Lemons2lemonade

Wondering on UTI issues with this group.

rich, i'm sorry you aren't feeling well hopefully it resolves itself. Be careful of OVERMEDICATING yourself. I used to do this all the time. I get freaked out and then take a bunch of things hoping that it will help. Even if they are herbal, they can have an effect. You have to trust yourself too, if you think you need to go to the e.r. you should go. My rule is that if it is typical, i don't go, but if it's new, then i am going to go and get it checked out. If it makes you feel any better, they have NEVER found anything wrong with me, but my symptoms are also a lot different than yours. I'm confused, you are or aren't running a fever? Also, don't forget your salt with that water. Is this normal pots stuff for you, or is it different?

That is exciting, i'm rooting for you, and i hope that you get some answers! I would ask for an angiotensin ii test and also an ace blood test. Maybe you would like to see what this doc's opinion is on theories involving, angiotensin ii, nitric oxide, autoantibodies, etc. I have a question, that dr. goodman couldn't answer for me, maybe you could ask. Why does florinef make birth control ineffective? I asked dr g. this and he said no one knows maybe your doc will have some insight?

Rich, when my pots first became bad, i was sure it had something to do with glucose. I have had my fasting glucose tested over 5 times, and also have had a glucose tolerance test. They give you this really sugary drink and measure your body's response to it. After 30 minutes, i became symptomatic. I thought i was going to pass out and they had to take me back to a bed in my dr.'s office. They drew my glucose and it was within normal limits. Wonder if it would bring on symptoms if i did it again...Another thing to consider is that the brain needs glucose just as much as it needs oxygen. I also have always wondered if it's not the lack of oxygen to the brain, but rather a lack of glucose that causes our symptoms. Or since it is supposed to be a blood flow issues, maybe its both. I've also read that epinephrine raises blood sugar. And during our "panic attacks" or at least mine anyways, i can assure you my blood sugar levels are becoming readily available as though i were running for my life. Here is a basic article on this: http://www.emedicine.../article_em.htm "Adrenal insufficiency results from diseases that impair the adrenal glands, which are located above the kidneys. These small structures make certain hormones and substances, mainly cortisol and epinephrine, which also help elevate glucose in addition to their other functions. If these substances are not made, low blood pressure, hypoglycemia, or both can result." Hmm...according to this article beta blockers can also cause hypogylcemia..that's interesting... When i think of pots, i think of it as multiple mechanisms building off of one another. Its like one system trying to correct something, sets another system off to try to correct it, but instead it restarts the other system off etc. until it turns a full circle and the process continues on.

Explains why i always wake up sweating.. web.mst.edu/~rhall/neuroscience/03_sleep/sleepneuro.pdf

Yes, and every morning I wake up, my hands are numb. I have to put them below my waist to get any feeling.

Ugh! For the past 3 months during the worst part my menses, the barometric pressure has been dropping. It is SO frustrating. I wake up in the morning feeling okay, attributing my feelings to my oncoming menses and then all of a sudden i start to feel really bad and i don't know why. Then, i look outside and it is RAINING! Ugh. I amped my salt up today and put on my old softball helmet. I'm not going to let this lay me down all day and reverse my progress this far.

