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  1. Her brain burning symptom did not start until she laid back down in bed. Does the over vasoconstriction cause too high blood pressure in your brain? Her tachycardia started after the brain burning symptom, so it started AFTER she was lying down. She is not anxious because she is glad to have the tachycardia episode because it relieves the brain burning symptom which feels far worse than the tachycardia. Is that same with you, does brain burning stop when tachycardia starts?
  2. When going from 1mg 2x/day of fludro to 1mg per day, how did you taper down?

  3. Is there a test, or how does one determine if leg veins are not constricting enough to maintain good circulation (or how to know if they are over-constricting)?
  4. Our daughter is taking .1mg of fludrocortisone in the morning and .1mg (half) of the .2 tablet desmopressin at night. She had negative test for DI several years ago. Without the desmo, she was using restroom 3 or 4 times a night, now 2 times since she started desmo a few months ago. She goes around 9 before falling asleep and then around 4am. I can't say the combo works for her because she had a tachycardia episode recently and has not had any increase of energy.
  5. Our adult daughter got up around 4am to use restroom, felt malaise, returned to bed, felt her brain burning, then tachycardia. The tachycardia relieved the brain symptom. She went back to sleep while reclining on a huge pillow behind her. Can low (or high) blood pressure cause this brain burn and can you have supine tachycardia with POTS? With orthostatic hypotension?
  6. I thought that if you went to an in-network provider, all tests/procedures ordered by that in-network physician would be covered. But our new insurance said no, the CPT procedure code(s) for the tests must be medically necessary (according to their definition) for the CPT diagnostic code given by the doctor on the claim. Our daughter has been given different diagnoses by different doctors, ie, POTS, Orthostatic Hypotension, and CFS. The doctor that said she had Orthostatic Hypotension later said she no longer had it and was deconditioning and chronic fatigue. With any new doctor, we do not know what he will diagnose, which means we might have to pay full non-contracted price for any testing and it will not apply towards our deductible. The insurance company said that when you go to an office visit, you can ask the doctor for the diagnosis code and for any tests he wants ordered, you can ask for the procedure code. Then you can come home and call the insurance company and give them both diagnosis and procedure codes and then they will tell you if it is medically necessary or not. Then if they will cover it, you return to have the testing done a different day. That seems so cumbersome, and the insurance customer service said that people were doing that. Have you had to pay for autonomic testing because insurance would not cover those tests due to a CFS diagnosis or Orthostatic Hypotension? We do not know beforehand what doctor will diagnose, and it sounds like the tilt table can be failed even when a patient has POTS or OH.
  7. @momtoguiliana Where it says "in the absence of sustained orthostatic hypotension" doesn't that mean if you have hypotension with high heartrate, then that it is not considered POTS? I am so sorry for being confused, a cardiologist told us that with the hypotension, it was not POTS. She walked casually about 4 minutes and her BP was 122/83 with HR of 66. She stood afterwards for 3 more minutes and her BP went down 30systolic, 92/77 with HR of 127. She is taking fludro, midodrine, and desmopressin. Last year she was on beta blocker, propranolol first and then metaprolol, but it made her feel weird and worse, felt one time like a clunk or going down a step sensation in her chest. @Shepard1 She has been tested for potassium and is doing fine with that, but not neurologist. She has heaviness in her legs and also in her arms, when she raises them to do her hair for any length of time, but she says it is not her muscles. Thank you for neurologist idea, we saw one years ago that just tested her for seizures, even though no sign. @clb75 She can walk upstairs, but not but a few times each day, she says it is not her muscles. Thank you for your input, is there any other symptoms of your neuromuscular disease, is it myasthenia gravis?
