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  1. Say Sue, What test(s) did they do to test you for porphyria? Was it a 24-hour urine test or a genetic test or something else? Also, I'm wondering if the tests are only indicative if you are presently going through a crisis. Any thoughts?
  2. The urine started darkening as soon as I put it in the sunlight, but I left it there for about 6 hours. It reached the color of steeped black tea with a hint of a reddish tinge. I took some pictures of the darkened urine side by side with another sample that was not exposed to sunlight -- very impressive.
  3. I recently had a very weird experience. One day, out of the blue, I became very ill. I thought it was a POTS flare-up. I remembered that there is a "poor man's" porphyria test, so I tried it out. The urine sample that I put in the sunlight darkened very quickly. I called my doctor and went for a urine test at the hospital. The test is still "pending". Does anyone here have porphyria? Is it hard to get a diagnosis? Is there any other condition that would cause urine to darken in the sunlight?
  4. Toward the end of the video, there was a mention that diet contributes to the stores of NO in the skin. He mentioned green leafy vegetables and beet juice. Does anyone know of other foods that promote NO storage? Wondering if my diet is making things worse. Sunlight has always been a huge trigger for me. I don't have problems with low blood pressure, but I do have problems with narrow pulse pressure and I'm assuming it's from low blood volume. Even a bright winter day, with lots of reflection off of the snow, can make me sick. Just trying to figure this all out -- there are so many factors to consider -- it gets so confusing. Thanks for posting the video, it was entertaining as well as informative!
  5. I'm on propranolol for hyperPOTS symptoms. I'm using the 60mg extended release. I have tried the regular propranolol tabs, and for some reason I cannot tolerate them at all. I think it's because my body is so hyper sensitive to even the smallest changes and the regular tabs don't supply the gentle transitions (as the drug kicks in and then wears off) like the ER capsules do. Although the ER capsules work like a charm, I will admit it took about two or three weeks to adjust in the beginning. The only drawback is that the capsules cannot be broken into smaller doses and 60 mg is the lowest available. So it's like taking 3 of the 20mg tabs spread out throughout the day. I am much less symptomatic in the winter, so I have recently experimented with opening the capsule and dumping out a set amount of the little bits inside. It seems to work. It's so hard to be in the "trial and error" phase. I truly hope you find something that works.
  6. Thanks for the input everyone! I bought some himalayan salt and I really liked the flavor. However, being a part of a large family has its disadvantages . . . my hubby and kids also liked it, so now I have to share it with seven others! I think I will still use some iodized salt (in cooking, etc.). I also checked the multi vitamin which I've been taking and it says it provides 100% DV for iodine, so I guess I shouldn't worry about that.
  7. I've been trying to increase my salt intake like my neuro suggested, but I'm a little confused by all of the different kinds of salt available today -- table salt, pink himalayan salt, gray celtic sea salt, etc. When you folks put salt in your drinks or on your food, which kind do you use? Do you know the mineral content of the different kinds? And what about iodized salt? Is that important?
  8. No, Jacquie, I have not tried the Ultima replenisher . . . I had remembered seeing it mentioned on the "autonomic" handout from my neuro. I'd love to know your opinion if you try it. The NUUN tabs take some getting used to if you are switching from gatorade. They are definitely not as sweet (I sometimes add a little stevia if I'm having a sweet craving) and the flavors are muted.
  9. Jacquie, I think that the other natural electrolyte drink that you were mentioning is "Ultima replenisher" and can be found at the website of that same name. Also, there are three kinds of Nuun tablets: the original (called Active Hydration), U Natural, and All Day Hydration. The original has the highest electrolyte profile so that's the one that I use.
  10. My neuro recommends that I use the NUUN tablets (at least 2 tabs per day). They have very little sugar (sugar alternative?) and they don't have any artificial color. I order them online from Amazon and the NUUN company. I think there are also a few other places, like EMS and REI, that sell them online and in their stores. If you are wanting to try them, get a mixed pack because some of the flavors are better than others -- but it all comes down to personal preference. Be aware, though, some of the flavors, like the lemon tea and the kola, have caffeine.
  11. This happens to me all the time. I've just learned to ignore it. But it sure would be nice to know why it happens.
  12. Yup...all depends on the day and the weather and the number of triggers that are affecting me at the time. It ranges from crawling on my hands and knees to get to the bathroom, to walking (on level ground) for about an hour. Never a dull moment...and I mean that with all sincerety.
  13. My TTT was only 10 min., but it took me 2 long months to recover. Doesn't seem to make sense that something so simple could have such a monumental effect. And even now, 3 months after the TTT, I am not back to where I was before the test.
  14. I'm still recovering from a major flare-up. I've come a long way since August, but I'm still not back to where I was before the flare-up. I started exercising with small hand weights and "bicycling" my legs while laying on the couch. I couldn't do stairs either, so I would challenge myself to just walk around a bit more each day (or couple of days) -- I'm talking just very short walks like to the bathroom, to the kitchen to get a drink, to the window to look out, to the front door, etc. Then I started on the recumbent exercise bike -- with a twist. I couldn't even sit on the bike for very long without feeling awful, so I laid down in front of the bike and peddled it from that position -- you have to pedal backwards, but the resistance settings still work. Eventually, I started mixing the supine pedaling with some sitting up pedaling. Recovering from a flare-up is emotionally and physically hard. It's so tricky to judge that fine line between doing enough to make progress, and avoiding setbacks by not overdoing it. You too have an important role in this whole process. It will make a big difference for your daughter to have some reassurance and cheerleading from a loved one. I'll be praying for you both.
  15. Just might want to be careful. I think onions lower blood pressure (by thinning the blood?).
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