sideofsalt

Fortunately, ever since I got the flu shot regularly (about 10 years now), I have not contracted the flu. It's not 100% protection, but it has worked for me. After I got a throat infection post-POTS dx, my POTS and migraines got a LOT worse. That is why I make sure I don't miss the flu shot - if I can avoid further complicating my POTS this way, I get it done.

Finally got the preservative free flu shot. One thing to check off the list!

My doctor is leaving the decision up to me because my symptoms are managed fairly well. Honestly, a huge part of me wants to know so that I can get to the bottom of this! And so I can be prepared should I be lucky to be pregnant again.

Noonoo, I weaned gradually. Then my hormone fluctuations became more and more extreme over the course of many months - PMS, migraine - before my first POTS episodes. If you can point me to any resources that discuss breastfeeding and POTS, I would love to learn more! MomtoGiuliana raises a good point about the practicality of disability due to POTS and I have been thinking about how I would go about getting help to reduce the inevitable sleep deprivation of the early months and what I would need to do in a worst case scenario. kJay's experience is very encouraging! My next time around, I will be better prepared to address my pregnancy in a more healthy manner, especially in regards to nutrition.

Artluvr09, I experience my worst symptoms during my cycle, and I have learned that getting adequate sleep is a major factor in how I feel. For example, when my family caught the last round of colds, it threw off my sleep schedule. I was fine for a few days but then the sleep loss accumulated and my POTS was the worst it had been in a month. It restabilized after a few nights of adequate sleep. To me it makes sense to me that the two factors - cycle and getting up early - contributed to the state you're in.

I'm in the same boat as you Noonoo - I am considering if having a child is a possibility. Currently, my doctors say POTS is not a limiting factor to becoming pregnant but we honestly don't know how our bodies will react once pregnant. There's no way to predict. (I too developed POTS quite a while after my first child when I stopped nursing). Best of luck if you head down that path!

My POTS was dx'd by TTT back in 2012 and I believe I did the ACTHS test as well (normal results) but that was all that was done. I have not done the full battery of autonomic testing, but my new cardiologist is recommending I do that now if I want to learn more about my dysautonomia. If you have done the full battery of autonomic testing, how did that help you? Did it change the course of your treatment? At this point in time I am weighing the benefits of getting the testing done. I would have to be off of the medication for X days, and it may add to my medical bills, so I'm trying to determine if getting the testing done could lead to an improvement in my care. I am currently taking midodrine and propranolol with good results. I am also considering having a baby (my POTS developed after the birth of my first). Thanks in advance!

Thanks for the input. I finally found a pharmacy that offers a preservative free flu shot. I don't yet know if my POTS is 100% immune-related or 100% pregnancy-related or if it's a mix between the two, since I experienced a chest cold and had a baby before my big crash, but I figured I won't take the chance with the flumist. Hopefully I will get the preservative free shot this week!

I am due for my annual flu shot. I was dx'd with POTS 2.5 years ago and always went with the mercury-free injectable form. Since I moved, the only mercury-free I can find in my area is the Flumist which contains a partially live or live virus. I'm not sure I want to gamble with the live virus. Have any of us on the board had experiences with Flumist? Was your dysautonomia affected in any way afterwards?

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!