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poppetkazutaka

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Everything posted by poppetkazutaka

  1. Went to the sinus doctor on Friday. When I saw the nurse I unloaded, because I was severely stressed and couldn't take it anymore. Did the same thing on Doctor Salmon and when I got to "and I just hurt all over and I can't take it anymore" he said: "...you hurt all over?" "Uh...yeah?" At this point I was about in tears so the fact that he made that seem significant made me stop. "For about six years now and everyone else tells me its nothing. But I really think it's all related and I need some blood test thingie." "We're going to do an ANCA test. There's this disease process-" "O_O" "...that the body goes through and..." at this point he mumbles and runs his words together because he knows I'm a nut that looks things up and he doesn't want me to get scared and run to the internet but I did happen to get a few words such as vasculitis. So I looked that up. And holy crap. IT FITS. But I'm not going to get my hopes up. But everything hinges on this blood test. However, it takes TWO WEEKS to get it back. The scar tissue. The pain. The neurologic symptoms. The multiple system issues. The sudden worsening after my chronic sinus infection finally cleared. But...it's very frightening. VERY frightening. Because the extent of the pain I feel and the symptoms might mean it's gotten that bad. I've already lost a sinus and a gallbladder, and I'm starting to have some kidney function problems and other gastro issues. So...I'm going to get to see a rhuematogist, and a lot hinges on getting a positive on this ANCA test. Will this be the end to a six year long struggle of me screaming that there's something else wrong? That they haven't found it yet? That I'm not crazy and scar tissue masses aren't normal like they say? [prays to God the test comes back positive and fast]
  2. This reminds me of the time I asked at the bookstore and they couldn't find anything. They couldn't even spell it. XD How disheartening to be so small...! If I wasn't so busy with the fiction, maybe I could write something. But then it would be in a more amused, slightly hilarious voice. "Most POTS patients find it hard to go to the bathroom in the middle of the night, because trying to get up out of the bed is not unlike unbeaching a whale. They flail their arms and legs, which in turn only increases their rapid heartrate more, and causes them exhaustion to the point they have to make a difficult decision: is it better to pee or not to pee?" Yeah.
  3. If I remember correctly, and excuse my brain, I was on Wellbutrin (which I don't recommend either for the suicidal tendancies) and they tried to add Zoloft because it wasn't working. The Zoloft made my hypoglycemia worse, to the point that it would randomly drop my sugar to 70-80 range and I would -in the middle of a call at work- start shaking and sluring and have to be walked -because I couldn't walk on my own- to the break room to eat. I wouldn't take the Zoloft. It didn't work, it made my suicidal\self-hurting thoughts worse, and made the hypoglycemic episodes majorly bad. I've tried it twice, once when I was a teenager, and once as an adult. It never worked. I'm on Topiramate now, an anticonvulsant (excuse my spelling, please!) that they're testing for bipolar disorder and it's worked great. But if you do get tolerance, you have to step up every year or so. It keeps me very calm. EDIT: Also, Topiramate is geared toward losing weight because it helps you not to eat. It makes bad food taste funny and makes you not be able to eat so much in one sitting.
  4. It comes and goes on its own, isn't triggered by anything in particular, and this was after being outside. In the dark. Once or twice last summer I was walking -as I do on lunch for exercise- and out of no where my skin began to burn. I don't mean like a sun burn, I mean like holding it over a candle until it was too hot and it felt like it was on fire. I had to run to the shade. I went to the bookstore and hid out for a few thirty minutes but then had to go back to work, and luckily it didn't do it again. It felt like it was being attacked. But they fade quickly. It comes and goes.
