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Everything posted by kafie

  1. I don't get the diagnostic criteria every time (increase of bpm 30+ or over 120bpm). I think some of that's that the body will try to compensate with swaying, twitching, or tensing the legs (the muscles help the veins push blood). I had the same question but the doc still diagnosed me with POTS - just not a severe case. Over the years I've learned that there's a lot of little things that I do (sometimes unknowingly) that reduce the dizziness - like leaning forward (I always did it because I stand up and feel fatigued or nauseous a lot, but I realize how that this is lowering my upper body slightly, making it easier for the blood to get back to my brain). Walking (when the attack is light) also helps, for the same reason as tensing the leg muscles. These things seem to reduce the tachycardia for me and I think are responsible for why I don't get the numbers every single time (that said, every time I have an attack my heart rate is around 140 (usually 70-90 resting). I do get tachycardia at other times too, but the lightheadedness does always involve a posture change. Sometimes my heartrate drops really slowly and I think that might also contribute to why I don't always see a 30bpm increase (in that my heartrate hasn't gone back to resting before standing, which seems to be more common on days when my symptoms are worse). As everyone said, there's several different types of dysautonomia and various underlying causes. I'm glad your doctor's looking in to it. My GP passed it off as anxiety and other docs were stumped about my other symptoms (like nausea). Took me several years of educating myself to even be able to figure out that POTS was a likely cause (which I even wrote off for a long time because I didn't have enough information to look for signs (like the blood pooling... didn't occur to me that this could be something that comes and goes and I needed to stand for a minute to really see it). Wishing you the best of luck!
  2. So I got in to see the specialist. He said basically what everyone here said: he treats the symptoms, not the numbers. Didn't even blink at the thought that I have POTS. Did a standing test in his office and it was positive. He prescribed: compression stockings (of course), 80oz of water, 15 minutes of exercise, salt sticks (he said i can't get enough salt from food), and fludrocortisone. I looked up interactions and it has a moderate interaction with two of my medications. One is a risk of serious heart arrhythmias. I'm wondering if I should send him a message about this. He prescribed quite a few so I'm guessing this is for long-term. Honestly, I'm curious about beta-blockers because of the antianxiety properties. I'm feeling positive though. He said my case isn't severe (which I knew), and that he's certain he can get my presyncope down to 0 (that felt good and I walked out of there with a huge smile on my face... it helps that he had a great bedside manner). I saw from a lot of people that this medication tends to poop out on people. How long did you get before it stopped working? Is it worth the risk or should I suggest something else when I see him next?
  3. I don't take any medication that should cause redness (plaquenil can cause discoloration, but to my knowledge that's grey/blue - also had this symptom long before I started that medication). I do get hot flashes (I have PCOS and my hormones are premenopausal), but they don't always coincide.
  4. Definitely not sun exposure. I get it all year around and even when I've been inside all day. It doesn't peel or anything like that either - just red (and sometimes hot, especially in my face - so maybe inflammatory in nature? I'm totally not sure).
  5. I was wondering if anyone else has this and if anyone knows why? I have redness on my upper chest/collar bone area and neck (usually not in the upper center portion though, but the sides all the way up to my ears and jawbone). I've been getting a lot of facial flushing as well. It doesn't seem to come on with any specific trigger and the redness on my neck is almost always there. The only thing I can think is vasodilation in the area, but I can't figure out for the life of me why it'd be specifically in that spot and spare the windpipe area). I might just have to chalk it up to my body being strange or a weird autoimmune symptom.
  6. I've been wondering about this as well. I use a e-cig and I'm actually working on tapering down to quit (I smoked for a long time and switched to vape at 12mg, I'm down to 3mg now)... But I've been kinda wondering if it might be worth it to quite literally just switch to patches because of the vasoconstrictor action of nicotine. I also have to wonder how much of these "positive" effects are the nicotine and how much is the other alkaloids (some of which have effects similar to MAOIs (antidepressants). I wouldn't suggest anyone try inhaled nicotine. Smoking is very unhealthy and the flavorings in vape are widely untested for inhalation safety, so we're not sure what the long term consequences are.
