spinner

Ive been using an oxygen concentrator as needed for a couple years. Only fire it up during flares. Purchased on craigs but the original was a rental.

The thing about breathing problems is..........doctors only think about your 02 saturation, NOT about how much youre struggling to get air!!!!

There is a modern stigma that people will get "dependent" on 0xygen therapy but to me, that seems ridiculous.

Everyone is dependent on oxygen as its the main fuel your body uses every second of your life.

If you research the "pre flood" era biblically and archaeologically the 02 content was 50 percent higher. The human

body apparently is designed to run on a higher content.

I wonder if you can rent an 02 tent that is hyperbaric and see if it yields results under the supervision of

a respiratory therapist? I would certainly do that myself if I were struggling with air hunger.

Blessings

Spinner I looked into getting one at home, but I wanted to try it first. MomtoGiuliana thanks for the info. Seems like it could maybe help if you know the specific cause of your POTS

If it doesnt help i dont push myself to do anything. Just because it helps one doesnt mean it will help another is my thinking.

I pay close attention to my level of dizziness and weakness. If it spikes I stop doing what im doing rather than get

into a situation that pushes me into a flare.

The newbies here are probably learning that, but we all have to keep learning it.

The only exception is when im trying to test the waters to see if i can do better after some medicine or supplement

change.

Its an extremely hot and growing part of medicine. Oxygenation of tissues and organs etc.

Good for athletes as well, apparently michael jackson wasnt quite as crazy as some think.

I'll bet it helps immune and nervous system neurological problems long term, although

not much research yet i would think.

You can buy a portable system for your home, cost getting somewhat doable.

yeah, giving up my running and tennis was a little hard. But then again, im over 50 so probably a good

time to quit pounding the knees.

I strive for an hours easy steady workout, biking, swimming, walking now.

Nothing that pumps my BP suddenly.

Swimming is clearly the best as it gives the other benefits.

It stinks when they heat up a perfectly good pool though. Like swimming in a jacuzzi

Obviously, alcohol is a depressant and a powerful interactant with any meds so should be used with extreme caution. But I occasionally have a drink (not beer) not to socialize, but to relax from stress or

to actually (strangely) motivate myself when im feeling listless. Maybe twice a month.

I guess im going to completely give it up because its like clockwork now. 8 hours later i crash,

start having some shortness of breath. It seems its depressing my various nervous systems.

ANyone else? Or anyone who's found a small amount helps in any way? I know wine has

medicinal properties but I despise the taste of it, and it's sucking the energy right out of me.

Dr. Jaeger, cardiologist, might be the place to start. For me anyway they did tilt, cardio, neurology,

and you can branch out to respiratory, immunology, endocrinology, etc as needed.

Lynn Pattiemychal (spelling?) is a great internist if she's taking new patients.

I sure would help if i could.

IDEA: ANY decent sized reputable church will have members who would love to help any way possible.

Contact the pastor/secretery immediately. The deacon board or ladies of the church can handle

almost anything and come to their aid right away

i first noticed this problem at church, couldnt sing anymore. Started just mouthing the words.

Swimming has helped with this--apparently prolonged mild exertion regulates my breathing

in my nervous systems. I can do it for up to an hour, easy pace, and i feel great afterward.

--i also have an oxygen concentrator. Go on extra 02 for about 30 minutes after a mild flare

and my breathing is regulated again.

- I AVOID like the plague MSG and aspartame. These chemicals are in most processed foods. For some gluten or food allergies are a culprit in breathing issues.

I know we dont give medical advice here, but we can recount personal experiences anyway. Swimming is the one time during my day when i feel almost completely normal as long as its COLD water. Some of these health clubs including mine have the water going up to the late eighties, which is WAY too warm. I like it cold. Other theories of mine on why swimming is best

--antigravity aerobics

--lends itself to steady exertion not sudden

--pressure on the body

--cools core temp

--vasodilation issues

--possibly involves less adrenaline than other sports

--is ideal for many who or somewhat overweight ( I see lots of chubby people doing the

breaststroke which is a slow steady exertion, and then rest, and repeat)

--regulates breathing of various nervous systems (like yoga breathing)

---?????Im sure there are other benefits, im interested in yours

Great thread idea.

I have 2.

1. extreme sensitivity to heat. Im talking anything above 72 f. I cannot even go to some churches or even hospitals because they keep it warm for the elderly and i about go into sycope. I function best around 60.

2. No sudden BP spike. Running up stairs for example can flare me for 24 hours. I move slowly now. No more tennis. I can swim or walk.

we cant give medical advice here but as for me, the weak legs, singing weakness, and gasping for breath all meant a direct correlation to sleep apnea. Whether its obstructive or central the act of

stopping breathing during sleep messes up your various nervous systems big time. And for

some the out of breath (dyspnea) is what sends us to cardiology.

Unfortunately, apnea is about as underrecognized by some docs as POTS. Or dysautonomia.

Then for me anyway, there were considerations of blood sugar, glucose, hypoglycemia, and

also adrenal cortisol function and thyroid tests.

Finally, I personally found direct correlations to gastro. Sudden food allergies such as dairy, eggs,

peanuts, canned fish (histamine), and EXTREME problems with aspartame (diet coke) and MSG (which makes me feel like ive been poisoned which it IS).

I personally keep a diary. Anytime I go into a bad flare like that of symptoms, i want to know whats

been going on/eating/doing the past 12 hours.

I usually find a correlation.

Thanks for the suggestions. I guess I'm just trying to understand everything better. So many health care professionals have recommended swimming and they don't seem to appreciate how ill it makes me feel. They assume I am unwilling to attempt exercise or blame my problems on doing too much too soon. I don't seem to be able to improve on any kind of exercise I try, it just makes everything worse.

