Neomorph

@Pistol That is so interesting. As far as I know, I don't have HPOTs. I usually actually have pretty low BP, but it has increased slightly since upping sodium and liquid in my diet. I hope the Florinef doesn't cause severe side effects, as I will be on a very small maintenance dose. I get Raynaud's in my feet and hands. I usually notice it first because my toenails turn purple before I even feel chilled. As for the auto-immune factor, I have heard of the possible relationship with that and POTS. I actually do have a family history of Lupus as well, so that is definitely on my watch list. I did have my ANA tested, and as of now, it is negative. But my understanding is that the ANA can change over time and a negative test doesn't necessarily rule out Lupus? I believe my POTS started with the onset of puberty and my menstrual cycle, rather than a virus, but it has persisted and worsened over time, which is why I think I have something else going on!

Hi everyone! I had a follow-up with my cardiologist today, after being diagnosed with POTS eight months ago, and she is now fairly certain that I have Raynaud's. My fingers turn white when I'm cold, and sometimes finger/toenails turn blue. Can anyone give more detail about the link between Raynaud's and dysautonomia? My other major symptoms include severe muscle pain and stiffness (even from fairly mild activities... or sitting still) and my ESR is slightly elevated. This is leading my cardiologist to believe there might be some inflammatory process starting in my body that is not related to my POTS. However, this is not her area of expertise. She is referring me to Rheumatology (again...) to hopefully confirm Raynaud's and anything else. I'm wondering if anyone else here has a similar combination of conditions/symptoms and if you have any tips or insight into what could be going on. I was also prescribed fludrocortisone at this appointment, and will stop taking propranolol for my POTS! I am excited for this medication change as I could not tolerate propranolol at night. How have your experiences with fludrocortisone been?

@Sarah Tee @MTRJ75 @MattyT @MikeO Thank you all for your input! I will keep doing what I'm doing, then. I have an appointment this week with a new PCP to see if she will help me with referrals and come up with more of a game plan. Fingers crossed she takes me a little more seriously!

Thank you! I didn't realize Sjogren's shows in a blood test. I'm trying to see a rheumatologist, but they denied my referral last time due to "lack of evidence" of me having a rheumatologic condition. My symptoms aren't enough. That is why I'm see the eye doctor now, to gather more "evidence". Sigh xD

I'm wondering if anyone here has dysautonomia as a result of an autoimmune condition, such as Lupus. If so, what was your journey like, and would you feel comfortable sharing some of your symptoms? I think my POTS may be due to an underlying autoimmune or genetic condition. I have a family history of Lupus in particular. Lately I have had horrible dry eyes and dry mouth and my doctor has referred me to an eye specialist to see if I maybe have Sjogren's (which as I understand it, may or may not be associated with Lupus). I have had dry eye off-and-on for a few years but now with the cold, dry weather it is bothering me constantly. I guess I'm wondering how exactly did you find out you have Lupus, or another autoimmune condition, and what tests they did. From what I've read, it can be hard to actually diagnose these and a diagnosis comes from ruling other things out - or getting an ANA blood test. Can someone have like "beginning" stages of Lupus and not test positive for it initially? My organ function/labs are all normal, so my doctor thinks I'm "fine". If you can point me to any medical literature that would be much appreciated too

Ugh I am sorry! We've finally left the heat behind here, sorry you've found it I was miserable this summer as well. I don't know what to do other than stay in the AC and avoid being in the sun when possible! Direct sunlight is unbearable. I hope you manage to stay somewhat cool.

I know how you feel! I was diagnosed with POTS in May, but I feel like there is more going on with me, too. I have symptoms that just don't seem like they can come from POTS alone, or managing my POTS symptoms doesn't manage these other ones. Unfortunately, my doctor has been very resistant to looking into more chronic conditions/causes with me. I believe I could have Hypermobile Ehlers Danlos - from what I have read, connective tissue disorders like hEDS and POTS often co-occur. I have common hEDS-like symptoms, like cracking/popping joints, easy bruising, joint/muscle stiffness, joint subluxations, and GI issues. It would seem to fit, but my doctor doesn't think so. It sounds like hEDS can be a cause of POTS. I'm not really sure of the mechanism or why it causes POTS. From what I understand - and someone correct me if I'm wrong - POTS is often a symptom of another underlying condition, or if you have POTS you likely have something else as well. So in short, no, I have not found the cause of my POTS, but hEDS or connective tissue disorders in general could be worth looking into, depending on your symptoms. I am very new to this POTS/dysautonomia/chronic illness thing. I hope you find some answers!