  7. I was wondering if the 30bpm increase is supposed to be laying to standing or sitting to standing. I know in the ttt they start you out in a supine position, then to upright. I know that consistently I have at least a 10bpm increase upon sitting, then at least a 20bpm increase from sitting to standing. (Both sustained) Most of the time there's at least a 30bpm increase upon standing from sitting. When I test my HR during an attack it's almost always 130-140bpm, which drops down usually to 90, if not 70bpm when I sit down (and very little change from sitting to laying). I often get a 30bpm increase from sitting to standing, but occasionally it's around 20-25bpm. My heartrate doesn't even out, it stays high... and there's little to no change in my bp. Of course, I've had a hard time getting a quiet place to do a real poor man's tilt table test to get the numbers properly. Of the ones I've done, two had only a 20-25bpm increase, two had over a 30bpm increase with... one of which ended in a faint and not bp cuff errored out because I passed out. I also found that if I walk slowly, my hr actually drops about 10bpm (if I walk fast or do anything that causes exertion, it jumps up really high). I wonder if this is because the muscle movement is helping pump the blood. My hr shoots back up as soon as I stand still though. To me, this explains how I do often go from dizzy when standing up to feeling fine as I walk through the room. I also found that performing the valsalva maneuver causes me to get dizzy and/or pass out. While i'm doing it my hr skyrockets (upwards of 170bpm), but then drops down below my resting hr once i release (down into the 60s-50s - both of which is really weird for me). I also am starting to notice that if my basal hr is high in the morning or if I get out of bed too quick then I seem to have more attacks that day. Thoughts? Anyone else have this experience?
  8. Yeah, I really like my rheumatologist. He's been really comforting and reassuring that my symptoms aren't just something to pass off and we're actually going to do something about that. Now, if only my GP had that kind of bedside manner.
  9. Luckily my RA is still in the early stages. I'm actually kind of lucky that the doctor was willing to treat without the bloodwork. I know a lot of people have that problem, especially with early seronegative RA. So... mostly we're working to prevent any more damage (or it progressing to an organ (my father has it in his lungs and has to be on oxygen during the day)). But that is pretty cool! I had no idea they did replacements for such small joints. My hope is that I won't need that. Provided by blood work doesn't change and since my ANA is very low, chances are that the progression will be slow (probably how I made it 5 years with symptoms with only mild wear) so I shouldn't have any deformities till I'm in my golden years (here's to hoping!).
  10. The thing to remember about disability is that it's intended for someone who can't hold down a full time job for more than 6 months (due to illness/disability). That you're working part time might make that difficult... but this is my advice: 1. Get all your medical charts if you can. You'll need all your doctors' names and any ER visits and inpatient stays you've had since your symptoms began (not just since diagnosis) 2. If you have any mental/emotional issues and don't already see a psychologist, get in to see one for diagnosis before filing if you can 3. When filling out the forms, don't just put your symptoms on your best or even moderate days, ALWAYS list also your symptoms on your worst days (chronic illness means you will most likely have good days, but also bad... your good days do not negate your bad days, and your bad days are the ones most likely to make you lose your job or be unemployable) 4. List every possible way that your symptoms effect your daily life - not just work but at home too --- everything from needing surfaces to grasp in case of a fall to if you have a hard time remembering things or making healthy meals The more information you have, the better, and the further back you can track your symptoms through paperwork the better. Please remember that disability doesn't mean you're giving up. I have been on SSI for about 4 years now and have just started getting back to work in the last year. I had lost my job not long before applying, but I now work part time and hoping that treatment will allow me to do more. There is nothing wrong with taking the assistance if you can get it, even if your hope is to get off of it. Once you're on it there's even more resources you can access to help you find employment too (like vocational rehab which can help you get training as well as find employment). If all you need is it to get you through tough times and give you the support you need to improve your health and get the things you need, I'd say it's still worth it. I'd at least apply... the worst they can do is deny you.
  11. I'm on plaquenil right now. It's barely done anything (i'm not getting the prolonged morning stiffness anymore, but the pain is still there). I'm also in a prednisone taper (10->2.5mg, currently on 5mg till Thursday, and will be finished with it in about a week and a half). If I don't see anymore improvement with the plaquenil in the next month or two we're moving on to methotrexate or sulfasalazine (I'm thinking methotrexate might be the best bet, it seems to be pretty effective for a lot of people - and it's what my rheumatologist suggested out of the two because the injectable is supposed to have less side effects (primarily the nausea is what he's concerned about)).
  12. I was diagnosed about 4 months ago. I'm seronegative so it only showed up on my x-rays (wearing of the bones around the joints). My family has it on both sides and I've had joint pain for probably about 5 years. It got worse over the last year and started waking me up at night so I got my doc to refer me to a rheumatologist (I also have an entrapped nerve in both elbows but it's the motor nerve). My sister had JRA at 7 (which remitted and relapsed recently). My mother got it around 17 - so I guess I got lucky getting it a little later in life.
