RichGotsPots

Had a cardio pulmonary exercise test this past Tuesday. I could only walk on the treadmill for 2.52 minutes. The pulmonary doctor said my blood pressure dropped from 124/80 to 100/70 during the test which he said the opposite should happen, when a person walks BP should go up. My heart rate was too bad around 165 bpm. But he said the other unusual thing was I reach a metabolic phase way too quickly. The report says Anaerobic threshold (VO2A normal is >40% and I am 23%. The report also says Heart rate reserve 1-(HRMa normal is <15% and I'm 22.6%, O2 pulse (rest to WRMax) normal is 15 and I am 2-4. The doc said all this is unusual and based on this alone I should get disability but I need to go to specialist because this type of breathing problem is out of his hands..

Who told you this?

I often say there are 5 elements of true love. The most important element is caring. Caring is often takes the longest one to find out about because a true caring relationship endure even when the chip are down. Will your partner be there so you threw thick and thin? The only way to really know is to have something bad happen. I was in a bad marriage for awhile and when I got sick from POTS I saw that my ex was not only not there for me but belittling me because of my illness. The forced me to take a harder look. And now I'm even more sick then back then and my current GF, the girl I want to marry, is there with me every single step I take. It's such a relief and such a comfort. You need to find your soulmate and that soulmate will not let you down, will not get you down when life does...

not sure if it's the same thing I feel, mine can feel like I just drank something cold, but it also feels like very raw when I breath. Which part of your chest if it, mine is the very upper part but also in the middle under my sternum? Do you also have breathing issues?

Do you still think you have PAH?

What's strange to me is I wear 30-40 compression stocking that are pretty tight and the feet still ache. If it is pooling why are the feel still achy? Granted it's a little better when I wear them, but I expected it to get much much better if it was just pooling..

I wear knee high compression stocking all the time now. I have a dress sock one that is 18-25 compression and tighter one that is 30-40 compression. Does anyone wear the 40-50 compression? Also for those of you who wear the thigh high ones, how does it feel on your knees? It looks like I wouldn't be able to bend the knee too well with those...

I only theorize that I have pooling because of the aching I get under my heal. I wear compression stockings all the time now and it helps too. But I really have no idea if it's pooling or what. The legs don't seem warmer or colder that usual only when I get rushes my hands and feet are freezing. I also don't see any blushing or patchy skin when standing. What I do feel is that when I'm standing for awhile it helps to stand on the sides of my feet for a minute and I can feel the blood pool to the side and it takes some of the aching away. it's a strange feeling. Also tried the other day to put my hips and legs straight up on the air and I can feel all the blood pool out of my legs, didn't help me to feel any better though..

Hi Dani, How did you find a good CF specialist, I would like to try one?

I believe I heard somewhere that Florinef was originally developed to treat adrenal insufficiency, similarly to prednisone

Playing "negative side" PH has been theorize for hundreds of year as leading to many illnesses but mainstream docs don't buy into it because the PH levels are different in many areas of the body and in some areas of the body it is supposed to be slightly acidic, for example to help breakdown food and to kill of bacteria. I personally drink Icelandic bottled water because it has an 8.8 PH, which makes it taste better but also in hopes it's healthier More data needs to be clinically tested before I agree with either side I just found out yesterday my Blood Pressure drops when I walk..

My hospital charges $1/page but some don't charge anything. I also ask all my docs for records after each appointment because I tell them I have to bring them with me to many other specialist so it's easier, they usually agree..

Can you PM after a week to let me know how it works for you? TY, Rich

I literally just started my application. I'm almost betting I get denied the 1st time around. It's going to take a good lawyer to describe POTS to them and organize all of my medical docs. I have good records but I really only have one POTS doc that I saw 2-3x and his writing is like scratch.. I hope they deny me quick to I can appeal quickly with a good lawyer..

wish I could somehow link what doctors helped you the most with what are your worst symptoms poll and link those to what treatments helped the most :-)

I just bought some mag, what type do they recommend and how much?

Thanks Marti, so they get GABA levels through plasma and spinal fluid. I wonder if for POTS it matters what position we are in when they are taken. Was it taken by an autonomic lab?