@Pistol I know, right? Thanks for your advice and support everyone. @MikeO @Sarah Tee @Sushi I'm finding that is tough to come by! I suppose I will see how things go with the gastroenterologist and see if I can't get more help from there.

@Pistol That all makes sense. I understand hEDS isn't really treatable, but it sounds like there are precautions I could take (if I do have it)? As @Sushi was explaining, it sounds like they have the help of a physical therapist. I'm guessing based on how picky my insurance has been, I would need an official diagnoses in order to receive this kind of help. I guess I'm worried about my "hEDS-like" symptoms progressing and causing more issues down the road, so I'm interested in preventative measures, even if that is things like exercise and supplements. The link between hEDS and anesthesia is interesting; I have woken up during surgery and have memory of it, and I wonder if that could be why. As for digestive issues, I will try keeping better track of what I eat and my symptoms. I am pretty horrible at keeping a food diary. I try to make "mental note" but that doesn't always work out. I think I would benefit from allergy/intolerance testing. @MikeO I will try that! Anything to make me more comfortable. @Sarah Tee Those are things I was considering as well. I feel like a diagnoses would be helpful for preventative care/general wellness at the very least. I have no idea if my GI specialist knows anything about dysautonomia. My PCP just kind of refers me to whomever he sees fit. I think he referred me to a GI office, I might be able to do some research and request a specific doctor when they schedule me. And yeah you would think he would discuss these things with me, especially because I was right about having POTS. I didn't get to tell him about all of my hEDS-like symptoms. He cut me off when I said "fatigue", ordered a sleep study, talked about depression, then shooed me out of his office 😂

Hi everyone, here I am making another post. Based on some info/symptoms I have shared in my other posts, some of you suggested that I get checked out for Hypermobile Ehlers Danlos (I have confirmed POTS). Does anyone else here have hEDS, another hypermobility condition, etc? I've been watching lectures that some of you have provided and I'm very suspicious that I may have it. However, my PCP is kind of... unhelpful... to put it nicely. I voiced my concerns to him and he basically wouldn't entertain the idea or refer me to see any specialists. He told me that an hEDS diagnoses "wouldn't help much anyway", so I shouldn't bother pursuing a diagnoses. But, I have also read that a proper and quick diagnoses is essential to improving quality of life. So I guess I'm wondering, do you all think pursuing an hEDS (or other hypermobility spectrum disorder) diagnoses is worth it? I'm hesitant to just self-diagnose. I also don't know where to go from here, because my PCP won't refer me for hEDS. Secondly, does anyone know about the link between hypermobility and gut issues? I have had chronic constipation, periods of painful bloating and gas, and diarrhea (sorry, TMI alert!) for over a year now. I feel like my guts work on either all or nothing - I practically have to force myself to have diarrhea to get things moving. My doctor recommended fiber supplements but that makes my symptoms SO much worse. The bloating is unbearable. Luckily, I bugged my doctor enough that he relented and referred me to a GI specialist. Currently waiting on them to get back to me. Does anyone have any advice or info in the meantime? My gut issues are one of the main reasons I'm suspecting hEDS, as I hear that is common. But I also have random joint and muscle pain, cracking/popping joints, easy bruising, and what I think are joint subluxations. I went out to lunch with a friend, and when I stood up from the booth I felt like I could no longer put full weight on my left leg. I could feel instability and discomfort in my left hip. It kind of just "went away" as I walked/limped around some more; could this be the joint going back into place? I just feel like I have many symptoms and twinges that I can't otherwise explain. Would love to know more about hEDS, diagnostic processes, gut health, etc. if anyone knows more! Thank you.

