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Everything posted by sugartwin

  1. I think it's possible they are related to dysautonomia. Specifically the combination of fever (high temperature inside as well as outside the body can cause vasodialtion) and dehydration from vomiting could lead to it in someone with a pre-existing autonomic condition. I'm a little biased in this explanation however because I convulse at the drop of a pin. No doctor was ever able to offer me an explanation so through much trial and error I eventually reasoned that anything causing a sudden and precipitous drop in blood pressure could cause convulsions in someone with dysautonomia.
  2. I've never done well with surgery. My blood pressure always crashes and I always have a period of refractory tachycardia afterwards. I'm not sure if it's EDS or POTS, but I suspect it's somehow hereditary because my grandmother's heart would stop whenever she had general anesthesia. When I had a 45 min. surgery to remove endometriosis it took three shots of ephedrine to keep my blood pressure at a normal level. It's something to do with the gas and the fact that for some reason I can't maintain sufficient blood pressure with a lot of help. My recovery time was a little longer and I had a nice hideous scar (thanks EDS). As far as I can tell people have wildly different experiences under general anesthesia depending on what kind of autonomic dysfunction they have.
  3. It took me a bit, but I think what you were diagnosed with is mild pandysautonomia. Or a mild case of pandysautonomia. Pandysautonomia is used in different contexts, but I think it means a system wide dysfunction of the autonomic nervous system that can be really severe. You can google around, but I've seen it mean different things at different times which is frustrating. Sorry I couldn't help more.
  4. Can you tell me what sort of "episodes" you're having? Because I think they might be similar to the ones I've had in the past based on the medications you mention, but I'm not positive.
  5. I would say POTS is simply a symptom. A super-symptom, but a symptom nonetheless. I think CFS causes POTS, I don't think CFS -is- POTS. Because if it is, I was born with CFS. I've had POTS symptoms since I could remember... as a young girl...worsening as young adult and getting steadily worse as an adult. I don't have fevers, sore throats or swollen glands...signs of infection. I have Ehlers-Danlos Syndrome, which I was born with. POTS to me is like the nephrotic syndrome (although more sophisticated than this). It is a syndrome that has a cause. The causes are diverse: autoimmune disease (like diabetes) can cause POTS, a genetic syndrome like EDS can cause POTS. I believe that whatever causes CFS (XMRV or some other infectious agent) is causing POTS. But a diabetic and someone with EDS and someone with CFS are not suffering the same condition, though they may all have POTS. These syndromes of the disrupted autonomic nervous system (fibro, CFS, IBS, POTS) are poorly understood. I think that conflating them is a mistake, however, because they need different treatment depending what's causing them.
  6. I have also had bad luck with cardiologists. The one I saw inpatient said, "So you've got this thing, huh?" He sat me up to listen to my heart and I got instantly tachycardic and short of breath. He then said, "Do you want to go home?" I was stunned! I thought maybe he didn't understand POTS, but when I read the medical records, I saw he understood quite well. He even ordered IV fluids (as much as I would tolerate) and an increase in Florinef. He knew, but he also found POTS patients too refractory to deal with. I call it the malice of helplessness. The doctors I see, I imagine, are not truly this mean and dismissive to all of their patients...only to the ones they feel they can't help (or FIX.) They will not come humble and apologetic, most of them, so they come aggressive...or dismissive.
  7. I see what you're saying, persephone. The article as written conflates EDS and Marfans with Parkinsons and MSA. I have EDS, small fiber neuropathy and plenty of attendant problems with my ANS, but my ANS isn't failing centrally, This is a crucial distinction.
  8. I call it my 'regular person' drag. On a day that I don't require my cane, I look the same as everyone else, so I try to act the same. Grocery shopping, I note how much easier it would be for me if I could park in the handicapped parking. The elevator is there, but there's no reason why a healthy looking woman can't take the stairs so I do. And on the way out up the stairs...with the groceries. I hide how short of breath I am until the car, where I can recline and pant and sweat to my heart's content. I am very private. When people ask, I tell them, but many times that's the last time we talk. I suppose no one wants to think that their young and healthy could abruptly end. I lived in Chicago for three years but there's only a couple people who I still talk to there. I hesitate to meet new people; I don't want to be in the position of explaining the whole thing if I suddenly start hyperventilating and pouring sweat. I want to visit everyone, but if I get sick, I don't want them to have to babysit me. It's very lonely.
  9. I have no idea what it is, but...you're not alone. I'll be doing nothing in particular (although it usually does seem to happen when I've been standing for awhile) and my mouth will just flood with saliva for no reason. No nausea, no pain, doesn't seem to be reflux related. Just...spit surprise. I know the parasympathetic nervous system controls saliva production, so maybe that plays into it somehow?
  10. Unmedicated, my supine heart rate is from 120-140. Originally it was thought that I was hypovolemic, but after testing it turned out that I just had poor vascular tone. My blood has a hard time getting where it's going regardless of my position it seems. Beta blockers lower my blood pressure, but if i don't have them I go right over 200 after a few minutes of basic activity. I wish there were some other way. As far as I know, it's more typical to have a normal or high normal resting heart rate; the doctors I'\e seen who are familiar with POTS have stressed this to me.
