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MeganMN

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  1. Does anyone have trouble with Propranolol causing hypoglycemia? I seem to be having a problem with this and did not know if it was common or not. Megan
  2. @Macca thanks for the reply! I agree with the evaluation that my MCAS-type symptoms came first. I will be curious to see what happens. Hopefully the Immunologist can have some input that is helpful.
  3. Are there many others out there who are looking at a dual-diagnosis with POTS and also Mast Cell Dysfunction? The doctors still are not sure what to do with me- I am going back to Mayo in the Spring for a tilt-table test. I have been also getting worked up for Carcinoid Syndrome VS MCAS. DO any of you get facial edema with the flushing? I am still wondering if it is all related to the Dysautonomia.
  4. @Stark this is what I have felt all along, but everyone got sidetracked when some of my labs came back positive for an overproduction of serotonin. My Plasma Histamine was high, but Tryptase always normal. We will see what the Allergist has to say. It would be nice to at least get a Tryptase drawn after a reaction. From the extensive research I have done, though, there are so many mediators responsible and it could be something other than Trpytase in my case- like Histamine or Serotonin, or others. We shall see. Last night I had my first in a long time middle of the night tachycardia epi
  5. @Sushi- Oh wow! Thanks so much for sharing! I will definitely look into that more!!!
  6. Well, here I am, over a year later and many, many diagnostic dollars....... My Story: I began having SEVERE flushing episodes in 2004 after a series of blood transfusions. The flushing was dry, preceded by a feeling of heat, and ended in my chest, neck, and face looking like a lobster. I would get tight in my chest, a little bit of a wheeze, sometimes dizzy, tachycardic, and feel really spaced out. It happened with red wine, then white wine, then sometimes other alcohol, spicy food, sometimes tomato based food, sometimes chocolate. Now it happens when I get too hot, in the showe
  7. @Sushi thanks! The Electrophysiologist that I saw last year was not impressed or impressive. He wanted me to try Corlanor if the Propranolol did not help. The Propranolol made it MUCH worse at a low dose, and at high dose made me Brady/Low BP. The Corlanor is expensive! Ick. The Cardiologist that I am seeing in a couple of weeks is supposed to be really, really good, so we will see! Thanks so much for the ideas, though! Information is a good thing! Megan
  8. I have used GABA- not for sleep, but for anxiety. If you decide to use it, look at the manufacturer as they are not controlled by FDA. Swansons Vitamins is a good US based company, in my experience.
  9. @Sushi thanks for the reply! I have at times Atrial Bigeminy and some Atrial tachycardia, all 'normal' according to docs. Just had my yearly Echo and will see Cardiology in a few weeks, but am expecting more of the same- nothing! Finally got a tilt table scheduled at Mayo in the Spring- will be curious to see how that goes.
  10. Hello All, We spent a week at Mayo Clinic and I would love to say that we are closer to answers, but are probably not! I do, finally, have a future appointment for a Tilt Table Test, so that is kind of exciting. The Pulmonologist that I saw was a little bit dismayed that I had been so far down the POTS road without a formal evaluation by a Neurology Specialty. I continue to have irregular orthostatic tachycardia, it is unpredictable and erratic, which is better than constant! I am still being worked up for other things (mild Hyperparathyroid and Carcinoid Syndrome) and will see ho
  11. Thanks for this amazing thread, @bombsh3ll I hope that you can finally get the help that you need. I have thought about this thread a bunch. We have actually finally determined that I have a co-existing condition (Carcinoid Syndrome) but they have now actually decided that my POTS began as a result of a concussion! I had a vasovagal event at work and hit the deck, slamming my head into the ground and ended up with a concussion, have had POTS ever since. I wonder if I had a leak based on the postural headache and other symptoms that resolved as soon as I lay flat. The headaches have gone
  12. Thanks! @POTSius and @Stark It was the Plasma Histamine that I had drawn, and that is the level that came back as High. The Tryptase levels have all been normal. I am just really not sure where to GO with all of this! They have been testing and testing me for a possible Carcinoid Syndrome and looking for a NeuroEndocrine TUmor (which is the main differential diagnosis that mimics mast cell disease). There is a doctor at the University of Iowa who is willing to see me and thinks I have an undetected Carcinoid, but another NeuroEndocrine Specialist that I have worked with thinks i
  13. Hello all, I am still having more and more and more testing and am scheduled to go to Mayo-Rochester in October. I have had recent testing still trying to tease out MCAS/Mast Cell Disease versus some kind of Carcinoid/NET. I am looking for your experiences with MCAS/Mast Cell lab results. I have had two negative serum tryptase levels now (2.2 and 1.8) and a negative urine Methyl-Histamine, negative Serum Prostaglandin D2 levels. Does anyone ever get a urine Tryptase level? The only lab that came back abnormal was an elevated Serum Histamine level (1.05). Can an elevated Histamine
  14. Hello gang! I have been off the radar for a bit but feel like many of you are in my circle of support. I am continuing to get worked up for both Carcinoid Syndrome, Neuro endocrine tumor, and either normal calcium hyperparathyroid or secondary hyperparathyroid from low Vitamin D. I am waiting for an appointment at Mayo with an Endocrinologist and have been going to the U of MN for endocrinology. I do not have much tachycardia randomly these days, it coincides more with other episodes of flushing. I am less tired with iron and Vitamin D but continue to struggle. I think of all of you often a
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