MeganMN

@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.

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.

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

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....

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?

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

@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.

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.

@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.

@Sushi- Oh wow! Thanks so much for sharing! I will definitely look into that more!!!

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.......

@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

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.

@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.

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

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

Sent PM, thank you!

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

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

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!

This is going to be a long post, but it is something that I feel like I need to say. Tonight we had a camp fire in the back yard. My seven year old brought me flowers. I played frisbee with my husband and laughed like I have not laughed all winter. My three year old sat on my lap while I braided flowers into her hair. My five year old rolled down the hill in a toy shopping cart while we all watched with happy hearts. This is what life is. This is what I want to be engulfed by. Instead, the pause button hit last November when my mom died the same day that my body began to fall apart. First I was diagnosed with inappropriate tachycardia, thn with possible carcinoid tumor, now Carcinoid syndrome, and a side of hyperparathyroidism. Doctor after doctor after test after test. Research and forums and Internet and so....many.....ologists..... Cardiologist, Neurologist, Oncologist, Endocrinologist, Gastroenterologist, Pulmonologist. What they all forgot about... The LifeOlogist. My life continued on. My kids keep growing and needing and loving and living. My husband keeps needing and loving and living and being by my side. My job, my family, my church, my friends. They kept moving and I suddenly stood VERY still. I became an expert on HIAA and Chromogranin and PTH and Calcium and NET and Gallium and anxiety and depression and fear.... But tonight, sitting by the fire, I realied that none of this defines me. It certainly limits me. It makes me tired. It makes me afraid. But it IS NOT me. I am a mother, a wife, a nurse, a friend, a reader, a gardner, a daughter, a sister, and I am alive and thankful to be! this IS what the doctors forget. They forget to tell us how to go on with some diagnosis that may not be fixed with a cast, or a surgery, or a pill. It may force us to accept a new normal. But it doesn't have to define us. For the first time since last November, my life continued to play with me in the frame, instead of watching from the sidelines while the scenes played on without me. These are the things I will talk about when I go to the doctor. Okay, my labs showed this or that, and you think this or that, but tell me how to keep LIVING and LOVING. That is what I care about doctor... So when you tell me you will see me again in 3 months or 6 months, or whatever, I will tell you to explain to me how to watch my life go by while the pause button is on. Or, better yet, you can put your head together with me, and help me figure out how to make the best of this crappy disease and LIVE.

Update...went to the University of Minnesota today for my visit with Endocrinology. She was super nice and super smart. Frustrating nonetheless though because of the time frame. She did confirm that she is officially diagnosing me with Carcinoid Syndrome and may end up treating me even though they cannot find the source. At this point, she thinks my parathyroid issues are related to the Vitamin D and wants to just recheck everything in two months. She basically said that there is a high probability of a carcinoid, and finding them can be pretty tough. She said that she is still on the fence about the parathyroid and will recheck labs today and again in two months. For now, we watch and wait, and I pretend that I am not running on empty!

@nik1980 yes- exactly what you said!! I have been getting more and more exhausted. Thankful for this group where I can whine un-judged!

thanks @bombsh3ll! Two more days until we go down to the University of Minnesota. Feeling exponentially worse since Vitamin D supplementation. I am getting a 24 hour urine calcium today and I suspect my serum calcium will be higher now. I have no idea what to expect. They will have to redo all the labs after my D comes up, I am sure. But really, I have no idea what to expect! this has all been so crazy. Will keep you posted!

Well, the saga continues. I see the NeuroEndocrine Specialist on May 21st and in the meantime, my Parathyroid Level came back a second time super high, but normal calcium, slightly low Vitamin D. Am adding Vitamin D Supplements. This is all just such a weird thing....