looking at all the individual trees in the forest, but not the total picture? Hope they find something to help.

 

[Issie]

@Merida , I have those fatty lumps called lipomas. My endo doc wonders if I have one of the types of MEN genetic disorder. I have 5 thyroid tumors, tumor on liver, brain tumor. So I think what ever it is - there is a genetic component. I'm also a carrier for MPN - which is a type of cancer in the bone marrow, blood. So far, don't have it. Was in research with 23&me for that. Seems there is a connection with MCAS.

If you have visable round hard bumps/nodules on your heels and the heels tend to Crack easily - that's a sign of EDS. There is a lot of signs to look for to indicate EDS.

I have a short neck too. Also have both obstructive and central apenea. Finally got a CPAP and mask I'm tolerating. Hope it starts helping. My dad had apnea too and my physical features are more like my dad.

Funny the similarities. Nice to compare and we may can figure our subset type. I'm fortunate to have had lots of testing and have so much figured out.

Issie

 

[Cort]

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 know my pelvis is off and my neck is definitely off. I wish I had the money to get my pelvis rebalanced and my neck as well!

 

[Issie]

I know my pelvis is off and my neck is definitely off. I wish I had the money to get my pelvis rebalanced and my neck as well!

Years ago, I had cranial sacral work done. That helped a lot. But I go out so quick after a chiropractic adjustment (and I can't have a traditional pop and snap adjustment - it will cause tendons to stretch too much and then forever for it to get better - causing worse issues). I haven't had any sort of adjustments for a long time. I use an abdominal binder when I have to ride long distances and it keeps my ribs in and spine supported. (I got a neoprene sports brace from Ross.) Now I have the light weight neck brace (Rakula) to sleep in and it keeps my neck in and sometimes puts it back in. It on Amazon and sold as a antisnore collar - comes in 2 sizes. With my short neck - the small is best for me. My sis uses the larger one. We both find our necks have less issues with using this. It has been a great find. Also I use a Theracane to put other things in myself. Comes with instructions.

Issie

 

[Not dead yet!]

This is such a good thread! I'm the opposite with snap-crackle chiropractic care. I have to have it pop into place. The tension that is produced with "gentle" adjustment triggers a migraine every time. I always warn the chiro, if he is confident my neck will crack, then let's do it. If not, then don't even try. Some of the most blinding, ER visit producing headaches have been from failed neck adjustments.

I also sleep with at least 6 pillows strategically under parts of my torso and head and neck, so that my shoulder is naturally straight and not crushed when I'm on my side... it's quite an art to have me lie down comfortably. Every three days I have to take them all off the bed and start over. If my head isn't elevated (even though I'm on my side!), I practically suffocate, my breathing gets so bad.

And of course, no comfy arrangement of pillows is complete without the cat settling down on me... the keystone of the process Cats should really be therapy animals. No wonder they were worshiped in Egypt. Purr therapy.

I did find something that works for my neck and my back. But I'd warn you to go easy if you try it. I find that strengthening the muscles of the neck can help, and ditto for the little muscles that hold up my spine. (I too have scoliosis, mild they say, but they're not the ones feeling it.) So, good old fashioned weightlifting exercises called good mornings have lowered the pain in my back 75%, and the neck is harder to strengthen, but what I do is reverse of nodding, only I do it while lying on my back on a bed, with my head hanging over the edge, no support for the neck... nods band and forth. Sometimes I hang my head backward and then rotate my chin from side to side.

These two exercises have saved me from the ER visits where I am cramped up and can't move enough to do more than crawl from bed to bathroom.

I do a lot more shoulder/neck stretching because that area gets all bound up for no reason. And I love to hang by my arms from an overhead bar, the stretch is pure pleasure. There was a time when I could do pullups, but now I'm happy to just hang there and stretch.

I really really miss exercising. I truly enjoyed it. I'd do anything to be able to carry a 50 lb backpack again for a whole week. I have videos of wilderness walks and sometimes I cry about not being able to go and see those places, to smell the air, to feel the breeze. There can be no greater torture for me than being indoors and inactive.