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little_blue_jay

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About little_blue_jay

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  • Birthday December 2

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    Female
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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 fin
  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 t
  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 th
  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 o
  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 t
  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
  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 asle
  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
  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
  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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