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I just found this and think it may be of interest to some;

ORTHOSTATIC HYPERTENSION AND DYSAUTONOMIA

Orthostatic hypertension has also been associated with a number of conditions involving some form of autonomic dysfunction. In a recent study of patients with POTS in the context of disordered mast-cell activation, 38% (3/8) were shown to have orthostatic hypertension.19 Interestingly, in this group of patients, the orthostatic hypertension manifested as either a persistent hypertensive response to assumption of an upright posture or as a hypertensive crisis, with BP as high as 240/140, with upright posture. This has not been observed in patients who have POTS but do not have mast-cell activation disorder. Patients with baroreflex failure may also occasionally experience episodes of orthostatic hypertension.26, 27, 28, 29 These episodes are especially likely to occur in patients presenting with acute baroreflex failure. In the initial days and weeks after onset such patients have orthostatic hypertension immediately on standing, though it usually declines somewhat over the following few minutes. It is not a universal manifestation of baroreflex failure, which is more typically characterized by labile blood pressure and heart rate which track together. In a final phase of baroreflex failure, usually months to years after onset, orthostatic hypotension is more typically the dominant hemodynamic expression of the disorder. In the rare syndrome of norepinephrine transporter deficiency, an increase in blood pressure with upright posture can also be seen.30

http://www.nature.com/nrneph/journal/v2/n8/full/ncpneph0228.html

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anna,

This is so interesting. I have mostly high bp's and have problems with NE being high. But, at times my bp can be relatively normal. My swings are very wild. I have found that allergy meds do help things and there is a component connection with MCAD for me. So, possibly having more than one of these issues - can make it very complicated and hard to treat.

Thanks for the post.

Issie

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Interesting, Anna. I get the swings too- Issie- especially during a reaction. My BP tries to drop due to plasma leakage, then my HR kicks in and my BP rises- this goes on, back and forth pendulum style.

I'm DXed with MCAS/MCAD & I don't get super high readings from just standing BUT I also have NMH/NCS- so I wonder if that masks it for me.

We are not easy creatures to figure out :wacko: Thanks for sharing, Anna!

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David Robertson wrote a few things on this issue. However newer thought is that postural hypertension could occurs in:

Ang II

hypovolumia

NET deficiency

mast cell activation

Beta 2 receptor disfunction

Denervation supersensitivity

However, none of these etiologies are universally accepted. it seems odd that postural hypertension would occur in mast cell activiation disorders in response to circulationg vasodilators but not in other situations where there are circulating vasodilators.

I have postural hypertension and my postural responses are almost identical to the original twins found to have norepinephrine transporter deficiency. Which funnily enough I tested positive to many moons ago although this was not very concrete.

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Rama-

"it seems odd that postural hypertension would occur in mast cell activiation disorders in response to circulationg vasodilators but not in other situations where there are circulating vasodilators."

______________________________________________

If i am correctly understanding your comment, I think the postural hypertension occurs as a compensatory response to the plasma loss caused by the vasodilators. There appears to be a point at which this is unsustainable and BP will ultimately drop thus explaining the highs and lows in response to the same vasodilators.

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Yeah true, but it doesnt always appear to happen in other cases where vasodilators are present - excessive nitric oxide or hydrogen sulfide - both recently implicated. Capillory leakage is an interesting area particular for stomach poolers.

What I found interesting was that the proband in the NET deficiency paper had normal BP and her twin who felt quite well and had less symptoms had slighyl elevated orthostatic BP. When my POTS is bad I have normal BP but when its in remission my standing BP sits around 140/90 to 150/90. No idea what that means but an interesting observation.

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This may be a dense question- BUT how do you know MCA patients don't have a temporary hypertensive episode prior to hypotension in response to excessive nitric oxide or hydrogen sulfide. We have so many vasodialating mediators bouncing around at any given time- it's impossible to determine WHAT mediator is causing WHAT symptom... right?

BTW, I recently started turmeric again- AMAZING results. MY excessive nitric oxide is easing up and my little masties are happy-er :D

Yeah, your BP observation is interesting. I also feel good, more energized, with slightly higher BP. That's kind of how florinef therapy a la Dr. Rowe works too. He seems to get my son's sitting BP a smidge high & then he can tolerate being upright longer w/o lightheadedness and syncope.

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This may be a dense question- BUT how do you know MCA patients don't have a temporary hypertensive episode prior to hypotension in response to excessive nitric oxide or hydrogen sulfide. We have so many vasodialating mediators bouncing around at any given time- it's impossible to determine WHAT mediator is causing WHAT symptom... right?

