katyroq

Members
  • Content count

    48
  • Joined

  • Last visited

Community Reputation

0 Neutral

About katyroq

  • Rank
    Advanced Member

Recent Profile Visitors

368 profile views
  1. katyroq

    Pots encouragement

    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!
  2. katyroq

    Info for boss/coworkers

    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.
  3. katyroq

    Info for boss/coworkers

    Thanks! I didn't know about this site, so will definitely check it out.
  4. katyroq

    Info for boss/coworkers

    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.
  5. katyroq

    Info for boss/coworkers

    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
  6. katyroq

    Info for boss/coworkers

    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.
  7. 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 911 as we have to in that situation... (mostly that I'm fine). I also take florinef and I know with that drug you're supposed to wear a medical ID (which I don't). I have never been sure if that was just because the med is for addisons disease where you are replacing hydrocortisone as well? Or am I at a risk just due to the fact that I probably don't make aldosterone anymore? (I guess this is a completely different topic) Sorry for the long post but I would appreciate input on the best way to make those around me aware of what to do or not do in an emergency.
  8. 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.
  9. katyroq

    Banana Bag Oral solution

    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.
  10. 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 need to explain things gets out of hand... @Alex D.Interesting. I did not know that. Always something new you learn with this illness... @Pistol Yes I guess I do understand that there is no cure for dysautonomia, and my doctor does the poor man's tilt test every time I go, and the medication has definitely not changed the readouts there. I was just grasping for an explanation. I just read the article MomtoGuliana posted, and now I understand better that the autonomic nervous system is what regulates all the hormones involved in the kidneys anyway, so it all comes back to the same thing. And yes thank you for reminding me of the hard water. I do have really hard water in my area, but I rent so I can't do much about it at the moment. It doesn't cause issues for my roommate, but then again I'm a lot more sensitive than she is to just about everything. @WinterSown I did have my thyroid checked a couple years ago when I first started trying to find an answer to my health issues. Everything was in range, but I did just now look up the numbers because I remembered some of them are close to the limits. So TSH is right in the middle and antibodies are good. But both free T3 and free T4 are very close to the top of the range. So that tends toward hyperthyroidism if anything. Unfortunately no lotion can touch the dryness. Even those extra thick sticky lotions don't help, they actually make it worse because the dryness of my skin causes it to shed really fast, and then it gets sticky and clogs up the pores, and then I get acne everywhere, which is no fun either. (ETA I really mean dehydration rather than dryness. My skin isn't dry and flakey just tight and itchy/uncomfortable) @MomtoGiulianaThank you so much. I hadn't seen that article before and it helped me understand some things better.
  11. 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 of salt) it would go right through me and I would still be thirsty. I did the high water high salt diet for several months before resorting to medication. Diet didn't work at all, but florinef worked and I feel so much better in many ways and am not nearly as thirsty. To me that suggests that my body was not responding properly to the inputs of salt and water. Also I have never noticed a difference when I drink pedialyte or another oral rehydration solution with the optimal salt/sugar/water ratio. It just goes right through me like water. Connected to this, does anyone deal with extremely dehydrated skin (not necessarily dry)? Within minutes of getting out of the shower and putting on moisturizer my skin is just as dehydrated /wrinkly as ever (super fun for someone way too young for wrinkles!) I know it has to be solved internally but I just can't figure out a way to hydrate myself. This is the case even on florinef. Anyone else have this "brand" of pots or know anything about it? I would appreciate any info you have.
  12. 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. That's all we really have.
  13. 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 testing into their own hands? Is it always the prescribing Dr who monitors it? I have a good doctor at the student health center who is helping me more with pots than my cardiologist, but she's the one who said insurance may not cover it. Sorry not feeling well today of nothing is making sense. I got a bad infection from low immune system due to florinef, which my cardiologist never warned me to be careful about.
  14. katyroq

    Florinef crash?

    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 started on 0.1 mg in October. I had a similar experience to you where I felt great (so much energy) for the first couple days and the third day was horrible with symptoms. I had a constant weird cough as well. My doctor let me stop taking it for a few days and things went back to normal. I restarted the next week and the doctor told me to stick it out for 1 week no matter how bad I felt. The first few days I had bad anxiety and palpitations, but not as bad or as many symptoms as the first time. Then I started feeling more normal but with the energy. It took a good 2 months before I didn't feel any side effects but those were minor enough compared to the energy and ability to stand. I have had a couple of crashes the first few months. I connected those to low potassium because eating /drinking tons of potassium rich foods /drinks was all that helped. One of the times I got my potassium levels checked 3 days later and they were low normal when normally they are high normal. So no supplements prescribed but I'm sure the differential is why I felt bad. Oddly crashes also seem connected to the female hormone cycle since they happen once a month. and that 3rd awful day of florinef was probably that exact day. This month (4th on florinef) I just had a super tired day like I used to have all the time with Pots. So even now things are equilibrating. Anyway I hope my experience can help you some. Like you, I couldnt find much on the internet about my response to the florinef. But it ended up working for me. Everyone is different, so definitely be in consult with your Doctor/pharmacist as you decide how to proceed. All the best!
  15. katyroq

    EDS test/diagnosis questions

    Thanks for all the helpful info everyone!