RichGotsPots

http://www.neuropathy.org/site/PageServer?pagename=Resources_PNCenters

Katybug- I've been pushing that theory for some time now, there is nothing in the medical books about only for infants. It's also a possibility there is a postural pulmonary hypotension going on as well. I know of just such a pulmonologist from Harvard, who has actually seen this and is doing studies on this, but not for pots purposes.. Only problem is, yeah he sees this hyperprofusion but he doesn't have great ways to treat just increasing blood volume and vasoconstrictors like midodrine . If you want PM me and I'll give you his info...

Adrenomedullin is a peptide associated with pheochromocytoma,- interesting how NET and now this are found in both illnesses..

We need a much larger amount of poll takers who say yes, but so far I see a small correlation..

Surprising how I had this but the docs don't really say anything about...

Sounds just like me. The only time mine is narrow is if both are low.. But can be wide regardless..

I haven't monitored my BP enoug, just started since taking this new BB but also it was wide on my last TTT. I've had close to narrow once or twice but not more than 15 mm Hg/

Alex- http://misc.medscape.com/pi/android/medscapeapp/html/A150490-business.html

Anyway that's the claim, not my words, if only it were true ;-) http://www.firheals.com/catalog/faq.php I was lookig for a good thigh sleeve and SLS3 sells one withthis FIR stuff in it so I googled it and found this below: How can FIR heal human body? One of the reasons that FIR has beneficial results in a variety of illnesses is because FIR can deeply penetrate skin and underlying tissues. When FIR penetrates the skin, they come into contact with protein, collagen and fats. By stimulating micro-vibrations, FIR can elevate tissue temperatures. The human body then can be revitalized because of the improved micro circulation. Another reason is that FIR has the ability to remove toxins in the body, which are often at the core of many health problems. The build up of toxins in a health body could block the normal blood circulation and impair the cellular energy. When FIR waves are applied, the water molecules that encapsulate the toxins get heat up, and start to vibrate. This vibration reduces the ion bonds of the atoms that are holding together the molecules of water. As the breakdown of the water molecules occurs, encapsulated gases and other toxic materials are released and the body gets rejuvenated. In addition, FIR also improves human health through following functions: Rejuvenates the skin and muscle tone. Increases oxygen in the blood cell Promotes regeneration and fast healing Improves the autonomic functions of the nervous system Reduces fatty acids in the tissues Increase metabolism between blood and tissue.

You might find this interesting BB for asthma: http://ajrcmb.atsjournals.org/content/38/3/249.full

so far 2 wide, 3 narrow, 1 neither....

Jangle- Yes I've tried every asthma medicine, well all except one literally. Since you're breathing issues sound exactly like mine but with a different trigger, I don't think broncospasm per se is the problem so a broncodialator didn't help. In fact as others have mentioned they act as a stimulant and increase the HR and I feel increase NE or adrenaline. It's like pour gasoline on a fire. They exhaust me so much that they just prolong my flare for days... I'm talking about Ventolin aka Albuterol and Xopanex (which is a little better but still the same deal). Atrovent, which is a anticholergic is used as a broncodialator, I didnt get the adrenaline rush from it, but it also didnt work that great and causes a dry cough... SO the key must not to to block acetylcholine.. I've tried inhaled steroid- 2 brands and at first in 2006 they felt like they helped (could have been a coincidence though), but in 2011 they didn't help at all.. But I had no bad side effect they stay in the lung for the most part.. They even use epi as a broncodialator btw- so you would think if we are having all this adrenaline it would open up the airways for us... i think my best bet is finding better ways to control the NE, HR and level the BP... And the only asthma med I didnt try is a long acting form of albuterol. I've heard of some ppl on here with pots related breathing issues benefitting from it, but to be honest I'm a little chicken to test it since I get the high adrenaline rushes from the short acting stuff. But some people say it doesn't hit you the same way as the short acting form. Also chicken because both short and long forms carry increased mortality warnings with prolonged use because they mask the breathing issues rather than heal them... Kind of like caffeine mask fatigue and then when you stop you crash..

