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Everything posted by katyroq

  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 re
  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 tha
  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
  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
  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 yo
  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
  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 a
  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
  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 prescript
  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.
  16. I am trying to put together something to give to my boss regarding my POTS/dysautonomia. Has anyone found something concise but informative? My boss is aware that I pass out a lot, but I had a situation the other day where I got very symptomatic due to heat. I'm a teacher, and in talking to my boss afterwards he joked "I guess if you pass out one of the students will come get me" That just got me to thinking, would the students know what to do? Do they know where my boss's office is? Do I need to tell them anything? And secondly does my boss need to know anything more like if they call 9
  17. I relate quite a bit to what you said @Pistol. I find this one of the weirdest things about my fatigue symptoms. I work a couple days a week and on those days can do almost anything I want or need to, but if I don't have anything in particular to do I have much more trouble in the morning. It seems like just a little bit of adrenaline from having to be somewhere at a certain time helps a lot. Not that I don't crash later, but it really affects my ability to function in the morning.
  18. I have tried Banana Bag as well, and didn't really notice any positive effects and it's pretty expensive. I agree it doesn't taste very good, like vitamins. I usually stick to a homemade hydration drink (almost the same recipe as Lily gave above). It gets the right electrolyte and sugar ratios and actually tastes decent.
  19. Thanks everyone for your replies. I will do some more reading but it sounds like this is not connected to dysautonomia. I did just look up lab results and while all my electrolytes are "in range", my sodium is always at the top of the range, potassium the lowest possible, and CO2 almost at the maximum. I read that this could be connected with dehydration (so obviously a doctor won't say anything since it's a single point in time, and it can be normal to be slightly dehydrated). But could it be that my "set point" is "slightly dehydrated"? I know I'm grasping at straws here, but sometimes my ne
  20. Can anyone point me to information or other posts about the role of the body's fluid balance systems in POTS? Florinef has made a huge difference for me, but my doctor said it just makes me feel better but it isn't solving the problem with my nervous system. But couldn't it be possible that I could have had a non nervous system problem causing the hypovolemia? Is there much research into causes of hypovolemia at the level of the kidneys or the hormones like aldosterone involved in fluid retention? I used to be so thirsty all the time and no matter how much I would drink (even with lots o
  21. Thanks. So whether it's covered may be connected to the drug itself. I checked my statement from my bloodwork in November and it was $40 and lists 2 dates for payment. One is in December and it's "insurance denied :non covered services". Then in Feb is listed "path unbillable clin comp" with - $40 to bring my balance to 0. Not sure what that means but I call my insurance. Also "Always hoping"... What a lovely name. Touched me just now... Yes we must cling to hope. I sometimes think of looking for the little bubbles of hope that are rising even from the great dark depths of this illness.
  22. I'm taking florinef, and in the 1st month my potassium went from 4.5 to 3.5 (range 3.3-5). Its now 6 months and I want to make sure I'm still within range. The student health center at my university said it may not be covered by insurance. I realize that every insurance is different, but from what I understand it's very important to check potassium with this drug. Although my cardiologist who prescribed the florinef thinks it's a super benign drug and I'm only taking 0.1 MG. So she's not concerned and did not order the test obviously. Does anyone on florinef have to take the potassium te
  23. I am not an expert but I think it makes a lot of sense that when you start taking a steroid hormone that you may or may not be deficient in, there would be some crazy results right away. Look at the Wikipedia article for mineralcorticoid. There is a nice graphic showing all the hormones and how they are chemically related. You're doing a lot more than adding a single drug... You're messing with a whole interconnected system. https://en.m.wikipedia.org/wiki/Mineralocorticoid That said, florinef has been the best thing that's happened to my POTS and has literally changed my life. I starte
  24. Thanks for all the helpful info everyone!
  25. I get blotchy legs too but thought it was just normal for POTS due to blood pooling. But are you suggesting perhaps there is a separate (though nothing is really separate) cause for it? I'm thinking I may have EDS so I'm wondering does the fact that I have livedo reticularis mean EDS or some other cause is more likely? I also have Reynauds, which is somewhat similar. I know that many people have that who don't have POTS though. There is no known cause for Reynauds either as far as I know. So I'm wondering if livedo reticularis is like that? Separate but often seen together? There are so many
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