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About little_blue_jay

  • Birthday December 2

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    Ontario, Canada

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  1. I'd better not find myself a boyfriend with POTS! With me having to remain horizontal, and him having to remain horizontal, that sure doesn't leave many options for positions
  2. For many months now I've been noticing my shortness of breath symptoms getting so much worse for about a week before my period is due. Then within a day or perhaps two of it starting the breathing gets much better. My doctor believes me, I'm grateful for that; he must have other patients who complain of the same thing because he nodded and said 'it feels like you're suffocating' and that describes it pretty much perfectly. Every few minutes I have to take a very deep breath and sigh or it feels like I'm slowly suffocating, even at rest. I've done alot of reading about this online trying to find an explanation - I've seen that there have been studies done on this but that the researchers can't agree on a possible mechanism for it - bronchoconstriction, inflammation, mucus production, or something else. They just give recommendations for more aggressive asthma treatments. But alot of these puffers carry a warning of risk of death by using them! I do have a Ventolin puffer which I rarely use during the other 3 weeks of the month, but in the week before my period I find myself using it more, which I try to avoid as it does make me jittery. Well this past period I used it the one day and I swear I didn't feel any better with the breathing. I said this to my doctor and he writes me a scrip for Symbicort. This tells me the mechanism can't just be bronchoconstriction else the puffer would have helped a bit. I understand its gotta be a hormonal thing, an imbalance of some type, but how? Years ago I got him to run a hormone panel on me and he said everything was normal. He said those types of hormone panels usually come back normal and that probably wouldn't show anything which it didn't. I didn't have this Premenstrual Asthma issue I have now. I have tested positive for certain allergies but they don't give me the typical symptoms like itchy eyes, sneezing, runny nose, etc. I'm allergic to ragweed, grass (severe) and birch tree. I have a mild cat allergy and do have 2 cats but even my allergist said I shouldn't have to give them up if my asthma is well controlled. Everything just gets worse before my period. If it was just the cats it would be all the time. I don't feel wheezy to myself when this happens (but I'm not listening with a stethoscope either) I went and scared myself a couple months ago by reading about "Premenstrual Asthma" and found a case study of a woman who had it so bad she was hospitalized and intubated because of it!!!! If mine keeps getting a bit worse is this gonna be me in a couple years?? (I'm 39 so a few years away from menopause yet!) I asked my doctor is this dangerous and he shook his head no.. but I'm still scared. I dread my period every month, well no, I actually dread the "pre-period" SOB - starting my period makes it go away so I pray for it to start so I can breathe again! Any one else here who has anything like this? Did your doctor give any recommendations for it?
  3. Yes if it happened when you turned your head that does sound to me like vertigo (but I'm not a doctor). I know my own symptoms (I have moderate peripheral vestibulopathy) and if I look up too fast to look at a bird or a plane or something I will feel dizzy and imbalanced, like I am tipping over backwards. It's not just a feeling, I actually do start tipping over backwards, because when I used to work the drive-thru at the coffee shop I used to work at, the order screen was way up high and we had to keep looking way up and then down to make the coffees (stupid design I know) and I couldn't do that for more than 15 minutes and I'd insist on switching spots with someone, cuz one time I caught myself starting to tip over backwards and I refused to do that spot anymore even though we were supposed to stay an hour... there was nothing to meet my skull behind me but sharp tile counter edge If it keeps happening get your doctor to send you to an otolaryngologist.
  4. Oh wow sorry to bring up an old thread but all the replies on here describe exactly what I have been feeling like today! I've had episodes of this before, about a couple of days at a time. I hate this feeling when I'm afraid to fall asleep, I am scared I'm going to stop breathing & die. Most of the time I have a shortness of breath and am gasping for air or hyperventilating. This is the opposite, I feel like I'm underbreathing! I'm so scared! I fear sleep sometimes, I don't wanna fear sleep! Sleep is my friend! Has anyone found something that helps with this!
  5. I've had both of those sensations and it always scared the blazes outta me! I hate them! Especially the feeling like I'm gonna stop breathing, I hate to be afraid to fall asleep! Some nights I'm just so tired but I can kinda sense when I'm going to have one of those nights where my breathing feels on the verge of stopping just as I'm falling asleep and then it takes me hours to fall asleep from it! It never wakes me up from sleep so I don't think it's sleep apnea (tried to do sleep studies twice but couldn't sleep in a strange room) but it is so scary!!! I hate the vertigo feeling too. But then again I do have something called peripheral vestibulopathy which affects my balance so at least I have a good explanation for that one! Same here! I had read about something called a "hypnic jerk" a long time ago, and thought it was a normal thing when you're about to fall asleep? It does freak me out though. I too do the loud groan noise as well! I've woken myself up with it just as I was on the verge of sleep. I'd have thought I only imagined making a groaning noise except both of my cats lifted up their heads and were looking at me all startled out of their sleep
  6. Thanks for getting back to me katybug! I can't believe it but I'm still awake at 9:10 here Yes I am interested in the neurofeedback, thanks! I'm in Southern Ontario. Didn't know it was a computer program only available through a specialist - no wonder I couldn't find any details when I googled it! That's interesting about the click, but how does the click make your brain calm itself? I have no Epsom salts at the time, I've tried this in the past though, both in a regular bath and in a concentrated footbath and sadly it didn't do much for me. I do take pretty high doses of magnesium citrate orally (for constipation) Took about 900 mg last night so it doesn't seem to have an effect on falling asleep for me. I found someone's blog page on her struggle with POTS and bad insomnia so that makes me feel much better that that's what's wrong and not FFI! She mentions that she 'went weeks without hardly any sleep at all' And I'm freaking out after 32 hours! Still, I just wanna sleeeeeeeeeppp
