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Nela

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Everything posted by Nela

  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 hand, I am a lot more prone to fainting when I get those 'bad days'. In general, I do well but when the episodes hit me, it's a whole different story. The mast cell stuff, really isn't something I actually comprehend. I'm really not understanding how you would differentiate simple allergies from this? I've always had allergies and they run in my family so I really am used to them. The only difference is that I was told they would ease up but they've been getting worse instead. Aside from being able to say that I recognize way too many of those symptoms, I really cannot say more than that. That's the problem with the nervous system glitching that way though. It just seems that anything that can go wrong will. With dysautonomia, the symptoms you get are so general and widespread that it's hard to pinpoint and say 'this is what I have'. It took my doctors so long to figure things out, so I am not expecting to figure it all out myself. A lot of the articles use medical terms and I just don't want to misinterpret and over analyze things either. It's frustrating though, because I would really like to understand more so I can manage better. Hilbiligrl, awww I'm sorry to hear you experience it too. It's quite a frustrating thing. I too just want to cry sometimes. It really gets on my nerves, especially when I am trying to sleep. Lol. It just comes and goes. I've been wondering if maybe there isn't some stress coming into play as well which would in turn, exaccerbate the dysautonomia and making this appear. I don't know... I can't make sense of anything... Grrr. Thanks guys!
  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 came inside only to notice that I had nasty hives. I dipped my hands in lukewarm water and that didn't do too much. I took an antihistamine and they went away shortly after it kicked in. It was not at all pleasant though. The thing is, I had been having hives on the back of my thighs when coming inside from outdoors for days as well. The only thing I could think of is the cold causing it as the area was really cold. I could feel it. It's not constant though so I don't understand? I heard of people reacting like that to cold but they would do an ice cube test and react. I tried it but didn't react? - I don't remember if I asked, nor the answer but if you have POTS can you go on rides? I was told I have dysautonomia but not specifically what kind but I can imagine that rides would be a problem for people with POTS? - Can someone please explain this to me again? I have highs and lows. Everything just seems to go out of whack randomly. I've been known to have hypothermia for no reason at all. Low blood sugar levels. Low Blood pressure. Then sometimes, I have high everything. Lol. So is this just a general malfunction? What kind of dysautonomia causes that? - Frequent urination. Now, this is completely new for me... I have never had a problem before. I used to go to the bathroom about twice a day, 3 max. It used to amaze my mother that I could drink so much and never need the bathroom. In fact, that was one thing that had docs worried because they assumed it was related to diabetes since it is so common in my family. However... I can't stop!!! It drives me absolutely mad!!! It's not constant either. It just comes and goes and has been doing so for about a year now. There's no burning or anything and considering that it comes and goes, I don't think it's an infection. I've also been on antibiotics but that doesn't seem to have changed anything. It happens a lot after eating mostly. I'm going to the bathroom about 3 times a night now as well though. It really drives me up the wall. Any ideas? - I had sinusitis/bronchitis/throat ulcer in November. The thing is, ever since, we cannot get my asthma under control. I am going to see the specialist this week but I was curious about it having affected my body's response to things. Is it possible that my body is overreacting to everything all of a sudden because of the bug i caught? I still don't understand any of this Thanks for your patience!
  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 high, I turned pale and my lips turned blue, and I had the shakes. Of course, they rushed to check my saturation but that was fine. I didn't make it through to the end of the test. The doctor did push a bit further than the nurse wanted but it really revealed what he wanted apparently. Anyway, since then, I have had my dysautonomia diagnosis. He pieced together the missing links. So yeah, physical exersion? No fun. I'm currently working on an exercise plan but I will have to take breaks every few minutes. I cannot do more than that as the beta-blocker can only do so much.
  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 toll on my body. When I worked there, I never had a good day and it was really really hard to perform to my own satisfaction. In then end, it was my employer that got too concerned after a client noticed I had blue lips. My employer sat me down and saw that I was shaking and blue (though I had kept on working) and we had a good heart to heart. He didn't fire me, I simply quit. I knew that I couldn't do it anymore... I got really lucky though as my boyfriend asked me to move to Holland to live with him around that same time. I'm here since May now and I have not worked since. I still have those days where I feel like I got run over by a truck. I never know when those days will be but the good thing is that I am at home. He works and I take care of the home. Luckily, he understands and is not pushing for me to return to work. Maybe, in the future, if things get better, I will try again. If not, I am perfectly happy with this arrangement. Plus, housework is not so easy! Hehehe.
  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 is good attention?!'... What I wouldn't give to feel normal again and to be like others my age! I'm not complaining about what I have because others have much worse, but I am complaining about how it makes me feel as a person. It's hard not to care when the people you love most get tired of you. The magnesium is interesting. I wouldn't even know it myself, so it'd be interesting if my body associates chocolate to magnesium. Lol. I hate that it doesn't help my weight problem though! I'm not really exercising right now but I am supposed to be getting an exercise bike very soon. It's something I want to do but I feel soooo badly after exercising. Lol, I tried the WiiFit a few times but that usually knocked me down for a few days. I used to work a very fast-paced and somewhat physical job but that caused some major problems with my health. I tend to go with the flow as well. It's easy when you are alone. It's a bit harder when you have family watching you. I tend to want to push to get things done even if I'm not feeling 100% so that I don't feel guilty afterwards but that seems to only get me in more trouble. I have toned it down a lot though and I try to listen to my body but sometimes I just do not want to take no for an answer. I'm taking the following medication daily (when I remember!): - Bisoprolol 5mg - Lyrica 3xday - Celebrex - as needed - Symbicort - 2 inhalations 2xday - Birth Control which starts with a 'c' but I have completely forgotten the name at this time - Avamys - 2 sprays/nostril once daily - Singulair 1xday - Cortisone 5-10mg a day (increased to 25mg when asthma is uncontrolled) Is there anything in there that can help or worsen things you think?
