RichGotsPots

I just found a study that is a big mito eye opener, I'm going to post it for everyone "Mitochondrial Dysfunction in the Hypertensive Rat Brain Respiratory Complexes Exhibit Assembly Defects in Hypertension"

One last question before I buy them. What material is the best. Cotton, microfiber, rayon? I dont want to get too hot in them, only my ankle to my toes is freezing, I get hot very easily, maybe Mito issues..

Hey Todd, I'm beginning to think we all have this. And it related to my breathing energy (ATP) but it doesnt seem like if I found out I had it, it would help to even know. How is it helping you to know that you have it? Looks like they have no real treatments... And I think personally especially in us adult onsets it's a secondary issue cause by POTS or our Autonomic and Vascular issues.... I don't know.. I've tried taking CoQ but didnt help. is there anythingthat helps you majorly that I can at least test out?

Thanks!

Thanks, I will post updates. I still think I should have been protected under FMLA. Does anyone know if there is a waiting period for FMLA? For example is a women is 8 months pregnant and the employer didn't realize and then she goes on FMLA, I bet she would be protected. FMLA also cover medical illness. The 90 day thing is just something they made up, they didnt tell me about it and it's only for company benefits, it's not a trial things.... I hope I can get Disability, but I know it takes long

Thanks, this forum has helped so much already!

I also think NO levels and what I call selective Vascular hypotension (i.e. pulmonary hypertension). In other word, everyone probably has heard of cabin pressure in a plane. Well that cabin pressure changes at different levels of the flight and this is just a theory on my part, but in turn that pressure change affect our blood pressure. It might not change our whole bodies blood pressure though. For example I read that people with Pulmonary Hypertension should not fly at all because of this. From what I've seen from reading a everyone's post is that we might not all have BP issues (I don't) and measured by our arms, but I believe that we all have certain BP issues that are selective to different areas of the body and are causing different symptoms. If someone has BP hypotension (there is no such thing by the way just neurally mediated hypotension, but it's my theory ) in their brain for example then they get more brain type of symptoms, like dizziness or fog. It's all just a theory I'm working on... And it relates to what Rama has been saying about NO, except I believe these issues to be very selective and not just systemically running through the whole body..

I think I have hypovelmia (but still need to be tested for it), but I have my own pulse ox and I love it, works perfect. So I guess it depends on the person. But there is a another non-invasive measurement Dr Stewart told me he uses which is FMD measurement. All I'm saying is ask a really good vascular specialist and I'm sure there is a way to test non-invasive...

I started a new job 6 weeks ago, but because my POTS was so awful I could only work for about 10 days. I had a doctor's note putting me out for the last two weeks. They just emailed me this: "You're in your 90 day intro period and unfortunately we don't don't think this is working out and are terminating your employment. If you have questions or want to discuss, let's plan a time to talk. Given this, as of today, your employment with the company is terminated." Do you think I should have at least been covered by FMLA and that I should of had protection for 12 weeks? Does anyone know a good lawyer in the NYC area? This is very depressing since I have no savings and no help whatsoever. Before this job i was fired from my last job for the same reason but was too stupid to fight it and I worked there 14 months. I've was on unemployement 6 months before I landed this job and so I don't have much unemployment left. Great so not only is my POTS making me disabled it might make me homeless...

What's LDN?

keep a look out for PH post I will make, it may clear this up

hey everyone, I'm doing a search for good PH info, if I don't find any look out for a research post. Do all have Shortness of breathe issues? Echo is not the only way to test for PH. try to look out for my post, sometime today or tomorrow..

I've been posting a lot about endothelium defficiencies and many people have posted about Nitric Oxide and other related issues, but how many of use have actually had their Vascular resistance tested? i got this info from WikiP http://en.wikipedia.org/wiki/Vascular_resistance- which is usually the place I start to research then from there I seek more research related studies: I'll post some of the interesting points from WikiP so you can get my point and don't have to read some the too technical info on WikiP: Vascular resistance is a term used to define the resistance to flow that must be overcome to push blood through the circulatory system. The resistance offered by the peripheral circulation is known as the systemic vascular resistance (SVR), while the resistance offered by the vasculature of the lungs is known as the pulmonary vascular resistance (PVR). The systemic vascular resistance may also be referred to as the total peripheral resistance. Vasoconstriction (i.e., decrease in blood vessel diameter) increases SVR, whereas vasodilation (increase in diameter) decreases SVR. Regulation of vascular resistance There are many factors that alter the vascular resistance. Many of the platelet-derived substances, including serotonin, are vasodilatory when the endothelium is intact and are vasoconstrictive when the endothelium is damaged. Cholinergic stimulation causes release of endothelium-derived relaxing factor (EDRF) (later it was discovered that EDRF was nitric oxide) from intact endothelium, causing vasodilation. If the endothelium is damaged, cholinergic stimulation causes vasoconstriction. To Summarize: There are two type of measurements SVR and PVR. A doctor measures these to check for many different Vascular problems. For example PVR measurements can help doctors find out if there if the patient has Pulmonary Hypertension (which I'll talk about in another post) and SVR helps doctors discover general casrdiovascular issues, in the heart or all over the body. The most precise method that doctors use is cauterization, but over the last 15 years there have been many non-invasive methods that help predict vascular issues. Of course there are a few different treatments I've read about but this post is simply to find out, how many of use have been tested for either SVR or PVR. Thank you

Great, sounds like they will help, so I'm going to try them. Does anyone know what is the correct compression for our pooling or is it just trial an error? They seem expensive for just trials.. Did you ever see the infomercial for one, I forget the name but it was only $10.. I did see the men's leggings post but only my feet and hands get cold the rest of me is boiling so I can never wear tight clothes...