  7. Oh yes, I have this too. I told my doctor all about it, he didn't seem too surprised and looked like he believed me, but I never got much explanation. When I'm having a 'flare up' it doesn't matter what I eat - I told my doctor that my heart would race part way through a small meal of green salad with tomatoes, and some olive oil with some cut up grilled chicken - no spices, no MSG, nothing at all that would make someone react. Sometimes the tachycardia would start right after I was done eating, but when it is really bad it would start about halfway through a meal, and these were small meals to begin with (I can't do large meals at all!) It is very bizarre, and I hate this symptom, because I like to eat, and want to enjoy my food goshdarnit
  8. *Usually* my worst symptom is tachycardia, but at the moment that's actually not bad, right now my worst symptoms is INSOMNIA ! I HAVE BEEN AWAKE FOR 24+ HRS AND TRYING NOT TO FREAK OUT
  9. OMG Katybug thank you so much for replying so fast! I'm so relieved to hear someone else has had this, this bad! THIS ***** EH I forgot to mention that I can't even go see my doctor about this as he's away the whole month of August, his wife is having a baby, there's a walk-in clinic I can use but they always just say 'follow up with your doctor', and I don't even know if they would be able to order such a specialized test as the one for FFI, just to put my mind at ease!!!! Yeah I got up to eat around 1 pm and had a cuppa tea with it, as I find I can drink warm tea before bed and the caffeine doesn't keep me up, I might have to get up and pee with tea but not the caffeine itself per se, but even a small meal with protein and tea didn't help. I JUST WANNA GO TO SLEEP Tell me more about this neurofeedback, what is it that you do? I tried to slow my breathing but it feels like it doesn't wanna slow down
  10. Ok I'm starting to freak out that I have something called FFI Fatal Familial Insomnia -- I know this is super rare but I am scared, this is not normal for me to not have slept in over 24 hours! I woke up yesterday around 12:30 noonhour, didn't do much all day, laid in the sun couple hours, felt very sleepy (but not tired enough to sleep, I find for myself there's a big difference between tired & sleepy) by around 7 pm. Went to bed fairly early but put a movie on as this usually helps me nod off but I picked a noisy movie with too much shouting, and felt several times that I was nearly asleep and it would wake me up. My cat was on my belly so didn't want to get up but finally I did. Also my hamster's wheel was very noisy, had to get up several times to adjust it and finally just took it out altogether cuz I was getting frustrated) I feel maybe like I just missed my 'window of opportunity' to fall asleep then, and now I'm just so overtired that I can't sleep? I have chewable melatonin tablets 1.5mg but I know I'm so sensitive to all kinds of meds that I used to only take a quarter of one of those, till I started to feel like it was depressing my breathing just at the onset of sleep, so I had stopped taking them. Out of desperation a couple of hours ago I chewed a half of a tablet, it made my heart race and a groggy feeling so I laid down, but I'm still not asleep. Please someone just reassure me that someone else out there has had bad insomnia as bad as this cuz I'm freaking out that I have this FFI!!!! In case someone is wondering, on my mother's side nobody has ever had this, and on my father's side I have no idea, and I'm not on good terms with him and don't want to phone him just to ask him this, we've spoken years ago but who knows if he would have mentioned something like this anyway, he's kind of odd and I don't like him (I have reasons, can't go into now ) It is now 5 pm here and I'm still up! HELP ME
  11. cctalk & katybug, you guys are so lucky to have ridden as much as you have and/or spend so much time with horses like you do! *jealous* I love horses, I would love to have one (or two as they like company!) some day! A friend drives me out to the country to feed some horses carrots and I just love it when I come home with my hands smelling like horse Somebody (can't remember who) said "the outside of a horse is good for the inside of a man" (or woman!) Sorry to hijack! Carry on!
  12. Does it help with tachycardia and/or shortness of breath? I'd be interested in those links you mentioned katybug (whenever, of course! no rush )
  13. I'm beginning to think so too. I am during a certain time of the month right now and it's weird because usually I'm nonstop thirsty during my period! This time, nothing. Bizarre. Also during this flare-up I'm having (lovely that it coincides with my period ) I'm getting this thing where after a few bites of food the tachycardia starts. I have rotated my food for several days, not eating the same thing twice a day, and it still happens. I've concluded it's not what I'm eating, it's the fact that I'm eating at all. Or sometimes I'll barely eat a few bites and I'll feel slightly nauseated. I'm getting fed up! Pun intended!
  14. Yes darn it that's exactly what happened to me a couple of times lately! I noticed my pee was too dark yellow for my liking so even though I wasn't thirsty I made myself drink a full bottle of water immediately and started on a second one within 5 minutes as the shade of my pee was a bit alarming (to me, I get freaked out easily by such things!) and almost immediately I felt nauseated! I was thinking 'what the heck is going on here'.... my pee tells me I'm dehydrated, I drink water and I feel slightly sick???! I did not 'chug' the water, just drank it within about a 3 minute period. I thought it very odd! Glad to see I'm not the only one! Any ideas as to why our bodies would not signal the thirst drive instead of just letting dehydration set in? How do they even test for blood volume anyway? I really should ask my doctor about this!
  15. I have the same feeling after using elevators. Even at my doctor's office ironically, he's on the 4th floor! (I do have something called peripheral vestibulopathy though, it affects balance) My cure: I have to sit still & quiet for a while and just not move. My equilibrium restores itself after a bit.
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