pat57

you want an electro physiologist , EP Dr.

I found this guy through an on line search.

http://www.videomd.com/Pacemakers-fv-439.aspx

Norpace- rest-sugar- and compression stockings.

Although sometimes I overcome it though activity. It seems like I manually adjust my BP if I can get the BP up, I feel much better. There are days that I only get from the couch to the chair and I can't get going. At such times either a nap or a big sweet snack cures me. Sugar also cures headaches for me.

During an NCS event the BP rises supine. IE when they" tilt down" the event passes. I can abort a faint-every time- if I lay down. I am talking about during an event tho. Anyones BP would lower during rest. I'm pretty sure NCS is defined as lowered heart rate and BP. Which you did show. However depending on how high your HR and BP went you may have had an appropriate response.

My NCS would never allow BP like you posted on the topic starter. I would out cold before it got that high. What I'm trying to say is- If you were high during the TTT the same oversensitive response I have ,could have been a normal one in your case.

I am not an expert- just my opinion.

Must be difficult for you all, your family will be in my thoughts.

Splanchnic pooling is occurring after meals in some POTS patients. Excessive pooling of blood in the abdomen has been shown to occur while the patient is supine and at rest (Tani, Singer, McPhee, Opfer-Gehrking, Haruma, Kajiyama & Low, 2000). The splanchnic vascular bed contains up to 30% of blood volume. Limited autonomic neuropathy causing peripheral denervation may be the cause of increased resting flow and reduced mesenteric resistance in these patients.

that's from mechanisms of POTS www.potsplace.com

sorry, I don't relate to your issues, can't help. I have OH and NCS.

I am very cornfused about this BUT I will share my cornfusion with you and add this defination.

*

[edit] Mesentery (proper)

The mesentery proper (i.e. the original definition) refers to the peritoneum responsible for connecting the jejunum and ileum, parts of the small intestine, to the back wall of the abdomen. Between the two sheets of peritoneum are blood vessels, lymph vessels, and nerves. This allows these parts of the small intestine to move relatively freely within the abdominopelvic cavity. The brain, however, cannot map sensation accurately, so sensation is usually referred to the midline, an example of referred pain.

it would seem possible that your chest pain is referred pain

I think it can improve if muscle tone in the legs is poor, or relatively poor, and then improved.

Also there are a number of factors that can cause blood pooling. Liver disease is one ,and so if that condition were improved the pooling would improve also.

"The following are some abnormalities that can result in reduced venous return:

Abnormal veins that stretch excessively can result in pooling blood (Stewart, 2000).

Altered capillary permeability can affect capillary leakiness and cause excessive fluid collection in the lower body (Stewart, 2000). This may be contributing to orthostatic intolerance in a number of POTS patients.

Blood vessels that don't seem to constrict appropriately have been noted in POTS patients. Some physicians believe this subnormal orthostatic venous constriction, resulting from impaired sympathetic innervation, is the cause of blood pooling excessively in the legs of POTS patients (Streeten, 1999). This loss in the ability to vasoconstrict leads to excessive heart rate increases and contractions (Grubb, 2000).

Denervation occurs in some POTS patients. A number of patients do not sweat in various parts of their bodies. Some patients report losing their ability to sweat altogether. This lack of sweating shows that the nerve supply to the area is damaged (Low, 2000). As a result, the vessels that the nerve supplies lose their tone and become slack. Blood volume is normal but vessel capacity is excessive (Low, 2000). This causes decreased venous return of blood flow to the heart, decreased cardiac output and (probably) orthostatic reduction in cerebral blood flow (Streeten, 1999). Peripheral neuropathy may be present in these patients. This neuropathy seems to be selective, with slight responses in some regions being compensated for by overactivity in other regions (Bush, Wight, Brown & Hainsworth, 2000).

