katyroq

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About katyroq

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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!
  7. katyroq

    EDS test/diagnosis questions

    Thanks for all the helpful info everyone!
  8. katyroq

    Purple blotchy legs

    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 pieces to this... It's confusing
  9. I'm wondering how those of you who have EDS got a genetic test or diagnosis. Do you have to see a geneticist, or could a GP refer you for the proper testing? My mom and 3 sisters and I all have various different and mostly mild EDS/hypermobility symptoms, and I have POTS. I'm curious if we might have EDS in the family. From what I understand, there isn't much that can be done for EDS treatment, and those are not my worst symptoms so I'm not looking for a doctor per se. Mostly I'm wondering if my POTS is likely to just "go away" or if it may be a lifelong issue due to EDS.
  10. katyroq

    Multivitamin and florinef

    I was taking a multivitamin and a couple other vitamins that were in my records at the time I was prescribed florinef.
  11. I use Nuun and Banana Bag occasionally for convenience but I honestly can't tell if they help and they are expensive. I usually make my own electrolyte drink based on molar ratios of oral rehydration solution. It's easy to make, cheap, tastes good, and I can feel a positive effect if I drink at least 20 oz/day. It's similar to the recipe on the website Lily posted but here is what I do. In 1 gal jug: Fruit juice in an amount providing 100 g sugar. I use the non-frozen concentrate on the juice aisle and it comes to ~1/2 can per gal. Very cheap. 2 tsp sea salt 2 tsp salt substitute (KCl) Fill with water and refrigerate It's also easy to scale the recipe which worked really well while I was traveling recently. I mixed up a 1:1 ratio of the salt and salt substitute and brought that with me. Then I just had to find some juice and add the right amount of it and the salts to my water bottle. I even used juice from the free hotel breakfast so it didn't cost anything!
  12. katyroq

    question about florinef

    I'm on florinef 0.1 mg and it's helped me a lot. I almost feel normal, or at least I able to tolerate normal activities such as working, standing in line, etc. I did have a lot of side effects initially but as others have said, starting slowly and also watching for drops in potassium helps. My potassium hasn't dropped below "normal" on a blood test but i have certainly felt the effects of it being lower than what I'm used to. I started eating a high potassium diet which helped. It has taken me about 2 months to get to the point where I feel only the positive effects and nothing negative (even without eating extra potassium), but within the first couple weeks I noticed improvement which is why I stuck with it. Like you I read this site before starting and I'm glad I did. My Dr. never mentioned potassium issues and actually started me on 0.2 mg and never said to start low. Good luck!
  13. katyroq

    Florinef strange side effects

    Bombsh3ll, that's very interesting about florinef potentiating effects of noradrenaline. It makes a lot of sense with my experience. Thankfully for me things have settled down after almost 2 months on florinef. My heart rate is still somewhat higher but the positive effects far outweigh any negatives from that. How long have you taken florinef in the past? I agree that it's dangerous to not monitor potassium. My Dr didn't say anything to me about it, but tested mine when I asked after 6 weeks on florinef. It was 3.7 when in the past my potassium has always been 4.5. So clearly it's lower than normal which could cause some symptoms even if it's not clinically too low. Interestingly I have been traveling for the last 2 weeks and haven't been too careful about eating tons of potassium, and I haven't had any episodes like what I thought were low potassium. So who knows. I think it's just taking a very long time for my body to adjust to this drug.
  14. katyroq

    GPs not understanding what POTS is

    Sorry to hear about your experience with your GP. I have not had the same experience, but it's good you got a referral to a cardiologist. I have had 2 cardiologists and both knew POTS. The first never mentioned it, but ordered a tilt table test. I figured it out after that and asked him about it. So don't be afraid to speak up and ask for the tilt table test. A cardiologist should be a good place to start, and will rule out any other heart issues that could be going on. Best of luck!
  15. katyroq

    BP won't respond to salt or florinef

    Thanks for the replies. I agree that my BP isn't low and my doctor definitely is not trying to raise it. Initially my main symptom was passing out, but a huge part of getting that under control was knowledge of my HR being high when standing or showering, etc. I don't have much dizziness to speak of. I was more curious as to a physiological explanation why taking florinef and salt would not increase BP and decrease HR. It just doesn't make sense based on what we know it does in the body. I know it's not a big deal, I am just trying to understand. Altogether I do feel better on florinef. It has helped the headaches/nausea after being upright too long and also has made a big difference in my fatigue. Again, I have no idea why because my standing and exercising HR has gone up by about 20 bpm from what it used to be. I am very happy with how this has helped (seriously was wondering if I could ever have a full time career, and now I'm thinking much more optimistically!), but I am just thinking ahead to how to evaluate its effectiveness long term. I know exercise is the only "cure" for POTS, so ultimately that should be the criteria. Florinef makes me feel better on a daily basis but the increase in HR means I can't do the same intensity of workouts. So...I'm not sure if it is the best long-term solution. Also, I have no idea which drug I would add if I were to add another. My main symptom is fatigue and my Dr. already said there is no medication for that...hence my surprise when florinef helped.