Lackadaisy_baby Posted January 28, 2012 Report Share Posted January 28, 2012 Hello everyone. New here. This past week, after almost 3 months of various neurological and cardiac symptoms (and several doctors diagnosing "anxiety") I was diagnosed with POTS and b12 deficiency w/out anemia during a hospital stay.I was given a tilt-table test, which my neurologist described as the "pregnancy test of POTS". My HR went up, but something was clearly a bit out of the ordinary. The electrophysiologist observing the test noted that while my HR in general had an upward trend, it would also have moments where it would instantly speed up for a few seconds (I think it hit 148 once) and then instantly drop back down. She actually had to call in another electro. for a second opinion, and after several minutes of debate, they seemed to conclude that everything is okay. I also had an echocardiogram and brain MRI, both of which came back fine.Now as far as I know, these brief changes are new. Before my hospital stay I'd had 2 holters, lots of EKGs, troponin and d-dimer checks, thyroid checks, a stress test, a lung CT, an initial echocardiogram, and CT Angiography, all of which came back normal.I want to believe this is POTS or b12-related, but from what I've read, POTS doesn't involve instant HR changes like mine. Also, there are days where my resting HR will still be pretty high (at least 100). I could see that being normal if I had orthostatic intolerance or hypovolvemia, but I don't. There's also days where my HR will stay pretty normal.My symptoms have included:- lightheaded-ness (feels like my head's been dunked in ice and filled with air) / mild dizziness- cough- all sorts of pain- chest pain: Mild to moderate, usually around my heart/left breast, but has happened on the right too. Usually feels like a blunt stab or cramp, but has felt like a slight burn. Has gotten worse lately. Not related to gastro. issues, as far as I know.- pain in my right rib cage that sometimes radiates to my shoulder- pain in my arms and legs- muscle tingles and spasms- mild gastrointestinal issues- headaches- small floating shadow in vision- night sweats- nausea after eating- HR: Sometimes normal at rest, sometimes mildly tachy. Will raise to at least 120's after standing for anywhere from 5-20 mins. Have woken up with racing heart.For now, I'm on 2000mcg b12 supplements and something called Pyridostigmine. It's too soon to know if the Pyrido. is doing anything. My neuro. has ordered blood work surrounding my b12 issue and I'm scheduled for a follow up with the electro. in February.I'd like to know if anyone's had an experience like mine as far as their HR goes. I know that I technically have POTS, and some of my symptoms fit, but I'm honestly not sure. Thank you! Quote Link to comment Share on other sites More sharing options...
kclynn Posted January 28, 2012 Report Share Posted January 28, 2012 Diagnosing and treating POTS/Dysautonomia is definately a process. Sounds like you have a pretty good team who is interested in finding the right treatment and finding possible causes. Keep a symptom diary (maybe you already do). It is possible to have POTS and other concurrent dysyautonomia or conditions.You are right, the medication he put you on can take a few weeks to show results. Quote Link to comment Share on other sites More sharing options...
lillybits Posted January 28, 2012 Report Share Posted January 28, 2012 well hello and welcome! it took a few years and monthly trips to the mayoclinic in rochester( usually a week or two at a time there) to figure out things for me. there are new symptoms that still pop up and seem totally unrelated all the time. I went from having 14 didderent diagnoses to 7 because fo the two dysautonomias I have. But you are definantly in the right place! Everyone on here is very supportive and will help you try and sort things out.have they tested your d levels?? Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 28, 2012 Report Share Posted January 28, 2012 Can you expand for me on your symptoms that occur during the night? Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted January 28, 2012 Report Share Posted January 28, 2012 I'm not a doctor but from Pt to Pt it sounds like many POTS symptoms to me. You may already know this but clinically it is the presentation of an Orthostatic HR increase of 30 bpm and symptoms for 6mos.In POTS the sympathetic nervous system does not function properly so upon standing/ or sometimes even sitting the blood vessels, especially in the splancnic bed (gut) and lower extremities do not vaso constrict the way they are supposed to. Therefore the systemic blood flow is reduced and the HR increases trying to compensate. This of course creates a myriad of problems known as the "S" of POTS-Syndrome. The syndrome includes many symptoms including migraines, sleep disorder, anxiety/depression, irritable bowel syndrome IBS, tear duct dysfunction, salivary gland dysfunction, temperature disregulation, tinnitus, hyper mobility joint disorders, etc. POTS patients may present with all or any combo of these but 99.9% of all POTS patients present with overwhelming fatigue.I too was told I had anxiety and almost everyone here can relate to the difficulty of diagnosis. Although I have both POTS and NMS I have many symptoms that are not fully explained by these two dysautonomias so I'm working with docs to both try and treat what we know and further diagnose the unexplained symptoms. I agree with Lilly, you are in the right place. Welcome. Quote Link to comment Share on other sites More sharing options...
