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abetterjulie's Achievements


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  1. For those interested, the physician needs to fill out this form: https://www.northera.com/Content/pdf/northera-treatment-form.pdf to get a free trial. The cost with our insurance would have been $70, which isn't bad, but I'm hearing that it can be expensive depending on insurance coverage. It has to come from a specialty pharmacy that ships it directly to your house. I am waiting for the paperwork to clear to start my trial. I currently take Florinef, which gives me about four solid hours of functioning before I start to forget things, get lost, have abdominal pain, etc. I worry about the long term side effects of using the Florinef, although I can't seem to find anything that outlines the exact risk. I have heard that Addison's disease is a possibility. I'm hoping the Northera proves safe and effective. I'm reading that there was a concern that the long term effectiveness of Northera can wear off. Has anyone taking it experienced that problem yet?
  2. This is so exciting for me (and us)! I just talked with the nephrologist yesterday, and he was saying he had heard of this medicine, but wasn't sure when it would be available or what the cost would be. It would be great for me to take, so I'm going to call the pharmacy and ask about its availability.
  3. We are having the same problem right now. From the AllergyUK site, it states at the bottom that the information is conflicting because everyone has a different tolerance. They suggest slowly re-introducing foods to keep the diet from being too restrictive. We are working off of a list we printed out that seemed comprehensive and matched up with most sites. Right now, I am eating a lot of the same foods over and over, and it is depressing. On the bright side, it has alleviated my GI symptoms and it doesn't take much to tell me that something is a trigger. The real trick is being careful to only try one new thing at a time. I am eating sweet potatoes, coconut milk and flour, brussel sprouts, chickpeas, kale, carrots with tops (I don't eat those) to be sure they aren't old or monocultured, eggs, almond milk, butter, and nuts, butter from the frig (the kind on the counter makes me sick), chicken, beef, and pork as soon as they are cooked (no leftovers which makes it hard for me on low energy days!), sugar, peanut butter, greenish bananas, apples, pears, and grapefruit. My husband make me biscuits using coconut and almond flour from a paleo recipe he had. I can give you that if you like. I also make a chickpea pancake from half a can of chickpeas, mashed with one egg. Just mix them up well and cook. We bought a juicer to go with our VItaMix to give me some more options. You'll notice there are no grains on my list, and while meats are on the list, I haven't been eating them very much. Hope that helps a bit. I am seeing an allergist next week and I really hope they know their stuff and can help!
  4. Registered Nurse for 12 years in critical care. Worked as NA before that. Worked as Medical Secretary before that. Worked as Waitress, in-home caregiver, and library assistant, and housekeeper when I was younger.
  5. Hi, BP was in 70's for a bit. Now it is mostly in the 80's with an occasional low 90. Drank almost 2L of Propel water. Still very sluggish and exhausted. Can't really sit up. Dizzy and feel awful getting up to pee. At what point do you choose to go to get IV fluids? Is there a way to just bypass the ER?
  6. Hi, I started on the path to my POTS diagnosis with a trip to the cardiologist. I was having shortness of breath with minimal activity (like bathing) and showed EKG changes at the primary doc. My echo was abnormal with low ejection fraction and global hypokinesis of the left ventricle. I had a fancy cardiac MRI done because the cardiologist originally thought I had some weird rare degenerative cardiomyopathy. I started to have other symptoms of POTS and ended up never really following up the heart angle. I brought this up today with Dr. Khurana. He reviewed the echo results and became concerned. He said that my echo was indicative of takotsubo cardiomyopathy, which can result from surges of adrenaline. (his words, not mine) From my reading, it looks like it is typically a result of ONE incident of stress (like a car accident or death of spouse), not a repeated stressor as we would have from dysautonomia. It also seems to resolve on its own? But that is when the cells aren't being repeatedly "stunned" by the adrenaline surges. I can't seem to find any information specific to takotsubo and POTS. Does anyone know of this or have links or articles? I am not too worried, since I have been sitting on it for over a year without anyone catching the need for follow-up, but I am curious. I do get chest pain when I over-exert, and continue to have terrible shortness of breath with exertion. Thanks! Julie
  7. Agreed. That was why I wanted to see where we were in the whole scheme of things. From the responses, we look pretty good!
  8. I wish I had answers, but I don't. Heat is a huge factor for me. Even if I stay in the AC, if it is hot out, I am still worse. Also, I would think that the metabolic energy use by a child when growing would be a factor, also. That is just a guess, though. I would be sure he is getting enough calories for his exercise/energy level. I would also definitely bring it up with your cardiologist. I wish you the best of luck.
  9. Sandy, that is just horrible that you had to wait that long and go through those hoops to get a TTT! Glad you finally got answers and help.
  10. It did not help for me. I also think that a lot of docs are being careless in telling their patients to take in more salt without being specific with amounts. I made myself very sick by taking in too much when I first got a diagnosis. I think it probably only helps if the cause is related to hypovolemic states, but I could be wrong about that.
  11. I have been gluten free since forever, lol. Our biggest problem used to be food on the go. Since I have been sick, that isn't really as much of an issue. If you are interested in recipes and things, I can help you offlist if you want. There are lots of online resources, and your library will have gf cookbooks. My biggest problem now is being too sick to cook. So, we end up eating way more processed gf foods than I prefer, which can be unhealthy.
  12. My POTS is a form of neuropathy (disease of the nerves) of the autonomic side of the nervous system (automatically regulated nervous system: things you don't control like heart rate, digestion, breathing). I still don't know the cause of mine, and am not sure I ever will.
  13. Funny, I have found that heat helps me most. I have one of those buckwheat hull cloth bags you heat in the microwave. Of course, the problem is when it is larger areas! I need to get a body-sized one, lol.
  14. I didn't know that teeth issues were part of EDS. I had huge amounts of dental work as a child. It has left me terrified of going to the dentist, even for my own kids. I also wondered why I was blood tested for heavy metals, since as was pointed out, they don't linger in the blood. Seems a waste of resources. Is there a way to test the tissue?
  15. Thanks, lol. Although, I realized "serious" could be subjective. I suppose I should have said serious enough to seek treatment...oh, well.
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