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houswoea

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Everything posted by houswoea

  1. Well, that's just unfortunate. It's very annoying. But if annoying, bruised, and a bit dizzy is the worst of it, I guess I can live with that.
  2. Yes, I got my initial diagnosis in St P, MN. The mayo one was just to confirm that diagnosis. I think I freaked them out because I always cry and get confused and people think I'm having a stroke or something... then when they put me down I come to my senses and see that they are staring at me in fear, ready to call an emergency team... and I'm like, well, I told you so... But 5 minutes was definitely enough to confirm my diagnosis... it only took like 3 for me.
  3. When I had mine at the st paul heart clinic, they made me stand for 20 without anything and then 20 with stuff in my IV to get my heart up. Then at mayo, they laughed and said, "we don't do that, we do enough to see the effects and you can stop when you want." They're stopping point was ten minutes, but I was in a lot of pain around 5 so they let me stop.
  4. Oh yeah, I meant to say that the patch isn't working anymore. That was definitely the main point. Oops! Where's my brain tonight?
  5. Hi friends! I've been on the patch for about 3 months and it's been the only birth control method since I got pots to manage my menstrual cycle. Otherwise, I have it like, every day. Don't worry, I got my insides poked at, and they're all clear. But every time I start a new one it works for a little while (last time a month, this time 3 months) and then it doesn't work anymore. I just have my period anyways, regardless of the method. Not spotting, mind you, like an actual flow. anyone have this issue? they said if it didn't stop I could get an IUD but I'm 21, so I would rather not. Okay, that's all for now. Hope everyone is doing good
  6. For me, anytime I had a bad spell I would lose a ton of hair. When I felt better, I wouldn't. This has held true for as long as I've had pots. Totally freaked me out for awhile, especially when I was really sick. I thought I would be half bald.
  7. Hello! I live outside of St. Paul! We're like neighbors! St. Paul heart clinic was where I got my TTT. It's in United Hospital now, I guess? Since they merged or whatever. Anyways. They have the equipment, if you're still looking. They weren't my most favorite doctors. INCREDIBLY sweet and patient and caring, don't get me wrong. They diagnosed me. They just weren't sure what to do with me after that But they tried, so props to them for that.
  8. I like this medicine a lot!! They wouldn't give it to me until it was the last resort for some reason. But ever since I started it, I've been in well- I guess you could say "remission"! It's weird because I truly thought my life would never be normal again, but with mestinon in combination with my other meds, I almost never have debilitating or even bothersome symptoms. I don't even need IV saline anymore!
  9. For me, it was any sort of SSRI. I didn't sleep for a long time and it drove me bonkers. Just thought I'd throw it in there as a consideration
  10. I think it's more likely a symptom of autonomic dysfunction :-P I used to sleep basically all the time when I was really struggling with POTS. It's funny, I thought I read somewhere that it raises blood sugar! I could be wrong, I don't really remember. I do remember freaking out during the first few weeks of INH because I thought it was raising my blood sugar, but it was a different med making me sick.
  11. Mack's mom- Yes, it is strange isn't it? I had always heard that learning styles can help people academically. However, nowadays, after doing research on the subject, science people have decided that not only are learning styles not useful, but they don't even exist! It was certainly a strange thing to learn! I would never have known! But that's how educational psychology is, one second they’re here, another second they’re laughing at everyone who used the last method. I am a strong believer that kids with learning disabilities can learn what they need pretty quickly and create a system that works well for them. I know that’s how I got through math. I’m sure whatever is working for Mack is working for him! I’m sure he will do great things in college! It won’t be as broad as all this, for example, I’m thinking about focusing on third grade and younger (my area), I won’t be doing any medical research, and I will pick a specific topic that is more narrow. That will make it easy! Deciding to try to get the research done will be harder. I am looking into different kinds of research on processing disorders and autonomic dysfunction as of now. This will most likely be the key to what intervention method to follow.