Cool video! I wish it was 100 hours long lol I also wish there were interviews with some on the autonomic lab docs at Mayo, Vandy, cleveland or Grubb... Thanks! Rich

Albuterol (ventolin)/atrovent/spireva- acts on the beta2 receptors to dilate the smooth muscle of the lungs. B2 receptors for those mast cell people- Inhibit histamine-release from mast cells it also increase heart rate, which is the bad thing for us POTSies. I always wonder if I had asthma then took albuterol and it activates my POTS flares.. Not so sure the salt acts as a B2 agonist

Those are GABA supplements but has anyone had there GABA nerves tested?

All goes back to there being no data tracking patients with dysautonomia. How do we know what % gets heart attacks, would be interesting to know...

I haven't even attempted a warm bath because warm showers make my breathing worse. I literally have to take a shower laying down in the tub because standing with the heat is bad. On the opposite end - The cold weather seems to make me flare and my breathing worse while the warm 70-80 degree weather seems like the best for me. In the cold weather I have to bundle up and that makes me hot and sweaty and makes me flare...

My first reaction after watching the video, was, does this boy even have POTS. To be honest the mothers description didn't sound like POTS at all to me, it just sounded like chronic fatigue. I wish she could have been more specific about his symptoms. Last time I checked bone fracture weren't a major POTS symptom. Still bothers me we don't have studies on success rate, mortality and morbidity rates. But from what I read in bits and pieces it seems like the pediatric POTS community has high success rates in overcoming POTS when they reach adulthood. According to Rama's poll many people here clicked that they had success with exercise. I'm wondering what type of success. Did it help with fatigue mainly? It's very strange how Rama, myself and every this boy all exercise at a high rate before the onset of our POTS flares. So it would seem I got no protection from POTS by exercising more, so how would it make it any better. Just odd to me. I hypothesize that after a flare someone could tend to get deconditioned and so later on exercise helps with the fatigue aspect by reconditioning. The other thing I've heard some specialist mention is that my exercising our legs that helps with the pooling. Only problem with me is POTS causes scary breathing issues for me and exercise I believe only makes it worse. I hypothesize again that my pooling causes my breathing issues maybe by dehydrating my lungs or making mucus dry or my stiffing my vesicles.. Exercise raises my heart rate and adds to sweating which further dehydrates me. I'm glad this boy was helped but doesn't sound like he was accurately diagnosed to me from what the mother has said. Sounds like he had chronic fatigue syndrome because the first thing I would have mentioned was heart rate, fainting, dizziness and not bone fractures..

I was going through my email box and cleaning it up and came across this email from an alternative doctor who wrote "The PH Micircle" itis from the JAMA -Journal of American Medicine http://jama.ama-assn.org/content/296/18/2217.abstract?lookupType=volpage&vol=296&fp=2217&view=short This is what the alternative Doctor says summarizing the JAMA finding in his own words: "Systolic blood pressure, the maximum arterial pressure during contraction of the left ventricle of the heart, is the most important factor in predicting mortality risk for heart failure patients. Systolic blood pressure is typically the first number in a blood pressure reading; for example, 120 when the blood pressure is reported as 120/80. Heart failure patients with high systolic blood pressures had lower death rates; those with low systolic pressures may have a more advanced disease and a poorer prognosis. Mortality rates were more than four times higher for those with systolic blood pressure of less than 120, in comparison to those who had systolic blood pressure over 161. When the heart is healthy it will work harder to push the same volumn of blood through the 66,000 miles of blood vessels when the blood is over-acidic and sticky - this causes the systolic rate to go up. To lower the blood pressure with acidic drugs can lead to the very thing you are trying to prevent - a heart attack. Blood pressure naturally lowers when you alkalize the blood with diet and especially exercise. This will break up the blood from hypercoagulation. Exercise and an alkaline diet are the two and only drugs one should be taking. In the words of Hippocrates, "let your food be your medicine and your medicine be your food." If your blood pressure is normal (120/80) or low and you are not eating an alkaline diet nor excercising your risk factor for heart failure significantly increases. The misconception that low blood pressure is healthy is a medical illusion and is now explained in this recent study published by JAMA. These conclusions were gleaned from research on more than 48,000 heart failure patients seen at 259 U.S. hospitals between March 2003 and December 2004.

I came across this in the role of Tremors and then alcohol withdraw syndrome. They have a big affect on the nervous system and result in many autonomic symptoms. I was wondering is anyone has had any testing on these neurotransmitters? Or is anyone tried Picamilon (also known as nicotinoyl-GABA, Pycamilon, Pikamilon, etc) is a dietary supplement formed by combining niacin with GABA, and what were the results?