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sweetfeather

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About sweetfeather

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  1. I probably have HyperPots since the mast cell protocol has helped me a lot. But I'm not typical since I mostly have low blood pressures. Before trying the mast cell protocol, I had recurrent episodes of feeling very faint, nauseous, with a sense of doom and with average blood pressures (which were high BP's for me) and instead of my face flushing I'd have a heat wave feeling go up my back and crest over my shoulder but my face and extremities were very pale and clammy. I thought these were just POTS episodes but it looks now like they were mast cell degranulation/anaphalactoid reactions. I did
  2. Jen, that is so scary! I'm sorry this is happening to you. I agree with Dizzy about going to the ER and getting it thoroughly checked out asap! Do you see a neurologist for your POTS? Have you had an MRI recently? Have you had a lying/standing plasma catecholamine test? Tremors can be a symptom of hyperPOTS. I had some right leg tremors during episodes which likely were mast cell degranulation episodes but I didn't have them as often or as severe as you. I hope your docs figure out what is going on quickly for you! Some info which might interest you: http://www.medscape.com/viewarticle/522421_
  3. I went to the ER very sick and feeling like I was going to die. It was my second ER visit in two days. My son told me, "Mom, he thinks you're crazy." The doc wanted to send me home with compression socks. I stood arguing with him that I was too sick to drive two hours one way home. As I stood arguing with him he watched my feet turn bright purple and when he noticed how high my heart rate had skyrocketed he told me to lie down. When I did he saw my right leg tremors! He rushed off to consult with a cardiologist and came back and said he was admitting me. A tilt-table confirmed... POTS. But on
  4. I have cold feet most of the time and when I have a POTS episode my lower calves and ankles are very cold also. I just got some Geisswein Bruck Lodge (Austrian wool) boots that are wool, washable, have a very comfortable removable insole (almost as comfy as Danskos) and rubber soles for traction. They are probably itdhy without socks but I wear them with socks and with my pants legs tucked in. I got mine on sale at 6pmdotcom which was cheaper than Zappos. They are gray with a drawstring at the top and tassels. I LOVE them.
  5. I thought I'd share with all of you that my 13 year old son was diagnosed in December with POTS. I don't think he'd have been diagnosed so young, if at all, if I hadn't been diagnosed with POTS two years ago. You see, I had been diagnosed about five or six years ago with inattentive ADHD. I saw similar inattentive symptoms in my son and his teachers alerted me his inattention was impacting his grades. His doctor diagnosed him with ADHD-inattentive when he was ten after his teachers and I completed a survey of his behavior and he did a blind trial of ritalin with two weeks of ritalin and two wi
  6. Ashelton80, I'm so sorry to hear you are miserable and I hope your doctors figure out what is going on with you soon! Warning: long, way too long... I'll tell you my story...I've had many chemical sensitivities, medicine allergies, allergy-like symptoms, food intolerances, digestive and intestinal problems, rashes, bruising, and many illnesses all my life. My symptoms "wax and wane and are never the same" I've tried to get answers from IGG and IGE food allergy testing, a celiac test, elimination diets, keeping a food diary... I could never get answers why I was so sick and tired all the time.
  7. Here's my story. I'm sorry it is so long! I had responded very unfavorably to the beta blockers and midodrine my cardiologist put me on. My metanephrines went so high on those meds that my doc tested me for a pheo (adrenal tumor) which they never found but scanned me with sonos and mri's...chest to toe then neck to head. So many tests! So much money! I went to my primary, an endocrinologist, a vascular surgeon... nobody could figure it out. I finally got in to see a r...

  8. I always lost a lot of hair about three months after my pregnancies which I've heard is quite common. I've read that postpartum hair loss might be from dropping Estrogen levels. But, I just learned, DAO drops drastically after pregnancy... I wonder if that might also be a factor in postpartum hair loss? And if DAO plays a part in postpartum hairloss, does it also play a role in other hair loss including alopecia? http://www.ajcn.org/content/85/5/1185.full "In pregnancy, DAO is produced at very high concentrations by the placenta (119, 120), and its concentration may become 500 times that when
  9. Issie, please let me know if you find the kind of magnesium they recommend! I wish that article would have gone into more detail about Epsom Salts. If anyone finds more info on the type of magnesium in Epsom Salts, please share the link. If I'm feeling "toxic" an Epsom Salt bath makes me feel so much better.
  10. Thanks so much for alerting me to this, Issie! I sometimes take a magnesium supplement called Natural Calm to help me sleep. I also read somewhere magnesium might help those with EDS. This product says it has "Ionic magnesium citrate" which they claim is a proprietary blend of citric acid and magnesium carbonate which is supposedly highly absorbable. Is this a type the article says may cause depression in some people? I don't tolerate milk and it makes me really sleepy and lethargic but I assumed it was the lactose because I can eat SCD 24 hour yogurt which has calcium but is low lactose. But
  11. I was tested for celiac. It was negative. When i couldn't stand the pain, bloating, and brain fog any longer I tried the SCD diet as outlined in "Breaking the Vicious Cycle" by Elaine Gottschall. See pecanbreaddot com and breakingtheviciouscycledotinfo and read the book reviews on Amazon. It was miraculous. Within four days my brain felt like a fog had lifted, my insane carb cravings vanished, and my pain and bloating stopped. I did feel like I had the flu the first couple of days.. they call that die-off. When I tweaked the SCD to the GAPS diet (long simmering bone broths, sauerkraut, probiot
  12. Benadryl raises DAO so it is an anti-histamine PLUS it increases the enzyme which helps break down histamine. Double duty! I personally save Benadryl for emergencies or an occasional flare in symptoms because I have many drug allergies and I don't want to increase my risk of developing an allergy to it by taking it every day. ************************ http://www.ajcn.org/.../85/5/1185.full "Most antihistamines have no influence on DAO activity, although inhibition of DAO by cimetidine (Tagamet) and dihydralazine and increased activity by diphenhydramine (Benadryl) have been observed." *********
  13. Issie, you're welcome. I don't think most doctors know much about Tagamet. It is an older antihistamine. My son was on it once because it was supposed to help with warts. I found out about Tagamet and DAO by researching histamine intolerance. My rheumi suggested trying different combos of antihistamines to see what worked best for me and I bought some Tagamet to try. Luckily I only took it a couple of times before finding it was on the avoid list for histamine intolerance. I'm sure it is a great drug for a lot of people and it might be right for people reading here too but I thought I should w
  14. Hi Potluck, When I first got my really bad POTS symptoms, my cardiologist put me on Midodrine and a beta blocker. I just kept feeling worse with episodes of extreme anxiety. My doctor checked my metanephrines and they were over `10 times normal. She was sure that meant I had a pheo. So I had sonograms and MRI's one after the other until they had done my entire body except my head/neck. She consulted via phone with a pheo specialist who thought it sounded like it was in my carotid artery because of my symptoms and the previous negative test results everywhere else. I think the medical literatur
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