RichGotsPots

My POTS doc told me he was in-network so I didnt check. Today I findout he's not and he is charging me $2000 :-O

any ideas how to deal with this???

Went to a Rheum doc today, traveled an hour and they said there isn't any autoimmune things they test for, that a neurologist would test for all of them. What a waste!!

It's been a big help in controlling the chest pressure I feel, that makes my breathing worse. I don't feel cured at all yet. But maybe if we have some kind of hyperventilation it's working on that level. They recommend to do slow breathing for 5 minutes twice each day. They say to slowly breath in 7 seconds then out 11 seconds. Eventually the inhalations can be reduced to 4 seconds.

I personally feel its the pressure that is having the impact and not the slowness of the breathing. When I breath out like I described I'm causing a pressure in my chest, then slowly releasing it. I either want to buy a Positive Air Pressure machine like they use for sleep apnea or a respiratory trainer they use to do Buteyko breathing. Plus I may take a Buteyko class to see the techniques.

I still need to find out if I have orthostatic hypocapnia as Dr Stewart describes. If I do then I'll start looking into why and how it can be corrected quickly.. I'm encouraged by some positive experiences people had with there CPAP devices for sleep apnea. Possibly those devices are helping to retrain their breathing or curbing their hyocapnia (low CO2 levels).

also, "Valsalva maneuver: An attempt to forcibly exhale with the glottis, nose, and mouth closed.

This maneuver causes increased intrathoracic pressure, decreased heart rate, decreased return

of blood to the heart, and increased venous pressure. Intraabdominal pressure is also increased

(facilitates bowel movements). If the Eustachian tubes are not obstructed, the pressure on the

tympanic membranes also will be increased (used to clear ears with altitude change"

I just read that "Pulmonary vascular resistance would also increase during a Valsalva maneuver"

wondering if this resistance is what is helping me... I may try PAP- positive air pressure devices if my pulm doc approves

I take xopanex which is like ventolin, it help 15% max with breathing, not with POTS. Symbicort is a combo inhaler. I've had the inhaled steriod pulmicort, I've been too chicken to try the long-active beta but I have a huge supply of it. When I'm off the prednisone in a month I'll try it. But I've heard good things from people on here who use it for breathing issues, but they didn't mention any improved POTS from it, sorry...

My compression stockings have helped me stand for longer, I dont go anywhere without them, but I had a velco support belt from when a doc diagnosed me with a degenerative lower disc 10 years ago. I tried it on and it made the pressure in my chest worse after 10 minutes. I'm going to try higher compression socks next..

Going to see my pulm in a few weeks to do pulm exercise test and get PFT results. I want to see if he finds end tidal co2 levels decreased, then maybe I'll believe I have hyperventilation....

in 2006 I had my 1st pots flare, I lost 30lbs in 2 weeks and could not gain it back for 2 years ( I have a very fast metabolism. If I eat a ton and gain 5lbs in one day, overnight I lose all of it).

In 2011 I had a more powerful flare and lost 40lbs and now I still haven't gained it back. Sometimes I gain 10lbs but it doesn't stay on.

I have to wait until my breathing gets better then I know I could gain it back by adding extra calories with Probars. It's a healthy bar that adds 370 calories. Back in 2008 I would eat 2-3 a day..

As many of you know I have breathing problems that are scary. Only 3 things have helped so far.

1. drinking water (a gallon)

2. putting my legs up

3. wearing tight compression socks

Now I have have a 4th thing that helps.

4. Breathing in by restricting my my nostrils with my upper lip. This allows less air to go in and hurts my chest less than inhaling normally. Then I exhale with my with my mouth closed pushing the pressure back into my chest for 5-10 seconds. Then I blow the air out through pursed lips.

I relive this isn't exactly the Valsalva Maneuver but it's similar and I'm wondering why it works.

Anyone else try this and get positive results for their breathing issues?

I'm aware many people get this test for their autonomic testing but please don't post about the valsalva maneuver if it doesn't have to do with breathing problems.

I don't think this is related to hyperventilation because I don't breath fast at all, but this technique does slow down my breathing, which is what they recommend to correct that. But if I wanted to I couldn't slow breath the regular way because it hurts my chest..

I'm wondering if the autonomic changes this maneuver can cause are actually having a positive affect for me changing my blood flow..

Dr Stewart ran testsed that showed half the patients had Hypercapnia (a condition where there is too much carbon dioxide (CO₂) in the blood) (it's important to note that Dr. Stewart did not test patients blood to determine they had Hypercapnia, instead he test the air they exhale). Hypercapnia is one of the causes listed in Wikipedia as causing hyperventilation. The second time I was in the ER they wanted test my my artery blood for o2 and co2 levels. They nurse couldn't find my artery so instead she took it through a regular vein. It cam back normal. So no hypercapnia at time.