@Sarah Tee So, funny you should mention "my autonomic specialist". I had a doctor's appointment today, but just with my GP. I don't have an autonomic specialist. I tried to tell him my concerns, predominately my fatigue and digestive issues, and that I wonder if I could have hypermobility exacerbating/contributing to my issues. For fatigue, he recommends a sleep study (I guess that's a fair first step, but I figured I'm fatigued because I have POTS. He wants to check for sleep apnea). For my digestive issues, he basically recommended fluids and fiber, and if I still don't become regular, then he'll refer me to a GI specialist. I've been chronically constipated for a year now, doing fiber, supplements, fluids, everything. Still cannot reliably have a BM and I feel so sluggish. I think I need to see a GI specialist *now* xD Oh well, I suppose that's the US medical system for you. I also just did fasted labs today and everything looks normal. Of course. Thank you for your concern! Leaving that job was honestly the biggest improvement, still not quite 100% of course. I have joined a regional dysautonomia group! I will definitely ask around about specialists because I don't have any in my corner yet. Thanks for your comment, I hope you are doing okay!

Yeah, that definitely makes more sense in my mind! I will ask my doctor about getting on a more regular schedule, and with a new medication. Do you find that caffeinated beverages interact with your medicine? I think coffee and propranolol make me loopy, and I'm wondering if I should go decaf.

@Pistol I am also glad I recognized the job was ruining me! Unfortunately, my parents were not thrilled when I quit my job, and that continues to be a point of contention. I'm trying to take the necessary steps to get back into the workplace. I'm working part-time with a CEO of a start-up and also pursuing a Google Digital Marketing certification. A lot has been going on since my diagnosis! Ideally, I would like a work-from-home job, so that I can be near a bathroom, snacks, water, supplements/meds, etc, and not have to explain why I'm getting up for the 15th time 😂 That's the hope, anyway. As for meds, right now I am on Propranolol 10mg taken as needed before stressful events... I was actually initially prescribed it because I was having stress colitis during my senior year of college. This was before my POTS diagnosis. My doctor thought if we could calm my racing heart before things like presentations and tests, I wouldn't have to run to the bathroom with diarrhea. It's weird, now that I'm not in school, I rarely have diarrhea and I'm mostly constipated. My doctors said I could keep taking propranolol as needed for my tachycardia due to POTS. But I can't really predict when I will need it, and taking it at night disturbs my sleep, so I don't take it much at all. Unless I have a planned meeting, I take it to help me calm down. I wonder if I should be on something more consistently, to prevent spikes in my heart rate. Does Carvelidol give you any side effects?

@Jyoti It's very interesting, if unfortunate, how having one system out of wack can cause so many seemingly unrelated issues within the body. The deeper I dig, the more I have moments of "wait, that's not normal?". I'm definitely learning a lot about myself and chronic conditions. I am doing the basics like increasing salt and water intake. I have compression garments but unfortunately, I rarely use them as I have sensory issues with tight clothing. Honestly I think the biggest thing for me was quitting my veterinary assistant job. Working 10 hour shifts, not having time to take breaks, working in emergency situations, absolutely wrecked me. I couldn't fully recover over the weekend, and that's what made me look into getting a POTS diagnosis. I've been resting and doing light work for a couple of months now and I feel much better. I'm now trying to address all of my symptoms and slowly transition to finding a POTS appropriate job. I want to take my health more seriously. I think I will ask my doctor about another medication for the tachycardia, and maybe something to improve gut motility. That is probably my next biggest symptom. Thank you for your input, I'm feeling better prepared for my appointment more informed in general

@Jyoti I have not really explored those sources yet! Thank you, that gives me something else to look into. I made it through slide 153 of that presentation - and I will go through the rest - but now I'm highly suspicious I have more than only POTS. That is also good to know that maybe my Beighton score is not as accurate as it could be. May I ask, do you have any tips on how to lessen your hypermobility, or POTS, symptoms? I know of course I should consult my doctor before trying anything, but I always like to hear how people experiencing these conditions cope. Thanks again for the great resources.

@Jyoti Thank you for your reply! I just took the assessment, but based on those joints I'm only scoring a 2 - maybe a 4? But I'm also reading that people can have hypermobility in other joints. My hips often pop out of place and go back, and sometimes it really hurts when they do that, but I've never full dislocated any joint. My shoulders and neck are constantly knotted up and I suffer from frequent headaches. My ankles pronate if I'm not wearing shoes. And I am frequently constipated and suspect something is wrong with my gut motility. I bruise easily. I guess I'm hesitant to say I have hypermobility because I don't quite fit what the assessment says? I'm not sure.

