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Everything posted by ironsc

  1. Hey Ernie! Ick, that sounds terrible! I couldn't get out of the hospital fast enough - I just wanted something to keep the water down, then I hobbled out. I'll have to be extra careful of viral attacks and dehydration from now on, after seeing your experiences and others here. Amazing just how fast they can really get at the body. Cam
  2. Heylo everyone, I've been rather absent, but something very weird happened to me back in mid November. Did any of you get hit by this weird virus? At about midnight, I started to get ill to my stomach, like I hadn't eaten for a couple days. That annoying hunger pain mixed with nausea that makes your legs go weak and shaky. I decided to get some water and saltines, but an hour later? At one A.M., I vomited fiercely. The water, saltines, and bile-like material. I hadn?t done that in many, many years? so it was rather shocking and startling. I figured I might have eaten something bad, or maybe it was just a fluke. But 5 minutes later, I had to run back and had terrible diarrhea? twice. After that, I knew in the back of my mind I?d end up in the hospital, but I tried everything I could to calm my insides down. I ended up vomiting 12 times and diarrhea 18 times in the span of 1 A.M. to 8 A.M. (7 hours), and could not keep water down at all. When I got to the hospital, my HR was bouncing between 130-160 lying down (and on the beta blockers I take), and BP was 157/81. What was odd, another lady came in with the same thing as I, and it presented at the same time with the same symptoms. Although, she was terribly worse off? huddled under warm blankets and asking for tons of pain meds while we shared a room there. I hope she?s ok. They put two fluid bags in me, and gave me a lot of anti-nausea meds (I can't remember what it was... started with a N, I think. I was way too confused to remember). They ran some labs on me, and the guy taking care of me said my WBC count was ?impressive? ? it was 18 (18,000). He was probably pulling my leg on the impressive part to get me to laugh. He was having fun poking my purple/blue feet and hands to test my circulation. I think this was the first time he saw the weirdness of POTS. Even after all that, I drank a ton of water at home, and it was a full day before I could even urinate with all the water I was drinking. Final call was a sudden viral bug that had severely dehydrated me in 7 hours. It was very scary when I look back on it. I?m thankful for the emergency medical system ? without it, being unable to keep water down and violently expelling all my body?s water, I would have been considerably worse off. I feel like I?m still trying to recover from it. POTS and dehydration definitely do NOT mix. Very scary how fast it came on and put me down. Anyone else have something like this? It was shocking how fast it dehydrated me. Cam
  3. I got plates on my car, and a tag for when I'm with friends/folks. But I rarely use it, unless needed. I always force myself to walk as far as I can. As far as people giving you looks... just ignore those peoples. They're typically jealous (I actually had someone complain that I had a tag, and he didn't for his bad back... and made a huge fuss over it), or making assumptions in their head to be angry with people just 'cause they're sour. Definitely lock your doors, like lalalisa said.