There is no scientific testing for hyperventilation, this bothers me. The only diagnosis testing I've read for it is to make the patient forcefully hyperventilate. Find me some clinical research on this so called syndrome where they tested a control group and the control group didn't have a problem making themselves hyperventilate..

I have been using the valsalva maneuver with successfully controlling the pressure in my chest that causes my breathing. I'm trying to figure out how this is helping. It affect a lot of autonomic things both pulmonary and cardiac...

I was hoping that our move to our new apartment two years ago would make life easier for me as it was much more central to eveything and life was difficult because I odn't have a car to get places. But it's incredibly noisy -- traffic, people etc and I'm really starting to feel strung out in the potsie-tired-but-wired way. I spend a lot of time feeling like the noise is actually painful. (It's definately painful when I have a migraine too, but I"m talking about that sensitivity to noise some potsies have which feels painful). After 2 years here I have decided we have to move. I'm just trying to get up the energy to rent out our apartment, look for a new one for us to rent and do the actual move.

Good luck! I have the same noise sensitivities. I used to love loud music, concerts and lived in the city. Now I cherish peace and quiet..

http://jnm.snmjournals.org/content/34/11/1931.full.pdf

"They were studied during upright Tc-HMPAO brain SPECT........"

Update: hasn't helped

Do you have sinus issues too? I went a whole year without smelling or tasting because of nasal polyps..

I pray for one day that I can get to the point you're at. But since I've been researching my own severe shortness of breathe, I've come across people on here who have Vocal Cord disorders. From what I read from them, the trick is having a problem at the time they look at your vocal cords.. They didn't think that could be causing it, but they had it proved in tests. Might be something good for you to ask your doctor about. Hope you find an answer soon!

Hi Pamyla!

Thank you so much for helping me out. Our feelings are very similar. I will try to PM you soon so that we can talk about Lyme and not get too off-topic on the board. But, you know that double-edged sword. I feel like if I want to kick this in the butt (the Lyme) I am going to be even WORSE about being able to keep up with email! And folks here know, I'm the queen of slowness in that department!

Anyways, I would like to tell you more about the massage and tolerating it (it's actually been really interesting sicne I started Lyme treatment vs. when I was not).

But, first, I wanted to ask you why it was so surprising to you that I tolerated massage so that I could better tailor my answer!

Thanks!

Later alligator!

Emily

Did your lyme or co-infection cause you any breathing issues?

Also did you have dysautonomia issues after Lyme or it's co-infections or was it after?

Has treatment helped with dysautonomia or the infections symptoms?

Has treatment helped with breathing issues if you had them?

Thanks!

For some reason most of the Mast Cell expert I have found are in MA

It could be that caregivers and those in the medical community are exposed to more infectious illnesses than most people. Maybe that's the connection. Cancer patients are more immuno-compromised than most and prone to infections...

As far as a psychosomatic element, this is an illness that affects our ANS which has a ton to do with anxiety response and hormone activation, so i think the stress response dysfunction comes after the physiological dysfunction of our ANS.

Rich,

Do you have to wear oxygen 24/7? What is the nature of your breathing issues? Have you gotten to any doctors that can help you?

My oxygen levels seem to be perfect, but that isn't an indication of all life-threatening lung problems. I have seen 3 pulmonary doctors so far and none of them can explain my breathing problems. So far it is chalked up to POTS. There is no rescue medicine for it, the only thing that helps is to stop the blood pooling by raising my legs and then to drink tons of water. Compression stockings help somewhat. I'm still exploring a few more areas, but pulmonary specialist are baffled so far. I'm going to see a POTS neuro soon, a rheumy and also going to look into lyme and co-infections..

My breathing issues seem to be strictly POTS related and they are severe and very life threatening. I wish they did a better accounting of everyone's symptoms and mortality.

unfortunately I'm too ill to visit one of the major clinics, they are all over 10 hours away and I'm too ill to fly, drive or take a train. My POTS breathing problem is really life threatening and I have no medicine that helps of rescues it. I'm trying to make the best out of really scary situation. Unfortunately the NYU autonomic Lab doesn't take insurance and Dr Stewart only sees pediatric patients. My Doctor sees POTS patients just not as many as a clinic or researcher. Some how I'm his first one needing disability.

It's been over 1 year I've been out of work and I was let go from 3 jobs already because of my illness I really need this... I sent him one study so far and the diasability studies on the Dinet.org links page.. I'm going to try to ask my pulmonary doc to write a letter and my primary. I have all my doctor visits and testing in 1 folder..

I pray I get approved on the first try..

Does anyone have any studies to back up our 100% yes answers?

Whenever I flare I lose weight, this last flare I lost 35-40lbs. I'm 6" normally 185lbs now 148lbs