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  1. It's always good to hear about something that helps Unfortunately slow/deep breathing has never helped, and even had the opposite effect for me. It seems to make my heart beat faster and harder. Breathing down into my diaphragm is especially no good. It's been that way all my life that I can remember. Anyone else? My Dr has mentioned that some of my autonomic reflexes are opposite what they should be. So I randomly decided to try the opposite of deep breathing, and it actually helped. I just take a quick, sharp, breath high up in my chest, and hold it for maybe 1 second and also release quickly. Anyway sorry to go off topic but I think my backwards response is probably due to dysautonomia and I'm wondering if I'm not the only one!
  2. I've just been looking at this too, and it does look very similar to training plans for running, etc. I'm in a similar boat to you. I'm able to take walks with no problems, and I have been doing 30 minutes of rowing or recumbent biking 3-4 times a week (inconsistently) for the last 2.5 years. I'm thinking it might help with consistency to follow this plan, and I'm thinking of starting at month 1 because I haven't been doing any weight training, so it will still be a challenge. Since I've been exclusively doing seated exercise, I want to try to push myself to do more upright, but other than that I am not too worried about the exact mode of exercise recommended in the plan. I kind of see this as just an exercise plan more than a POTS solution. I know regular exercise has helped me, and this is a well laid out plan for increasing to a healthy level of exercise to maintain for the long term.
  3. "Drink some Gatorade every day and hope that you're one of the young people who grows out of POTS." -Cardiologist 1 I was 29 at the time, definitely not a "teen onset" case. But I do look young! I'm grateful not to have as bad stories as many of you, but I did find this advice funny. (for the record this dr. was extremely competent and I now know that he suspected pots just from listening to my heart lying down and sitting up, immediately ordered a TTT, etc). Unfortunately when it came to treatment he wasn't as helpful. Currently 3 years later, I am doing well under the care of another cardiologist. Medication, exercise, and increased sodium have all helped. Turns out there was a LOT that could be done and even though I have by no means "outgrown" my POTS, I'm managing symptoms quite well and living my life much more fully than I was. ETA: my current cardiologist says funny things too, but mainly because he's at a teaching hospital and he's always showing me and my weird symptoms off to the trainees and nurses. He always has me do a poor man's TTT and one day the nurse was super confused why he would want to take HR and BP after standing 3 minutes. She was thoroughly shocked at how high my hr went and then I heard him congratulating her on her first POTS test. It honestly makes me feel better about having a "weird" health condition when he makes it seem special for the students to get to learn about it.
  4. I have OCD tendencies, yet usually my anxiety maxes out before I can get too involved in an ocd behavior, so I give up. I've read that the strongest risk factor for OCD is having a close relationship with someone who suffers from it, and at a young age (so potentially both genetics and environment). There is also a chemical component and physical/structural differences in the brain. Nothing that really overlapped with autonomic stuff necessarily. I think my tendencies come from growing up with a dad and sister who deal with OCD. Interestingly, that sister also has had POTS symptoms for years that have improved and were never diagnosed. So who knows if it could be connected. It's my mom where the POTS/EDS comes from in our family.
  5. @Tenacity yes that sounds very similar to what I'm experiencing. Good to hear that your symptoms got better over time. That's what I'm hoping for. @ScottS I do drink water first thing, and I don't do heavy exercise in the morning because my POTS symptoms are worse then. But I do usually get up and moving around (take the dog on a walk around the block) before I try to eat and that does help. But not enough that I can eat solid food for my first meal, even if it's not until 11 am. I feel like I can deal with the breakfast issues but it's a lot harder when it's all day long. Sounds like you can relate. @toomanyproblems Are my symptoms similar to what you experience with gastroparesis? I have read about it but didn't think the symptoms totally fit. I do have nausea and bloating but not really pain /indigestion /etc. Sorry to hear how long you've been dealing with gastroparesis. @StayAtHomeMom Thanks for sharing your experience. Interesting that you suggest to check in with a doctor. I tend to think if I can connect a physical symptom to dysautonomia then I don't need to see a doctor about that symptom because there won't be anything they can do (yes I'm the worst patient ever). I guess I'll see how long this goes on. I haven't been eating enough which affects blood sugar and other symptoms and the ability to think. But I haven't been ill or unable to do any of my normal things.