  13. I'm sure I must have mixed that up in my head! Thank you for that information! That makes sense. My assumption was that having RA may have an effect on the dysautonomia (the syncope predates my joint pain but at this point the symptoms do seem to have a little ebb and flow together, but it might be that my body just likes to do it all at once more often than not (or that because of the overwhelming amount of suck I can't tell which is causing which symptom)), though I thought the theory was that POTS & OH may be immune mediated (which is totally not the same thing, I know, but both may react to things that get the immune system excited (infection, viral illnesses, ect)).
  14. They don't recommend trying to get pregnant until you've been off methotrexate for 3 years (even for the fathers) and I really don't want to have any after 35 (I'm 30 now). I also have PCOS and I figured that between methotrexate I'd have a very small window and a possible relapse with a low chance of conceiving again. I don't usually ovulate except a couple times a year (no joke) and had to take supplements to even get my LH to spike high enough to trigger ovulation (the first month I got a positive ovulation test was when I got pregnant, took us a year and eight months... which isn't really that bad honestly).
  15. Thanks everyone! I'm definitely going to ask the POTS specialist when I see him (whenever that is... the referral was sent in two weeks ago and I haven't gotten a call yet). I was just curious if anyone knew. I figure this is pretty much a cardinal sign, but I'm not sure if I had it before and just never noticed or if pregnancy really made it worse (almost all of my symptoms have gotten worse since - except my resting heartrate, which has gone down (probably because of all the activity)). I did experience a remission during my pregnancy (even with my arthritis). To my understanding that's because the immune system is suppressed to protect the baby... and I guess it's pretty common with autoimmune illnesses to get suddenly a lot worse afterwards (I guess the immune system goes nuts). Does anyone know with that if it tends to settle back down again eventually (my son is over a year now so I think I may have passed that point)? I'm on plaquenil though, so maybe that'll get my immune system to back off. I'm finally starting to feel that it's actually starting to kick in, so that's something. I've been wearing compression stockings for the last few days and that's been helping I think. The day I got them I had 7 instances of presyncope (luckily no faints) that day alone, but in the last few days I've only had 3 in total (and not a single one yesterday). So, here's to hoping this is a trend that'll continue. I just hadn't really decided if I want two kids or not and if another pregnancy will make this worse I think it might be one and done (I get there's an increased work load but my son has slept through the night since he was like 6 months... and I feel like my body is falling apart!) - this gets much worse and I'm honestly not sure I couuld take it of two kids. In one aspect that makes me a little sad, but in another... if I end up having to take methotrexate, I may not be able to have another one anyways.
  16. You could try looking into terpenes in tea and the likes? I'm not sure which ones are helpful for dysautonomia, and it may take some trial and error, but I know some people say they help. Sorry I couldn't be more help.
  17. I don't have any recipes for you (my low-spoons cooking pretty much involves eating lunch meat out of the fridge)... well... except maybe rice bakes (I can't ever get rice right on the stovetop anyways and rice bakes are pretty much throw it all in a pan and bake for however long it takes to cook the rice - you can even use frozen veggies and meat in them and pretty much make anything that way). But I thought I'd suggest that for times you feel up to cooking something that requires a lot of standing or watching over a frying pan/ect, maybe a stool? We have a step stool in our kitchen that also doubles as a seat (so it doesn't take up much room and doesn't look weird in the kitchen), and I've used it for longer tasks when I can't handle standing for long periods. Got me through making deep fried mac n cheese... and that was quite the task but well worth it.
  18. Never passed out anyplace really horrible (usually at someone's house), but passing out with my pants around my ankles and waking up in the bathroom with my friend asking if she should call 911 was pretty embarrassing.
  19. Honestly, when I feel really, really crummy... I smoke some weed. It's legal where I live and the guys at the dispensary are really helpful. If it's legal there, it is worth a shot... but the general advise I've gotten is to avoid sativas because they can worsen tachycardia. I'd also suggest avoiding high thc strains and go for something with some cbd. CBD will reduce the psychoactive effects (the high) and is also anti-inflammatory. A 1:1 ratio may be a good place to start I also had a long conversation with one of the bud tenders about terpenes (they effect the smell of the bud), and I have generally had luck with cannabis that has more of a citrus smell... and find that those with floral smells really wonk me. You might also try laying down with a cool rag on your head and try to eat some crackers or take some rolaids (they have magnesium as well as calcium). Or, if you can stand it, a cool bath (not cold, more tepid) can help you cool down (which in my experience can help with some of the nausea and headache - but may worsen the chills). You may want to take your temp if you have chills though, it's possible you're coming down with something or have an autoimmune (read: inflammatory) process fueling your flare. It's not uncommon to feel like death and run a low-grade fever (1-2* higher than normal).