  11. I take 150mg twice a day, so 300mg. I also take Metoprolol, Florinef, Vitamin D and Ultram and Voltaren as needed. My POTS is secondary to hypermobility syndrome and became much worse after a bad virus. It's funny, but I can't even really explain why Lyrica works for me the way it does, but it works so well I can't think of a single side effect. -Yvette
  12. Lyrica worked wonders for me. It did nothing for my pain, which turned out not to be neuropathic pain, but it really decreases my sensitivity to light and noise which is otherwise intolerable for me. Inexplicably, it also does great things for my nausea. Without it, I ended up in the hospital with uncontrollable vomiting. I didn't gain any weight on it and I didn't find it made me sleepy at all. I hesitated to respond at first though, because my reaction is so atypical.
  13. I'm seeing Dr. Fouad at the Clinic. After being diagnosed in the hospital, I did all my autonomic testing a month later. But I won't actually see the doctor until December; that's the frustrating part. I think she's an awesome doctor: very thorough and attentive to detail, but so hard to get in with!
  14. I'm actually set up with the Clinic now, but the earliest I'm able to get in is December. I asked to be put on the waiting list, but I don't have high hopes, honestly. As for treatment you suggested, I suspected as much. I'm on an increased dose of Florinef now, and I just hope it works as well as it did the first time around, which I'm not sure of since now I have anemia complicating things. Ahh...I'm just impatient. Thank you so much for the warm welcome.
  15. I've already written a couple, though they aren't about POTS per se, more about my general feeling of frustration in dealing with POTS, though there are a few lines that would "give it away" to someone in the know. I did my undergrad in journalism! Maybe we should collaborate? I also think that there's a terrible dearth of information on POTS in the media and would love to write an article and put it in a magazine that lots of young women read.
  16. Hi, all. It's taken me several weeks to screw up the nerve to post here, although I've been reading everything, including the back posts. I'm a 29-year-old poet who recently graduated from grad school by the skin of her teeth thanks to (you guessed it) POTS. At the time (Sept. 08) I lived in Chicago and I was finishing my thesis when I caught a virus that made me so ill I was borderline septic when I finally had the presence of mind to go to the hospital. They were thinking that I had meningitis, AIDS or leukemia...that's how sick I was. When nothing panned out they waited until my immune system got back to more or less normal and then released me. Despite that, I got sicker and sicker as the months wore on, developing insomnia, then migraines, then nausea, constipation and vomiting. Going to class became excruciating and at the end of my six hours of seminar I would be drenched in sweat and wincing in pain. Finally I passed out at my doctors office and was found to have a blood pressure of 150/120 and a pulse of 140. I spent nine days inpatient, three of them in the Coronary Care Unit. At the end though, they told me my anxiety about graduation was making me ill, even though I insisted I was overjoyed to be graduating and already had several job leads. They prescribed a beta blocker but I considered to get sicker after discharge and soon got to the point where I could only spend about 20-30 minutes upright before collapsing, passing out or throwing up. It was abundantly clear to me that I was extremely sick, but every doctor I went to drank the kool-aid from the hospital I'd been in and said I was just anxious. I lived alone, and had to rely on friends for everything from cleaning my apartment and bringing and cooking me food. I impressed this to my doctor who continued to insist my problems were all "psychosomatic" even when I informed him I'd been losing four "psychosomatic" pounds a week since I'd left the hospital. The irony was that it was clear to me that even he didn't believe I was mentally ill, he was simply at a loss for what was wrong with me. I'd had an inkling the problem was with my nervous system and asked for a tilt table test. He said, it wouldn't tell him "anything he didn't already know." I narrowly graduated, thanks to a professor offering me credit-by-portfolio and I soon became too sick and had to call my parents to tell them I couldn't live alone anymore. I left everything in Chicago: my friends, my work and my accomplishments. I still get sad to think of Chicago, which burns brightly in my mind, but never to ash. At home in Cleveland, my mother took one look at me and took me to the ER. I'd been experiencing seizure-like events and had an oxygen saturation of 45 at one point. Despite this I got more visits from the psychiatrists than any other doctors. At one point, they forced me out of bed and frog marched me to the visitors area, saying it "looked bad" for me to be in bed so much. After five days of this treatment they were prepared to discharge me, but purely by chance they happened to hold my beta blocker and my heart rate shot up to 140, lying flat. They finally tilt tested me and after 22 minutes I had a blood pressure of 40/30 and a heart rate of 180. I didn't pass out, but the tech begged me to let her stop the test, so I did. That was mid-July. Nowadays I take Florinef, Metoprolol and Lyrica along with occasional Ultram. I still do suffer from convulsions periodically, which drives me nuts, especially since they went away for a couple months after I started Florinef. After a few days in the hospital (again) the neurologist said there was nothing he could prescribe to help me since they weren't epileptic in nature. I've read that some of you suffer from these POTS-y convulsions. Have you found any effective treatment for them? Oh my God, please say yes. I have a lot of stairs in my house, and I've already fallen down them twice thanks to these. Also, is there any particular treatment that works better for people with attendant connective tissue problems? Before I was diagnosed with POTS I was diagnosed with joint hypermobility syndrome.
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