  5. Since I've been sick, and mostly within the past half a year or so, I've teased that I've had a demon nose. XD I can smell all sorts of things and pick it apart. I can smell in another room, down the hall, when someone sprays something. I can smell down the hall at work when someone is cooking in the breakroom. It comes and goes, but if my nose is clear of blood and open, I can smell the deepest, strongest things. It definately helps with explaining details in my book, but not with allergies around people and their cologne... But it is funny when I go, "Do you smell that?" and there's a pause before the other people start to smell it and then they really do. Like...I pick up first. XD Maybe with the loss of other function, we have super senses now? O>O
  6. I've been saying for years its autoimmune but no one will listen to me. They did a blood test a few years back and said it came back fine and nothing was wrong. That I'm perfectly healthy and I just needed to take some anti-inflammitories. But it didn't help much. After having two nosebleeds today, one of which made me wake up with a headache and coughing as I choked on the sticky blood in my throat and nose, I really don't see it improving. My septum is dissolving on its own and I'm just at a loss at how I'm supposed to make them see my body is killing itself. I have an apt with my sinus doc on the 22nd and he's going to check the septum to make sure it isn't breaking down anymore. If it is, he has to biopsy it. I've mentioned I want a immunological check in a blood test to them over the phone because of all this sickness crap, and they said yes, so if something shows I'll go from there. Otherwise I'll just let it go. EDIT: Also, it's hard to take pictures of, but this is from the other day, and it felt like something was biting the skin below my eyes where it was red. It was really red-purple, so the picture doesn't do justice when you have to take it yourself... My facial rash picture.
  7. Nope. Just in BG, KY and not anywhere near anyone good. Dr. Zia was supposed to be good but all his tilt table test did was give me a $750 bill and a borderline diagnosis.
  8. "Let's hope it clears up for you." That's what the doctor said, in regards to my mentioning that for about a month and a half, before switching meds, I've been waking up with a racing heart around 1-2am for no reason. I'm done. This is the third doctor I've had just blow off everything. I even tried to point it out for him. All the symptoms again. "Since I got better from the infection, I've gotten more exhausted, I'm sore again, aching all over, hurting, and I'm getting that facial rash..." Nothing. Checked my bp, my heart rate, saw the orthostatic hypotension heart rate thing was still causing issues, didn't say anything about it. "Any side effects on the meds?" "None, not really." "Alright, I'll see you in three months. Let's hope that heart racing thing clears up for you." Out he went. I'm actually amused. I wasn't expecting much else. But I'm done. No more questions. No more tests. I'm just going to let it get worse and worse. I can't be bothered to care anymore.
  9. I was on Propranolol (Inderal) for a year and a half. At first it worked great. I started on 30 mg three times a day. After about six months, I had to increase. After three months, increase, after three months, increase, after three months... Get the picture? If you build a tolerance to medication in the past, this is probably not a good beta blocker for you. It works great at first but it may cause you to have high blood pressure and to give you some strange side effects such as an hour to two before your next dose: migraine, chest pain, panic attack, MUST HAVE PILL NOW feelings. This is my experience with the medicine. It helped a lot. But after a year it was more trouble than it was worth and so I struggled with it for six more months and now I'm on Labetalol to try and see if it helps. It helps with the migraines and the general issues, but the orthostatic hypotension has come back and gotten worse. Which was the main reason I started the medicine in the first place. [shrugs] It's one of those darned if you do, darned if you don't. XD
  10. I used to take it years ago for 'allergies' along with Zyrtec, but it stopped working after six months. So I quit taking it and have been 'allergy' free ever since. I didn't have any side effects from not taking it though. O.O
  11. My mom used to tell me when I was little that it was because the world was running out of oxygen and we were all going to die. I hope not! XD
  12. Nope. Because they told me that the issues were just random and a part of life. Nothing serious. I also had a big test coming up and on that day, so I'm pretty sure they wrote it off as stress as a part of that test and didn't retest me with the Holter and reschedule even though I had told them about it before hand. Kinda like everything else I was just waved aside as 'borderline this and that'. Because I never present on monitors.
