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Bigskyfam

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Everything posted by Bigskyfam

  1. Bigskyfam
    I have my backpack! Water, salty snacks and a fully charged cell phone. I live in a small town and things are fairly close. I started with little jaunts to store and such without a timeframe. Hubby and I only have one operable car at the moment, the ol truck is in the shop. I have two teens with permits and that helps on bad days. Agreed with momtogiliana, if it's a dizzy lighthead day it may be best to call a friend My little guy takes the bus to school. That's a big help!!! Good luck. Keep us posted
  2. Bigskyfam
    First migraine tonight. After a normal ct they concocted a variety of meds. Needless to say... I walked in with a migraine developed bad pots symptoms then home to sleep it off. What is intriguing to me is my joint pain is gone. They have me 1 anti nausea, 1 pain, 1 anti inflammatory and a corticoid steroid. Tonight my vitals are norm finally after being tacky and I can think normally. What a day
  3. Bigskyfam
    Here lately...it's after being in any position for too long... Watching the Grammys with the Fam, first time in years...symptomatic
  4. Bigskyfam
    21 new reasons I'm so glad I'm here. We all learn and grow together. Welcome! Sarah is the hostess with the mostest.
  5. Bigskyfam
    I know I'm not alone on this but... I've found too little sleep and I'm dizzy and lightheaded, too much and I have a headache. I'm finding about 8 hours is just right. Weekends get me as I can sleep in more...What's your best sleep equation?
  6. Bigskyfam
    Glad you found us. To answer the question of lifetime of symptoms... I can't say a lifetime, but a very longtime. My symptoms sounded like yours... Here and there until I had all the symptoms fall of 2013. I'm so glad you are seeing a specialist. I'm looking forward to seeing mine again. I started journaling and grabbed copies of my need recs. Every little bit of info helps. Now that you have a diagnosis... Just know it's only "up" from here... Sending positive thoughts your way.
  7. Bigskyfam
    I declined the shower chair for so long.. But it did help. I'm quicker in and out and recovery after a shower isn't hours. How are you doing today artlvr?
  8. Bigskyfam
    Interesting. I'm not on midodrine... But could definately see how frustrating and unnerving that would be. I'll search online and see if i can find anything.ive used a compounding pharmacy in the past for meds. Not covered under my insurance but in some cases it was cheaper. I have issues swallowing and they could make some things in liquid form for me. Good luck. Keep us posted!!!
  9. Bigskyfam
    To add to katybug... I started using a shower chair so I don't tank in the shower
  10. Bigskyfam
    I've seen some cool dogs who bark pre syncope and tunnel under their owners knees to raise their legs... I have a springer spaniel... When I don't feel well, he's right there but doesn't do either of those things. If I'm the bathroom to take a shower and don't feel well he stays with me.
  11. Bigskyfam
    I get random sweaty palms, feet and lip. Normal BP and hr...not outside or doing anything to exert myself. No meds. So not a side effect.
  12. Bigskyfam
    Thanks guys for great ideas.. I'm going to add a few to my list. Ginger ale today. A bit queezy. No work for this girl today. Hoping to get soup cooking for dinner. Chinese takeout left overs for lunch. Enough sodium there. Looking forward to summer and having potato salad with pickles in it. Just can't do plain pickles
  13. Bigskyfam
    Thanks katybug! I like how your neuro thinks!!! Makes sense. I'm feeling better after rest water and Chinese food... Looking back I see what you are saying... When I first crashed and was diagnosed... My BP was low low low. Now it's better with salt fluids activity and lifestyle changes. I'm on no meds. Have a script for florinef. That's as far as I am today I do like your choice of words... Ick! That would've explained it well today
  14. Bigskyfam
    Hey guys. What a day. Went to work this am and like a light switch.... HR and BP are erratic!!! Nothing out of the norm... I stayed at work as long as I could... Sound familiar? Then called hubby to get me. So salt, water and rest. Chinese food. For dinner. My BP hasn't been this crazy in a while. I'm used to lower not higher. What about you guys?
  15. Bigskyfam
    Yes episodes like this that come and go
  16. Bigskyfam
    Welcome!!! I've been here for a over a year. I've found a specialist, learned lots and found understanding and a listening ear... Or eye. Hang in there
  17. Bigskyfam
    Warm welcome!!!!
  18. Bigskyfam
    I'm no meds and flaring a bit but not tachy. More chest pain, nausea and lightheaded. Contemplating trying something but worried about going down the rabbit hole
  19. Bigskyfam
    Guys it's so incredible of what works what doesn't and the form of meds as well. I hope you find something that works
  20. Bigskyfam
    But it makes me sleepy
  21. Bigskyfam
    I like zofran odt bug it makes me sleepy
  22. Bigskyfam
    Oh my I just checked ednf. You are right no testing for hypermobilty type which 80% of pots patients have. Thank god I don't have vascular... But I'm scratching my head
  23. Bigskyfam
    I had the panel thru mayo and Fam prac doc took it off the table. He did insist I should have an echo every 6 months. Should I see a geneticist? I live in a remote part of the country
  24. Bigskyfam
    Eds test negative....doesn't explain my aortic root dilation. Contemplating florinef. Scared after the lovely BB incident
  25. Bigskyfam
    Congrats!!! Where about in Utah? I'm one state away,up north
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