  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 plant a tree and shovel a bit, oh and threw a few stones here and there but I don't see how that is so physically demanding? I'm 24. My boyfriend's mother is 65 and she can do more than I can. It makes me feel horrible. Not just me, but you can tell people are just thinking 'She's so lazy.' and 'Oh, she's such a drama queen.' Should you medicate? Should you just let it pass? Do you rest? Do you just fight through it and try to stimulate your body into complying? I'm not sure anymore. I hate this... Good thing I left the chocolate downstairs so I at least have something calling me or I wouldn't even bother trying to get up today i think. In fact, I'm so drained that when the doorbell rang, I couldn't be bothered to dress (I do NOT ever let anyone other than my bf see me in pjs by choice normally!) and went to answer anyway because I knew it was a delivery and just couldn't care less at that point. Of course, it's those days that the delivery guy is never an old guy. Nope nope, it's always the young, good-looking guys that deliver to your house when you look like crap. I just want to cry.
  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 dysautonomia can mess with everything. And if it can, why are there so many types and sub-types? I'm not sure which I would fit in... So far my heart rate, blood pressure, temperature, glucose, etc. are all being affected. How would POTS explain that? Doesn't that have more to do with hypotension? I'm all confused...
  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' doctor. (Shows how respectful she is towards her co-doctors ) Anyway, after that, I started seeing a nice doctor who actually listened. She remarked that I seemed to have a good head on my shoulders and like everyone else my age, had stressors but seemed to handle them properly. She noticed a lot of things were off medically so as cortisol levels, sugar levels, blood pressure, heart rate, etc. Anyway, she was a HUGE help. However, after I was hospitalized for my heart, the cardiologist I was referred to also suggested it was all in my head. How can you have a heart rate of 180+ for hours and days and see it shoot up just by sitting or standing if it is anxiety? Seriously... A few years later, 2 different cardiologists diagnosed the IST. I've been fighting doctors for years and years because of this whole 'it's in your head' attitude. Luckily, I was blessed with a few doctors who believed me and spotted things which led to more testing etc. It's a bit scary now because I will have to go through it again here since I changed country but I hope that I will find someone proper. Trust yourself. No one knows you like you do. I had to learn that. Sometimes it's extremely hard, and you start to question your own sanity but it often turns out to be way more than just 'in your head'.
  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...
  16. It's so funny to see so many issues being addressed with this dysautonomia thing... (I'm new, dysautonomia is new to me) I always have night sweats. I'm always hot. It's so aggravating The worst was the other night when I woke up completely soaked and it really wasn't that hot. My poor boyfriend... I wash the bed regularly but there's only so much you can do... I was intrigued by the ibuprofen helping? Is it safe to take it regularly? I have quite a few prescription meds so I'm trying to avoid adding more but if it can make a big difference...
  17. Thanks guys. I still have so much to learn. To be honest, I do not know that I have POTS? I know I have IST but not POTS. I've never been tested though I guess IST would be more what I have anyway? Haha, the weirdest thing about the lips is that it really isn't an oxygenation issue. That's the first thing we checked. I thought it was because of my asthma. Nope, oxygen perfectly normal. The doctors have noticed it and are really quite unsure what to make of it. No one seems to be bothered too much by it really. It comes and goes as it pleases. Lol Don't we love our bodies? Thanks for the welcome and suggestions!
  18. Hello everyone! I am Nela. I had typed up this looong post about how I came to have such and such a diagnosis (and how I finally got it!) but I figured that might be a little much for and introduction What I can say is that I am originally from Montreal but I now live in the Netherlands. I am 24 years old and have way too many prescriptions and conditions To be honest, I'm not quite sure what I am doing here nor what I am looking for. One of my many doctors told me that there is a glitch in my nervous system causing this and that. I haven't really understood everything he said so I am hoping that I might understand a little better through this site. Things I got diagnosed with: - Asthma and bad allergies (heavily medicated: cortisone, avamys, singulair, combivent, spiriva, atrovent, Benadryl) - Sleep Apnea (CPAP prescribed, mouthpiece prescribed, weight loss prescribed) - Irritable Bowel Syndrome (only avoid certain foods) - Severe Migraines (medicated: lyrica, Relpax) - Possible Endometriosis (birth control) - Inappropriate Sinus Tachycardia (medicated: bisoprolol) Things noted and not understood/not medicated: - pallor - purple/blue lips - Feeling Faint - Joint/muscle pain - Hypoglycemia (doctor has no idea what to do about it) - rarer Hyperglycemia (same) - sudden drops in blood pressure - Occasional high blood pressure - Dizziness - Extreme fatigue - general feeling of being unwell - Weird vision - Vertigo - Feeling like in a dream (cannot remember the term: like you're here but not here... Detached from surroundings?) - Muscle Weakness - Numbness - Slight Hypothermia (quite fascinating really Body temperature reading at 35.1, 34.9 C = mom buying 3 new thermometers all reading the same - doctor later confirmed a 35.4 reading) Anyway, that's what I know. I'm hoping maybe I can find something here that might help me. Maybe even someone who can relate!
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