Hello everyone! I've posted a couple of times here but I have a couple of questions that I'm hoping you all can help answer. I was diagnosed with POTS in May. I was working as a veterinary assistant (some of you may have seen my post wondering if I should quit my active job - I did). The last couple of months I was working, my heart rate was through the roof, my fatigue was awful, and I would hobble around, stiff and sore. I am much improved since taking a break. However, I have also been wondering if I have some type of hypermobility/connective tissue disorder. My joints often crack and pop (I'm only 24), I get extremely sore and stiff after any type of physical activity, and I have gut issues (I suspect IBS-C). Not all of my joints hyperextend but some do, especially in my wrists and elbows. I've read that these can be symptoms of a hypermobility condition. Do any of you have POTS and hypermobility? Are there any supplements I could add that you have found helpful? I have a doctor's appointment on the 18th of August with my GP, and this will be my first time seeing him since being diagnosed with POTS. I want to bring up everything I've noticed, and questions I have, but I'm a little worried I won't be taken seriously. I'm not even sure if there's anything more my doctor can do for me. Is there anything I should bring up or request at my appointment that could help? Supplements and medications I'm currently taking: Magnesium Glycinate - 665 mg daily Sodium - liquid IV/salting food, as much as I can handle daily Omega 3 - daily Probiotic and digestive enzyme - daily for gut health Propranolol - 10 mg as needed for tachycardia (honestly I don't take it very often as it disrupts my sleep) Thank you for any insights! I am still very new to the dysautonomia world.

Hello everyone - I am currently sick with a cold for the first time since my POTS diagnosis in May. Or maybe its allergies? I'm not sure. I have noticed that most OTC cold medications, like Sudafed, make me feel weird/loopy/high/tired, even before I knew I had POTS, so I just avoid using them. But when I was diagnosed my cardiologist said medications like Sudafed are actually "cardio toxins", and can have a stronger effect on people with POTS - No wonder! So now that I'm sick I would like some relief, and I'm wondering if you all prefer certain medications to deal with your colds/flu. My main symptom is sinus congestion and somehow my nose is runny and dry/burning at the same time (like up in my sinuses). Are there any POTS-recommended drugs for that? I'm willing to try herbal remedies too. Thank you!

@Sarah Tee I looked it up. Technically, the law here is that we should receive "a paid rest period, free from duties, of at least 10 minutes for every 4 hours worked". So I should be getting at least two 10-minute breaks a day. While this is outlined in our employee handbook, this doesn't happen. The closest I get to taking a break is going to our break room to quickly chug some Liquid IV or eat a handful of chips before someone calls me back to help with an animal. However, we do get an hour for lunch because "all workers must receive a meal period of at least 30 minutes for every five hours worked". So I guess my employer isn't holding up their end of the deal with the breaks? I'm not really sure what to do about that. If we aren't getting our state-mandated breaks, I'm unsure how I'll get extra accommodations. I technically am already part-time. I work three 10-11 hour days instead of four days per week. And thanks for what you said about exercise! I felt that my cardiologist didn't understand how active I really am at work. I will definitely check out those lectures. https://www.lni.wa.gov/workers-rights/agriculture-policies/rest-breaks-and-meal-periods#:~:text=All workers must receive a,of at least 30 minutes. @Pistol @MikeO My clinic does have reception positions, and they spend most of their time seated. And they don't have to restrain/wrestle the animals like the assistants do. I have thought about asking them to see if I can become a receptionist instead. Part of me wants to go into a completely different career field because it seems that no matter what, working in a vet clinic is stressful. The receptionists often come to the back nearly in tears because phones are ringing off the hook, clients are yelling at them about pricing, or the lobby is full because our doctors are backed up on appointments. It wouldn't be as physically demanding, but I'm not sure it would help my heart rate xD

@Pistol I see! Thanks for the information! I am still learning lots.

