Mast Cell Disorders Forum - Hypoperfusion / orthostatic intolerance ?

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Mast Cell Disorders Forum › Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. › Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. › Hypoperfusion / orthostatic intolerance ?

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Hypoperfusion / orthostatic intolerance ? (Read 5218 times)

MarciaB

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Hypoperfusion / orthostatic intolerance ?
10/31/12 at 02:12:13

Is anyone else dealing with this and have you found a solution or cause ?

In case you're not familiar with this, dr peckerman wrote an article saying that people with cfs who also have orthostatic intolerance
will have hypoperfusion, blood loss in our upper bodies, due to oi.
He postulated that this could cause our fatigue, brain fog and pem.

I'm using my tablet so I can't give you the link, but I think if you google peckerman cfs hypoperfusion, you'll see it.

Somedays I feel this dramatically, like today, but sometimes not so much. I hadn't been feeling this as much while on mc meds, kow, but I still get a flood of blood rushing back into my upper body when I lay down. My heart, brain, stomach, lungs, etc all respond. Eventually these organs get to a relaxed state and I feel better. Healthy even. Typically I need to lay down for about an hour to recover when this is bad.

Mc meds changed how much I felt this so I thought some of you might be able to relate. I'm going to salt load and see if that helps.

Thanks .. Marcia

Ps. I have to go run errands today, bad timing but I have to, so I won't be able to check this till later.

CFS,FM,Celiac,Ataxia,Dysautonomia,Paget's,Seizures,PelvicPain,Hyperinsulinemia ...Responding to Wahls diet, supps and MC meds.. kow ...

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MarciaB

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Re: Hypoperfusion / orthostatic intolerance ?
Reply #1 - 10/31/12 at 03:05:39

Ok, so salt loading seemed to help. I seem to need to let salt dissove on my tongue from time to time in oreder to get enough. I took a shower and got dressed and felt fine.

I'm back to laying down now and my upper organs are happy to get to relax but I'm not getting the overwhelming feeling I did earlier.

My digestive tract is gurgling like crazy. Maybe that's the connection.

I'm assuming since we have potsies here you'll know what I'm talking about. Right ?

CFS,FM,Celiac,Ataxia,Dysautonomia,Paget's,Seizures,PelvicPain,Hyperinsulinemia ...Responding to Wahls diet, supps and MC meds.. kow ...

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Doozlygirl

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Re: Hypoperfusion / orthostatic intolerance ?
Reply #2 - 11/01/12 at 18:11:56

Marcia,
I find that my orthostatic hypotension is related to degranulation that gets ahead of me and has progressed to anaphylaxis quickly. I grab my dye free benedryl liquid gels, drink 2 bottles of water with salt added, and lay down as standig during anaphylaxis can lead to funky rhythms and quick progression to later stage anaphylaxis.

In the mast cell world, it is known that degranulation sets off histamine (and other mediator) release, which makes vasculature permeable and the liquid portion of blood plasma escapes into the tissues and leading to hypovolemia. It may take several days for the swelling to go down, as the lymph system has to process the fluid before it is urinated out. I have swelled so much that my shoe size has increased 1 1/2 sizes.

I have found that I need to combine OI advice or mast cell advice at the same time, I find I recover quicker than when I followed one protocol or the other.

Best wishes,
Lyn

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MarciaB

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Re: Hypoperfusion / orthostatic intolerance ?
Reply #3 - 11/02/12 at 01:10:29

Thanks lyn. Sorry to hear you're going thru this too but your experience is priceless.

Does Benadryl make you sleepy when your body needs it like that ? So far, small amount of dye free liquid benadryl is making me feel better. Except when I had the tongue swelling. I needed appr 100 mg to stop that. I used about 6 - 8 of the chewable children's.

I think I see why hypovolemia and oi are caused by mast cells degranulating now. Important info for anyone with allergies or oi.

I didn't swell tho. I'm not sure where it goes but I'm always dehydrated despite drinking fluids.

I noticed that all my fingers were completely wrinkled about an hour after salt loading before and after my shower so I spent the rest of the day loading up on salt. Initially they looked almost normal after salt loading that morning but within an hour went to looking totally wrinkled.

Is there an allergy salt connection ? Oh, is this part of how it leaks ?
So maybe I needed more allergy meds too ? Is there one in particular that helps this ? Besides Benadryl.

I felt horrible all day but I was out of town buying meats, etc at Whole Foods. I couldn't think straight and it felt like my body weighed 3 as much. Resting helped but I could only sit while I ate.

I "think" it could be from some frozen whiting I ate. I didn't like the way it tasted but I didn't have a choice that day. I'll test it again someday.
I'm ok with most fish. I can't digest beef or pork and I get sleepy from poultry so I'm stuck with fish and lamb for now.

Tx .. Marcia

« Last Edit: 11/02/12 at 02:17:34 by MarciaB »

CFS,FM,Celiac,Ataxia,Dysautonomia,Paget's,Seizures,PelvicPain,Hyperinsulinemia ...Responding to Wahls diet, supps and MC meds.. kow ...

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MarciaB

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Re: Hypoperfusion / orthostatic intolerance ?
Reply #4 - 11/07/12 at 06:36:40

I can tell dealing with this symptom is going to be a work in progress.

I had my first neg pmttt the other day. No oh and no pots. Cool

I thought this was happening but the test verified it for me.

I started the resting / supine part of the test with a hr of 118 tho because I didn't take my Wal-zyr when I first woke up. It never got that high again all day tho.

So today I took it with some food right after waking up. That helped tremendously. So far my hr hasn't gone up over 108 and that's while doing laundry, etc. But I'm still needing to lay down every 30 minutes or so while I'm trying to do housework.

I reread this and will salt load in a minute to see if that helps. I've had 15 mg of Wal-zyr already today but I'll try more of that next.

I'm also taking Wal-zyr with food to see if it makes me less drowsy this way.

Tc .. Marcia

CFS,FM,Celiac,Ataxia,Dysautonomia,Paget's,Seizures,PelvicPain,Hyperinsulinemia ...Responding to Wahls diet, supps and MC meds.. kow ...

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DeborahW, Founder FOUNDER/ADMIN Offline Posts: 1224 USA	Re: Hypoperfusion / orthostatic intolerance ? Reply #5 - 12/30/12 at 07:13:37 *This Topic was moved here from Symptoms* by DeborahW, Founder.**
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