I recently saw a physio about my joint hypermobility syndrome and the only help they can offer is hydrotherapy but I'm reluctant to take it following my post swimming experiences. Unfortunately no-one is really interested in finding out why I get such severe symptoms upon leaving the water so I'm pretty much on my own here.

At least we have dinet where there are people who can join minds and throw out ideas.

I guess we've all figured out no one can really understand unless they've gone down the path.

Ive been given Ativan which is the standard ER sedative type med, and it hypes me up like a monkey snorting

crack

Wow pink, to get that kind of support and understanding is off the charts. Id think 95 percent of us dont

know what thats like.

has your potassium been checked for periodic paralysis?

Are you hydrating sufficiently with electrolytes to prevent cramping?

But with POTS it wouldnt surprise me if clotting is more likely. I came

up with a blood test one time indicating I had a clotting enzyme go positive.

I never did anything about it. Didnt get worse.

I excercise 6 days a week

Ive relocated north, and had gotten work right away however wasnt able to work 9 hour days. Im looking for other sales work but now I know I can only work about 6 hours. I put this information right on my resume, alongside "diagnosed cleveland clinic" which carries some weight around here. If asked I say I have a neurological condition affecting my central nervous system. I say im looking for part time work- up to 30 hours a week.

No doubt its scaring off people, but I figure theyre going to find out anyway. My last boss knew all about my situation and tried to work with me--especially with the heat issue.

Im wondering how many people tell their employer whats going on, and how many keep that private. Quite honestly Id have to say potential employers will definitely discriminate against you (but never tell you this is the reason you werent hired).

For sure we're different, we can be cold/heat sensitive or both.

But Im wondering out loud, you feel good in the pool, but feel poor immediately after......

For one thing, usually an indoor pool is a hot area and highly humid. I get immediately out of there

into the locker room for a cool shower or I'd be very weak quickly.

Also, lactic acid may be building up in your muscles.

ALSO, you might want to look into periodic paralysis with an endo. Its an emptying of all

potassium into your bloodstream with exertion. I take potassium for this.

I dont know much about vasodilation, but perhaps your ANS is trying to make an adjustment and

youre going into a serious immediate syncope and then perhpas your bloodstream is flooding

with adrenaline???

Just throwing out ideas, we all know how complex these things can get---just everyday things

normal people never even think about.

In my case i cant stand being in temps above about 75 degrees, and if indoor, lower. It completely

dominates my life.

Ive had weird thyroid numbers too. Have you done a.m. saliva cortisol?

But yeah, i get sleepy. Probably partly the disease. Partly the lifestyle of no

caffeine and no working full time.

Also, cant excercise as much as i want.

One solution is to get moving, and keep your environment very cool

none of my business, but ive never heard of a POTS patient being helped by hot baths.

NO.

Swimming is miraculous for me. The anti gravity and cold/cool water is great.

I highly suspect 89 is WAY WAY too high to cool your inner core.

I think you may be overheating.----basically a heat illness with your internal organs making you sick.

You might want to try a cold pool or lake and see if you notice an immediate difference.

thanks breth, i'll get on fluorinef right away. Is OTC antihistamine sufficient or what brand/dose do you recommend?

Are you sure its ANS related? If so, you might want get to vanderbilt, cc, or mayo IF you can.

Thanks for the replies! Anxiety, stress and worry are such useless things but it often doesn't seem to matter how much your rational mind knows that, does it? Funny thing is people always used to comment on how laid back I was but years of struggling with symptoms and trying to figure out what's going have made me a very different person.. It doesn't take much to get the adrenaline going these days unfortunately.

I'm not an extreme weightlifter by any means spinner, it's a pretty casual thing as my main form of exercise (I have trouble keeping weight on so I find it better not to burn extra calories with cardio, though I do a fair bit of walking generally anyway). I'd probably be laughed out of a gym with the amount I do! It's uncomfortable doing even that (and the walking, to be honest) but I do try to push myself.. If I only did what I'm physically comfortable with I don't think I'd do anything much, which obviously wouldn't be good. I'm sure she's right in that I shouldn't push it too hard for a little while though. My diet is pretty good I think, I gave up caffeine a couple of years back due to sleeping problems, it didn't make much difference but not a bad thing to have given up regardless.

I don't think there's anything wrong with my heart per se as I recently had an EKG done, as well as an X-ray, and they said they looked fine. I'm guessing it's more whatever controls all that stuff, which is obviously what lead me back here. Hopefully they'll be able to shed some light on it either way.

I think it's just that I'm struggling to keep my mind off it in the meantime since the symptoms are so constant and in your face. I'd previously managed to semi-ignore some of them (to a degree, at least) but when you see a concerned doctor it tends to rub off, I find

Sounds smart, if you do anything I think mainly aerobic would be best. Im not sure the goal of gaining weight is going to be all that helpful. You simply want to be toned, and eat a smart diet--your body will find its own weight---why mess with it? Swimming by the way it almost a MIRACULOUS activity related to ANS disorder. THe anti gravity alongside the rythmic breathing and the core body temp cooling are completely unbeatable. You might want to take a week and swim at a moderate pace building up to 45 minutes if you can and see if you dont feel the best you do all day every day in that pool. I do.

This has been brought to the forum before. As i recall there was a doc in california or arizona treating it successfully.

Yeah, i tested out big time for milk, so gone. But almond milk seems ok with shredded wheat.

Yogurt, surprisingly, completely destroys me into a flare. Must be another ingredient there im working against.

Can you eat cereal dry? For something salty or crunchy maybe some of those rice cakes or pork rinds.