RichGotsPots

Amazing insight into hypovolemia but indicates no real treatment available..

I've heard about the Kidney issues before in POTS studies, they say it may attribute to our hypovolemia...

Which one have you brewed and what were the good effects?

Did you see a PH specialist or just a cardiologist? I'm hopefully going to get a RHC by convincing them of our thoracic hypovolemia or hypoperfusion and how this could cause PH in the upright position..

Hi Julie, did you mean to say "cerebral hypoperfusion?" I believe that is augmentation of blood away from vital organs may be causing pressures to rise especially in orthostatic positions. I'm going to see a heart and pulmonary hypertension specialist and have her test me in the orthostatic position with a catheter which is the only 100% way to test pressure levels especially in the orthostatic position. I spoke to a Harvard doc who said he saw this in a few patients...

I have PIDD/CVID, my IgG total is ok but the subclasses are low IgG 2, IgG3, IgA, T cell count is a little low, T helper cell count is low, and I do not respond by making antibodies to pnuemonia vaccine challenge (and I'd had 2 pneumonia vaccines within 2 1/2 years). These results have been consistent over the course of at least 3 studies in the Ig's and subsets and compliments and challenge tests. I have an Infectious Disease doctor who treats me for osteomyelitis (one organism is usually only seen in severly immunocompromised people--i.e. HIV, TB, chemo patients, cancers) which led him to explore deeper into my immune system. He told me I needed Ig but since I had been referred by a hemeoncologist I had to see to his collegue (immunologist/allergist/pulmon), she reviewed tests, said same thing, clearly I needed this (ran more tests with more of same results). And she set things in motion. My ID doc had got it set up after I'd seen this immunologist but I didn't want to use him even tho he's an hour's drive as opposed to 2 hours to university's infusion center, because he doesn't switch patients over to home sub q (maybe he thinks it's too risky, I don't know). But my immunologist plans to switch after 3 mos of IV Ig. I at least want to try it at home as I could do it the time of day/evening that worked best for me and work around appointments I may have. I do produce antibodies, but just not enough to protect me from infection. Unfortunately, they do not have anything they can administer to give me IgA. Insurance carriers use different criteria for eligibility. In my case, my immunologist talked to my insurance while I was there (I also had called and documented--and had the representative document our conversation). My plan did not require pre-cert for the IV Ig at the infusion center (in-network) and was covered under my major medical. I still have to pay deductibles and co-pays up to my max out of pocket. I am not sure how the home sub-q is considered, but I have it documented that the insurance told me only the Home Health needed pre-certed. I think I have the same thing. I had staph last week and low IgG now they are testing me for the vaccines..

which ones did you try?

Seems that traditional chinese medicine refers to blood issues as Blood Stasis. Blood volume deficiency falls under that term. I found this interesting note about Blood Volume Deficiencies and wonder how valid it is: http://www.acupuncture.com/herbs/bloodstagn.htm "Note for students: "The Liver stores Blood ... when a person moves, Blood goes to the channels, when at rest it goes to the Liver." (Maciocia, Foundations, p. 78) When you're asleep or resting, the Blood collects and is stored in the Liver. When you're active, the Blood is sent out to nourish and moisten the muscles. The Liver has a lot of control over the volume of Blood in the body. There are people who have blood volume problems. Lab technicians have problems finding veins and getting blood samples from these people. The people themselves tend to suffer from feeling weak, fainting, etc. "When the Blood flows to the appropriate places in the body at the appropriate times, it will nourish the necessary tissues, and therefore give us energy." (Maciocia, p. 78) When someone has Blood volume problems, suspect and rule in or out Liver Blood Deficiency. Keep in mind that Liver Blood Deficiency can trigger Blood Stasis which can manifest as headaches, some cases of fainting, etc. Liver imbalance isn't the only thing that can cause or contribute to Blood volume problems, but it's the most common underlying Root. Also, Blood volume problems "indirectly influences our resistance to external pathogenic factors. If this Liver function is normal, the skin and muscles will be well nourished by Blood and be able to resist attacks of exterior pathogenic factors." (Maciocia, p. 78) Remember the question why some people are so much more susceptible to Exterior Pernicious Evils than others are? The number one cause is weak Protective Qi. Yang Deficiency and generalized debility also can be a cause. Add to this a consideration that Liver Blood may be Deficient, and indirectly causing the increased susceptibility."

before pots flare 185lbs BMI 24 after flare 150lbs around 21 BMI, will be worried if bellow 140lbs but still look too skinny right now..

I know nothing about chinese medicine and herbs but was looking over a supplement by looking up each herb and came across this on wikipedia http://en.wikipedia.org/wiki/Panax_pseudoginseng , Panax pseudoginseng is not an adaptogen like the better known Panax species, but it is famous as a hemostatic herb that both invigorates and builds blood. anyone ever try this herb for hypovelemia, I think I might

He is very hush hush, when 1st diagnosed I reached out to him on facebook, no response. Not much of help. When celebs get ill they usually talk about the treatments that help so they can help others..

I don't think it is the stress, but my girlfriend also got sick at that apartment and she moved in much later after me. She got asthma she hadn't had for 10 years...

