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Sleepbree

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About Sleepbree

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    Member

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  • Gender
    Female
  • Location
    Ohio
  • Interests
    Hairdressing, writing, knitting, baking.

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160 profile views
  1. I want to try to go off my bb. It has made me tired and gain weight and I am over it!!! anyone have luck with just the Mido?
  2. Before POTS I could take them 2 at a time and now I can't get up a flight or two without feeling like my heart will pound out of my chest. I have not passed out yet from POTS, but I can tell you I have felt the closest after walking up the stairs.
  3. Yes, I get this quite intensely. I want olives and pickles and pretzels!
  4. PS, as I understand it, if it is Chiari, chiro adjustments can worsen the condition.
  5. I have it and it was diagnosed with a regular MRI and a cine MRI. I have never had an upright. I definitely feel that there is a connection, however, my mm drop is so slight that the Mayfield clinic told me to take a "wait and see" approach. There is kinking in my spine and reduced space for the CSF flow, but there IS flow so right now not worth the risk of surgery. I had to request my MRI's from my neuro, as it was found on a regular MRI and I was told it's no big deal. After reading about it I realized I should have the flow study done, but again, I had to push for that. I was advised to see a Neurosurgeon as opposed to a neurologist while hanging out on the Ben's Friend's Chiari support page, and through discussions there realized that what I was dealing with symptom-wise was very likely POTS so they sent me on over here. Sure enough, that was the case.
  6. I have to correct this, it is actually called Ultima Replenisher!
  7. I just bought this all natural stuff from Whole Foods called Replenish and it comes in different flavors, I liked the Red raspberry best. It was super expensive though!
  8. Ok so this may be related to my Chiari then. I have a 3mm tonsilliar drop that is kinking my spine. Neuro says everything is fine for now but maybe it is causing this to happen. I will talk to her about it.
  9. I wake up in the morning (and sometimes the middle of the night) and my hands/arms will be numb, and I have the feeling that my hands are so swollen that I can't make a fist. It can't be that I am sleeping funny because sometimes it's both sides. Does anyone know why this would be happening?
  10. I am on the smallest dose possible, 2.5 3x's per day. Perhaps I am just sensitive? Things seemed a little better today but then again, I wasn't working on my feet all day. The bending over tip is great, I did not know that!
  11. I don't know if this is normal but I hope it goes away. I have a raging migraine and and it feels like my scalp is going to crawl off my head. Every time I bend over, I feel the feeling I would usually get right before my heart races up, but it doesn't, and then this huge chill happens instead. My standing hr has been in the 70-75 range whereas it was between 95-110. Sitting, 60-67ish whereas it used to be 80-85. In between does, and right before the next dose is due, I revert back to having a higher hr and it starts to increase again when I stand up, usually the hour before I am due for the next dose. I feel like I have been on a roller coaster all day, and also have this weird stare-y spacey feeling. Also, really emotional which is unlike me but I guess that could just be frustration at how I feel. If you are on this, did you have similar symptoms and if so, when did they abate?
  12. Today I had my tilt test and failed. I never quite passed out but I was certainly about to, they kindly lowered the table because they gained all the info they needed by the time I was about to drop. I went from 80's supine up into the 140's within 15 minutes. Throughout the test my bp was all over the place. So afterward my EP came in and said well, I think you have POTS! So in addition to the beta blocker I am on(50 mg Metoprolol, down from 100 mg), I was put on low-dose Midrodine to start and he will see me in 4 weeks to follow up and see how I am doing on that. I am so happy to finally have this acknowledged for what it is, I never got a direct answer from my old EP, the two tilt tests were like night and day (one in office with 2 nurses only, today's in a hospital setting with the doctor present). My old EP called it OI, IST, among other things. It seemed like he was reluctant to call it anything specific. Honestly, I wanted/needed a true diagnosis to know how to proceed with meds and frankly, life. So, I am hopeful the meds will make a difference and the moral of the story is what it always is: follow your instincts. I spent a lot of time wondering if I was doing the right thing by changing docs but overall, my old one wasn't providing me with the answers I needed, and ultimately kept raising my beta blocker every time I mentioned I was not feeling better; when in all reality, the high dose was making me feel worse. For the first time since July of last year, I actually feel hopeful.
  13. i just had mine today and my doc didn't want me to stop my bb. I failed the test anyway and he actually mentioned that had i been off of them i would have felt even worse.
  14. It seems like these tests vary so much. I just got a new cardiologist and he seems to think I may not have POTS based on my first TTT so now I have another one scheduled for this Thursday. I feel so nervous that I won't "perform" that day. I have good and bad days and I know something is definitely wrong. The main differences between this test and the last one are that only nurses attended my last test, and with this one the cardiologist will be right there, and this table is electronic whereas the last was a hand-crank table. Also, I was not given any meds to induce it to happen on the last test, so we shall see if they do that this time. The last test my hr went up over 30bpm, and then leveled out until around the middle of the test where I went back up steadily until I felt like I was going to pass out, I think up to 120ish iirc. There was never any syncope, however.
  15. I would be the same way! So, are your palpitations just "regular" now after the ablation or are you still having episodes of nsvt? I am having quick little spurts of nsvt, so quick in fact that I wonder if it's my imagination. It happens and it's over in a matter of seconds it seems. That, however, is an improvement over what I had been experiencing prior to the ablation. The thing that bothers me about it is that all of this began with similar 'little' episodes so I feel I am waiting for the other shoe to drop, in a sense.
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