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cctalk

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  1. Thank you ANCY! You know, I actually didn't even think of that and that makes a ton of sense. They've been wondering actually if my potassium is going too high or too low when triggered by certain events like stressful exercise so that makes sense. I'm going to mention it to my neuro. I've also noticed my night sweats are also a lot worse and they've done that several times over the past year. It could be that I'm taking the magnesium and then sweating a whole bunch so I'm, like you said, loading up on one single electrolyte then sweat is depleting the rest and they then are really unbalanced... Thank you for the input!
  2. hi guys, Been suspecting for a few weeks now that when I take my magnesium before bed I actually wake up feeling the worst and have worse days...I've been averaging taking it every 2-3 days. It's a good version of magnesium called neuromag and the active forms are all chelates magnesium malate, l-threonate, and lysinate glycinate. I started off and on taking magnesium even before we knew I had POTS and other things because my magnesium levels were always very low, usually a point below the normal but obviously not enough to kill me. I never noticed it making me feel worse until I started recently taking it again within the last 6 months and I did so as suggested by my neurologist as he said it can sometimes help POTS patients and also help me with my muscle fatigue/cramps/restless legs from neuropathy. But it's now consistently making me feel really sick like I have the flu, my muscle weakness is worse, and my tachycardia is through the roof, almost like maybe my BP is really low. The other morning I immediately fainted and almost threw up and was covered in a cold sweat and it was the morning after I took the magnesium dose before bed. Does anyone have any thoughts?
  3. So I had an echo done at a pretty large medical teaching center and it was sort of like that too! Weird little things that they mentioned were off. Then I went to Mayo and when I showed my coordinating doc the report she was like, well those aren't really LITTLE things, we need to redo the echo and see what's up. And then of course after a 2 hour echo at Mayo (vs a 20 minute one previously) everything was all fine and dandy!! I don't know how much this holds up for everyone, but Mayo told me they really are trying to change the way everyone does echos around the country because they are kind of all over the place with technique and results. So I guess what I am saying is maybe get a second opinion? Or at least another read of the echo by a different cardiologist? Just to be sure!
  4. Thank you for that! Yeah I did a little bit of research. Even though I opted out of diving last month, I think now that I am able to control my BP a little better on medication it is more possible. I met someone with POTS who is actually a rescue diver so she pretty much said the same thing. I just love to dive. But for now it's just a fun hobby. I want to take a dive photography class and I think I'll be happy just making sure I'm safe if I decide to dive. I actually may talk to my allergist because he is an avid diver and he may be able to provide more medical input as well.
  5. Thanks to you both! I do. I don't have a cardiologist currently though because I didn't think I needed one nor has my main doctor who is a neurologist suggested one. It almost feels muscular so I'm going to talk to him about it first. I'm wondering if it has to do with any more nerve damage or something. It was preceeded by about 2 months of progressive intense muscle spasms/rippling movement all over my chest, the sides of my ribs, and all over my abdomen. So I'm sort of wondering if it could be like an internal muscle weakness in my breathing muscles or something. I'll have to try the paper bag trick! The first time I googled it I basically saw everyone saying it was anxiety so you hyperventilate but google doesn't do you much good when it doesn't know that you have actual real medical problems going on. And I know what anxiety-not-breathing feels like! Completely different. This doesn't make me panic or even get nervous I actually get really really tired haha. It's mostly just uncomfortable.
  6. Okay, I hate whatever this new feeling like I'm not actually getting a full breath thing is. It happened maybe a couple of other times over the last few months but it was usually only when I was lying down or walking around for a long period of time and felt very fatigued. And it would go away after a day or two. It's been two weeks this time and it actually took me a few episodes to notice it was my breathing. I just thought I was having some weird stomach issues because it felt sort of like my chest/diaphragm was full of air, that achy kind of feeling you get when you're hungry. Then I began yawning uncontrollably, almost like a reflex, every time I took a breath. I yawn so much when I get this feeling that I can't even get a word out and my eyes water to where it looks like I am crying! And I can't stop yawning until I get a full deep breath! And then it repeats itself. That's when I realized I wasn't actually getting a full breath a lot, or it at least felt that way. It's been happening every day now. Sitting, laying down, standing, walking around, any activity and it will just hit me really randomly. Sometimes it starts as soon as I wake up and I deal with it all day. Other times it happens mid afternoon and continues on into the night. I haven't really had dizziness issues since starting midodrine and mestinon so I'm bummed because not only is it uncomfortable to feel like my breaths aren't satisfying, if I can't yawn big enough or get a full breath fast enough I get super dizzy like I'm not getting enough oxygen and I feel like I am going to faint. In general I don't breath fast. I actually feel like my breaths are really slow. And I haven't been noticing tachycardia as long as I take all my meds as scheduled. Does anyone have any advice/thoughts or similar experiences? I don't have chest pain. It literally feels like I can't get enough oxygen. At first it was just annoying and now it's really making me feel groggy and dizzy.
