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MeganMN

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  1. @MTRJ75 Thank you- I will have to do some more research- I did not have Sinus Tach, it is some other misfiring node in the Atria- not sinus. They would not be doing ablation on the Sinus Node, but on the irritable focus elsewhere. Thank you so much for the info! I will grill the Cardiologist a little bit more. I had many, many episodes of Atrial Tachycardia.
  2. I just had this same thing start about a month ago, wore a monitor for 7 days and ended up having 260 separate episodes of SVT for 5-20 beats. Cardiologist said that it is not dangerous, but may be contributing to my symptoms of dizziness, chest pressure, etc. He recommended an ablation. Why are ablations risky for people with POTS? I have non-tilt table diagnosed POTS, but the Cardiologist is wondering if it is all related to the SVT and ablation might resolve things. Curious. Interesting to hear other people with similar stuff.
  3. I would need more info to answer this question! How old are you? Do you have any other history of Congestive Heart Failure or other Cardiac History? Any recent illness? Send me a PM if you don't want to post all that. I am certainly not a doctor, but an ER Nurse- can tell you what I know! Megan
  4. Wow- I get similar feelings. Mine almost feels like electricity running through me- like a 'buzzing' or vibration. I get it sometimes during the day, but definitely at night- sometimes it keeps me from sleeping. I, too, wake up in the middle of the night- at 3 in the morning, with a start- heart racing, trembly, then heartburn, sometimes diarrhea (sorry, too much info). When I wake up, the first thing I notice is tachycardia. The buzzing is really distracting. Such a mystery. Would love to know what it is....
  5. I seem to have a very diurnal component to my symptoms. I usually have tachycardia and palpitations begin in the early evening, worsen throughout the night, often waking up with severe tachycardia/anxiety, etc., then symptoms subside throughout the morning and day, returning again in the evening. My sleep is terrible, I am tired all day, have no energy, muscle fatigue, etc. My symptoms also come and go in cycles, on for a few months, off for a few months. The current round seems particularly bad. I had a friend mention cortisol. My cortisol levels were pretty wacky in the past and I wondered if any of you have done saliva testing or found any correlation with cortisol levels and symptoms?
  6. 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
  7. @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.
  8. 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.
  9. @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 episode too, hoping the POTS symptoms do not come back after having been gone for a bit.
  10. @Sushi- Oh wow! Thanks so much for sharing! I will definitely look into that more!!!
  11. 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 shower, when I am cleaning, if I am concentrating too hard, if I am sad, mad, embarrassed, upset, frustrated, etc. I also get hives sometimes from friction, heat, exercise. I had an Allergist that suspected Mast Cell Activation. Then in 2012 I had a severe reaction to a prednisone taper for poison ivy that caused me to have major orthostatic tachycardia, palpitations, syncope, dizziness, headaches, etc. Those symptoms mostly resolved. In 2018, the symptoms returned and I have struggled with intermittent orthostatic tachycardia, dizziness, headaches, nausea, etc. It is always worse in the early morning and late evening. I still have the flushing. I have had several tests come back positive that were suggestive of a Neuroendocrine Tumor, so I went to Mayo for a full evaluation by several specialists. They initially agreed with the potential diagnosis of a NeuroENdocrine TUmor but were puzzled that no tumor could be found. He has since become uncertain that I have a tumor and is wondering if there is some other disease/disorder at work. We are heading back in the Spring for a special Gallium PET/MRI, labs, a consult with a CardioThoracic surgeon to evaluate a calcified mass in my chest, and a Tilt-Table test. I also have an appointment with an Allergist/Immunologist to see if this could be Mast Cell Activation. all the doctors seem completely puzzled. The symptoms are consistent with a NeuroEndocrine Tumor. They are also consistent with MCAS, but none of the labs make sense. Sometimes they point to one. Sometimes to the other. I feel like there has to be a way to differentiate at some point. No one seems to have a clue. Hopefully the Tilt Table will be helpful. Hopefully I can get a post-flushing Tryptase level drawn. Hopefully the Immunologist will have some answers. Hopefully the CardioThoracic surgeon can figure out what the mass is. Hopefully the MRI will shed some light on things. Lots of money gone....Lots of time gone by...... Lots of hope..........Not a lot of answers.......
  12. @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
  13. 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.
  14. @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.
  15. 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 how it all plays in to the Tachycardia, if at all. Hang in there, all! Megan
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