BTW, I recently started turmeric again- AMAZING results. MY excessive nitric oxide is easing up and my little masties are happy-er :D

Yeah, your BP observation is interesting. I also feel good, more energized, with slightly higher BP. That's kind of how florinef therapy a la Dr. Rowe works too. He seems to get my son's sitting BP a smidge high & then he can tolerate being upright longer w/o lightheadedness and syncope.

So interesting! So, Dr. Rowe adjusted Florinef per the sitting BP.. did I understand that right?

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Rama-

You tested positive for norepinephrine transporter deficiency, my children's Dr. wants them tested for this, did it prove a useful diagnosis or does it just add to the confusion?

For the last 10 years I have been treated for elevated BP, but before I was put on CCB's I had Rynards (SP?) tried Nitro felt like my head would explode, so stopped that. Anyway up until I was in my early 30's my BP was low and I had all the stuff that goes with a low BP, then my BP started going up and up, when my legs were down, still low when supine! even now on 2 BP med's I have very low supine BP going normal to high on standing if I add in any stress adrenaline my BP is in the danger zone!

So still looking for answers!

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anna,
You sound like me. I'm low bp lying. But, upright and standing I'm considered hypertension 2 - the worst kind- at stroke level. But, at the same time my bp can swing within minutes down into the normal range - (I guess that's the orthostatic part of this) and then just as fast back up to high. I have daily flutuations and tacky going on all day. Since strokes are in my immediate family and it's thought that I've had 2 TIA's - that really scares me.

I do have high NE levels. The best med I've found for my POTS in symptoms and to lower bp is Tramadol with Bentyl. I also have EDS and MCAD. So, I know there is some sort of connection with us. I have autoimmune things going on too. So, me too, still looking for answers.

Issie

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Issie maybe with our two brains working on this we may get some where! My boys are due to see their Dr. in a few weeks I have made up a long family medical history for him maybe this might help him get his head around all this. I will keep posting ideas ok.

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Issie maybe with our two brains working on this we may get some where! My boys are due to see their Dr. in a few weeks I have made up a long family medical history for him maybe this might help him get his head around all this. I will keep posting ideas ok.

I know anna, I think of all the people on the forum, that I've talked to - you and I are the most similiar. I think, we both fall into that hardest type to treat catagory. At least that's what my doctor told me. He doesn't know what to try next - because, I've basically - tried EVERYTHING. I don't think there is another medicine other than ocetotide that I haven't tried. I've been the gamet on herbs too and found them to be mostly too stimulating and unpredictable. One minute they work great and then next either I'm in over drive and hyped or shaking all over and crying with the worst of the worst lows. I'm the type that likes to feel somewhat in control of myself and my brain and emotions and these drastic swings all over the place are totally un-acceptable to me.

I told my husband this morning that I've decided to come off of everything - and start over. So, there will probably be a period of time that no one will hear from me - because, I know this is going to sink me into the pit. But, I've got to do it and then figure out what is working and what isn't. I woke up this morning in so much pain that I can barely move. I have severe osteo-arthritis in my back with lots of spurs (spine kind-a looks like a dragons ridge - with the spurs). I have it really bad in my hands and fingers too - so coming off of all the things I use for pain - is going to be especially hard. But, I need to see what my body is doing without masking it. With the EDS and that constant trying to hold ourselves together the muscle spasms are going to be horrible - but, I will see what happens.

I'll set my notification, so I can respond to my threads and post. But, probably won't be on very much for at least the next week.

Please keep me posted on what you figure out. As, I think there is allot to this with the NET stuff our EDS, MCAD and HyperPOTS.

Hugs,

Issie

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Issie I hope your detox goes well, I was on the verge of stopping my BP meds to see what happens, but will wait and see if my son's Dr. has any input first, take care I will keep you posted.

All the best,

Anna

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Thanks Anna...this explains me, too, and my grandfather died at 46 without meds and my father died of a stroke at 71 on meds!! So Issie, be careful...I wouldn't get off all meds, if I were you... maybe some of the herbs. I'm concerned for you... :) I would have a stroke, if I did that...I've already had stroke like symptoms in my early 40's, and I'm doing everything I can to stay alive a bit longer to see some grandkids!!

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  • 3 weeks later...

Rama-

You tested positive for norepinephrine transporter deficiency, my children's Dr. wants them tested for this, did it prove a useful diagnosis or does it just add to the confusion?

For the last 10 years I have been treated for elevated BP, but before I was put on CCB's I had Rynards (SP?) tried Nitro felt like my head would explode, so stopped that. Anyway up until I was in my early 30's my BP was low and I had all the stuff that goes with a low BP, then my BP started going up and up, when my legs were down, still low when supine! even now on 2 BP med's I have very low supine BP going normal to high on standing if I add in any stress adrenaline my BP is in the danger zone!

So still looking for answers!

Anna,

What happened with the testing? Did you figure out any more in regards to NE dysfunction?

Issie

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