I'll think of some ideas, but yeah it can be like one big family reunion type of deal over a weekend and then after that we can discuss it and make it more formal. I definitely understand about travel problems, in the last 6 weeks I've been out of my home maybe 7 days total.. but hopefully some of us will feel better knowing about the event and it will still have good turn out.. One idea for now is to make a virtual event. I work in the internet space and while I've never organized a virtual conference, they are becoming very popular because they are very in expensive compared to a real one. I'll look for some software options and post them here..

I don't get dizzy but I feel faint, mainly from shortness of breathe that I now think is related to pooling. But my BP is stable in all positions. I really think dizziness has to so with BP issues or like you said flow issues. I haven't had a TTT though, I don;t want to torture myself, especially with my scary SOB. I feel my legs pool but don't see any color changes or edema happening..

I started Zyrtec 5mg/day 5 days ago, so far so good, next week I'll try 10mg. Seems like they need to be moving on to new H3 and H4 histamine stuff. Anyone ever try Astelline for the nose?

If not I'd like like to set up a big convention. We need to all pool our knowledge and raise each others spirits in person!

This might be a silly question but does compression stocking help with leg blood pooling? Would it make stomach pooling worse? Does it affect BP because mine is pretty stable I think. Any opinions of which ones I should buy. My fisrt pair of stockings I feel so manly lol

A coronary disease specialist. It is involved in many aspects that I copied and listed below from WikiP. Most Docs look for precursors to heart disease or heart attacks. But I've even seen dentists and Urologist testing for this... Function Endothelial cells are involved in many aspects of vascular biology, including: Atherosclerosis Barrier function - the endothelium acts as a selective barrier between the vessel lumen and surrounding tissue, controlling the passage of materials and the transit of white blood cells into and out of the bloodstream. Excessive or prolonged increases in permeability of the endothelial monolayer, as in cases of chronic inflammation, may lead to tissue oedema/swelling. Blood clotting (thrombosis & fibrinolysis) Inflammation Formation of new blood vessels (angiogenesis) Vasoconstriction and vasodilation, and hence the control of blood pressure In some organs, there are highly differentiated endothelial cells to perform specialized 'filtering' functions. Examples of such unique endothelial structures include the renal glomerulus and the blood-brain barrier.

My 2 bits: High HR does not = Heart attack, but it is a form of heart disease just like BP. BP= heart pressure. The heart triggers the pressure that circulates the blood in our bodies. So HR is not a good thing. On the other hand we all have HR maxs that most of us with POTS have exceeded by just walking. Our maxs are (Males: 214-(0.8*age). Females: 209-(0.7*age). So I'm 33 and my max is 188 (214-(33x.8=26)=188 HR. Most of the time I don't go higher than 160. If we go above our HR maxs and very often then that could be trouble. High heart rate even above our maxs does not mean automatic heart attack, but its dangerous. Especially for 70+ age group who have tons of heart disease and erosion and are just weaker in general. Anyway I think this a good medicine because it is very selective to the sinus node that controls pulse and it doesnt affect BP. But you do need to be careful with some of the side-effect, start slow..

Also Nicotine might aid in dilation, vascular resistance, but I dont know if its proven good in long term use. For example caffeine is a vasodilator and so are beta antagonist but in the long term they both mask the underlying problem and actually make it worse. Smoking might be a short-term solution but overall wear down your health, you should be careful with it..

Yea I wouldn't put a lot of weight in the treatment, they are only tipping the iceberg with that. The thing with damage to the Endo is that they are only beginning to treat it. This is new science. But first you have to figure out if you have the damage, then you can better know how to treat your POTS. If you have damage then your vascular resistance will react a certain way, that's why some POTS people can have a positive result with a beta-blocker (vaso constrictor) and some people could not. So this is not a cure to POTS but I believe it will lead doctors into making better medicine choices for all of us.. http://www.itamar-me...._Near_You.html This test is non-invasive, otherwise the gold standard is to get catherized and have them look at it directly, but this test seems to be a good enough indication and only take 15-20 minutes.

http://www.itamar-medical.com/EndoPAT/Dr._Near_You.html

I posted a new post on it and I think it could be causing some of our SOB problems, pooling issues and a host of other things. It is related to NO and acetylcholine and affect all vasodilation and contration Endothelial dysfunction! This company gives the test for it: http://www.itamar-me...om/EndoPAT.html