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MissPatient20

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About MissPatient20

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  1. Hey everyone, I have surgery scheduled for Monday morning to have a port-a-cath installed so I can get things like nutrients, fluids, IV antibiotics, etc. I'm quite nervous. I'm in bad shape. I'm also reactive to EVERYTHING around me and that I put in me...drugs, chemicals, smells etc. Everything send my autonomic nervous system into a frenzy. Have any of you undergone surgery, particularly this procedure, with issues like this? I'm having local anasthesia and they use two drugs to kind of "sedate" you during the procedure, but when I was trying to explain my hypoglycemia to the doctor, he sa
  2. Hi everyone.. Just wondering if this has happened to anyone because it shook me up a bit... I woke up this morning and got out of bed to go to the bathroom. I noticed feeling a little light headed/woozy upon standing, but I still made my way to the bathroom. I proceeded to try to have a bowel movement (I know, TMI). Then when I stood up again, I felt light headed and weird and decided to take my pulse. It was EXTREMELY slow. I've never felt it that slow before. Is that normal right before a person is going to pass out? Then my pulse got really irregular, like erratic with double beats. I bare
  3. I agree with you guys, that BMI isn't necessarily an accurate picture of a person's nutrition or health. I do think it could be a marker though. That's why I added the second question. I find it to be very interesting that so many people suffer from intestinal issues (according to the answers to the second question), so significant that it impacts their nutrition and their weight. I really believe that this illness can go hand in hand with that. I've struggled with chronic constipation and delayed gastric emptying all my life, but didn't begin to have weight and nutrition issues until about
  4. Weight is a huge issue for me. I'm severely underweight and have terrible GI issues. I was just wondering if anyone else has this issue and how it has affected their POTs or dysautonomia. I think it plays a huge role in mine. Please feel free to comment and elaborate on your poll votes and information. If you don't know your BMI, calculate it here: http://www.nhlbisupport.com/bmi/
  5. Hey everyone, Do you all get irregular heart beats and palpitations for extended periods of time? Lately I've been getting this and it really bothers me. Sometimes, it's really weird, I'll feel like my heart is beating irregularly for more than 30 minutes..I'll feel lightheaded, short of breath etc..then I have a GIANT palpitation and it feels like the palpitation corrected things and I can breathe again. Does anyone experience weird episodes like that?
  6. Thanks again for responding everyone. Between what my doctor said and what I've read online, I'm still a little freaked out. It does help to know that I'm not alone in this whole "I have no pulse" thing. It's so good to hear that others have experienced this and that you're ALIVE! It happens around the same time every day now and lasts for about 3 hours. I'm wondering, for those of you who experience this, how disabled/debilitated are you? I'm mostly bedridden now and 100% housebound. I haven't been able to leave the house (aside from being loaded up to go to the doctor, which is quite an orde
  7. After poking around the website Mack's Mom listed, I found information on treatment and was delighted to see Ketotifen on the list! I'm taking Ketotifen for suspected "Leaky Gut Syndrome" because I have such bad food sensitivities/allergies that I am down to only being able to eat about 8 different foods. But what I noticed is that if I forget a dose or take less than the day before, the next day my POTS/dysautonomia is MUCH worse! I wish I could find a doctor who knows about this disorder! I don't think my PCP would even test me for it...but if I ask...what should I ask my PCP to test?
  8. What a coincidence!!!!!!!! I came here TODAY because I had my blood drawn YESTERDAY and my albumin came back high! How funny that I came here to ask about it and there was already a post on it! My doctor is stumped, but then again my doctor doesn't know anything about POTs/dysautonomia. I also drink loads of water and my sodium and potassium tested fine...so it seems like I'm not really dehydrated...yet my body is acting like it is.
  9. Thank you for your responses everyone! This does make me feel better, because I just got home from a doctor's appointment that ended up really freaking me out. I told my doctor (who is not dysautonomia literate...she doesn't know what it is...don't have insurance to cover one who does) about this issue, and she was quite alarmed and said that I need to call 911 when this happens because it could mean that my veins are collapsing or I'm going into cardiac shock or something of the sort! I left the clinic feeling far worse than I did when I arrived. I thought, if this doctor is right, then I'm a
  10. Hey everyone, I've not been doing well lately. When I'm feeling truly awful (many times a day), I grab my wrist and try to feel for my pulse, almost just to make sure that my heart is still beating. What freaks me out is that when I'm REALLY bad, like today, I can't feel it no matter how hard or long I try. My pulse must just be that weak or indetectable. I get so scared... Anyone else? Thanks everyone.
  11. Hi everyone, I have a question (still new at this diagnosis, not-so-much with my lyme diagnsosis. This is secondary to lyme). I do have issues with standing up sometimes, where my blood pressure will drop and my heart rate will shoot up, but I also have a more debilitating issue where my blood pressure and heart rate will go crazy despite laying down, sitting up, or standing. Position changes often have nothing to do with it. For example, I'll be sitting on the couch, leaning back in a nice propped up position, and all of a sudden I'll feel like I'm going to pass out or lose consciousness. I'
  12. Thanks for responding everyone! Firewatcher, it's morning now and you basically described what's going on as we speak! My mornings are awful. I wake up with tachycardia like you describe, and my blood pressure is kind of low. I think it's because, like you said, we have hypovolemia. Maybe since we aren't constantly drinking during the night we kind of become dehydrated. IV fluids usually help with this, but something strange happened to me last time I got them. When they began infusing the fluid drip, I went straight into tachycardia! My heart rate shot from 50 to 140! Has that ever happened
  13. Hi everyone, I've been diagnosed with lyme disease and tentatively with dysautonomia. I have SO many questions about the dysautonomia diagnosis because the symptoms quite frankly freak me out! My doctors don't seem to know how to treat it though, and can't answer any of my inquiries. Basically, my blood pressure is erratic and my pulse pressure is always extremely narrow. My numbers "squish" together. My bp ranges from 80/60 to 110/80. Most often though it's 85/65, so my pulse pressure is very narrow. I also swing from bradycardia to tachycardia rather quickly. My heart rate can go from 50 bpm
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