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MeganMN

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About 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 episode too, hoping the POTS symptoms do not come back after having been gone for a bit.
  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 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.......
  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 how it all plays in to the Tachycardia, if at all. Hang in there, all! Megan
  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 away, the nausea is better, the fatigue and brain fog are better. The tachycardia is now intermittent and seems to happen less and less. It is crazy though, how it has been almost a year and no one really put all that together. When I do the research, it is CLEAR that post-concussion syndrome can result in POTs and there is a clear, proven link between the two, yet it is something that no one mentioned until I saw an Osteopathic doctor who said that maybe the POTS did not cause the fainting, but the fainting caused the POTS. I never had any of this before I passed out and hit my head! Thanks so much for the update and the info! Meg
  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 it is NOT a Carcinoid/NET, but is more likely to be MAST Cell Disease, and I have no idea what Mayo will do. I really cannot afford to run around to a bunch of different hospitals as this has already been dragging out for a year with thousands of dollars of testing. I have been self-treating with H1/H2 blockers and Quercitin. I am now having to take inhaled steroids because of an unrelenting cough/wheeze with new asthma diagnosis. I began searching the Mast Cell Pathway on my own because no one seems to know what to do with me. I have considered going to see the Allergist in the area that deals with Mast Cell Disease, but am getting tired of specialists who just scratch their heads and take shots in the dark! Is it a Carcinoid/NET? Maybe. Is is Mast Cell Activation and POTS? Maybe. But I do not want to keep taking meds and not knowing what we are treating! Anyway, thanks to everyone for the replies. Meg
  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 alone have any meaning for diagnosis without the tryptase? Thanks. Megan
  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 and hope everyone is chin up!
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