  12. Thanks everybody! I have some follow-up questions: Rach73- Have the medical problems been evident from early age for you and your sister? And I can't tell time either! Definitely fail at algebra though, they call that "symbolic dysfunction". I just can't understand why X3 and 3 aren't the same. But in the end, I didn't need it. yay! Mack's mom- I should have clarified, sorry, I know you were saying receiving multi-sensory instruction has helped Mack, and that's great! In classes I've learned that not a lot of scientific evidence supports it, so if it works, there must be something in that curriculum that is helping Mack create strategies on his own. Neat, right? Anyways, I thought I would ask if he had sensory issues, meaning over-stimulation/ under stimulation. Usually, I see that dys. people get overstimulated, especially the kids, and that plays a role in academic success. With this project, after I propose and if I decide I can take on more responsibility without pushing my body too much, I may be able to get people to ACTUALLY research this! But the problem is that no one has heard of dysautonomia, ect and so no one knows how much it's affecting the school system! So they may not find the research to be needed! Potsmom- does your daughter receive accommodations for college? She could record the parts of classes she tunes out, and then listen to them lying down! Her professors may be willing to help her catch up too if they know she has medical issues! I like my accommodations because they facilitate communication between my teachers and I! It's very interesting about your son... that information is helping me think about what I want to narrow this topic down to. You said there may have been memory deficits- my question is, did you ever notice any processing trouble? Like he wasn't understanding in the first place, or that he struggled to find names for things (ect "Mom, did you see the thing happen at the place?") This is one aspect I am really leaning toward.
  13. That's really interesting! I'm specifically interested in the processing aspect of learning disabilities and dysautonomia. Now that Mack is doing better health-wise, have you noticed that his processing issues have worsened? Also, you mentioned sensory issues... this is another aspect which I believe connects with dysautonomia completely. Also, has he been re-evaluated after the diagnosis? You definitely don't have to tell me anything you're not comfortable with, I am just curious. I hope to find a better and somewhat clearer intervention method for individuals with dys. who need academic help, especially since so many children are being diagnosed at this time.
  14. Hi Friends! I am looking into a research project proposal for a class I'm taking. I am interested to see how many people with dysautonomia meet the qualifications for a learning disability (any kind, dyscalculia, dysgraphia, dyslexia, processing, ect) or ADHD (either type, inattentive, hyperactive, or combined). There are a couple questions which I am considering looking into, including the using a label of Other Health Impairment instead of LD in individuals with medical problems and learning difficulties, or possibly a tentative link between life-long learning disability and early onset dysautonomia. If there is no link, I'll figure something else out. It may be coincidental, since 11% of the school age population receives special education. I'll go first! I have dyscalculia and visual reasoning dysfunction (I'm bad at math and I can't draw) :-P I don't believe the two to be connected. The LD came first in my life. However, I have noticed a dramatic decrease in my ability to pay attention, which is certainly contributed to POTS
  15. haha how do you tell that to the doctors??
  16. Hmm... I don't really know! Back when I was dancing 20-30 hours a week, I worked really, really hard to develop calluses on my feet so I could dance barefoot. Nowadays, I'd just rub the skin right off, I think. I think that because the back of my heels where my shoes rub just comes off and bleeds. What do you do about the bandaid problems then? use some sort of gauze wrap I suppose?
  17. Really? I thought a central part of EDS was dislocation. The band aid problem stems from weekly IVs and blood test and stuff like that!They put their sensitive bandages on, but the tape for the IVs and the bruising from the poke, and the bandage after... needless to say, I look like a drug addict.
  18. Doubtful. I am freakishly flexible, but I was a dancer for 15 years and only broke a couple of toes and fingers. I figure something would've dislocated at some point if I had EDS. Plus, my skin isn't stretchy, but that would be pretty cool!
