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Dustbunni

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About Dustbunni

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    Female
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    U.S.
  1. I had a full hysterectomy with partial oopherectomy when I was in my early 20's for polycystic ovaries and an unexplained uterine contraction/pain issue. I had no issues with the anesthesia that I recall. However, I had a surgery prior to the hysterectomy where I became hypothermic afterwards; otherwise I recovered fine. For a few months after the surgery I felt great. There was no more pain and I felt like my old self. My doc thought I was some kind of poster child for hysterectomy patients. Then I started feeling just generally ill and my first serious orthostatic symptoms occurred. However
  2. I was bed and house bound for years with dysautonomia and a host of other crazy symptoms (possible mitochondrial disorder). I was in a steady decline and there was no light at the end of the tunnel. Then my geneticist mentioned IV saline and about 6 months ago I had a chest port put in. Now I get a liter of intravenous saline every day. Between the saline and 0.1mg Florinef I'm up and about with zero to minimal orthostatic symptoms - so long as I don't push too far past my limits. In addition, many of my other symptoms have improved as well. Slowly I'm reconditioning myself to be up and doing
  3. Google: PureFit Adjustable Wedge System (Sorry, I'm not positive if a direct link is okay.)I have no personal experience with how well this pillow set works, but I've heard really good things and been wanting to try it for a while now. I can't elevate my entire bed, or at least my husband might not appreciate it as much as I would. I use lots of pillows at the moment, but they're never perfect. They're always slipping and sliding or causing some parts of my body to be more or less elevated and uncomfortable. This wedge "system" is adjustable and looks considerably more comfortable than the s
  4. In my case, the Florinef helps with stabilizing my blood pressure regardless of my orthostatic position. This led to feeling less light-headed and allowing me to be fully upright for longer periods. It alone did not improve my heart rate or much else significantly. In fact, at the 0.2mg dose I developed an overactive sympathetic response for everything except my blood pressure. It remained relatively even, though elevated on average. Temperature regulation and all else was truly shot. Oh and within a few months of starting the Florinef I began developing the puffy face and pigment changes as
  5. What excellent news for U.S. patients! Thank you so much for sharing this!
  6. I also have a chest port and get 1 liter of fluid daily. It has been wonderful for me. I think I've reached my "new" baseline with it. I can say my orthostatic symptoms are significantly improved. I can be upright again! My temperature regulation is the closest to normal I can remember (it's been a long time since "normal"). My brain fog is so much better. I still have heart irregularities, though my heart rate spikes when upright are not nearly as drastic now. I have to mention that I have issues with energy production (carnitine deficiency and possible mitochondrial issue) and that plays a h
  7. When I had to have B12 shots a few years ago I was told the excess would be excreted in urine and that there was no fear of overdose. I never had any negative side effects and for a while had the shots on a weekly basis.
  8. I'm chiming in agreement as well. Yes, dysautonomia can make shopping feel like a long-distance triathlon race. I consider myself improved with daily IV saline, but reading about your day of shopping made me want to cringe and just curl up in the fetal position for you. I still can't manage more than a couple hours of shopping and I do longer trips with my scooter or wheelchair. Add in the stress, commotion, and noise of holiday shopping and...no. Just no, I won't do it. Amazon has been my best holiday friend for years now. LOL. I'm afraid you're going to have to rest a bit until you recover.
  9. Sorry you're not doing better northerndarlene. I agree with dkd: You should request more comprehensive blood work. It may not provide the answer, but it is important to rule out causes that could continue to get worse without treatment.
  10. My geneticist experience has been mostly good. The in-office appointment was great. She did request a very thorough family history and performed a physical exam, but most of the in-office time was spent discussing my symptoms: how they started, how they progressed, what conditions seemed most likely and should be tested first, etc. She was definitely more thorough and understanding of the crazy mix of symptoms I experience than other doctors. It's after the appointment things get frustrating with trying to arrange everything via back-and-forth messages, often taking days to receive a response.
  11. Fortunately for me, my husband has a job that allows him to work from home except for occasional trips out-of-state to his main office. Unfortunately, this also means our insurance is out-of-state. While our local hospital will accept it for the ER and out-patient procedures, for some reason their lab will not accept my insurance. It makes little sense, but they won't let me use their lab because of that. I won't lie, my primary doctor is not my dream physician. He's not the brightest or most ambitious man. However, he is the only primary doctor we have found who cares enough about my quality
  12. I've struggled to maintain my weight every time I have pushed myself too hard or become ill and caused the dysautonomia to go especially crazy. Sometimes the weight loss is obviously from my eating less due to nausea (though we try to offset it with Boost drinks). However, there have been occasions where the nausea was not severe enough to change my eating habits and I still lost weight rapidly - about 10-20 lbs a month. Considering I would be confined to bed and completely sedentary during these times, that was significant for me. My metabolic tests have never hinted at a cause. Personally th
  13. E Soskis, why did you have to draw your own blood? HOW did you draw your own blood? It's funny you mention that though because I'm contemplating asking my primary next time I see him if he'll let me take my own blood for routine tests. I have a PowerPort. It can handle blood draws and is already accessed every day. In fact, I sort of draw my own blood each morning before starting my infusion to check for blood return. I figure I could buy the access syringes and take my own flushing supplies to the doctor's office. They can provide the tubes and "witness" the blood draw and then send it out
  14. Yay! We shall conquer our symptoms (and to-do lists) one IV saline bag at a time!
  15. The lab would have sent supplies IF one of my doctors would register with them and then request it. They would not send supplies to individuals. Seeing as how I couldn't even get my docs to locate the test/lab or acquire a green tube on their own, I figured asking them to register would be like asking the Easter Bunny to deliver Christmas presents - all just a nice fairy tale. Regardless, I might have tried anyway if I wasn't in a rush to have the tests done before the end of the year and my insurance out-of-pocket resets.
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