Wow, that's really great that your doctors were able to control it for so long! I'm sorry that things aren't working out so well. I didn't think compression stockings would do much for me and was skeptical. Then, i talked to my uncle who had heart surgery about their effectiveness and he was a huge fan. I gave them a try, and i LOVE them. I was amazed by the difference. I won't go out without them now. I use 30-40 mmhg, and after using them, i wish i could have compression all over me! If you want to get some new ones, this is a really great website http://www.drleonard...ckSource=SEARCH they also have other styles. I usually get mine from here because they are way less expensive than in the local medical supply stores. I also noticed that they improve my ability to exercise, which creates more muscle and in turn more compression. Have you ever tried increasing your salt while reducing your florinef? I figure that one day, when i have to go off of my florinef, this would probably be how i would do it. If you are an old tequila fan (i read that you like margaritas), you might like salt shots. I have a huge problem with salt tabs/ thermotabs. 1. i don't think they help me 2. they make me really nauseous. So i do salt shots instead. 1/2 tsp of salt dissolved in around 2-3 oz of water is 1.5 grams. I try to use warm water so the salt will dissolve. At first, it REALLY grossed me out. Now, i love them. It is a fun way to take salt that doesn't upset my stomach. And once i got used to it, i could increase the amount to one teaspoon, which is 3 grams. I've found that it is the easiest way to get 3 grams in one pop. Some other easy and great ways to get salt are: *chicken noodle soup 1 cup ~ 1106 mg * cup of noodles~ 1.19 g * Swanson's hungry man dinners: turkey, meatloaf, fried chicken~ have about 1000 mg * Dehydrated onion soup mix 1 packet~ 3132 mg * Pretzels 15 medium twists~ 1715 mg * Green olives 3.5 oz~ 2400 mg I read that you have kids, so maybe just having these things around to munch on would keep it simple. Also, i salt ALL my meals. And when i do salt, i just skip the shaker and salt with the original morton's container. It sounds gross, but when i eat it, i love it because it makes me feel good. Also, i've learned that since i have increased my salt, i have started craving it. 1 tsp of salt= 3 grams, which is 1200mg of sodium I hope you start feeling better soon

seeing if others are like me

Anyone know anything about this, rama?

I agree with chaos!

You know, i remember when I first got pots almost 5 years ago, I would catch myself holding my breath all the time. I thought that was the problem and along with some other inadvertent compensations, was able to overcome it. In this exacerbation, I am noticing the same thing, I keep catching myself not breathing. When I do this, I take in a deep breath and if makes me feel better. I know breathing is an autonomic function, wondering if this happens to anyone else.

Rich, have you ever had a chest ct scan?

Bananas, i feel TERRIBLE doing exercise and WORSE afterwards. It seems to take about 2 hours of recovery and then things head down hill quickly. However, i notice that my day to day symptoms between exercising are improving.

Julie, i agree, i get symptoms without the fast heart rate too. Even without the tachycardia, i still have pots. Jangle, it sounds like the general trend of decreasing hr, is at least a good thing. But i think many of us feel this way, its unstable, and its frustrating. I do remember that when i first started exercising (more like just pushing to stay up on my feet) that the tachy would be worse for the next few days.

No, just that it can have some effect maybe?

So if we can affect this with our minds, can we also cause it with our minds, or is it a one way street? When I think of meditation, I think of it as a reduction in consciousness, approaching sleeping but not quite there. I think having pots makes it easy to meditate because I am only half conscious most of time anyways

thanks for the info!

Mcblonde, thank you, and yes i am very lucky that this bill was passed. Also i turn 26 this year, so happy birthday to me, no more health insurance

sue, what is a ppo?

Psychology journal: http://www.fk14.tu-d...ffmann_2003.pdf Monks increasing body temperature through meditation http://news.harvard....8/09-tummo.html

