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Everything posted by Lemons2lemonade

  1. Sjogrens can come with small fiber neuropathy and dry eyes. Hope you get it under control, sending prayers!
  2. Having some fear is very normal, I just decided if I was going to die, there really is no good place to do it so I might as well be out doing something...just as long as it's not an activity that can hurt anyone else
  3. Google foods to avoid with high blood pressure and eat them
  4. I fly often and it doesn't feel good. I always feel bad when the door closes and cabin pressure changes. But, to date no major issues besides discomfort. Also, I chug a water bottle before take off
  5. Dr. Chemali is in Norfolk, Va. It's not super close, but it's drivable He has an autonomic lab there.
  6. Yes, for me standing exercising always aggrevates it about 1.5-3 hours afterwards. I swim now instead and it is a much better option for me. When I had pots symptoms exacerbated, it would always escalate at sunset. I do get lightheaded from sitting long periods of time and get lightheaded without tachycardia. For me standing still is a lot worse than moving around like housework etc. And yes, there are good and bad days.
  7. Yes, but when my heartrate was that high there was no way i could do cardio. I started by just doing leg lifts in bed and forcing myself to sit up/stand. It probably took about 3 months of doing that before i was ready for any cardio. For me i had to do a slow transition into exercising. It's hard at first but it gets easier as time goes on and it takes a lot of courage, persistence, and determination. But it is totally worth it in the end.
  8. The first line of defense is salt and water. If that doesnt work, you can always talk to your Dr. about florinef/fludrocortisone...i don't know alot about ivrabadine or how they would interact together. For me the salt and water didn't cut it. Neither did metoplerol(beta blocker), or midodrine. I definitely avoid garlic though not sure if you are using that in your new diet...i actually started eating garlic before being diagnosed thinking it would help me...ha. Basically any food people with high blood pressure are supposed to eat you may want to avoid. Also for some reason pedialyte made my
  9. I wonder if there is some sort of tie between broth and the immune system. They always say chicken soup helps with colds, in mexico it's beef broth, in vietnam it's pho. That means multiple cultures around the world are using broth to feel better during illnesses. I wonder if this has something to do with how broth is made--usually with bones and inside bones is where the bone marrow is. The bone marrow is where white blood cells are made that fight infection. I know people say its just the salt and fluids but i wonder if there is something more to it.
  10. Thank you Corina, my POTS is doing well and is under control and i want to have a baby! I am still taking florinef daily and am getting ready to ween off of it. I have moved recently and get to see Dr. Chemali in Norfolk, Va (i guess he opened up a full autnomic lab there), and am hoping he can guide me through the whole pots and pregnancy thing as that is uncharted territory for me.
  11. Hi Lilly, I am sorry you are having so many issues going on. Its never fun when our bodies rebel against us! There are different doctors who treat dysautonomia but from the sounds of what you are experiencing you may want to see a neurologist and an endocrinologist. I found that learning about my disease and diseases in general which could be causing symptoms helped me learn about and eliminate other things when i didn't know what i had via online research. Also, when these events happen, keep a journal with dates and times of what you are feeling and try to describe it the best you can--
  12. I have beau's lines on both of my thumbnails
  13. I loved acupuncture. It really calmed me down and relaxed me. I also get massages now periodically that also help me relax. And this might sound kind of lame but i have found crossing my arms helps with my lightheadedness.
  14. Hi Kalamazoo, I have been reading your posts and that is really interesting about the inflammatory process indicated. I hope they look for and find what is causing it...possibly something autoimmune? Are your joints hyperflexible? I know no one looks forward to that, but at least you can get the right treatment to actually help your symptoms. Sending positive vibes!
  15. If you aren't working, try getting on medicaid/obamacare if you can.
  16. I used to have this problem and my ssri helped with it. No longer taking the ssri and don't have it anymore.
  17. Yes, it happened to me and for me an ssri helped with this.
  18. Mine actually does this thing now where I get a click in my chest and then my whole body just relaxes and actually kind of feels pretty good. I dont know, its weird.
  19. If you aren't driving, laying the seat back or putting one or both legs up on the dash helps me :). I also always cross at least one leg as a passenger.
  20. My pots is under control but i get numbness in my hands and arms ALL THE TIME. Its really annoying and happens almost every morning when I wake up.
  21. Hi Kdub, I had that happen to me when i was taking midodrine. I'm not sure if the midodrine caused it or not because even after stopping it, it would still get low sometimes. But while on the midodrine it dropped down to 38 at the lowest and would hang around 45-50 and improved after i stopped taking it. Perhaps my ssri dosage also impacted this because i reduced it and it got better. I would say anything below 45 consistently merits an er trip and try to get admitted for bradycardia if you can--if they dont have an answer try to get them to admit you until they find that answer. I have
  22. I used to do all the prep work sitting and then bring a chair to sit down on in the kitchen while things were cooking
  23. Who here has either weaned off of florinef or gone through a pregnancy while on it? What was your experience like?
  24. It feels like i could sleep forever at times but i always end up forcing myself out of bed at around 10 hours.
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