  13. The burdock root is for constipation. It's the only thing that works that isn't a painful bowel stimulant that causes me to writhe in pain. I only take it when I've waited for more than five days to use the bathroom, because it takes the water and forces it to be used to lubricate my intestines for a movement. They tend to get inflammed because when I try to go all I can get out are 'ribbons'. I have had a colonoscopy and they found nothing. The topiramate is for mood swings. I am manic depressive by genetics. I stay happy\panic manic if I don't take the topiramate, and would have a heart attack if not on it. I have to have it, I can't not take it. The other medicines I've been on do not work. Wellbutrin, Zoloft, and there was one other one in line with those I have tried. They didn't work in the long term and actually made me want to hurt myself and I attempted suicide. Before the medicine I would get up and move around a lot, then go sit down and do some work, then I would get up to do more work and pass out. Or flush over my face and collapse or go tachy. They put me on meds and after a year I was hypertensive due to the propranolol. Apparently if you're on it long enough it gives you high blood pressure. I've had two tilts and one was not covered by insurance. The first showed nothing, the second was 'borderline' only because I didn't change enough. I didn't pass out I just got sick, tachy, and dizzy. I am not getting another because of the insurance **** I went through. I don't have a Costco here and I haven't seen any BP monitors in town, so I would have to order one. Hence the expensiveness.
  14. My hands do that funny thing with the spots. But they don't go too red or swell. Just get sweaty and spotted like alien skin! XD
  15. Anybody want to answer this? Up or down in the meds since I have an appointment next week and it's real hard to get in to see my primary?
  16. I eat a salty diet because my inability to keep water in well without lots of salt with it, and I've never been offered florinef and probably wouldn't take it due to the side effects. I did the 24 hour catch both ways (the two kinds) and my adrenals are fine, so they didn't find anything wrong there. I don't think it's an episode since it's a steady decline that's inline with the medicine changing from one to another. Propranolol not working...stopping the propranolol and starting the lobetalol and having the old meds work out of the system while the new meds work in.
  17. Currently infection free after being sick with a sinus infection for seven months. I was on antibiotics off an on, but no longer. Last course was a 10 day Z-pak that started on the 28th of December (take 5 pills that last 10 days) but the symptoms were before that. I had sinus surgery on the 9th of December, and was on an antibiotic then (the C one I can't remember the name of) for ten days. Then was free for a week. We only recently found some mold in our home in the air filter my Dad has been neglecting to change and in the water bottles my mom keeps around the house. My room is mold free but apparently though my mom cleans a lot the rest of the house has some issues... We've found them and fixed them. I'm hoping that helps me. But the symptoms are still there and don't seem to have followed the antibiotics or the infections. So I don't think that's it. I can't check my BP because I don't have a machine and they're too expensive ($50 for a cheap one here). For my meds, check my sig. :3 I can't take the labetalol like that, it's a set dose. I get tachy with the up down as mentioned previously, meaning when I sit in a chair and then get up, go back and then sit, then get up and then sit. Or if I'm out and am looking at something on a shelf, kneel down, get up, kneel down, get up, then I'm going to crash. I get dizzy in the shower because of the heat, yes, but I don't have the time for a bath in the morning. I used to not have those problems before. They've been getting worse. Last night I was laying half-reclined on pillows with the laptop and looking at cute pictures and putting text with them when I noticed I was feeling a little sick. Headachy, tummy sick, and my chest hurt. I was jumpy and panicy for no reason. Took my pulse, 90+ and rising. I stimulated the vagus thingie by breath holding (I've done that for years because I've always had rythym issues with my heart) and skipped myself. Then I beat back at 72. So I don't know what that was about. I had been resting for about two hours and hadn't moved when that had suddenly come on. Is that enough information? :3
  18. So the up and down symptoms are getting worse. Meaning me sitting up and going tachy. Me getting up and sitting down, getting up and sitting down, and getting dizzy sick. And me trying to take a shower without hitting the wall or floor are getting worse. They were getting worse when I was on the propranolol 120 x 2 a day, and the doctor changed me to lobetalol 100 x 2 a day and the other symptoms (chest pain, headache, dizzy all the time) got better, but the POTSiness has steadily still gotten worse. Does this mean I need more or less medicine? Or do I need a different medicine? Or am I simply spiralling and need to get used to it? Cause I can. I actually had a kick in the shower this morning. I was laughing the entire time, though my mom thought I was nuts. I mean, what else can you do when you can't wash yourself without smacking into the wall? XD Any help is appreciated! EDIT: Actually, I've just realized something, too. They were steadily getting worse again when I was getting better from the infection...do you think it could be immunological?