nice, guess my insurance company isn't as good

while i was in arizona, i had to write a request for an expedited appeal, this is a copy of that e-mail, i have edited out information, shown in brackets, to conceal my identity and the identity of my insurance company: "I am writing this from Scottsdale, Arizona, where I have already purchased a plane ticket, hotel and car rental in reliance upon on a referral from [insurance company] to the Mayo Clinic that was previously approved – in writing - and then was apparently subsequently either revoked or otherwise limited to exclude the very tests and services I was advised by my doctor to come here to have done. This apparent revocation was apparently done without my knowledge and without informing me in any way prior to my trip; I did not even learn of this until I was already at the Mayo Clinic in Arizona and was advised that there was an insurance coverage problem by someone at the Mayo Clinic. It was only after I contacted [insurance company] customer service to inquire about the issue that I learned (after speaking to no less than five different representatives and their supervisors) that my referral had been revoked and/or that the necessary tests would not be covered. As I have already relied upon the written referral and [insurance company's] oral assurances that all of the tests recommended for my condition would be covered under my insurance, and these tests are necessary for my health, I respectfully request that [insurance company] cover the tests recommended by my assigned physician at the the Mayo Clinic. Moreover, as I have already invested a substantial sum of money in getting to Scottsdale, AZ – money I had to borrow from my parents, as my medical condition has prevented me from working this entire time and I have very limited financial resources – I would request that this appeal be expedited so that this matter can be resolved promptly, before my scheduled return to Washington on February 20. I have been suffering from autonomic dysfunction and postural orthostatic tachycardia syndrome for over five years. After several misdiagnoses, it was finally diagnosed as this condition in 2010. It has been a debilitating condition for me. I cannot work. I experience traumatic and disturbing physical symptoms that require me to seek emergency medical treatment quite often due to their severity and similarity to a life-threatening problem. At times, I have problems standing up for more than ten minutes. This is, quite frankly, made my life incredibly difficult for several years. I am eager to try to get it resolved and live a normal life, and was extremely hopeful that this time at the Mayo Clinic would be a step in the right direction. After extensive research on my part and consultations with my doctors, it became clear to me that this condition is not widely understood by the medical profession. It is, in essence, an illness that very few doctors have experience with, and one that necessitates certain tests that very few facilities have the ability to perform. One of the few facilities in the country that does have the ability to do these tests is the Mayo Clinc in Arizona. Because of this, my neurologist, Dr. [x] strongly recommended that I come here, to Scottsdale, AZ, for a consultation with a doctor who is an expert with this condition and to have additional testing done. At the recommendation of Dr. [x], I sought a referral to the Mayo Clinic, which is renowned for having experience with this unusual and misunderstood condition. I received a referral in writing from [insurance company], so I booked a trip to Arizona to have the recommended tests – such as an autonomic reflex screen. I even contacted [insurance company] before the trip to confirm that these services were covered and was assured that they were. Thus, imagine my shock and surprise when I arrived at the Mayo Clinic only to be told that “there was a coverage problem” and to find out that the referral had either been revoked or narrowed to exclude the very tests that I was here to get (tests that the Mayo Clinic has the facilities to perform, as far as I am aware). In trying to resolve this problem, I have spent hours on the telephone with various representatives of [insurance company]. Some have informed me that my initial referral to the Mayo Clinic was unilaterally rescinded; others have informed me that the referral is still active, but that – despite the broad wording of the referral – certain tests are not covered because “[insurance company] can do these tests.” However, there are multiple tests that my doctors have recommended – including the autonomic reflex screen – that [insurance company] cannot do, according to everything that I have been told. Even after all of this, one of my internal medicine doctors – Dr. [y] – has indicated that these tests are necessary for me and that he believes I should be able to obtain them in order to try to resolve this medical problem. Frankly, I feel that it has been borderline fraudulent – if not actual or constructive fraud – for [insurance company] to issue a written referral to me and tell me that these services are covered, wait until I have spent a significant amount of money coming to Scottsdale in reliance upon the assertion that these services would be covered by my health insurance, only to find – after I was already at the Mayo Clinic and had received an initial consultation – that the approval was essentially revoked or would not cover the very tests that I was advised to get and came here to get. Moreover, I fail to see anything in my insurance agreement that would plausibly permit [insurance company] to issue me a referral – which is defined in the plan documents as “an agreement” – and then unilaterally revoke it or limit its scope without even informing me. I strongly suspect that an attempt to do so constitutes a breach of my insurance plan agreement. I am simply asking the [insurance company] honor the insurance agreement. Quite frankly, while I would certainly wish to avoid this route, should my appeal be denied, I feel like I have no choice but to seek legal counsel, contact my local legislative authorities and contact the local press to describe exactly what has happened here. I simply cannot see how this coverage denial and/or revocation – apparently at the very last second - could possibly have been made in good faith, especially considering it was already approved at one point. Moreover, I fail to see how this could be done without even informing me until the very date of my first appointment in Arizona. In conclusion, please consider my appeal in an expedited fashion and overturn the denial/revocation of coverage for the tests recommended by the Mayo Clinic. All I want is to have these tests so that my health can, hopefully, improve and I can try to live a normal life. I have already invested a significant amount of time, money and resources in this trip and would hope that this can be resolved without much more difficulty. Thank you for your time and consideration." The following day, dr. g's nurse called me stating that she received a "bizarre" phone call from my insurance company. Following our discussion, all of the needed tests were approved.