Jump to content


  • Posts

  • Joined

Posts 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 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. 4 hours ago, Lily said:

    I downloaded it and read it with interest.  The focus on heart rate zones and the use of different zones throughout the week is consistent with various training programs I have seen in other contexts, such as training for a race.  I didn't see anything in the document about where to start if you already can do upright exercise.  Or is this protocol only for people who are quite badly off?  All my doctor told me was to do "cardio against resistance" and to work up to 30 minutes 3 times per week.  When I said that I can already do that (although I am very inconsistent at actually doing it), he said I can just exercise however I want to, as long as I keep doing it.  Now if only I can figure out how to get myself to exercise consistently....

    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. On 2/5/2019 at 9:30 AM, Lily said:

    I am a college professor, on the tenure track at a teaching-oriented university.  The extreme flexibility of my job is a huge asset.  I have an office, so I can work with my feet on my desk if I want to.  I can take a power nap if I feel particularly terrible.  If I want to teach my classes sitting cross-legged on a table instead of teaching, well, college professors are eccentric, aren't they?  A lot of colleagues know that I have some kind of chronic health condition, but that it is not a problem for doing my job.  I have never had to invoke the Americans With Disabilities Act, probably because I can just do any accommodations I need.  Maybe something unusual will come up in the future, but the past 5 years have been fine for me.

    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. 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! 

  10. On 7/7/2018 at 10:36 PM, yogini said:

    I took Florinef for a while and I am not aware of any requirement or recommendation to wear a medical bracelet. 

    There is information on various dysautonomia websites including Dinet - brochures or sheets you can print out to give to others. But  i have tried to explain POTS to people and no one gets it and they might not need to, they just need to connect you with your emergency contacts in case you are ill or faint - family, hospital  and /or doctors. A simple explanation is that "I have very low blood pressure" or "My heart beats too fast".  It might be enough to just give them the list of contacts in case of illness/fainting.  

    Although it makes sense to prepare I would also be optimistic that you haven’t fainted or needed emergency care yet - and hopefully that means you won’t!



    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. 

  11. On 7/8/2018 at 8:08 AM, Pistol said:

    @katyroq - the ndrf.org ( national dysautonomia research foundation ) has a brochure on their web site that addresses patients, doctors, care givers etc about the special needs of dysautonomia patients. You can see if that is helpful?

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

  12. On 7/7/2018 at 8:58 PM, moosey said:

    That's tough! I worked as an assistant manager at a heliport. For over half a year I did fine, then suddenly POTS came back. It was hard to explain to my boss and it was embarrassing for an employee to find me on the floor next to my desk. What I ultimately did was write out an email to everyone explaining how my condition could affect THEIR day. Most of the time, people don't want to read long-drawn out literature on conditions that don't apply to them. My main points: 1. don't call an ambulance if I've passed out. 2. I'm not dying any time soon. 3. Sometimes I put salt in my water. Don't be alarmed, I'm not pregnant or crazy. 

    Since you're a teacher, I imagine your students would be more curious about what's happening. This could be a good opportunity to take 10-15 minutes to explain the most basic parts of what POTS is. It could be good not just for your sake, but for theirs as well. When I was first experiencing symptoms of POTS as a youngster, nobody believed that I was truly suffering. I was bullied not just by kids but by teachers and parents as well. My pediatrician told my parents and my school that it was a behavior issue. Ultimately I was expelled from school because everyone around me believed that I was "faking". Educating young people about invisible illnesses could help them develop empathy for peers who may be going through health issues as well. Just a thought. 

    Also, if your employer is asking you to provide documentation that you're actually suffering from a condition, it might be a good idea to have your doctor write out a note explaining what they think is pertinent for your boss to know. Doctors have to write that sort of stuff pretty often, so they would probably know the best words to use. 

    Good luck! I wish you the best.  

    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. 

  13. 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. 

  14. 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. 

  15. 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. 

  16. 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.



  17. 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. 

  18. 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. 

  19. 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. 

  20. 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! 

  21. On 2/19/2018 at 4:27 PM, Missy M said:

    It looks like my left leg. I was diagnosed with it being livido reticularis (which someone else mentioned above).

    Livedo reticularis is a symptom, not the name of a disease. It can be caused by many things. Since two of the known causes can be autoimmune disorders or EDS (Ehlers Danlos Syndrome), and since I have both an inherited autoimmune and suspected EDS, my doctors and I saw no need to worry about it further. That was two years ago. 

    My livedo reiticularis is still present in that leg but faded quite a bit after I did water exercises for several months. I think the exercises benefitted my circulation

    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

  • Create New...