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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, I also ruptured a disc in my lower back around that time, so other things were going on as well. I can't say the hysterectomy had anything at all to do with my current health issues. I can't say for certain it didn't though.
  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 things for longer and longer periods. Yesterday I spent about 3 hours painting my living room. I tried for 3 years to paint it before the IV saline and the prep work alone would knock me out for weeks. Today I'm noticeably weaker and feel a bit ill, but I still spent about 2 hours in the kitchen cooking - something else I never could do before the IV saline. I see many people recommending a recumbent bike. They're awesome. However, I tried and tried to build strength and endurance with mine and it never worked for me. It just required more energy than I could produce. Then I tried qigong (think of it as a graceful version of yoga) and began seeing improvement in days. There are a ton of theories as to why qigong can help with medical problems and I have no idea what the truth is. Nor does it matter to me. It worked. Period. Within a week my knee stopped buckling on me every couple steps and I decided to keep going and saw continuous improvements for months. Now I seem to have plateaued, but I'm going to learn a more difficult form soon to try and push myself further. Don't give up hope and keep trying new things. It's all about discovering what works for you. Sooner or later you may just hit on something that makes you feel better.
  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 single wedge pillows I've tried before. One day these wedges will be mine. Oh yes, one day!
  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 well. Cutting the dose in half (over a couple months) improved these closer to what I was used to pre-Florinef. In fact, it was just this morning I commented to my husband that the face puffiness is almost gone. Personally, I'm working at reducing my dose further to see if I still need it with the daily IV saline therapy I'm getting. Judging by the side effects I've experienced just trying to increase or decrease by 0.025mg at a time, I cannot believe staying on this long term is a good idea for me. It's just horrible how such a tiny amount can wreak so much havoc. Now that said, I am in no way, shape, or form suggesting you not try it, if that's the reason for your questions. It is a useful tool for many! I'm simply sharing my experience because when I began taking it, everyone I spoke with assured me the dose was small and I wouldn't likely experience many side effects. Unfortunately, this was not the case for me. I am very sensitive to medications. Not everyone is, but those who are might want to be cautious. I suggest starting on a very low dose (0.025 to 0.05) and work up slowly until you find a dose that improves your symptoms. This may require waiting a couple weeks after each dose change to allow any temporary side effects such as increased sweating, headaches, muscle cramps, etc. to end. Then up the dose again until you increase the dose but don't notice any increased improvement in symptoms. I let my doctor convince me to keep working up to the higher dose even though I wasn't noticing any additional improvement. It took longer to cut the dose by 0.1mg than to increase it to that amount and the temporary side effects both ways were really rough. But everyone is different. Unfortunately, the only way to know how you'll respond is to try it.
  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 huge part in how I feel each day. The IV fluids don't really fix this. However, the fluids work miracles in my recovery time. If it would have taken a week for my muscles to recover from overexertion before, I can usually recover in a day or two now. Best, even when I feel like a low-energy slug, I don't feel ridiculously flu-like sick on top of that. Hopefully, with some gradually increasing physical activity and exercise I can rebuild some muscle strength and improve further. Personally, I need the IV fluids every single day to be effective. At least for now. When we tried every-other day, it didn't end well. I plug myself into the fluids for 4 hours each morning right after I get up. By the afternoon of the day I skip fluids, I'll start noticeably declining. By the evening I'm back to being curled up in bed responding to, "How are you?" with "I think I'm dying." The next morning when I get the IV fluids again, I immediately begin to improve. However, my improvement didn't fully happen the first day I started IV saline, it happened over many weeks. When I don't take the fluid daily, I lose blood volume and have to start the fluids with a deficit again. It takes a couple days until I feel like I've recovered from missing that 1 day of fluid. I have horrible, tiny veins and I estimate IV sticks have about a 25-30% success rate with me. I've lost count of the number of golf-ball sized blown veins I've had with IV sticks. I've thought about this and even if I miraculously recover completely tomorrow, I think I want to keep the port for a while. Just in case I need an IV for any reason... LOL Now that it's healed, I frequently completely forget it's there, even when the needle is in. (The trick there is a smaller profile huber needle and careful positioning of the appropriate gauze from the dressing kit under the needle's wings to prevent it from rocking to the side with movement. Then make sure the Tegaderm dressing is relatively taut over the needle.) Of course, there are downsides as well. Most of the medical risks once the port is in place can be avoided by using sterile, proper techniques when using the port. The other biggy is physical appearance. The elevated area where it is implanted can be noticeable, obviously more so if the port is accessed. How noticeable will largely depend on the location it's implanted and your weight. Also you'll have 2 scars from the procedure. I have a couple scarfs to hide the area for when I actually care if it's hidden or not - mostly I don't care. Oh and even if you are not using the port, you will have to access it once a month to flush the line. Hope this helps and good luck!
  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. Try to stay calm and not overly fret about how bad you feel. The added emotional stress you place on yourself may only prolong the recovery in my experience. Of course, this is much easier said than done when you feel like a toddler was given control of your body's switchboard. Personally, I find mindfulness meditation to be a big help in getting through rough patches.
  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. Obviously, this is not a problem unique to geneticists, but frustrating nonetheless. It can also be difficult to convince other doctors to follow the geneticist's advice. My primary has no problems with this, but other doctors I've seen have not been so accepting. Some of them almost act as if my geneticist was just some quack - she is most certainly not but they're not familiar with my conditions and I don't think their egos handle that well. Overall, I think the geneticist has been the best choice for me simply because she's the only one I've met who is actually knowledgeable enough to look outside the box at rarer conditions.
  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 of life to take chances on improving it. Also, he doesn't have an ego problem when it comes to taking advice from specialists. He is the one who took the chance to let me trial daily IV saline and then ordered me the chest port when it worked. This was not easy for him. In fact, I wanted to have my chest port surgery at St. Thomas in Nashville. However, my primary already received enough "concern" by other doctors when we trialed it that he requested we use a surgeon whom he knew personally to minimize the amount of push-back he received. Years ago I lost a good primary doctor because a mean and ignorant ER doc disagreed with him and created such a ruckus that the primary wouldn't see me again. So while there are issues with my current primary doctor, I appreciate that he cares enough to stick his neck out for me. And, of course, I really don't want to risk losing my daily IV saline orders for any amount of time.
  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 though everything is physically more difficult when I'm doing poorly. Like break in a sweat, trembling muscles difficult. I think in my case I'm just burning through the calories faster as my cells try to produce enough energy to function (due to a probable mitochondrial disorder). Though if a person with only dysautonomia was attempting to be upright a lot, I imagine that could physically be equivalent to a work out. Even now that I'm doing better, I am still not maintaining my weight. However, I'm losing it at a much slower pace right now. My physical activity level is slowly increasing which accounts for some of the weight loss, but because of this I've also been trying to increase my caloric intake as well. I figure I've got about 10 more pounds to spare before I need to really worry or whip out some chocolate cupcakes. (Hehe. Kidding about the empty-calorie cupcakes. High value food for the soul though. )
  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 or give me the orders to drop it off at Quest or Labcorp..... It's a looooooooong shot. I figure it can't hurt to ask, but it will hurt a lot if I don't. My poor arm veins are ready to raise the white flag of surrender. LOL.
  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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