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About Nela

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  • Birthday 11/17/1985

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    Animals (anything related, especially bunnies) Scrapbooking, Singing, Calligraphy, collecting vintage items.
  1. To be honest, I can't seem to make much sense out of anything I have been reading. It's especially hard because I really have no idea WHAT I have other than being told 'dysautonomia'. Lol. I do often experience vertigo when getting up but maybe most people get that as well when getting up too quickly. I don't know. One thing I do know, is I have not had any issues with rides other than sometimes my heart racing. I have the beta-blocker for that and even if my heart races some after a ride, it hasn't been bad enough to make me sick. Because of this, I figure I do not have POTS? On the other h
  2. So... I thought I would ask you guys since I have had some episodes lately and I wonder if any of these could be associated with Dysautonomia. - Hives from the cold???? I had noticed this some years ago. Sometimes when it's pretty cold, I would break out in nasty hives. I would only get them where I got pretty cold so face, hands, feet, and thighs. It happened last week and it caught me by surprise. I reacted really badly too. It was maybe -10C or so so not very very cold but after about 10-15 mins being outside, my hands got quite cold and before I knew it, they were burning really badly so I
  3. I had known for a really long time that things were not quite right with me, especially after exercising or any type of strenuous physical effort really. I was lucky enough to have a stress test done. You know the famous treadmill test? Mmmhmm. Well, that's when they realized this was not just in my head. The cardiologist had to stop it because things got too bad. Actually, the funniest thing... The nurse took my heart rate before I took even got prepped for the test and she got really worried. She refused to be left alone with me so the cardiologist had to stay. Hehehe. My heart rate was way
  4. I definitely cannot work at this point. It's not necessarily that I do not want to, but it's just so discouraging. I've always been one to take pride in my work and I really hated feeling like i was letting people down. I absolutely hated the tension it caused with my employers and also the strain it put on co-workers. I never made it to a career and in a way I am grateful I didn't. I just had regular jobs like working in a shop or restaurant. Working in a place like Tim Hortons pretty much ruined me. I loved the job (surprisingly) but constantly being in this adrenaline rush really took a tol
  5. I have been using cortisone and inhalers for years. Cortisone does cause issues but I also know that inhalers (most of them) are beta-activists and therefore accelerate the heart rate a lot. Anytime I am on my inhalers for a prolonged time, I have a much harder time controlling anything that goes on with my body. I hate cortisone myself... I hope everything calms down for you soon
  6. I cannot really give you a good answer because I do have quite severe asthma so it's really hard for me to know what causes the breathing issues. I definitely cannot handle heat well though. I'm currently on Spiriva, cortisone, singulair, Salbutamol, Avamys, etc. I do use a beta-blocker as well.
  7. I was found to have lots of fluctuations in my glucose levels. I mostly have lows though and they dip really quite low. I was lucky enough for my doctor to catch them with a random glucose metre test but my actual blood tests always came out normal. My doctor decided not to treat it but I have had to change my eating habits. Everything is much more stable now that I am no longer working.
  8. Thanks guys It's nice just to be able to talk to people who understand it. The hardest thing is coping with people around I think. Trying to describe how lousy I feel is usually just wasted energy. It's so strange how it just comes and goes. Luckily though, I do have better days! Lol. I can't say I have had a perfect day in years but at least there are 'good' days! It's seems there's always some little booboo or other. It's just irritating when there is always something wrong you know? The funny part is when people think you are seeking attention... And all I could think of is 'Because this
  9. Thanks, that's how I had first understood it and that's the way it made sense to me. It's what my doctor was trying to explain as well. It's just so confusing when you read more into it and all the medical terms come in. Lol. I'm too brain fogged for much to make sense in the first place. I guess I got confused because I couldn't understand if dysautonomia could be something on its own or if it was caused by something else etc. Dysautonomia officially *****. I guess part of me was hoping such a vague thing wouldn't cause so many problems. Bleh.
  10. Ugh it's one of those days... Seems I simply cannot get myself out of bed. I'm achy, drained and whiny. Lifting my head is a chore. I'm craving chocolate badly. I don't like chocolate much usually but I've eaten more in the past 2 days than I have in a year. It's an aggressive craving too like 'Give me chocolate so no one dies...' type of thing. I did play in the garden a lot and got massively dizzy and was sure I'd pass out. Bending was simply not an option at a certain point. I guess I overdid it yesterday and now I am paying the price? It's strange though, I didn't do THAT much. I did p
  11. Okay... I have read and read but things still aren't entirely sinking in... Can someone please help me understand? I mean, with dysautonomia there are different types right? So how does it affect so many things? Like for example: glucose. How would it cause you to have such highs and lows? Wouldn't a certain type cause either a high or low? I'm not really sure I am understanding... Isn't there a general dysfunction that can exist in the nervous system that makes everything go out of whack and produce highs and lows? Something that would explain everything? I'm trying to understand if dysaut
  12. Gosh did I ever... I started having most issues around the age of 18 so automatically doctors seem to associate anything medical to something mental. It was an extremely aggravating period of time. I remember how upset and angry I would get whenever someone would mention the 'stress' word. I mean, how insulting! Seriously... The turning point was one day when a doctor blew up at me. I think I could have torn her up to pieces right then and there. We had a screaming match, and I stormed out of there in tears. She basically told me to quit wasting her time and said I didn't need a 'real' docto
  13. I cannot stand the heat. I got lucky this year and moved to the Netherlands because it's been extremely hot in Montreal. 47C. Ewww. Anyway, there are still days here when I simply refuse to be in the sun. The heat normally makes me feel very achy and drained oh and heart races of course. Kind of sick to the point where you'd think it was heatstroke but it really isn't. *Shrugs* It's just strange how badly the heat can affect me. Does it make you guys ache a lot too?
  14. Wow, you all feel it too? I have the same thing! I'm just 24 but oh my word is it painful to stand up after sitting Add the pain to the loss of balance and you just look completely silly to the people not understanding what is going on
  15. I have a terrible fear of using a nettipot... I'm scared that it would feel like choking on water? Lol. I do have lots of issues with my sinuses though. Chronic Rhinitis, sinus infections (about 4-5 a year), allergies, etc. My lung specialist put me on Avamys. It works well so far (when I remember to use it) but of course you have to take it all the time for it to work... I do steam treatments when I need them. I'm really curious about this nettipot thing though...
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