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cctalk

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About 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.
  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 rec
  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 o
  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
  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
  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
  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
  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 fl
  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
  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 re
  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
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