@Pistol Thank you for sharing your experience! That sounds similar to what I am dealing with at work. I am concerned about pushing myself past a point of no return. I am glad to hear that you could find a balance and treatments to help you start to feel better. Is HPOTS the Hyperadrenergic type? My cardiologist didn't get into specifics, so I'm unsure which form I have.

Thank you for the reply! I think I am doing pretty well with staying hydrated. I've been drinking 2-4 Liquid IV drinks daily at work, and I feel better after having them. I also salt pretty much all of my food now. I definitely could drink even more fluids. I've read that people with Dysautonomia really benefit from jobs that are flexible and allow for frequent breaks. Unfortunately, that is not possible with my current job. We are supposed to have two 10-minute breaks during the day, and that doesn't even happen because we are so slammed. I also feel bad calling out on the days I'm not feeling well because we are so short-staffed. It's sounding like being a vet assistant isn't sustainable for me anymore! Yoga sounds like a good exercise option. Do you experience dizziness while doing yoga? Are there certain poses you avoid?

Hello everyone, I am new here. I was just officially diagnosed with POTS two days ago, 5/9/2023. Apologies in advance for the long post. A little bit of background, I am 23 years old and have been experiencing POTS symptoms since I was about 12. I only became aware of POTS and Dysautonomia about 6 months ago. I realized maybe the symptoms I have been living with were not normal, and I brought them up to my PCP, and he referred me to a cardiologist. They confirmed the POTS diagnosis. The symptoms I experience are: Dizziness on standing, frequent near-fainting (only actually fainted once), tachycardia, fatigue, aches/pains, headaches, heat intolerance, exercise intolerance, shortness of breath, and IBS symptoms. Mornings/waking up are difficult for me. I hear that it takes many POTS/Dysautonomia patients years to receive a diagnosis, so I am grateful that my PCP quickly took me seriously and got me checked out. However, it took me so long to realize that what I was feeling was not normal. Now that I have an official diagnosis and am learning a bit more about POTS, I am finding myself in a bit of a dilemma. 6 months ago, I started a job as a veterinary assistant. As you may imagine, it is a very active job. I walk 10,000+ steps a day and lift heavy animals and equipment. I find that restraining animals on the ground for long periods of time (such as during treatments) and then standing causes dizzy spells 9/10 times. Sometimes I see stars, or my vision blacks out. I often sit or squat until it passes. In some ways, I feel that this job has improved my fitness. In others, I feel like it is exhausting me. Some days, I work and deal with clients while feeling groggy and like a zombie. Every night I come home drained and sore. My shifts are 10-11 hours. Tonight, as I’m writing this, I am getting over a pounding headache that started in the last hours of my shift. I feel like my body should be acclimated to this job after 6 months, but it just isn’t. I’m tired of being exhausted by work and in pain nearly every night. I think I am suffering from burnout due to how I feel physically. For the last couple of months, I have fantasized about quitting this job and taking time for myself. I have a marketing degree and have started a business, but I can’t afford to quit my “day job” yet. I want to spend what energy I do have working on my business ventures. My friends and family don’t seem to understand the physical and mental toll my vet job has on me. I wear a smartwatch to work, and sometimes my heart rate reaches up to 200 BPM, especially when I am dealing with a lot of hard cases. I am starting to feel like this job isn’t worth it. I am craving peace, rest, and time to improve myself. When I was diagnosed the other day, my cardiologist made it sound like staying active was of the utmost importance. I figured my job should be enough activity, as I come home wiped out every night. My cardiologist wants me to fit in even more exercise and stressed that I couldn’t become sedentary. I just feel like I can’t do it all. I am so tired. So, I am asking for some advice. How have you all in the community dealt with work? How do you manage active jobs? I’m considering looking for a remote job to hopefully make mornings/work days easier, but I understand that would make me more sedentary, which is not great. I’m not sure what move to make here. All I know is that I am not currently happy/feeling good. For anyone curious, these are the lifestyle changes I was told to make: Have up to 10,000mg of Sodium daily, take magnesium supplements, drink 3+ liters of water daily, wear compression garments, stay active, stay cool, and take my Propranolol as needed. The only thing I’m not doing yet is wearing compression garments; I plan on ordering some asap. Any other suggestions? (I know I should run everything by my doctor). Thank you so much for any advice, and I wish you all well on your own dysautonomia journeys.