RichGotsPots

Dinet.org list around 67 possible symptoms for POTS http://dinet.org/symptoms.htm I don't know of anyone who has all 67 lol I personally have around 16. When you get put into a subclass like hyperPOTS, NeuroPOTS, etc.. the symptoms go down to maybe 50 different. Our autonomic nervous systems is involved in all of our organs and I think we all experience the dysfunction of our ANS differently, maybe because of way POTS was triggered in us. Irregular heart beats or arrhythmias are fairly common and list on the link as a symptom.

Hope you start feeling better soon, can you update us if any POTS meds are working for you?

Those nasty mast cells are driving me crazy ~ I've made a cream with my gastrocrom to try to calm down to itching all around my IV3000 that I'm allergic to that covers my port. I found a recipe online.

Rich, are you a mastie too?

I haven't been diagnosed with any mast cell disorder yet but I do think mast cells play role in some how...

Many people try to tell us it's just stress, but I don't even think stress is a trigger in anyway because I had a remission for over 3 years and had the most stress of my life and it wasn't triggered at all. In fact i can argue I flared 3 times when I was least stressed out. On the flip side after I've flared because this affects the system in my body that is in charge of panic, my ANS, I've been way more vulnerable to stress impacting my well being. Same as other people who are ill.

But I do feel that people who spend a lot time together can almost have the same biological aura of some kind. Also people caring for ill people can get stress and depression from it... I don't know how that triggers POTS though, it's odd...

Wow! So many people have this. And no I don't have any kind of sensor, I don't want a reminder of how high my heart rate is because it jist makes me more anxious. I can tell what my heart rate is all the time without checking for a pulse because of this pounding in my body. Mine is worse when I've been sitting for a while or if I've got a headache. I can also see my chest move my shirt up and down and can see my heart rate in my vision too. It's extremely annoying and keeps me up at night. I cant lay ib my left side because the soynd of my heart is too prominent when I'm trying to sleep.

i posted about a trick I can do because of my powerful heart rate, I have regular non-electric scale and it ticks from almost a pound, back and forth when i stand on it lol I'm just so used to it already after all this time I don't notice it as much. The pulseOX helps me lower my heart rate actually by concentrating on lowering it, if that makes sense..

http://drbradstreet.files.wordpress.com/2011/04/image.png

This graphic shows how Mast Cells can do a lot of damage if they are not functioning correctly. Maybe it's possible Mast Cells don't just trigger my flare but they do long term damage and thats why I can't recover so quickly. They damager Endothelium cells which are cell I've posted about before. They have affects on angiotension I & II, smooth muscle cells..

Terrible, headaches. (But, can't do anything soy. And I think that's the only available form.)

white beans are high in it and cabbage too. But animals are the best source but now they use soy because of contamination issues I believe

Interesting that he mentions Quercetin and Luteolin in mast cell control

these are the experts in the field of Mast Cell Disease

I've heard good things for cognitive things but also exercise and fatigue. Has anyone tried it in the Soy version?

there is a huge difference between mine with my left being lower, docs usually say nothing about it

Same here, they just blow it off for me

For those that have mast cell issues I found this Emergency protocol, where it also lists the meds to avoid http://www.tmsforacure.org/documents/ER_Protocol.pdf

Well i can tell you that my girlfriend who has been with me almost 100% everyday through my illness has gotten ill herself. When I went to my POTS specialist (he is also a vein specialist) she got checked out for have her varicose veins removed and she had very low BP around 80/60. She also start having really bad stomach problems which so far looks like reflux and gastritis. She doesn't have the tachy yet. But her asthma has comeback from 10 years ago. We thought it was from the apartment, since I got sick when I 1st moved there (had my 2nd POTS flare), but now we moved hoping both of us will recover soon in this new apartment..

oops here's a link to the study http://www.ejcancer.info/article/S0959-8049(08)00636-9/abstract

I'll analyze it a little if we get enough poll takers (at least 3x more)

those are called palpitations. They may be due to pulse pressure. Do you have a pulseOX, mine has a bar that does up and down with my pulse and then i get an idea of how hard my pulse is beating.

If you want to add it, which treatment helps you the most and has treating Mast Cell issues helped your Dysautonomia?

thanks I officially never want one of those even if it helps, ouch especially the PORT

Interesting study, wish I could see the full text. I wonder what other groups have Dysautonomia? I'm too lazy to poll for occupations lol

Doing my usual research I randomly happened upon this study that showed positive results for Tilt training:

http://eurheartj.oxfordjournals.org/content/29/12/1523.full.pdf

I strongly believe that Zodiac signs have a lot to do with personality and I just wanted to see if there were a lot of people on here with similar signs and thus similar personalities.

I'll go first: Aries

I'm going to do a new post on Zodiac signs lol

Since everyone has the pharma pretty much covered. There are two teas you may want to consider. Marshmellow plant and Slippery Elm. Just soak it in tea for 10-15 minutes. I coats everything.

Also I've heard that an apple diet for 24 hours relaxes things, then you can slowly introduce non acidic foods. Some people also use apple cider or baking powder mixed with water. You can google the proportions...

the article says:

"The next time you get your blood pressure checked, ask your health provider to take measurements on both arms. Having a difference in readings between arms could indicate a condition called peripheral artery disease, a narrowing of the blood vessels in the arms and legs that restricts blood flow to the heart and raises the risk of a heart attack and stroke."

http://bostonglobe.com/lifestyle/health-wellness/2012/01/30/weekly-challenge-check-your-blood-pressure-both-arms/k1dGVXlGgDjNe0qIlQocCK/story.html

Like some others mentioned, in sleep apnea O2 levels drop during sleep. I have noted this myself but I still want to get tested.

I also have a pulseOX and I know that I can not get an accurate reading unless I hold it steady on a flat surface for a few minutes. So perhaps it just took awhile to get an accurate reading. I can tell on my when I see the heart meter bounce to a steady rhythm.

Also depends on the position of your hand whether you are getting enough blood to your finger get an accurate reading.

thoratic hypovolumia makes chemoreceptors freak out = breathlessness. People ask this quite often.

I think thoratic hypovolumia is very true but I don't think it's the chemorectors. Where did you read that? I read the chemoreceptors handle respiratory rate, so if they were freaking out they would increase my respiration rate. When my breathing problem happens my chest just gets extremely tight and it seems like the air is not saturating when the saturation is in reality very good nearly 99%. Some how this thoratic hypovolemia is feels is dehydrating the lungs, not sure if that's true but it feels that way. Some people who also have this feel like its like the energy of our lungs (ATP) is just giving out, almost like an acute Mitochondrial issue in our lungs... How we will ever prove this I don't lol