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Trying

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  1. 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?
  2. Trying

    New to POTS and new mom

    And double-check with your doctor too. Hope you have a beautiful day with your little ones!
  3. Trying

    New to POTS and new mom

    @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.
  4. 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?
  5. 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?
  6. 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.
  7. Thank you all, I think the drop in blood pressure is why her cardiologist said it was not POTS. She tried fludrocortisone for a couple weeks with no effect and got off because of upcoming visit to endo. But do you know if they only check for Addisons, because she has not lost any weight and/or had nausea or vomiting. Thank you for all your ideas, the mitochondria and a 2nd opinion, it is so difficult to find someone, we live in eastern NC, and her PCP and cardiologist will not refer her to Vanderbilt. Any suggestions on that? Also, many speak about "flares" or good days and bad days, all our daughter's days are the same, no energy, in the chair mostly. Is this stable "no energy" and chairbound state normal for orthostatic hypotension?
  8. Our daughter described "heavy leg" symptoms while very active and running over 10 years ago, and it has been a continuous symptom ever since. She is now mostly chairbound with no energy, and has to keep her feet up a lot. She is out of the chair max 45 minutes out of a day (walking around house, going to bathroom, bathing, fixing a lunch, and recumbent on easy for 3 minutes/5 times a day). She loaded salt/water, uses hose, midodrine (not much help, only when going upstairs does she notice slightly less leg weight). She said she has this "wall" that if she expends energy beyond that, then she has no energy the next day or 2. She does not have post-exertional malaise, never feels flu-ish or sick feeling or crashing after she expends too much, she just has no energy the next day or so. But she cannot even get her heart-rate up to do any exercise at this point; she is mostly just "moving" like on the bike. (Our daughter previously had tachycardia episodes and a hospital said it was POTS based on her getting up to use restroom and huge HR rise; however, cardiologist says not POTS now because of blood pressure decline on standing). Does anyone have this low of energy where they cannot function, and is it due to blood pooling/low blood pressure/low blood volume/orthostatic hypotension?
  9. Trying

    Florinef Flox

    Does florinef, since it contains fluorine, cause anyone to be FLOXED, like with the fluroquinolone antibiotics? A package leaflet shows "tendon rupture" for florinef, and that is one main symptom of being FLOXED. This drug seems to be so high risk; please respond with positives or negatives. Did it give you back energy? Daughter is starting .1mg; how long can she take (ie 2, 3 weeks?) before it suppresses her own adrenal/aldosterone production? Cardiologist prescribed for low blood pressure/orthostatic hypotension but measurement of aldosterone was not taken.
  10. I understand that florinef can cause a headache from h***. What is the best treatment, ie, it seems it would be due to the high fluid forcing the veins/arteries in the veins to stretch bigger, and regular headache medicines would perhaps be inadequate? I just want to know what to do if our daughter, who just started, gets one of these. Thank you.
  11. Trying

    Florinef

    Daughter 22yo dx with orthostatic hypotension and CFS. She does not pass out, but feels head pressure/malaise when she stands, and she has no energy. Currently taking midodrine and cardiologist also prescribed florinef .1mg a day, which she has not yet started. She is mostly chairbound, had to quit college. This started with heavy, deadweight legs about 10 years ago. Salt/water/hose has not improved her debilitating lack of energy. Has anyone taken florinef and did it help with OI or lack of energy and did it help with being able to walk/exercise/live again??? If she gets the headache from h***, what do you take to relieve, ie, it is due to too much vasodilation (from the retention of water/sodium), so usual headache meds will not help? How long are you on it before you must taper off if you experience a bad side effect? I have read that some who have done alright with it for several months can then experience horrible side effects, and I was wondering if you had to stop it immediately, your aldosterone be suppressed and you would be in a crisis situation, so if you had a horrible side effect, you would have to taper slowly while still suffering? How long is the taper?? Did florinef help anyone recover their energy who had CFS?
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