Hypovolemia (low blood volume) sometimes occurs in POTS patients. The patients may have a reduced blood volume throughout their body, or the hypovolemia may occur due to blood pooling in the abdomen and legs. Reduced plasma renin activity often accompanies the low blood volume. Reduced levels of renin release consequently result in reduced secretion of aldosterone. This would be expected to impair renal sodium conservation thereby contributing to hypovolemia (Streeten, 1999). Findings suggest that the impaired renin release may possibly result from sympathetic denervation (Jacob & Biaggioni, 1999). Abnormalities in the kidney are also suspected of causing the reduced renin and aldosterone levels (Raj, Biaggioni, Yamhure, Black, Paranjape, Byrne & Robertson, 2005). Physicians believe hypovolemia and inappropriately low levels of plasma renin activity may be important pathophysiological components of orthostatic intolerance (Jacob, Robertson, Mosqueda-Garcia, Ertl, Robertson & Biaggioni, 1997). Decreases in body temperature may result from hypovolemia (Heitz & Horne, 2005, 35).

The findings in hypovolemic POTS patients have been dubbed the "renin-aldosterone paradox" and are explained as follows:

Under normal circumstances, low plasma volume is sensed in the kidney (and in the heart and aorta) and stimulates an increase in plasma renin activity (renin), angiotensin II (A-II), and aldosterone (ALDO). The increase in plasma renin activity and aldosterone promotes salt and water retention, which leads to an increase in extracellular fluid volume and plasma volume. In POTS, there is a failure to sense and appropriately respond to low plasma volume. There is no appropriate increase in plasma renin activity, angiotensin II, and aldosterone given the hypovolemia. Because plasma renin activity and aldosterone are not increased, salt and water retention is not increased, and plasma volume is not increased (Raj, et. al., 2005).

Erythropoietin response impairment may be contributing to a patient's hypovolemia. Erythropoietin is a hormone made by the kidneys. It helps stimulate red blood cell production. Impairment of the normal erythropoietin response to low levels of red blood cell mass could contribute to hypovolemia. Physicians postulate that subnormal erythropoietin response may be resulting from a disorder in the normal sympathetic stimulation of erythropoietin release by the kidney (Streeten, 1999). Read more

Paradoxically, POTS can occur because of hypovolemia or hypovolemia can occur because of POTS. This can happen because hypovolemia may lead to a chronic state of adrenergic activation, which may produce POTS symptoms. Chronic adrenergic activation reduces intravascular volume, which may produce hypovolemia (Stewart & Erickson, 2002). Read more

Impaired venous emptying can cause excessive fluid collection in the lower body. This can lead to blood pooling in the lower limbs and consequently, orthostatic intolerance.

Splanchnic pooling is occurring after meals in some POTS patients. Excessive pooling of blood in the abdomen has been shown to occur while the patient is supine and at rest (Tani, Singer, McPhee, Opfer-Gehrking, Haruma, Kajiyama & Low, 2000). The splanchnic vascular bed contains up to 30% of blood volume. Limited autonomic neuropathy causing peripheral denervation may be the cause of increased resting flow and reduced mesenteric resistance in these patients.

Sympathetic Overactivity is observed in many POTS patients. The sympathetic overactivity can be secondary to a number of factors, some of which may be peripheral denervation, venous pooling, or end-organ dysfunction (Low et al, 1998). Hyperadrenergic states with elevated norepinephrine levels are often found in patients with sympathetic overactivity. One study found that 29% of POTS patients had elevated norepinephrine levels upon standing, and the mean level was 531 pg/mL (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007). Norepinephrine is similar to adrenaline and is a natural vasoconstrictor. Genetic or acquired deficits in norepinephrine activation may result in hyperadrenergic states that lead to orthostatic intolerance (Shannon, Flattem, Jordan, Jacob, Black, Biaggioni, Blakely & Robertson, 2000). These deficits can cause patients to experience symptoms suggestive of not enough norepinephrine simultaneously with high norepinephrine levels. Many of the mechanisms listed here can result in states of chronic adrenergic activation that lead to orthostatic intolerance.