  4. Male, 6'2", 190lbs I look like a viking.
  5. cardiactec, My current neurologist, a specialist in POTS and ANS stuffs, just wants to tackle each problem on their own after stabilizing my heart. This year alone, I've seen two cardiologists, a cardio EP, and two neurologists on the heart/POTS issue, and all agreed that in the question of the chicken and the egg, POTS came frist then the heart damage came second because of the POTS. But I'm just repeating what they've been telling me. Are they seperate issues? I think the possibility still exists. For now, this is what they all agree on, but it doesn't change my treatments in the end. I really wish I could see Dr. Grubb, though. Not only is he a cardio EP, but he is a, if not THE, POTS expert. Cam
  6. I have the Omron HEM-650 (wrist strap), and it's... finicky. It is really particular about how you hold your arm, and will complain a lot. It also isn't very good at taking readings when your stats change a lot (especially BP). It errors out when you have a VT or PVC during the reading, too. It even errors out if you have a noisy murmur/vibration. However, that being said... the BP/HR readings that do come through on me are accurate, and were confirmed in my doctor's office. It just doesn't like it when conditions aren't perfect, and will complain. I used it to monitor my BP/HR for my doctor while I was titrating my beta blocker. I only use it when I'm on the treadmill, now. I'm also surprised how long the batteries have lasted in it. Cam
  7. I've never gotten one. I prefer I give my immune system a work out and some exercise, if I do get the flu. And I hate needles. The only time I'd consider getting a vaccine is if there was a potentially epidemic deadly strain of a disease, much like the influenza outbreak in the early 1900's. My mother and father got them a couple years ago, and I haven't seen any reaction to it. But they still got influenza (type C). They pretty much don't do it anymore. Cam
  8. I ended up damaging it primarily because of my stubbornness to ignore symptoms. I used to bike ride about 10+ miles a day (7 days a week!) to class in any weather - that got me a heart attack one day when it was cold and a light mist/rain. Used to chop down dead trees with an axe in the blazing sun while it was over a hundred in the middle of summer - that got me another one. But, I also have really high blood pressure, which some doctors seem to contribute to my lack of feinting. So I really didn't have any frequent, obvious negative sanctions towards my actions. Basically, I ended up damaging it because I'm at 200bpm+ while doing these things for prolonged periods of time for many years (in addition to a "resting" blood pressure of 140's/100's). This wasn't something instant... it took years and years of damage to get to this point. We're talking 200bpm+ for hours almost every day for years (like mowing the lawn, running/biking, etc). Ever since my first heart attack, my heart beats faster than normal when resting, it has a murmur that comes and goes, it has painful rythym issues (nonsustained VT's), abnormal EKG with right axis deviation, and an odd QT interval. I think the worst moment in my life was when I read my cardiologists notes that I got copies of... "I think the prognosis for him is very poor..." That finally woke me up. I suppose there's really two ways of looking at it - POTS causes the standing tachycardia, which eventually caused the heart damage because of my ignorance and stubbornness over many years. So, I suppose two causes, one effect. Low ejection fraction? Well, my left ventricle was estimated 65%-70% / calculated 69%, but I don't think that's low. That's all I can find in my cardio notes on that. I was classified as Class III on the New York Heart Association progression of Heart Failure by my POTS doctor. Another wake-up call. But I'm probably a statistical anomoly in all this. But it's certainly a lesson in not being extrememly stubborn. It was diagnosed using just holter monitors, heart ultrasounds, tilt-table, and treadmills. A nuke/treadmill was done, too. The heart disease/damage was diagnosed 4 years before the POTS, and listed as "unknown cause of damage" (not at birth, not viral). Again, I'm probably just a fluke in all this, and a lot of extremes are in play. Even then, POTS might only be one of many contributing factors, but it did contribute. This is just what happened to me, and it certainly isn't the norm (then again, what is?). I still don't think it's the full picture, but this is what they've told me. Cam
  9. 1. Cameron! 2. 27 3. POTS, Organic Heart Disease 4. 27, 24 respectively. 5. Colorado!! 6. At Worst: Heart attack (only happened twice), Blindness, sleeping 20/hrs a day. 7. At Best: Mild headache, some GERD, occasional random dizziness. 8. Doing nothing / ignoring it. Anti-depressants, and sleep aids. 9. Beta Blocker, non-amphetamine stimulants.
