sideofsalt Posted July 24, 2014 Report Share Posted July 24, 2014 Hello All:I wanted to introduce myself. I am a mom of 1, and married to a wonderful man. I was working in public relations for a large corporation when I was diagnosed with POTS via TTT in 2012. The onset was sudden and dramatic, though I have never fainted. It gradually went from dramatic occasional episodes to daily mild symptoms (coat hanger pain, cold extremities, fatigue). My symptoms are most exacerbated by hormonal shifts, mostly during ovulation and during my menstrual cycle. I can feel almost no POTS symptoms between those times which leads me to feel that it’s really sex hormones that drives POTS (I haven't researched this fully I admit; it's more of my experience speaking here). I developed POTS 1 year after nursing my child and after a bad bronchitis that took 2 rounds of antibiotics to heal. What helps me most is midodrine and more recently, propranolol. Since 2012, it seems the hypotension is the most prevalent symptom if I had any at all. The exception has been this month when my endocrinologist switched me from Armour Thyroid to Synthroid and now tachycardia, adrenaline surges, and even wider blood pressure variances are up. I eat plenty of salt with every meal. Drink about 2L of water per day. I work with an excellent dietitian. Exercise (walking mostly) helps when I can do it but it's intermittent. I’ve learned to adapt and I couldn't do without my loving and supporting family. Fortunately there have been lots of good times when I feel like myself again. The strength I gain from this powers me through the hard times. If I can offer any insights to any newly diagnosed dysautonomic patients, it's that there may be a steep learning curve the first 6 months or so, but you will learn how to adapt and there will be times of stability and peace to look forward to. So you have to hang in there spiritually and learn to adapt physically. Do what you can, when you can but don't overdo it. My first summer was tough - I learned to stay out of the heat and made sure A/C was available wherever I needed it. I hydrated well but over-salted on a couple of occasions so I learned to salt throughout the day. I also learned that afternoons were my best times for productivity and errands. Thanks for reading and I look forward to chatting with you online! Quote Link to comment Share on other sites More sharing options...
writerlymom Posted July 24, 2014 Report Share Posted July 24, 2014 Nice to meet you and thank you for sharing your story. It sounds like you have been able to control things well. Very happy for you! Quote Link to comment Share on other sites More sharing options...
corina Posted July 25, 2014 Report Share Posted July 25, 2014 Hi sideofsalt, welcome to the forum! Quote Link to comment Share on other sites More sharing options...
blueskies Posted July 26, 2014 Report Share Posted July 26, 2014 Definitely, "WELCOME". It sounds like you quickly worked out a healthy approach to this. Well done.Blue Quote Link to comment Share on other sites More sharing options...
valiz Posted July 27, 2014 Report Share Posted July 27, 2014 Welcome! This forum has been a great help to me. It sounds like you have adapted very well and overall are doing well with dysautonomia. Quote Link to comment Share on other sites More sharing options...
Mermaid Posted July 28, 2014 Report Share Posted July 28, 2014 Thanks for sharing your experiences. Useful to read your insights and positive approach to symptoms. Welcome! Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 28, 2014 Report Share Posted July 28, 2014 Welcome to the forum. So glad you have found ways to get your POTS condition under control. Quote Link to comment Share on other sites More sharing options...
gjensen Posted July 28, 2014 Report Share Posted July 28, 2014 I like your user name. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted July 29, 2014 Report Share Posted July 29, 2014 Agree with all of the above Quote Link to comment Share on other sites More sharing options...
shan1212 Posted July 31, 2014 Report Share Posted July 31, 2014 Welcome! My story is very similar. Did your symptoms start one year after weaning your child, or immediately after weaning your child whom you nursed for a year? In my case it was the latter. As soon as I weaned her and got my period back, I started having weird episodes, which like yours, were mostly to due with "that time of the month" or after flying. When I became pregnant with my second, things got a lot worse, but at least now I know what I'm dealing with and have learned to manage it a lot better. Quote Link to comment Share on other sites More sharing options...
sideofsalt Posted December 17, 2014 Author Report Share Posted December 17, 2014 Welcome! My story is very similar. Did your symptoms start one year after weaning your child, or immediately after weaning your child whom you nursed for a year? In my case it was the latter. As soon as I weaned her and got my period back, I started having weird episodes, which like yours, were mostly to due with "that time of the month" or after flying. When I became pregnant with my second, things got a lot worse, but at least now I know what I'm dealing with and have learned to manage it a lot better.Hi shan1212, sorry I didn't see this sooner but to answer your question, yes, my symptoms started about a year after weaning my child! Right after weaning, PMS symptoms started flaring up more intensely month after month, then about a year later, bam! my first POTS episode. My episodes are mostly driven by hormonal fluctuation, it seems like estrogen. I'm very cautiously considering a second pregnancy. I'm happy to hear that you were able to navigate POTS through a second pregnancy, it is encouraging. How did POTS present for you during/after your second pregnancy? Quote Link to comment Share on other sites More sharing options...
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