Sympathetic underactivty can also occur in some forms of orthostatic intolerance (Robertson, 2000), such as pure autonomic failure. "

from mechanisims of POTS- www.potsplace.com

ajw,

A brief search tells me that the test you had identifies paraneoplastic autonomic neuropathy.

Yeah!

I am getting this test, soon

http://content.nejm.org/cgi/content/abstract/343/12/847

I have an undetermined auto immune disorder, none of the issues you mentioned. I have had all the usual tests and I test positive (3x normal) for rheumatoid arthritis. BUT I don't have water on the joints or swelling, thus I don't have RA. I have had hepatitis C for over 30 years, this is the cause. My symptoms are excruciating (brief) pain in the hands with vasospasms. (Raynaud's is ruled out) What we are trying to determine is if has caused autonomic auto immune as well.

I'm sorry to hear this. Frequently a lawyer will offer a free consultation, during which they will advise you whether you have a good case.

That would seem the place to start.

Good Luck

too cute!

I checked out those links. Do you know if a fountain would create negative ions?

I am one of the people (they mentioned) that feels much improved after a thunder storm. I am setting up the water fountain- I have stored.

I have had BP like yours and I was weak and lethargic. I think you need to water and salt load to get that BP up.

good luck

starry, the dose my EP ordered is 10 or 20mg when used as a vasoconstrictor.

Wishing you a full recovery and fond memories........

http://www.dizziness-and-balance.com/disor...l/cervical.html

bow hunters syndrome

as far as the shouting, I say yes, emotional responses effect either the sympathic or para sympathetic system. I can never remember which is which.

I was put on 10 or 20 mg of Zoloft then 10 or 20 mg of paxil, then I went to full dose of St. Johns wort.

I'm sorry, I don't remember the exact dose, but I do remember that the Dr. said it was below the minimum used for depression. I had intolerable

side effect from both , even at those levels. Hyper sexual. I am backwards apparently.

All three did/do help my NCS.

You've done your part,

good luck

OUI

I know I always feel much worse when there are bystanders. I wonder why that is?

I have to say tho since it was a pool. NEVERMIND that, you could have drowned!

I've been down this road too many times.

I too make uneducated conclusions about pretty much everything I see an hear. And so it is easy to forgive.

BUT, I do not have the time of day for anyone who- after being told that I am struggling and hurt when people think I'm lying about what limits I have.- still

think I'm lying. To clarify when I say I can't- it means I can't. I've been through this with my 3 siblings. One of which said I was selfish and causing trouble.

I told him don't write me, don't call me and don't come to my home. I did see him at a family thing. I have to say ,I feel I did the right thing, I do not want him in my life. He has no respect for me. At the same time I have no problem seeing him he doesn't bother me. And we did talk. But I sure as heck will not confide in or depend on him for anything, nor will I drain myself maintaining a relationship.

That's the worst thing about this condition I don't have the energy to maintain friendships with dear people and it makes me very sad. I HAVE to pick whom I will spend time with.

Thank you for letting us know- keep us posted. this is a fav of mine, maybe you will enjoy it too.

http://positivepause.com/

i USED TOO GET HOME AT 1AM, SLEEP 2-6 GET MY DAUGHTER TO SCHOOL THEN SLEEP 4 MORE HOURS. iT WAS HORRIBLE.

OOPS the capitals were a mistake! I worked nights because I had a young child so dad was home at night. I am SO SO much happier working days.

I feel SO SO much better. Sadly , sometimes finances push us into dilemmas like that. My Dr. thought the issue was failing to get 8 hours uninterrupted sleep.

Hope you find a good solution for yourself.

good luck.....

your nieces are coming tomorrow?

I think the knowledge of emotional issues,coping mechanisms, maladjustments, consequences of abuse ,stress , neglect and more -are

indispensable. Also having an objective listener makes them believable. What I mean is ,they have no agendas or needs of their own that

skew their observations.