McBlonde

Thing is nearly all the evidence suggests that astronauts have orthostatic intolerance because of increase nitric oxide activation.

How do the astronauts get rid of the increased nitric oxide, Rama?

I used to be the one freezing wearing sweaters in the summer..

Two years ago I turned the air on 65 kept it there and now my husband is wearing the sweater.

Recently, I am now both.... either freezing to death or burning up. It reminds me of Michael Jackson when he said he was cold and hot.

Once I was going to do swim thearpy but when I got into the pool my body temp dropped so low... I almost had hypothermia.

I guess my themometer is totally broken.

Interesting......"whiplash syndrome" is one of the most common reasons for pituitary failure, also... I will have to look for that book!

This may be a dense question- BUT how do you know MCA patients don't have a temporary hypertensive episode prior to hypotension in response to excessive nitric oxide or hydrogen sulfide. We have so many vasodialating mediators bouncing around at any given time- it's impossible to determine WHAT mediator is causing WHAT symptom... right?

BTW, I recently started turmeric again- AMAZING results. MY excessive nitric oxide is easing up and my little masties are happy-er

Yeah, your BP observation is interesting. I also feel good, more energized, with slightly higher BP. That's kind of how florinef therapy a la Dr. Rowe works too. He seems to get my son's sitting BP a smidge high & then he can tolerate being upright longer w/o lightheadedness and syncope.

So interesting! So, Dr. Rowe adjusted Florinef per the sitting BP.. did I understand that right?

Well.... the whole point that I got was that fainting is not to just be laughed off. There is a REASON a person faints.

It does... thanks!!

That's for letting us know this was on! Somebody should have not just laughed and said "look at that baby ..she's fainted" when I was THREE YEARS OLD!

Tomorrow's astronauts segment sounds promising.... or at least as good as it gets on MSM!!

Thanks again.

I guess that is sorta along the lines of a research paper I read last night on how stress hormones the body produces under intense stress can actually damage the hypothalamus.... the brains message center. Therefore, if the messages don't get sent out right to the receptors ..........

Bren that it EXCELLENT!! I hope you get that wonderful saline high that I do!!

So if we can affect this with our minds, can we also cause it with our minds, or is it a one way street?

Lemons... Maybe I am not understanding.....Are you saying cause POTS (because of our psychic?)

Thanks for the heads up! I will set my Iphone on alarm for a reminder so I don't forget to watch!

Yea, I can see where each (HMO and PPO) have their advantages AND disadvantages.

Exactly! If you have a FABULOUS primary care doctor..... well, that helps so many things. The problem in my area is the PCPs are all more "doc in the box" 5 minute visit types... which doesn't work too well for me.

Amazing!

These are managed care terms: PPO = a preferred provider organization. An HMO = Health Care Maintenance Organization .. The HMO is cheaper, BUT the primary care doctor controls everything.. With the PPO, you don't have a "gate keeper". You can go to whoever you want that is listed in your network and also you can go out of network, but you will have more out of pocket expense.

here's a link for explanation

http://healthinsurance.about.com/od/understandingmanagedcare/a/HMOs_vs_PPOs.htm

For some crazy reason... ( consider my POTS brain, lol) that reminds me of the the SQUAT test which I was reminded of yesterday on some posts here about exercise including working in the yard squating to pull weeds.

This is what happened. Maybe somebody can bring it home as to the why....

One of the tests my doctor did as part of my work up besides the standing, renin, aldosterone, etc. was the SQUAT tests. I can't remember now what failing it meant, but.... yesterday I was thinking that squating would not be a good thing for most of us with OI, POTs or whatever we call it...

I bet there is some specific POTS rehab types of exercise to follow.. I am trying to work my way UP to yoga, lol... baby steps with walking and sitting every single day right now.

Any known rehab protocol after being bedridden?

Oh... Julie! Glad you posted that! I had forgotten. THAT is exactly what sent me in to the crash from ****. I had a ROOT CANAL, lol!! I wonder if an IV of saline AFTER the root canal would have kept the crash from happening or even just kept it from being as severe?

Ok... let me think, lemmons.. That's where we were...

1st, when my daughter turned 26 ...she had to go off of our insurance, but WAS able to get COBRA... a continuation of our insurance which cost us through the nose, but worth it if your child might need heart surgery AND then IT ran out.

What happens then is you have to apply and be denied for insurance......WAIT 6 months without any insurance then at 6 months (depending on your state) you can apply and get coverage again under the ACA. We have 2 1/2 months to go. I say my prayers every single day that we make it.

Great appeal, Lemons! I have to say, that referral that neuro wrote is one of the worst I have seen!! I was in the "business" 20 years and I bet dollars to donuts that is a capitated HMO. That means.... there is 1 amount paid for each patient per month. If they refer you out of their system....it comes out of their pockets... sad it works that way, isn't it?

Another IMPORTANT thing you said is that you are on your parents's insurance still. THAT is a huge blessing and one of the things to know when elections roll around. So many young people with pre-existing conditions are able to stay on their parents ins now, and I hope that part of the affordable care act doesn't get appealed. Before that law came info effect, my daughter, who turned 26 was dropped from our insurance and THAT was terrifying.

I forgot.... Does anybody know if Mayo accepts Medicare as primary now?

Thanks for the info!

xoxo

If I wasn't so undisciplined, I would have updated this thread each day to document! Still moving s l o w l y along. Trying to hold back the Type A personality is hard! Every day I walk a tiny bit farther. The sunshine is GREAT. My husband started out driving me around the neighborhood (One of my big issues is symptoms happening while sitting) I am up to riding for 36 minutes before POW... I feel the blood pooling in my stomach and the nausea starting. If I don't lie back immediately, I get those AWFUL orthostatic headaches with nausea. I can't push through it....and keep riding ( i just throw up and almost pass out if I push it).

My plan is to keep adding a few minutes a day in walking and riding. Question.... I am scared to eat anything other than what I talked about above... Even restricted ... I feel very full fast and sorta bloated, but then oddly enough... hungry again a few hours later... and at that point, I don't know what to eat. Any suggestions?

Issie.. Just catching up.... SO sorry it didn't last!!!!! I am so glad that you had 10 glorious days... May they come closer together and last much longer!!

Wow... that's a hard decision to make. Doing so well for 4 months under your present protocol....... for the unknown. Tough call. Best to you!!

One thing those after lip compression garments won't do is ride up, lol! You practically have to lie down and have someone hook and zip you into it! The question I am wondering is if it wearing one would enable me to be able to ride in a car without the blood falling to my stomach and pooling?

That is AWESOME that you have a physician that is willing to work with you. Those are few and far between!

Excellent post regarding the tone of the forum, Issie.

The only thing that I want to add to this topic is that if sheer will power through exercise, doctor's recommendation, medication would get a relapse, I would have been cured long ago. I did exactly was what described and pushed and pushed and pushed through it. It didn't cure me. Trying harder is not a cure. I know that for a fact.

On the other hand, Lemons.. It sounds like Mayo AZ was a WONDERFUL experience for you. You have a plan. You have a PLAN! That is a wonderful thing to have and from my experience, having a plan to go by, to give to another doctor back home, to an ER, to rehab people, etc. etc. is worth it's weight in gold. I am SO glad you had the opportunity to go to Mayo AZ and I wish you the very best in putting this crazy disease behind you!

I'd hate to have to fight to get into that one McBlonde but, it does look like it would work good. If you had thigh high support on you'd be covered. But, I wonder if you could breathe?

LOL! The lipo patients have to wear it at least 6 weeks... When they wake up from surgery, they have it on! A sight to see in surgery!! I'd forgotten all about them until I saw this topic!