  7. Does anyone else just take cool/cold showers? That's the only reason I can every day, if I want to. And I also NEVER shower in the morning...I stick to showering at night. Baths for me are actually worse though...unless the water is cold. And no one wants to take a cold bath!
  8. I am now on Midodrine and Mestinon but for a little bit the Midodrine was affecting my bladder as well. And I already had had a diagnosis of "overactive bladder" before culmination of things and an actual diagnosis, so I just wanted to ask you how long she has been on Midodrine and what dose. I would say for about the first 2-3 weeks I was retaining urine and it was difficult for me to go/urgency, etc. But because I had had those problems off and on for about a year now I waited to see if it would subside and it did. Eventually the midodrine has now actually helped me get rid of fluid I retain normally. But if Midodrine really doesn't work at all, I actually really like Mestinon so far. It is really new to me but it is probably the most well tolerated drug I have tried so far. So you may want to ask about that one!
  9. My blood pooling or whatever it is is really bad...like the minute I take off my compression pants or "binder" and I am still being active I literally look 7 months pregnant and it hurts. It took me a few days to get used to compression around my waist because I used to be the same way and absolutely hate anything tight around my waist or stomach. But I swear as I have worn my compression around my waist for the past 7 days now it especially helps at meal times. And if I forget to wear it, sometimes I can catch my stomach bloating and run and put it on and it starts to calm it down and I guess push the blood somewhere else. I haven't been back to the gastro since my POTS/other ANS diagnosis so that is my plan after I get back from vacation. It's just going to be a struggle finding one that is autonomic savvy I'm sure... Anyways, what I did for my abdominal "binding"/compression is literally went to Nordstrom and bought two pairs of TC boyshort waist control compression shorts. So far I think they are enough compression to get me through for now. I also grabbed what they call a "waist cincher" also by TC brand that is essentially the same exact thing as any abdominal binder you'll see on the medical websites and whatnot. Another piece of very sturdy and compressing spandex but it is ribbed sort of and framed, just like a binder, and really soft. Again, it takes at least 3-5 wears to get used to it. And I would suggest wearing it for 2 hours first. And then maybe a break and then again for 2 hours. It also helped me immensely on my flights I just took to Hawaii. The only thing I don't have yet is actual compression hose and/or stockings. And I really needed those because my legs exploded on the plane and were so swollen I couldn't even wear my shoes for hours after landing. Has anyone had any luck getting actual medical compression garments fitted and then medically accepted by insurance? My dad has lymphadema from cancer and he has them. I have lymphadema as well from my lymph node dissection in my chest/lungs from this past december...so I am hoping with BOTH POTS and lymphadema stuff I can maybe get actual compression items fitted to my body... If anyone has any tips let me know! CeCe
  10. At least you do still get horses as a part of your life! On the ground or not, they are absolutely magical creatures when it comes to helping us heal. I think, at least. The newly added EDS for me is what will probably also start to impede more on riding. And, by no means am I regularly riding. I kind of reward myself. Like a splurge on something nice except it's just an opportunity to get really dirty and smell like horse and feel horrible for a day at least. Worth it occassionally! But yes. Sometimes I have wondered if having ridden for so long thus having extremely strong legs and pelvic floor muscles if that is what was helping me sort of keep the full blown dys stuff at bay for a long time. Because before I had little bits of ANS symptoms here and there for a long time preDX and certainly when I went to college I was essentially ending a 12 or so year career of riding every day for sometimes hours which was a lot of my exercise. Coincidence or not, I seemed to decline very close to quitting riding like that. The EDS is really new for me. I've dislocated about every joint in my body sometimes without knowing it until I would go see a PT or a LMT and they would point out that my wrist/thumb/ankle/elbow...etc was "a little out of place" and they would usually pop it back in. A couple times the shoulder dislocations required ER visits. I also broke 11 bones as a kid from just tripping/being clumsy. Sometimes two bones at once. Yet no one really thought of it until this March I turned my head, literally, and ruptured my c3-c4 disc centrally which was excruciating. And was DXed with cervical osteoarthritis/facet joint arthritis. With everything else my rheumatolgosit is who thought of it after he realized how hypermobile I was. So I empathize with the EDS affecting riding. It certainly I think will start to more for me as well. If you don't mind me asking though, what have you found is best for managing the EDS symptoms?