I'm always intreged when i come across something like this where it can be caused by a bunch of illness that some of us have in common besides POTS, like EDS. Theses illness all can cause Aortic Regurgitation (AR) AR can cause: Widened Pulse Pressure Palpitations, often described as the sensation of having forceful heart beats, due to widened pulse pressure with hyperdynamic circulation Shortness of breath, which may not worsen with exertion in the early stages due to compensatory tachycardia with shortened diastole Chest pain, if LV end-diastolic pressure compromises coronary perfusion pressure gradients

Trying to see how many have taken it and how it affected you and if there is a correlation with hyperadrenic POTS..

i know many of us use BP monitors and I just thought it would be interesting to take a poll on this. I know many of us have Hyper or Hypo BP issues and some of us have both but I've just realized today that my Pulse Pressure is really wide. During my last TTT is was as wide as 144/62 a difference of 82 mm Hg and tonight when I was having breathing issues it was 108/32 a difference of 77 mm Hg So I looked up info about Wide pulse pressure and the causes i found were varied depending on if the widening was due to: Systolic increase Wide pressure indicated: -hypertension · increased heart rate · hardening of the arteries · atherosclerosis · plaque in arteries Dystolic decrease Wide pressure indicated: -shunting from arteries to veins · shock · loss of arterial tone · regurgitation of the aortic valve I have heard people on here mention regurgitation come up on echo's and doctors just blow it off as not... Also I looked up shunting from arteries to veins and that is hard to research but ultimately lead me to realize that shunting can happen from trauma and viruses. A light bulb totally went off... Could it be we have some kind of are to trace fistula (shunting) causing our POTS.. There are 4 ways to find out according to Mayo Clinic. #1 the doctor hears a clicking where the fistula is #2 duplex ultrasound (of arms and legs) #3 MRA angiogram #4 CT angiogram. The problem with #1, and #3 is the doctor has to already have an idea of the area it's in to hear it or see it. the problem with #2 is it's only images of the arms or legs and not the brain, chest or stomach area. MRA seems like the best test but it's also like finding a needle in a hay stack...

Jangle- What you are describing is exactly 110% what happens to me, only mine has progressed since I first got in 2006. I used to get these breathing issues when I would be very hot and sweat or exercise.. Now it I have so many more triggers; heat, sweat, exercise, walking to far, walking without compressions socks, standing too long, when standing too long that my heels hurt (5 min usually), standing in a warm shower, cold air, eating carbs, and a few more... I'v run the gamut of tests for asthma, lung scarring, COPD, large cell lung cancer, blood clots, blood clots in the lungs, tried all different asthma and copd meds.. Finally I started getting some answers. The 2nd time I was in the hospital on Nov 2011 my BP was a little high around 165/115. But my pulm doc did a pulmonary exercise walking test. This was the 1st time I found out that my BP drops lower when I walk... Then on my recent TTT (2nd one) my BP went up on tilt to 144/105 then after 5 minutes it dropped to 95/65.. In other word my BP is all over the place, not just high like you might suspect yours is Jangles. I read that most of the pots people have the crash in BP only after 10-20 minutes of the tilt. So you may think yours is High like I did when I was in the hospital but it's also crashing, upright. My NE levels were 634 upright which wasn't that bad, but Jangle I get the same panic that you do when I can't breath and I can feel the surge and I get all warm for a minute then all my limbs go called and breathing gets even harder like I could pass out from not breathing. It's a cascade... Tonight I had a bad episode thought I would have to go to the ER. I think it was from eating a piza bagel then driving at night which gets me fatigued and opens up the door... It's the worst feeling in the world! When I got home I checked my BP and it was 108/35 (never had such a low dystolic before) then 5 minutes later it was 144/65 and after 30 minutes laying and drinking water it normalized... I think water helps clear the adrenaline..

Jangle, if i had those issues and took Albuterol it would not help me with the anxiety aspect. But it does seem to hit the body differently if you use the canister vs. the nebulizer. The nebulizer from my experience helps better with the SOB while, but it has the side effect of major adrenal surges and tremors, which I doubt would be for speaking.. There are some meds for anxiety breathing issues...

If you have tried it or are on it, what has been your experiences?

Pickled food are high in salt, but it looks like its not the intake that is the problem it not sticking for you, don't know how to fix that. Maybe ask a doc about mal-absorption of sodium?

cinnamon is very healthy for the brain so what do you have to lose?

Issie is right about zinc, good call!

Anna- the RECOMMENDED DAILY INTAKE of sodium is 2.3g or 2,300 mg for adults and is much lower for children definitely look into it and talk it over with docs.. Salt has a great disinfectant type of property but if you think about it, too much of it in the stomach can dry the stomach out possibly...

Just thought I'd pass this along, I read about it in a spa magazine, only problem is its permanent so in the future if you have the opposite issue and your body cant sweat in some places dont know if it will be good... http://www.miradry.com/

Had this for over one year due to enlarged polyps but doesnt sound like your case. Just make sure you dont eat old food...

Heard of a SPECT?