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About kt42487

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  • Birthday 04/24/1987

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  1. ugh you mean I need to move more when I just want to go to bed?! Haha just kidding, I have been busy and therefore slacking off on exercise, you’re probably right. It’s so unfair how quickly the flare up can hit and how slow it is to pull out of it.
  2. Hi all, I’m not very active on the board diagnosed with POTS in 2012 which is secondary to Ehlers Danlos Syndrome (unspecified type). Anyways my POTS has always been managed with rest and increased fluids and electrolytes. I have occasional crashes where I just feel like garbage but they generally don’t last long. Well now I’m 6 weeks into all day chills in my legs and back, on and off tremors, nausea, heart burn, 100’s of PAC’s a day which I feel in my chest and neck, all over stinging itching, brain fog, and very bad pain in my neck and shoulders. PCP thinks it’s all POTS + anxiety/stress bu
  3. Boymommy3, the pressure experience you had sounds similar to mine, especially the bridge of the nose pressure, my glasses suddenly feel like they weight 20lbs. If it went away on its own for you that gives my hope! I am going crazy!!!! I put a call into my pcp trying to get her to refer me to neurology and had no such luck. I also have a lot of numbness and tingling in my face, between my shoulder blades and down my arms. I wonder if the head pressure and tingling are related?
  4. For the past month I have been getting these awful head and neck sensations. I have been have such a hard time explaining exactly what it feels like to a physician that they just palpate my neck and tell me they don't think there is anything wrong. I am wondering if anyone else out there has a similar experience, every afternoon around 2 or 3pm I get this whoosh of pressure that comes up my neck and goes into my head. The only way I can think to explain it is it feels like doing a hand stand under water while drunk. There is a pressure feeling both on the inside and outside of my head and my n
  5. Well unfortunately this change in hr definitely did not mean I was getting better. Now my heart rate rests at 50 and standing is 110-120. It seems to be worse. I am currently not on any meds. I have tried fludrocortisone, midodrine and a whole array of beta blockers. Nothing has helped so my cardiologist took me off everything to start at square one and see where I was at. Hopefully he will have some better solutions soon. Tanzanite I can't not believe a hr of 32bpm feels ok for you. That's amazing. The second my hr slips below 50bpm I get awful palpatations, skipped beats, and extra beats fol
  6. Has anyone experienced going from tachycardia to bradycardia? I have consistently had a resting hr of 90 and standing of 120-140. For the past 3 days my resting is 55 and standing is around 70-80. I would love to think that this means I am getting better, but there is a big problem; I feel worse. I am dizzy, numb, pins and needles and have a weird pull pressure like someone is trying to pull my head off of my neck. So a heart rate of 70 blood pressure of 100/65 and my cardiologist is telling me to "celebrate, you're normal again!" And yet I feel horrible, has anyone experienced this? What was
  7. Thanks for the info on compression garments. I may look into that. I seem to pool in my pelvic region. Pulse supine is 60-70, sitting 115, standing 120. So going from a laying down to sitting position is more difficult than going from sitting to standing and with chronic pelvic pain since age 15 and pelvic organ prolapse it makes sense that that would be were the blood is going. Aside from the general dizziness, lightheadedness, blackouts that seem common with all of POTS patients my most annoying POTS symptoms seem to be very neurological; numbness in the face, random locking of my joints, sh
  8. Thanks Katie (I'm a Katie too). I'm sorry you're not feeling very well. I'm in the same boat and feel like I am having a constant heart attack. I tried the EDS board and didn't get very far. The aches and pains that come with hypermobility pale in comparison to my POTS symptoms so I ended up on this board. If I could figure out how to manage the POTS I would be a functioning person again. It's such an uphill battle.
  9. Hi all, I'm a newbie. I was diagnosed with POTS last October after months of fighting a GAD diagnosis. After finally getting my internist and cardiologist to stop looking at me like an insane hypochondriac it is now believed that I my POTS is secondary to ehlers-danlos. I score a 7/9 on the beighton, have pelvic organ prolapse, mitral valve prolapse, early onset varicose veins (age 17), gorlin's sign (my tongue touches my nose), flat feet, tmjd, knee tendon repairs, reoccurring shoulder bursitis and subluxations of my hips, knees, ankles and shoulders, and now POTS. All of these joint problem
  10. Sorry to hear about your sons dysautonomia. I am currently a college student and in my last semester. I take online classes as well as hybrid classes (half online half in class). I find the classes that I have to attend to be very difficult and I end up very dizzy about 20 minutes into the class. What I have found that helps me is to notify my professors of my condition, this allows me to eat and drink in class (salt and water can sometime pull me out of a dizzy spell). I also sit close to the door so I can get up leave class, walk around get my blood circulating again and then I come back int
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