MissPatient20

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 said that I could drink something with some sugars in it, but then I couldn't have both drugs during the surgery. I'd have to choose between the two because together, they don't work when there's something in your stomach. He's giving me the choice between the Valium and the Morphine. The doctor doesn't know what dysautonomia is. I don't blame him, most doctors don't! So I couldn't ask him a million questions about how my autonomic nervous system might react to this, and he doesn't quite know what he's getting into with me...I mean, I was just reacting to his nurse's perfume and hair products, so I'm worried about what my body is actually going to do when it's drugged! So anyways, I was wondering if you guys had any words of wisdom for me, or if you wanted to share your experiences. Thanks so much you guys.

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 barely made it out of the bathroom and laid down on the floor. My heart then felt like it was racing in my chest, but I still couldn't feel it sufficiently in my wrist. I got some help, and had some electrolytes and fruit. I felt a lot better after the electrolytes. I just don't feel well though today. I feel woozy when I stand and I flushed horribly when I tried to eat again. I have a Bp cuff though and my bp isn't too awful. It's been far worse before. It's running 95/67 - 100/72. Is this normal right before you're going to pass out? Has anyone checked out their pulse before feeling like they were going to faint? Or how about when you're on a tilt table? I put a call into my doctor but they usually think I'm a medical mystery. lol. Thanks!

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 years ago. I developed POTs/Dysautonomia at the exact same time, and became completely disabled and debilitated by the condition 2 years ago. I can really relate to what you're saying Jump. I have SEVERE food allergies, one of them being gluten. They've drastically affected my absorption which has manifested in a massive weight loss and loss of muscle mass. My BMI went from 20 to 14! Now it's 16.8. The interesting thing for me is that my nutrition markers are also normal, just as you said about yourself. I wonder if things like intestinal infections could be an underlying cause. It could cause a snowball effect...intestinal infection leads to chronic digestive issues...which leads to nutritional deficiencies...which leads to fat and muscle loss...which ends up leading to issues with blood pressure and heart rate? I know that I have chronic infections. I just can't seem to get my body to a place where it can tolerate treating them. Every time I try, the die-off/herx reaction causes a worsening in blood pressure and heart rate issues...so severe that I end up in the ER. I just wonder if I ever end up getting through treatment if my POTS and dysautonomia will be indirectly affected (for the positive). I'm interested in those of you who noted having a BMI below 18...any of you want to chat? I'd love to compare notes.

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/

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?

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 ordeal) in 6 months. Thanks again for your input everyone.

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?

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.

What is the treatment for it?

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 about to keel over..and I'm going to have to call 911 4 times a week! So thank you for sharing your experiences because it makes me feel less like I'm about to die. Vasoconstriction makes a lot of sense to me! I can barely feel my pulse today (and am having periods where I can't feel it at all), but my blood pressure was okay for me (100/64...it's usually 85/65-95/650) when they checked it. Can that cause your pulse in your neck to be hard to detect as well? I'm having an issue with that too! It's very odd..I can NEVER feel my pulse on my left side...but I can usually (when im not like this) feel it on the right. What gives? Thanks for sharing your wisdom you guys. I'm new at this. It's scary!

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.

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'll check my blood pressure and the numbers will be super close together, like 90/70 or 80/62. I'm not even on my feet when this is happening! I'll also get surges of a rapid heart rate, even when I'm not moving. My heart rate will sometimes shoot from 50 to 140 in a matter of seconds, when I'm not even doing anything! It feels like anxiety or a heart attack, or an irregular heart beat (like atrial fibrillation), but I'm not panicking and I have had normal EKGs. What the heck is that? Are there meds for that? I believe it stems from central and autonomic nervous system disfunction...so would like an SSRI help? My doctor prescribed me Xanax but I'm too afraid to take it, because I react to EVERYTHING I take. He also gave me DDAVP to see if stopping the urinary frequency would bring my blood pressure up, but I reacted negatively and my blood pressure actually plummeted at night. Thanks for the input everyone

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 to anyone? Everyone was so freaked out, including the doctors! Potsgirl, my situation seems somewhat similar to yours. I don't fully pass out either. I get stuck in this awful phase where I feel half conscious and half not, and I start to panic. Ick. Do you have a specific diagnosis? To answer your question, I'm in California, but I have a poor form of insurance where I can't see anyone that I want to see I'd love to hear more input from others! Thanks!

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 to 140 bpm in a matter of a second. Can anyone else relate? I have a ton of questions, and don't even know where to begin. I've gone through a lot of the links and read a lot of things over this past week, and I've learned a lot, but it'd be great to be able to relate to some of you and compare symptoms. I'd just love to hear from anyone who has symptoms that resemble mine. Along with my symptoms, I get this awful impending sense of doom...like I'm about to pass out and die. UGH! Anyways, if it's okay with you guys...can I post my questions on this thread, as I think of them? My brain is in a million places right now because I just had another episode where I felt like I was going to pass out and my heart felt weird and I couldn't breathe, and when I went to go feel for my pulse in my wrist I couldn't even feel it. That ever happen to anyone? It freaks me out...because I wonder if I do pass out, if anyone goes to feel for my pulse, they'll think I'm not earth-bound anymore! Anyways, I'll stop rambling and let you guys post your input thus far Thank you!