Lackadaisy_baby Posted January 28, 2012 Author Report Share Posted January 28, 2012 Thanks for the welcome. As far as my blood work, they checked my b12 and folate, did an ANA test for lupus, and checked for the Epstein-barr virus. Nothing else that I know of.My symptoms at night are incredibly frustrating. The sweating ranges from very slight to my whole shirt being damp, and I wake up 3-6 times a night. I haven't slept more than 3 hours in a row in weeks. There are times when I wake up that I'll have this odd sensation... Not actually out of breath, but like my breathing's been switched over to manual. Rarely, I'll wake up with my heart will be pounding/racing and it'll stay that way for a few minutes (not connected to a nightmare or anything).I used to get these odd headaches that seemed to come from the pressure of my head on my pillow, and because sleeping on my stomach just made me aware of my HR, it was a choice between pain and palpitations. Thankfully, those headaches have stopped.For a while, I used to look forward to the evening because it was the only time I felt normal. My resting HR calmed to the 70s, which meant I could walk around the house a bit without worrying too much about tachycardia. Now tachy. at rest is slowly getting more and more common. =\ Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 29, 2012 Report Share Posted January 29, 2012 Ssri took away my night symptoms. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted January 29, 2012 Report Share Posted January 29, 2012 Ssri took away my night symptoms.I'm on an SNRI yet I still get similar night probs like Ldaisy. Any chance you have experienced both SNRI and SSRI? If so, what differences, if any, did you experience? Quote Link to comment Share on other sites More sharing options...
abbyw Posted January 29, 2012 Report Share Posted January 29, 2012 Interesting, the SSRI is waht GAVE me night sweats and poor sleep. Quote Link to comment Share on other sites More sharing options...
corina Posted January 29, 2012 Report Share Posted January 29, 2012 Hi Lackadaisy-baby, welcome to the forum!I have the drops in hr too. My cardio explained me that when there isn't enough blood for the heart to pump around the heart gets into "protection mode" which makes the rate drop. I know it happens when I'm walking/exercizing (as I'm monitored while doing that) but I'm sure it can/does happen any time when I'm in an upright position. Well, at least my heart takes proper care of itself Quote Link to comment Share on other sites More sharing options...
Lackadaisy_baby Posted January 29, 2012 Author Report Share Posted January 29, 2012 I might look into SSRI. At this point I'll try almost anything to get a full night's sleep.My cardio explained me that when there isn't enough blood for the heart to pump around the heart gets into "protection mode" which makes the rate drop.That makes sense. The only mystery would be what makes my HR instantly jump up in the first place. The electro. thought it looked like it may be a form of PSVT, but if it is, it's only lasting 5-10 beats at most. Definitely gonna ask about the "protection mode" concept, though. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 29, 2012 Report Share Posted January 29, 2012 The sudden increases in heart rate happen to me as well. Especially when I'm exercising but it also has happened when I lay down at night to go to sleep. My doc at mayo says it is adrenaline rushes mixed with our bodies inability to regulate heart rate properly. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted February 14, 2012 Report Share Posted February 14, 2012 Dinet.org list around 67 possible symptoms for POTS http://dinet.org/symptoms.htm I don't know of anyone who has all 67 lol I personally have around 16. When you get put into a subclass like hyperPOTS, NeuroPOTS, etc.. the symptoms go down to maybe 50 different. Our autonomic nervous systems is involved in all of our organs and I think we all experience the dysfunction of our ANS differently, maybe because of way POTS was triggered in us. Irregular heart beats or arrhythmias are fairly common and list on the link as a symptom.Hope you start feeling better soon, can you update us if any POTS meds are working for you? Quote Link to comment Share on other sites More sharing options...
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