RichGotsPots

Arizona, what do you treat the yeast with?

Yes it does. You need to find supplements that boost your immune system. I used olive leaf, vit c, vit d, astragulus, spirulina, certain mushrooms, oregeno oil, and my go to Zinc. But zinc needs to be taken a special way. The body can only take so much zinc at a time and in order for it to work it has to be in the system constantly. Its hard to find the right amount except in lozenges but they taste gross so I break a 22mg tablet into quarters and I take a half before bed. If you need to take more than 35mg a day i take some copper because it can get low..

I hope the surgery goes well! Why the surgery though?

I hope he does biopsies and not just bloodwork

I use black strap mo but didnt know it was for pots. I put it in my beans so far or when i make a stir fry

I have two huge polls on this issue. One for causes of pots breathing issues and things that help and then another for things that hurt. I seem to suffer the most out of the hundred people I spoke with who have different degrees of it. There are basically two types of pots breathing issues. One is a type of air hunger that is usually an acute onset brought on by an endless list. The second is the forgetful breathing you describe. I have both. Most my forgetful breathing comes on when I drive more than 5 minutes. This type of breathing issues may be due to vagus nerve neuropathy. There are ways to test for it but my specialist wont because he says there isnt a way to treat it. The 1st issue can be treated a few ways depending on the cause but so far no way has helped me. Not .2mg of florinef, not beta blockers, not mestinon, nothing so far. Im digging deeper into autoimmune issues and maybe getting ivig which is the ony thing ive heard of to repair nerve damage

I'm not sure if many of you knew Simon, He used to be an ice skater before Hyper Pots set in. He had EDS, Crohn's and some other issues. He traveled all the way from the UK for treatment at Mayo in Arizona. He got a lot of help there and when he came back he was very optimistic. But he got meningitis and passed away a few days ago. May he RIP! I hope that doctors will come to realize how Dysautonomia weaken the immune system and treat us all with that in mind. I caught a bad Pneumonia this time last year as many of you may remember and I fought very hard. It's imperative that doctors keep our weak immune systems in mind and treat use cautiously and swiftly.

1st off i agree 100% with Naomi's comments! But I do feel that if you don't have someone close you can talk over issues with who wont judge you then a psychologist is good just to get things off your chest and give you some positive reinforcement. Problem they sometimes think they are rocket scientist and want to give you labels like you are some broken tool.. Chronic illness causes depression and our good days and bad days are more pronounced then non ill people. So it may seem like bipolar to the untrained person but its not. Now i'm not a psychologist and I don't know your whole background, but if you only started seeing him after becoming ill, i would think its mighty hard to distinguish the two.. I'm already majorly depressed from this Illness and I can see that if it doesn't improve I could get even worse. My sleep is so messed up. Its 6:45 am and i'm still up. I get 1-2 hours day light max.. Its turned me into a bat..

I wonder how many of us have a type of central apnea

As usual because of breathing for me..

The 2nd half of the video explains how they thinkthe narrow veins are cause by a low level chronic infection..

My pots friend sent me this video about it last month http://m.youtube.com/#/watch?v=EpMvDe8-qsM&desktop_uri=%2Fwatch%3Fv%3DEpMvDe8-qsM

Very cool! Hope he finds a cause, looks like he is doing all the right diagnostic searching, keep us updated please!

On Friday night i went to sleep 6:30 woke up 11:30pm then went back to sleep 2am until 12am 16hours of sleep in 18.5 hours... But usually like tonight i cant get to sleep until real late like 4am and am lucky if i am able to sleep until 12am and get 8 hours. I think its a no brainer GABA disfunction is at play. I have a general post on here somewhere about GABA..

My POTS presents with very bad breathing problems, so in the ER last year they gave me high doses of prednisone in case it was asthma. They tried to tapper me off it and meanwhile i got the worst GERD ever which other doc told me it can cause. Meanwhile I though it may have helped a little to I pressured a pulmonary doc to leave me on a high dose around 50-60mg/day and so i was on that for a month and didnt see any improvement then when I told other dr they said i better get off it asap or risk getting addisons. It took me 5 months to tapper off it, my endo thought it was too late and I had Addison's, but finally Im off it for over 7 months without any noticble change..

I had a pots friend of mine recently tell me their dys sometimes was higher than his sys lol yea he's a little unusual

I've lived with this pots breathing torture for over year now, so far nothing helps..

Unfortunately I reached the limit of options or I would add tons more..

@imapumpkin, i can speak from personal experience. My POTS cause a very disabling breathing issue, as well as low IgG,immune and I got Pneumonia 8 or so months ago and it was the scariest thing in the world to have them both at the same time. Ppl with any kind of breathing issue are more susceptible to complication with pneumonia. And unlike asthma or COPD rescue inhalers dont work well for POTs breathing issues.. Its a dangerous scenario and if she had it may have confused her and may have left her more vulnerable..

"Several factors contribute to the difficulties in the management of patients with POTS. First is the lack of patient education (or, worse, patient misinformation) about the disorder. This leads to unrealistic expectations about the beneficial effects of treatment aimed to correct the postural tachycardia and secondary frustration and symptom amplification" Wow they are really messed up if they can say that! More like lack of doctor education (or, worse doctor misinformation)! We are "unrealistic" about what, wanting to be normal again?? **** right we are frustrated you should try being our shoes for a day! "Symptom amplification" if anything we tone our symptoms down and fit them with all our might. We dont want this and we arent exaggerating it!

Breathing, chest pressure

Kitt I'm confused was your blood drawn for the test when you were laying down, sitting up or standing? The proper way is to have you stand at least 10 minutes in a quiet area with no distractions like ppl or even TV. If they took it while you were sitting like they do any blood test, you need to have it taken laying down or do a 24 hour on ice urine catch because pheochromocytoma patients have high NE too but all the time not just standing for 10 min..

Interesting you had to stop taking BB due to MCA. Some ppl do better on different types of BB, it pays to find the right one since it will help keep your BP low at night. But have you taken your BP right after you wake up from one of these episodes. I've gotten them a few times, they are so bad because you have slowly calm yourself down from a subconscious dream.. Do you use any hyperadrenic meds like clonidine? Possible other BP lower meds might help, for example antihistamines would help with MCA and they lower BP.. Good luck, keep us posted if you find something along the way..

Yes to major dry mouth, that's what causes me to drink a gallon of water per day. Yes to dry skin but mainly the back of my hands. Not sure about dry hair.. Dry eyes when I wake up from sleeping. My blood test last year was negative for Sjogrens but I'm going to a specialist next week. I hope she orders a lip Biopsy, that's the only 100% test for it. Blood is only 50% accurate and I know ppl with POTS who have it and tested negative blood but positive lip biopsy.. Mestinon has help a little with it so far...

:'( this is so upsetting. Some people don't understand "for rich or poor and in sickness and in health" only when we are in these trying time can we see who will step up and support us. It's really hard I'm also alone now and at times the silence is calming but most days you end up longing for companionship that is missing. This is totally the other fault. Usually happens to the best of us, we give our hearts to people who are unworthy and can't reciprocate. But I have hope as should you that there is someone out there who will love you as you deserve to be loved and cared for. I'll pray for you and your children to find love and happiness and for your husband to see the wrong and have remorse for his selfishness.. Hugs!