  6. I have no idea if this is dysautonomia related, and didn't have much luck searching the internet or these forums so far, so I thought I'd just ask. I'm used to some level of nausea in the morning and it's always hard to eat breakfast except for liquids. But lately these feelings have intensified and are throughout the day. I feel some tightness up under my ribs and even thinking about most foods makes me nauseous. I can't stomach anything except cold/raw or liquid foods like fruits and veggies. I do get hungry and I can tell my blood sugar is all over the place, which the fact that I'm mostly eating fruit doesn't help. Sometimes at night at 10 pm or later I'll get hungry enough to eat a fried egg and some very dry toast and occasionally even avocado isn't too rich. Randomly I'll feel ok and for example last week I went out to eat Mexican food, and had no problem. Anyway I have no idea if this is dysautonomia related but the fact that it comes and goes "randomly" in a way that seems similar to my other symptoms, makes me wonder... Sound familiar to anyone else?
  7. I had a similar question to the original poster. I'm a PhD student right now and so so encouraged to read this! I've taken about a year off of my PhD and I'm slowly getting back into it. I teach a lab class about 12 hours a week which is quite a bit of standing, and often that's about all the work I can do in a week (and it takes a long time to recover). I worry about whether I'm stupid to aspire to become a professor. But your post gives me some hope! In general I know I don't have the worst case of POTS so I want to believe it's possible!
  8. @dannyg Yes the cough still happens, but I kind of do think it's related to blood pressure changes as someone mentioned above. Here is why : I started on fludrocortisone about a year ago, and i immediately started getting this same cough all the time. Even sitting down after standing would set off a coughing attack. It was crazy. After about 2 months which was how long it took me to adjust to the med, the cough was back to the normal frequency. I assume there were a lot of blood pressure fluctuations at the beginning that may have contributed to the cough. (btw still taking fludro and after the initial rough few weeks it has changed my life!) @MeganMN thanks for sharing that insight from your doctor! I'm super sensitive to everything I put into my body so I could definitely believe that my body would react to that dump of catecholamines.
  9. My doctor said ibuprofen (even a double dose) is ok with fludrocortisone. The pharmacy pamphlet says do not take aspirin.
  10. I like to remind myself that "normal" looks different for everyone. So yes it's absolutely possible to live a normal life with POTS. I have a fairly mild case myself and can usually push myself to do anything that I really want or need to do (even if it takes more time than "normal" to recover). For me the key is to be present in the moment and not compare myself to others who seem to have endless energy, or even to myself on a good day. Getting POTS in my 20s has taught me not to treat my body as a machine that I can abuse and force to work constantly for me. Instead I have learned to listen to my body and to give it the things it needs to thrive. This is a valuable lesson I wouldn't have learned without being sick. I'm feeling pretty consistently good right now, so I can identify with the worrying about if /when things might get worse. But I try not to do that. Actually my flare last year led me to find a new and much better doctor and start on a medication that is helping me feel better than I have felt in my entire life. Even before the flare. So was the flare "bad"? It depends. Mild pots can be kind of confusing, but I encourage you not to think of your limitations or worry about your health. Live your life but do use the knowledge of your condition to do the things like exercise that help with it. Best of luck!
  11. Thanks, I agree with your points. I'm thankful to be well enough to do my job nearly all the time, and I have pushed through symptoms for the last several years. I have a good understanding of my symptoms and usually can keep them under control in the classroom. These last couple weeks with the intense heat and improper AC in the classroom are the first time I've actually worried about anything happening. It was over 80 with 28 students in the room and I was running around helping them perform a lab for 3 hours in a row, twice in a day. Re florinef. The paper that comes with my prescription says "If you will be using this medication for a long time, carry a warning card or medical ID bracelet that identifies your use of this medication." I guess I could consult with my pharmacist or doctor on this, as I've been taking it for almost a year.
  12. Thanks! I didn't know about this site, so will definitely check it out.
  13. Thank you so much for sharing your ideas and experience. I like your 3 items you shared with coworkers. My boss is aware that what I have is not life threatening, and he had a brother who had weird BP issues growing up, so I think he actually has pretty good understanding of what is going on without necessarily needing to know all the details of POTS. Also he is a PhD in biology so is pretty comfortable with the physiology of it all. And I love your point about educating young people about invisible illnesses. I teach college students, so pots itself may be relevant to some of them.
  14. Thanks for the suggestions @CK1. You're right that letting the students know what's going on could help. I have been realizing that sometimes I may look unhappy when I'm not feeling well, and I guess they should know I'm not mad at them or anything
  15. Thanks for the suggestion @p8d. I will look into it. If it's short enough he may read it. I was hoping for something more brochure length that he could refer to if needed.
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