  10. My POTS has caused "Organic Heart Disease", and was explained by my cardiologist that there is actual organic damage to my heart from the untreated POTS and I'm at very serious risk of having heart failure in 5-10 years. Because I ignored my problems and overdid my self (and never really feinted, too), I ended up doing terrible damage to my heart because it was always beating too fast/hard all the time. Thankfully, my doctors are helping me protect my heart from further damage. Both with medications, and hitting me with a wiffle-ball bat everytime I over-do myself. Cam
  11. My main hobbies... I get Netflix, and really hit that a lot. I also read a lot of books, especially from my favorite author - Terry Pratchett. He just came down with Alzheimer's, which is absolutely tradgic. He said he'll do maybe one or two more books, but after that the illness will have destroyed his ability to continue producing his wonderful novels. I really am praying all I can for his wellbeing, and it really was sad when he announced it to the public. I'm also a computer gamer. Been that way for most my life, really. I have a nice computer chair (combined with my hypermobility and a pillow) to make sitting/laying here completely comfortable. This affords me a lot of time to keep my mind active with gaming. I usually have atleast one active Massively-Multiplayer Online Game subscription, and a couple other games for when I like something different. Definitely prefer the roleplaying games with lots of neat dialog, puzzles, and adventures (almost like living a novel!). And really, my college classes are quite entertaining, too. I love learning new things and applying it. Cam
  12. I have to second what MelissaReid said, because I just saw this and I'm livid. Follow up on this, and persue any and all means to have this ignorant officer repremanded. Cam
  13. I'm in shock at just how terrible some people can be. It's terrible and so sad. I was just handed the blue "badge" and plates last week, and I really hope I don't run into intolerant peoples on campus. They can really hurt a person a lot, emotionally. It's bad enough having younger people shout "mama's boy" or "freak" to a disabled person that can't live safely on their own. I hope everything works out well for your son, and that jerk gets a serious sanction for his discrimination. Best wishes, Cam
  14. It's a ninja, especially considering that the file is named "ph34r.gif" ('net l33t speak). Some of you may already know this, but "ph34r" is the word "Fear", or more to the point of "Fear Me" with a ninja outfit. It's just 'net pop culture stuff. Unavoidable if you play popular online computer games. Cam p.s. sorry if that was stating the obvious, it's all rather common now unlike ten years ago.
  15. No, I might need a diagram or cheat sheet. Speaking of cooling vests, Rachel, how long do they last for you? I've been thinking about using it to help with my overheating at night, but I doubt they're meant to be used as such.
  16. That's so cool! Glad you two had a great time together. I guess I should try the Meet Others program here in Colorado. Must overcome shyness... Cam
  17. Thanks for sharing that find! I'll be certain to listen in on the 26th. Maybe someone from here will call-in! Not me... far too shy. Cam
  18. Heylo, I'm not sure of any Colorado Law that would bar it, but I haven't been told by any doctor I cannot drive. I usually cannot drive half the time - I make a judgement call, erroring on the side of caution, and I never drive alone. Usually my mother tags along, and I may drive small portions of the trip. I don't really have near syncope when sitting and driving, but the one thing that stops me from driving is pain and muscle fatigue. After about 20 minutes it gets hard to sit up, use the pedals, keep a safe grip on the wheel, and concentrate on driving. My muscles just give up. It really bothers me to take time away from my mother's life just to get somewhere. Cam
  19. Maxine, You have all my good thoughts and energy for your coming ordeal. I wish you the best, and a speedy recovery! Hugs, Cam
  20. Heylo, I'll keep this a short (but sweet) story for now. Back in February of this year, when I had a massive flare-up of my undiagnosed POTS, and then was hit with Influenza Type A, I went to see my completely new doctor at the college campus hospital. I was nervous as heck when I first started seeing her, because of the negative experiences I had with my PCP during childhood. But she turned out to be the best doctor I've ever had, in the end. She was very caring, listened, and actually included me in the dialog of trying to find out what's going on. She actively engaged me in the discussions, thought out loud in case I wanted to add something, and took everything I said without one shred of disbelief. While she didn't know exactly the problem, as she's only a PCP and not trained in any depth of one subject (more of a jack of all trades), she did a perfect job for a PCP - identified where the problem might be coming from, and sent me to that specialist for a closer look. But one of her more angelic qualities has to be the fact that she will not let me walk out of that room without a smile on both our faces. There's a program at this hospital called "Caring is Contagious" - I filled out the form with multiple accounts of her desire to go above and beyond for the patient. The form said she'll get an recognition and award, which is the least that she deserves for her compassion. I make certain to thank her frequently for her help, and to know she made a difference in this person's life. Cam