Buteyko breathing exercises is supposed to help hyperventilation. Buteyko believes hyperventilating cause asthma and other breathing problems like sleep apnea. More likely, is that hyperventilation is a symptom rather than a cause. And maybe some people have positive results from trying not to hyperventilate because it helps heal the root cause some how. Very surprising that more volume makes your breathing worse Rama. I have to drink tons of water to get mine better. But if I'm high salt mine gets worse.. That's why I suspected Pulmonary Hypertension for me... I wish there was a Pulmonary POTS doctor!

I wish my specialist appointment was sooner, my parents are looking for a local specialist in the meantime. But again I always have the worry that these things are at their worst when I'm in the upright/orthostatic position and all these tests are in the laying falt/supine position ughhh..

My POTS came back about a month after I moved to a new apartment. I think it was the triggers for my 2nd major flare. I read one story on Dinet.org where a girl was triggered by a new move as well. Has anyone else had this? If so have you been helped by a moved from the trigger apartment? At the very least it's on the 1st floor and I'm no longer trapped on the third floor, yay!

I finally looked up the Pericardial Effusion symptoms (see below) and it can cause bad breathing issues. I know I have a Pericardial Effusion (from my last echo with my POTS dr.) but can it be causing my breathing issues? I wonder.. I wonder if my POTS is causing it some how or the other way around. Has anyone else been told they have this? I also had a staph infection when they took the echo, I don't know if that affected the results. (probably from being in the hospital). I'm going to see one of the best heart and Pulmonary Hypertension specialist in the country in a bout a month, I'll see what she says... Symptoms By Mayo Clinic staff Pericardial effusion symptoms may include: Shortness of breath or difficulty breathing (dyspnea) Shortness of breath when lying down (orthopnea) Chest pain, usually behind the breastbone or on the left side of the chest that often feels worse when you breathe and feels better when you are sitting up, rather than lying down Cough Painful breathing, especially when inhaling or lying down Fainting or dizziness Low-grade fever Rapid heart rate A feeling of anxiety

Why did you need it? My IgG test was low. Did your insurance cover it? Hope it works!

Rama-must be that we aren't absorbing it orally as well, it's being flushed too quick by our overactive bladders... and I don't know if the saline is any better than a plain water IV for hypovolemia... happy you're feeling better finally! How did you get the IV?

i have exactly this, still investigating it. No meds help at all so far... My oxygen level is perfect.

I don't know about everyone else but since I've had POTS, I get super hot and sweaty really easily and so I think it dehydrates me. I wear a ton of deodorant to help, but I lose the heat everywhere. I never got sweat tested at a center but It's probably really wacky. The first time I noticed my POTS I had been biking fast and long distance for 6 months with problem, then It got cold so I started running on the treadmill. Got super hot and couldn't breath, ran outside in the cold and when I cooled off I could breath. Now I can't even walk a block...

@Kayjay When and how were you dx with asthma and then how did you find out you dont have it? did you ever take asthma meds? How long did it take for the beta-blocker to work for the breathing and which one did you use? Thanks,

I'm just very afraid to gamble with mt breathing. One wrong med and my breathing could go from really bad to really really bad. So far 3 pulmonary function test say I have mild asthma, getting a 4th in 2 weeks. Did my mild asthma go to severe asthma out of nowhere and if so beta blockers have a contradiction with asthma. On the other hand if I have mild asthma still and just the POTS is making my breathing worse it could help. Meanwhile I have my Mom putting me down every second telling me POTS and breathing is all in my head because of anxiety. I've read that even some anxiety meds are not good for breathing like Ativan it says, "Severe respiratory failure – Benzodiazepines, including lorazepam, may depress central nervous system respiratory drive and are contraindicated in severe respiratory failure. An example would be the inappropriate use to relieve anxiety associated with acute severe asthma. The anxiolytic effects may also be detrimental to a patient's willingness and ability to fight for breath. However, if mechanical ventilation becomes necessary, lorazepam may be used to facilitate deep sedation." that doesn't sound good for my breathing

this is according to Dr. Grubb: Prognosis and Impact of POTS "At present, only limited data are available on the prognosis of patients with POTS. Investigations are presently underway analyzing the outcomes of patients (overall, as well as within different subgroups); however, some basic trends have been observed. Over one half of the patients with postviral onset POTS appear to make a reasonable recovery over a 2- to 5-year period, with recovery defined as the relative absence of orthostatic symptoms alone with the ability to perform the activities of daily living with minimal restriction. However, some patients do not recover, and a small subset will worsen over time. For the most part, the younger the patient, the better the prognosis. In general, close to 90% of patients will respond to a combination of physical therapy and pharmacotherapy. Patients with the hyperadrenergic form of POTS usually require therapy indefinitely. The prognosis of those patients with secondary POTS is usually determined by the prognosis of the underlying disorder."

I think the doctors over emphasize complete recovery because there is no one really tracking recovery rates and so they are trying to use positive reinforcement. I think people have normal to almost normal period but relapses happen from time to time. I had 3.5 years of almost normal life..

awesome! I'm about to apply. Did it really take 2 years to get? I hope you get a lot more than $500, but still its better than $0 Any advice?