Bigskyfam Posted January 7, 2014 Report Share Posted January 7, 2014 Ok one moment and not the next. My new work norm. Went to fill in today for morning. Did great til my heart rate decided to spike to 140. Then it went downward. Full day tomorrow. Not sure what to do to prep. I don't have a subtype.. But I feel it to be norepinephrine surges. I work on my feet. I have a stool to sit on when needed... But when I need to sit I can't. At what point do I say maybe a sit down job is for me. I've only been back to work for 3 weeks. Diagnosed in October. Quote Link to comment Share on other sites More sharing options...
dkd Posted January 8, 2014 Report Share Posted January 8, 2014 Hmmm, not sure what to advise other than sit down when you need to. I work on my feet also and my beta blocker has made that more possible by keeping my heart rate down below 100 while standing. I believe that I probably have high norepi also, but I haven't been tested.Do you know what triggered the spike? Were you just on your feet too long, have your hands/arms up above your head? Anything you can try to avoid? Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 8, 2014 Author Report Share Posted January 8, 2014 I went to bathroom and was struggling with my compression gear. Today I've been at work spikes not over 120. Under 100 standing except of the stairs. Ugh 140s Quote Link to comment Share on other sites More sharing options...
IceLizard Posted January 8, 2014 Report Share Posted January 8, 2014 Better than I am doing. HR spiked to 132 standing in my office today and I am shaky. I am drinking more water and taking clonidine. I usually can't tolerate stairs at all. Best of luck managing everything! It can be tough to find what your limits are. Quote Link to comment Share on other sites More sharing options...
IceLizard Posted January 8, 2014 Report Share Posted January 8, 2014 Heart rate is lower 110-125 standing and I am no longer shaky, but I am too sedated to work I am experimenting with the dose right now, and I think I will go for a lower dose next time. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 9, 2014 Author Report Share Posted January 9, 2014 What's your history ice lizard? I made it thru the day. Hope I don't pay for it tomorrow Quote Link to comment Share on other sites More sharing options...
IceLizard Posted January 10, 2014 Report Share Posted January 10, 2014 My history in brief:Symptoms began in childhood around 4th grade.Worsened around age 12 and began having migraines.I had dysautonomia and tremor problems throughout high school, but no one had diagnosed me yet. One doctor mentioned thatmy catecholamines were too high. I thought it could be hypoglycemia since I had symptoms around eating, but that was disproven.Still, I really restricted my carbohydrate intake because starches and sugar make me feel worse.In 2004 I began college and had no appetite. Eating made me feel worse. In 2005 I had a what felt like the flu and my heart was just racing. I was hospitalized for a week, but no one could tell me what was wrong. They even tried to make me walk down the hall and when I collapsed told me I was faking!Then I went to an electrophysiologist (I am wheelchair bound at this point) and he stood me up and checked my heart rate. Then he said I had POTS, but that there was not much you could do about it.Later that year I would see other physicians and have tilt table tests done (result: POTS and fainting due to sudden drop in BP). I was fortunate enough to see Dr. Blair Grubb in Ohio who said I had POTS because of EDS III. I was put on a new medication that helped some : Cymbalta.During this time I was very ill and could not walk almost any distance. I had trouble eating anything. I became very thin and weak. But, I was able to improve with additional food, medication and exercises that I did mostly in bed. I was mostly bed or wheelchair-bound for almost a year, though.In 2006 I went back to college to get a degree in math. I had episodes of passing out and convulsing about 3 times a week on campus. I got to know the EMTs pretty well.Despite the challenges, I was able to graduate with honors from the mathematics program in 2010. (I had lots of W's on my transcript, though). Also I got married during this time.For 2 years I worked as a part time math tutor. I have never been able to work a full-time job for very long, but I could handle this. I worked partly from home (as an online tutor), and partly with clients. But, I did not make much money and I wanted a little more of a career, so I applied and entered a PhD program in Applied Mathematics. I am in this program now.I have an office and a soft mat to lay down on which I use when I am really not feeling well. Lately I have been showing signs of hyperadrenergic POTS (high blood pressure and high heart rate), so my doctor put me on Clonidine. I was having trouble finding the right dosage with the pill form and since it was short-acting I kept experiencing ups and downs.Yesterday my doc agreed to let me try the extended release version (a patch). I started it last night and I feel so much better today. A little sedated, but I am not shaky, my heart rate is still a little high, but not as bad, and I feel relaxed. It's too soon to tell, but I may have found something that really helps me feel normal!Sorry if this is too long...IceLizard Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 10, 2014 Author Report Share Posted January 10, 2014 I read every word. Wow. Seems like a long road and a heaping of determination. I'm in awe of all the life changes you've experienced while ill. Please keep us up to date Quote Link to comment Share on other sites More sharing options...
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