  11. I answered what best fit based on what was up there...but I wanted to add a little bit. For me, any upright exercise not in water or a pool is absolutely horrible unless it's just a light walk and only when it is cool so usually the evenings. My fluid retention/blood pooling gets 10x worse with upright exercise. My new doctor actually just told me to avoid running and any upright exercise period. This could be because of small fiber neuropathy...but has anyone else been advised to avoid this type of exercise? Or notice that they specifically get worse with upright exercise? On my best days I swim for about 30 minutes. I think anyone with access to a pool even 2x a week should do this. It has been imperative to me getting aerobic exercise while staying cool and it is easy on your joints. I also have yet to get any sort of blood pressure change or presyncope in the water. Only when I get out. I definitely do not overdo it. Every day is for sure very variable! Don't get me wrong, I still get extremely worn out even just after 20-30 minutes in the pool of intermittent slow laps, treading some water, doing kicks, etc. By far my worst after exercise symptom is extreme muscle weakness that borders paralysis to a point and tremors/spasms. I usually can't immediately walk or my hands shake so bad I drop everything I try to touch. My arms will be so weak I can't even shrug my shoulders or hold them up. And, I am almost positive it isn't bceause I am overdoing anything. Sometimes this will even happen after I carry a few bags of groceries from my car into the kitchen. Does anyone else have horrible muscle weakness and cramping/spasming? It even affects my neck and mouth muscles to the point my lips quiver and swallowing can be a struggle. It's hard to explain I guess. At points my neck muscles twitch and spasm so much from weakness from exercise (or even driving, or a few hours at a computer holding my head up) that if myself or anyone places a hand on the front of my neck/collarbone/throat area it feels as though it is constantly rippling and vibrating. I also get discouraged/frustrated that it is so up and down and inconsistent. I felt like before ANS stuff happened I had normal response to exercise like strength increase, energy increase, muscle mass and tone increase, etc like you would expect if you were exercising rather consistently. For example, when I began running I was able to increase incremements very frequently until I reached my goal, without major backtracking. Now it's like even though I make sure I am continually exercising 3-4x a week and for most parts I am physically moving around a good portion of the day but I can't seem to gain any strength or be able to add much to my "workouts". I don't notice any normal benefits you are supposed to notice from even mild exercise! Like breathing more efficiently or increased muscle mass or adding time increments to a swim or yoga session. My strength and exercise ability is so unpredictable. For maybe two days I feel okay and like maybe I am gaining progress then the next time I am back at square one.
  12. Well that is actually very relatable to me! I have also ridden horses essentially my whole life starting as a toddler. So, about 17 years. So yes I do totally understand! I have started to get back on. Mostly doing very light riding. While at college riding changed from competitive hunter to just riding trails with a friend every week anyways so I had already sort of began riding more infrequently. So when I developed POTS even though I didn't know that is what it was at the time and I was already so sick from everything else I would literally faint just lifting the saddle up. I also wasn't really fond of being on top of a 1200 lb animal that does have it's own brain and can decide to spaz any given moment while I was feeling so weak! On that note Katie, I'm sure you constantly hear about how having leg strength is good for POTS etc, so I have also been thinking about gradually trying to get back in the saddle as exercise. It seems to me this is a form of "recumbant exercise" and could help with bloodflow and prevent blood pooling...Of course like you said the presyncope is not desireable while on top of a horse. I'm hoping if I just ease back into it maybe I can do a little here and there. I will say I am able to sort of detect if I might faint a lot better now than before. And I find that if I am in the same position, like sitting, even if I am exercising like on a bike/horse, I do not get nearly as bad of fainting feelings. I guess I'm hopeful. When I have ridden I make sure I am never alone just in case and then that someone is there when I hop off because that is the time where I am almost garunteed to pass out or almost pass out and feel horrible. So I have sort of adjusted and I literally have someone at the reigns while I gently slide off and sit immediately on the ground!
  13. Thank you Katie! Yes, I know I realize that. I just find that they are not typically straightforward when I ask, and when I did ask the other day, about questions regarding activities or certain decisions. I guess that is why I was wondering not really anyone's opinion on this decision for me necessarily but more of a general is there anyone here that scuba dives with autonomic dysfunction and/or how is it that you approach decisions regarding activity choice when your doctor essentially leaves it up to you? Sorry, I should have phrased this more in that way to begin with.
  14. Hi guys... I am new here but I have had POTS officially since December of 2014 and really for about a year with autonomic dysfunction all my life. I actually had a tumor, a T1-T2 Schwannoma nerve tumor IN my autonomic nervous system removed at Mayo in December which at first doctors thought was my cause of dysautonomia but now we realize I actually have a gene mutation (almost positive) that caused all of it. So a hereditary form of autonomic dysfunction sort of. I also have just been officially diagnosed with Ehlers-Danlos Syndrome. Anyways, I love love love scuba diving and haven't been in a year...I am about to go on a trip to hawaii and I want to dive really bad. I've never really had the symptoms I have now with full blown horrible POTS scuba diving before...so the rational part of my brain is saying, no of course don't scuba dive, but my adventure-loving irrational part is saying just go for it. Do any of you have any thoughts? I did ask my autonomic neuro the other day and he wasn't super adament about me NOT doing it...he more like suggested against it and then said he isn't an expert but the consequences would be bad because we don't know if my blood pressure/heart rate would remain the same even if I came up with protocol and took all the proper precautions to not have decompression sickness. I guess I honestly just want to hear opinions and then maybe suggestions about what you guys do to sort of adjust activities that you love to do to fit in with having dysautonomia all while being safe. I am currently on midodrine (just started) 5mg 3x daily, vyvanse 60mg as needed, diclofenac sodium 75mg 2x daily, tizanidine 4mg as needed (muscle relaxer), magnesium, zyflamed (anti-inflammatory vitamin supplement). Thank you all! CC
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