  19. Hello again folks. I don't know why I have so many questions lately. I suppose it's because my mind is functioning well enough to form them Yay for that! I'm trying to decide what to do about this weird skin thing. It has just become so easily breakable in the past year, it's getting RIDICULOUS. And it bothers me. For example, I've never had trouble with bandaids before, but now... holy cow. Every time I wear one, no matter what kind it is, it rips off a layer of skin and scars me!! I thought maybe it was the adhesive... but I've noticed in in other areas too! Like I've been getting bruises from just shaving normally, and I will just randomly find myself bleeding without a known cause... It's frustrating me. People are starting to be suspicious that I am hurting myself. Is there anybody out there who can help?
  20. Lately I've been processing all that's happened since I got sick. I have nightmares about last year when I was really having problems. I dream about passing out and waking up for a moment and not being able to tell anyone what is wrong or what I am feeling. I try so hard, but I can't do it. In my dreams, my mind is screaming and yelling at my mouth to just move already, talk! But I can't, and then I dream I pass out again and wake up in the hospital and the same thing happens again. This happened more than I want to remember. But some part of me recalls what happened I guess! I don't like to think that tomorrow I could feel that way again- a captive of my body. Tomorrow I could be so sick people will have to carry me to the bathroom and I won't be able to stand on my own or say what I want to say. I don't think it will happen, but it could. And if not tomorrow, the next few years, and if not the next few years, some time in my life... How do you deal with the fear of crashing again? I see a counselor, which helps, and I know Jesus, which also helps (because I know He'll be with me regardless and that He's in control). I don't want to live in fear, and I choose not to. But I was wondering if you guys have any strategies? Or are you all scared too?
  21. If I don't eat before I take mestinon it drives me nuts. Don't know if I would classify it as "headache" but it makes my head spin and makes me dizzy and my eyes can't focus and my thoughts are muddled(among other things unrelated to headaches). Maybe you need to eat more before you take it?
  22. :'( awww. this makes me so sad. The one thing that you HAVE to hear, please, hear me, YOU ARE NOT A FAILURE. THAT'S A LIE AND DON'T YOU BELIEVE IT. However, I maybe know how you feel. Last year, I tried so hard to continue my classes, but things got worse and worse and I was just a complete wreck. Just complete wreck. Emotionally drained, felt like I could do nothing to fix anything. that made it worse because I pushed myself to keep going. I was in the ER like 3 times a month at least, I don't remember anything that happened... Seriously, I remember maybe 40% of anything that happened while I was pushing myself. Class material or social interactions. Professors were understanding. Miracle of miracles I got good grades. But golly, was I a total wreck. I decided to take a semester off and let my body catch up, you know, medical leave. Praise Jesus I did. It made all the difference in the world. Now I'm back in school, and I am enjoying it, learning, and going to class even! YOU ARE NOT A FAILURE. You are doing things others could never do! All those people who skip for headaches or sleepiness... you are trucking through when I bet half the time you can barely see straight and walk in straight line. That makes you a victor!! But I understand it's hard to be positive when everything is crashing down. I hope with all my heart you have someone at school who can give you some stability and support. Best of luck, friend!
  23. I got the blood test, and it was fine But I was under the impression that unless you had done recent traveling or wanted to volunteer in a place where people with compromised immune systems are located (hospital, nursing home) it wasn't necessary?
  24. I am positive for TB antibodies too! I've been on isoniazid for bout 7 months and I have 2 months left to go! I drilled the Mayo Clinic doctor pretty intensely about any connection. She was really surprised! But She kept saying that if it were latent somewhere else A. there would be intense scaring in the lungs and B. it wouldn't look like dysautonomia. And also that if it was really affecting me, I'd pretty much be dead by now. I don't know if that helps... She said she couldn't say for sure that it wouldn't have set off pots, but that she was confident it wouldn't unless I had an active infection. Can't give blood though :'(
  25. From Minnesota, but got my POTS in Africa.... well, that's what they say anyways. I don't know if that helps or hinders the theory.
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