  19. I had the one at the hospital and then the one at Dr Zia's which is the one he learned at the Mayo Clinic. The one at Dr Zia's was more complex with all these bp cuffs (even a little one on my finger) and it was the one that I had an attack on. But even then they just showed me as 'borderline' autonomic dysfunction, because apparently I'm hypersensitive to bp and heart rate changes. It really didn't go up too high but if it even goes up a little too high over normal I start to get sick. Ie, I run best when my bp is "low" or around 105-110. They call normal around here about 115-118. If my bp starts to go to 120-130, I get dizzy and headachy and my chest starts to ache. 130-140 and I'm panting and sick. 140 and higher and I'm flushed and worse and down I go. My bp crawls to 120 through the day, so I have to make sure to lay down or rest at times when I've had heavy activity (walking at lunch and walking while working) so that the bp can stablize. I tend to overwork myself into a sick migraine because I'm just one of those pushers. XD But yeah. Tilts are not that bad. You lay down, they strap you onto the table, they put all these little leads on you, then the bp cuffs on your arms and fingers and maybe around your body, they sit there and they watch you. Just make sure your nurse doesn't run off like mine did cause sure enough you'll have a problem the minute she does. XD I likened it to getting ready for winter! You felt like the kid who couldn't put down his arms you were so tightly coddled in the bed. If you fainted, you weren't going ANYWHERE. XDDD
  20. I read a lot. But then my arms get tired! XD I also like coloring books and drawing. I play with dolls and toys, too, childish as it seems, because it keeps me feeling young at heart. :3 I like to look at picture books. I like to cuddle in bed and tell stories. I like to write. I like to make things up when I'm too tired and then when I feel better, type like crazy to get them out! :3
  21. On both of my TTT there were no injections needed. So you should be okay. :3 You can ask for them not to I'm sure. But I would definately get all the records. Also, if they refuse, call the police. Those are your records and they have to hand them over, even if you have to legally force them to do so. :3 Good luck~! :3
  22. I try to walk. Even though it's very hard, I walk as much as I can, when I can. At work, at home, and with small rest breaks. I eat many small meals and I avoid massive sweets, and I make sure I only get what I'm supposed to in calories in a day. It's about balance and only doing what my body can take. And so far I hit my target and stayed around it through the holidays. :3 I don't think I can get any lower than 155lbs, because at my body size and height it wouldn't be healthy. And I feel pretty good at this size. Even if the CDC thinks -LOL- I should be 120lbs. I've never seen that...and I doubt I could be that without falling over.
  23. I don't remember my dose, but it was last year around the time the commercials were first coming out. Take this with a grain of salt. This is my story: For me Lyrica is bad news. It made me feel like I was on a drug trip. Worse than Hydrocodone, I was grinning like an idiot, staring at walls, and running into things. It was not a mild buzz. I was also swelling up in my face and extremities with water. I gained ten pounds in the first week, and when I looked in the mirror and saw how big my face was, that's when I called the doctor and said, "Absolutely not. I am not taking another pill, and you lied to me." Because I told him I heard about those side effects and he said, "No, there are no side effects like that." If you look it up online the NUMBER ONE side effect is "weight gain of at least ten to twenty pounds in the first three months of treatment", and then I found there was a possible "steady weight gain of three or more pounds per month after that". There were people talking about stopping the Lyrica who lost over fifty pounds and who also developed tremors or numbness from withdrawals that never go away. It's not worth it to me.
  24. Yep. I get the auras and I can't walk straight so I bounce off of objects to make it. Luckily the bathroom is right next to the bedroom so I'm not too bad off. :3
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