  20. I was just curious if there is anything else that can cause the blood pooling seen in dysautonomia? As in, both legs, both arms - without any visible varicose veins or spider veins. I've never had a blood clot. I have had one pregnancy (and to my knowledge, chronic venous insufficiency is more common of people who've had at least two pregnancies). I've never heard anyone complain about purple hands or feet following a pregnancy, but then... many women I know tend to not really talk about their health concerns, and activity helps the veins push blood around (I certainly have noticed that as long as i'm moving around my feet don't pool as bad - it takes about a minute of standing still for them to fill and turn an ashy purple). I'm not the most active person in the world but running around after kids all day (I also babysit two kids other than mine) has actually done a wonder on my muscle tone (yeah, I got "mom arms", and them, along with my legs are pretty solid - I haven't had muscles like this since I was a teen!). So... if the concept is that I'm just dealing with deconditioning... I call bs. My syncope is actually worse despite the increased activity, and I never noticed things like the redness or vein bulging from the blood pooling except maybe the last year and a half. I guess my main question is: Is it possible that my pregnancy worsened this condition, and would another cause my veins to permanently dilate more and worsen the pre/syncope and blood pooling?
  21. I'll ask him about it when I see him. We haven't really gotten that far. Thus far he just suggested electrolytes and compression socks. The electrolytes are helping though (not with the blood pooling but with the lightheadedness).
  22. I realized I am pooling in the feet too, it just took longer standing for the color change to be noticeable. I spend a lot of my time on my feet walking, and that helps the blood flow so they only get red in the toes and around the edges (like the bottom and sides of my feet and ankles). After a minute of standing still they turn a beautiful shade of lavender (or a deep purple in the shower). My hands and arms pool all the way to my elbows (it looks like a sunburn). I've just got other problems with my hands and the blood pooling there puts extra pressure my joints. My feet don't hurt nearly as bad as long as I keep moving and take breaks frequently... but my hands basically have to be strapped to my head to get relief and I'm over that. I figure I'll go with the same stockings I wore through my pregnancy (except obviously smaller) which were plenty comfortable (I think they were Jobst brand), but there doesn't seem to be much for the hands/arms. I was wondering if I could wear the lower grade compression gloves (like IMAK) I have now and add some medical grade sleeves and not just be screwing myself over by helping the blood get trapped in my hands? Thanks for the links too! @yogini
  23. Honestly, at this point... I think I'm going to drive myself nuts constantly testing... so I'm going to give it a rest. It's been maddening diagnostics and I don't have the energy for this. I have a neurologist appointment tomorrow. We'll see how that goes. Wish me luck! The neurologist doesn't think it's my nerves that's causing the pain or tingling/numbness (and at this point, I'm pretty sure it's the blood pooling, or connected to thus). I am however curious to see if the results are going to be abnormal again... On the bright side, my symptoms have improved in the last couple of hours (maybe the pedialyte did help, or maybe it's just that it's not as hot). The blood pooling is still really intense though.
  24. I do have days like that. Because of my 1yo son I have to power through it for the most part and take as much time resting as he'll let me have. I don't think it's really bad for you, per se. If it happens a lot it could lead to deconditioning, which can exacerbate POTS symptoms. At which point you may want to take up some light exercise (pilates can be done from a bed) to try to avoid too much deconditioning happening (but I'd talk to your doctor first about it). Exhaustion will also definitely worsen symptoms, so if you're sleepy or feel like you're going to fall over, try to get some rest (even if it's just sitting down for a moment). Listen to your body!
  25. The first thing that comes to mind is migraine with aura. Have you told them about the pain with it? Does the pain come on with the visual symptoms, before, or after? (I think with migraines usually the visual symptoms precede the headache, but can also occur separately (and certain types of headaches can cause eye pain as well)). I'm not totally sure what causes these kinds of symptoms. I have an astigmatism too and I get floaters as well from time to time - I think generally related to a sudden blood pressure increase. Certain autoimmune diseases (which can cause dysautonomia) can cause eye symptoms including visual disturbances, redness, and pain. Sjogren's Syndrome comes to mind, but I'm not sure if that fits your symptoms and it usually involves dry eyes or mouth... and possibly a bunch of other systemic involvement.
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