  21. They didn't really talk about it at all, unfortunately. I mentioned to them before the procedure that my heart likes to mimic ventricular tachycardias, but that they are really atrial tachycardias with aberrant conduction, and that it also likes to go all over the place. As far as why they kept asking me about asthma, I haven't the foggyist. My breathing and coughing mimic asthma perfectly (right down to the details and sounds), but I've had asthma tests done (since my beta blocker can cause asthma to get really worse) and they all came back absolutely perfectly negative and normal. I was really taken aback when the nurse said, "So how long have you had asthma?", when I woke. It makes me wonder if autonomic dysfunction can affect respiration in such a way that it can mimic asthma. POTS can mimic IBS, GERD, and a lot of other things, but can it mimic asthma and cause negative result on the asthma breathing test? Maybe it's something else entirely that is going on. You would think that a direct breathing test would pick up a hypothetical asthma mimic from POTS, unless it was periodic or conditional and the test just happened to miss it. That would be a good question for Dr. Low or Dr. Grubb, I suspect. I didn't get to see my GI Doc after I woke, so maybe he'll talk about the weirdness when I see him again on Sept 3rd. He doesn't like to talk with his patients unless he has "something to talk about" (i.e. test results, new problems, and the like). Cam
  22. Nah, I'm not a writer. I'm more of the stereotypical absent-minded scientist type. As far as the colonoscopy prep - it wasn't bad at all. I've had worse flu's, and worse stools. The polyethylene glycol laxative didn't start working on me for three hours, and even then I was pretty much lounging around, reading a book on the couch, and casually making my way to the bathroom every 30-45 minutes. It also came out much easier than my worst stools, with no irritation at all (bicarbonate taking care of the stomach acid, salts insuring no excessive water in or out, and the glycerine making it smooth). I absolutely hated the texture when drinking it, but that just made me chug it even faster. I kinda made a game of it - how fast could I chug 8oz? Didn't work out so well when it was chilled. Brain freeze by laxative. Perhaps my body is more tolerant to that specific prep, or perhaps I'm just easiely distracted with a book. Either way, I certainly don't want to do the prep anytime soon again, but I wouldn't be opposed if it were needed. I think my mother has to do the prep in a month or two, too. Maybe I can time it just right and have her favorite dessert ready on her last day of solid food. Home-made boston cream pie! Maxine, I think I'll smuggle in a hair dryer next time. Good idea! Sorry about the diverticulitis, that doesn't sound very pleasent at all. Take it easy, and thanks for the good thoughts! Cam
  23. James, I only get that in my right pupil. It's always more dialated than my left, especially in the shade/dark. I don't really do anything about it, though. But it does make me look weird at times. Cam
  24. MelissaReid, I'm sorry you had felt so ill on the TTT. I hope you never have to go through that again. As far as relating, my experience was about as hasty as yours. I was tilted up for about 5 minutes. The instant I was tilted up, my HR went from 70 to 180, then settled into the 150-160 for the duration of the tilt. It was very painful, too. The pain started in the back of my ankle, and moved up the back of my legs to my knee, then up the back of my thigh to my back. My legs started to tremble uncontrollably, while my hearing and vision were dulled, and my face/palms/feet started to tingle/"fuzz". My lower legs started turning color - a mottled mosiac of red, purple and blue, and I started to break out in sweat. That's when they tilted me back down, and my heart rate instantly plummeted from 150's to 40-50's. My blood pressure didn't really change much - it started at 140/100'ish, and it went down by about 30/20. And you're not a wuss! You made it through the test, and the data will help the doctors provide you with a good treatment option. It was tough, but it will pay off. Hugs, Cam
  25. I used to get terrible rushes when playing computer games that would cause jittery-ness, rattling teeth, pounding/skipping heart for about a minute. It really limited what I could do in gaming because of the pain. It only happened when I was playing directly against another actual player (either online, or even in-person with a boardgame) in a game, rarely against A.I. or such. I don't get it anymore, though. Either through desensitization or experience, it doesn't affect me much, anymore. It was very annoying and really made me tired and worn out. Cam
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