  8. From what I have read, it cannot be pots if blood pressure drops. Daughter has had tachycardia sitting and while lying down. Orthostatic hypotension at a cardiologist office during stand. Tachycardia at hospital but no tilt. I am worried that we do not really know what it is, she has heavy legs that get heavier as she walks, and she has no energy, can only walk 5 minutes, if she does more, then she said she will have no energy to do that the next day. Her new cardiologist (we moved again) said having no energy (steady all the time, she does not have good or bad days, she is chairbound) and deadweight legs are not symptoms of Orthostatic Hypotension or POTS (yes, people get that temporarily, but not 24/7, same with dead legs). She was formerly so active, her dead legs (felt like concrete poured in them) was the first symptom while she was 12 years old and jogging a usual distance. After that, she kept having the leg symptoms and then at age 15, she had her first tachycardia episode while lying down. Cardiologist thought it was growth spurt, too much veins, too little blood, she added salt/water but dead legs continued as well as no energy. She tried to stay active and went on walks 3 or 4 times a week of about a mile, but over the years, her legs and her plummeting energy (as well as a 2nd episode of tachycardia) 4 years later, and then a few years more, and she was having a high resting HR consistently. Please help, does anyone have 24/7 no energy and deadweight legs and those symptoms stay the same, each and every day now? Also, I do not know that even though they said POTS, if it is POTS, or if it is orthostatic hypotension, but cardiologist in Wichita says that it does not explain her debilitating lack of energy/leg symptoms. She is currently taking midodrine 2.5 2x, desmopressin, fludrocortisone, and birth control pill. All have been taken long-term except fludro which has been just a month.
  9. If CBC shows normal sodium, does that mean aldosterone is being produced normally and there is no need for fludrocortisone? Our daughter's CBC sodium has been normal. She has taken fludrocortisone .1mg for 3 weeks and she has had no improvement in her debilitating lack of energy and her blood pressure declines 30 (SBP) upon standing 3 minutes. Her legs feel heavy all the time, but especially when she is standing and when she walks. Since her sodium levels have been normal, does that mean the orthostatic hypotension is caused by something other than lack of salt retention?
  10. Please anyone, is there any cardiologists who treat Orthostatic Intolerance or POTS/low blood pressure near Wichita, KS? How do you find a doctor who will understand low blood pressure (sometimes higher heartrate) on standing and prescribe Midodrine/Fludrocortisone etc? I looked on all the official lists, but there is no one listed for Kansas and came up empty with google searches. Will a regular cardiologist be unable to treat our daughter?
  11. And double-check with your doctor too. Hope you have a beautiful day with your little ones!
  12. @Potsiebarbie, hello, I do not want to cause you any unneeded concern, and I do not know if I remember correctly, but I thought that I read somewhere that if you are breastfeeding, then florinef should not be used because it could cause suppression of aldosterone in infant/toddler. You may want to double-check with the pharmacy, the online PDR or package inserts.
  13. Our daughter who is chairbound (only 22yo), extreme lack of energy, has had very low pulse pressure. That is the systolic blood pressure minus diastolic blood pressure, and take that number and divide by systolic. She has been as low as 18% (85/72), and internet says it should be no lower than 25%. Cardiologist seemed unconcerned, but when her pulse pressure is real low, she feels even worse. Anyone else have thoughts? Does it relate to low preload of the heart and therefore, not enough blood so it lowers stroke volume/cardiac output?
  14. If I understand correctly, when your blood volume is low but CBC test shows normal value for hematocrit, etc, you would be anemic (your RBCs would be proportionally low to the plasma and both would need replacement). Has anyone been tested for low blood volume (associated with blood pooling, low pressure, orthostatic hypotension, CFS, POTS)? Has anyone been prescribed Procrit or another RBC-building med along with fludrocortisone?
  15. Regarding ADH (anti-diuretic hormone), do endos only prescribe desmopressin for Diabetes Insipidus, or do they prescribe it for Orthostatic Hypotension? She uses the restroom 3/4 times at night (only 22yo), and it would help her energy/sleep if she did not. Retaining the water would also be helpful for her blood volume/blood pressure. I have read that some people with OI have taken desmopressin, but I do not know if most endos would do so.
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