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MightyMouse

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Everything posted by MightyMouse

  1. I would be hunting for things outside to photograph...all over the world. I'd move to a tropical place and become the bug hunter (moths, butterflies, skippers), ID'ing them. I'd lead tours to show the beauty of the small jewels of things in nature that most people just walk by.
  2. I was told that a recumbent bike was a better choice for me by my ep cardiologist (not a POTS specialist). His reasoning was that in the seated position, my body is "more compact" and that it's not as hard for my bp and hr to stay in an appropriate range. The second reason was that if I did happen to pass out, I'd be seated, and already close to the floor, limiting my chances of a serious injury
  3. For me, florinef improved my overall energy level, my heart rate and bp, which in turn helped with dizziness. However, my doctor describes me as an über responder, and we had to take it off my treatment list b/c my baseline bp shot too high even the smallest possible dose, cutting a .025 into 4 pieces with a pill cutter, and taking one of those pieces per day. It's important to know that everyone responds somewhat differently. My doctor basically said some people are "responders" and others are not. Apparently, I certainly AM a responder, but too much of a good thing is a problem too.
  4. Happens to me all the time especially if I try to get a pulse from my wrists... rather, when that happens, I can only get it via my carotid artery. One of my PT's has commented how hard it is to find my pulse.
  5. I've lived through that 2x in the past 8 years... both for cats I had that lived to 23 each... was so so hard on me emotionally--and if you didn't know it already, emotional stresses will hit your body just as hard as physical stresses. Hang in there as it will take time to get through for you.
  6. I get the shot every year, and every few years, I update my pneumonia vaccination too. As someone who has been hospitalized with complications from asthma and pneumonia, my insurer waives my copay for shots every year because that costs them WAY less than an ER visit. I have gotten a mild, cold-like reaction but that's still nothing as bad as a full on flu, which can and does kill people every year.
  7. I think the site looks amazing--a big leap forward for us. It's so amazing to see all the planning, online meetings, emails and messages come to fruition today! Big sigh of relief and happiness, Nina
  8. Laying down often helps me way more than cooler temperatures... it's more about stabilizing my body's blood pressure than about ambient temperature. For me, very hot showers feel great until that moment when my bp starts to crash... I have learned to use warm as opposed to hot temps in the shower.
  9. I'm allergic to many medications including almost all antibiotics -- I was never tested for MCAD or MCAS, but I probably fit the profile. For me, it seems to go in cycles where my body reacts to anything I ingest that's not food, and then periods of relative calm. I also have allergies to ragweed, dog dander, some tree pollens, and mold, for which I take anti allergy meds all year long.
  10. A well worded letter from a lawyer may go a long way; you can also request that the psychiatrist's somataform diagnosis be removed from your records. I report to the medical board wouldn't hurt either. In my opinion, what the doctor has done is unethical--and in addition to that, his actions threaten to cut you off from the treatment by doctors who are willing to learn. Sadly you've learned the hard way that a doctor is no different from other people, he just has more schooling--and that doesn't make him good at what he or she does. One of the biggest failings of doctors I have encountered is that huge ego you've run into with this one--and an unwillingness to learn or to risk being wrong. Sad.
  11. I've actually found the most accurate way is also one of the least expensive: I use a manual cuff with a stethoscope to listen for the bp myself. It's very easy.
  12. Isn't it nice to have a little validation that it's not a psychological problem? It's physiological...and hopefully, the research will help to create treatments that work well.... a girl can hope
  13. If you call them, the Coolsport folks will give a discount to those using the vest for health reasons. Please note I have no personal affiliation with the company--I simply am a customer.
  14. When I had my personal genome done, the service does report on Celiac, and I'm negative. However, my GI doctor still has me avoid gluten as I may have an intolerance or allergy to some grains. I've also had the blood work and gut biopsy done but at the time, I wasn't eating much in the way of gluten for many years and was supposed to be at least 14 days with lots of gluten... think I made it to 5 or 7 days before I was too sick to continue eating the stuff. Doc told me to stop. I was having other gi testing so they did the biopsy during that just in case but doc felt I wasn't exposed to gluten long enough to see changes that would indicate celiac even if I did have it.
  15. Sure. I've had muscle aches and pains since early childhood, and also constantly complained that I felt overheated when everyone else was clearly comfortable.
  16. For those who may be interested, here's an interesting article describing, for the first time, a cause of fibromyalgia. While there still may be other causes (like there are for dysautonomia), at least for those with THIS cause may have treatment paths figured out in the future. http://communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/oct/17/fibromyalgia-solved-pathology-not-mind/
  17. I have a CoolSport vest, which was my first, and I replaced it after 8 or 9 years with a Glacier Tek vest. I had to replace the CoolSport b/c it got ruined in my garage by animals that had gotten in and made a nest in the container it was stored in (stinky). Personally I prefer the CoolSport over the glacier tek. GT vest gets damp with condensation whereas the CS stays pretty dry. I also find the velcro on the Glacier Tek vest irritates my shoulders and neck--the velcro is just too close to the edge of the straps --which is not a problem if you're wearing a shirt with a collar and sleeves, but I usually have with a t-shirt of tank top. They are both heavy--but stay frozen WAY longer than conventional ice (several hours --at least 2 hours in 90+ f. temp with high humidity). For me if I have to buy again, I'd go back to CoolSport
  18. Rachel, In addition to thanking Charlie Bray, I am personally saying thanks to YOU. I know this took lots of time, effort and phone calls to the server's hosting company and to Charlie--and that you, like many of us, are struggling healthwise. I personally appreciate the generous donation of the energy required to fix the issues. thank you thank you thank you. Warmly, Nina
  19. I think the test is pretty accurate, as far as I know, BUT, if you weren't in a bad period for your nausea, you may have shown normal results. I've had some tests show my emptying to meet criteria for gastroparesis, and my most recent test a few years ago was normalish...I think my retention was around 13%; I wasn't having a bad GI period at the time of that test. Part of the problem for me with the test was I was in true crisis when I called for an appointment, which took FOUR months of waiting; by then the crisis had passed. Not sure if this applies to your test, but I'm pretty sure it was what happened for mine.
  20. My doctor instructed me to increase my dose, to a max of 12.5 mg every 4 hours. I was permitted to titrate up and down as long as I did not go past 12.5 per dose. Some days, 2.5 worked great for me--my typical dose was 5mg to 10mg depending on hormone fluctuations. Around my period, I seemed to really need to bump it up. I only went to 12.5 a few times in the year or so that was on it. I went off of it, and off florinef, for medical testing. When I tried to restart the regimen, my body over responded --the florinef alone shot my blood pressure up way too high. I do have midodrine for emergency, but haven't really needed it--and am not too likely to use it again b/c, like the florinef, my body now hyper responds to it.
  21. I have seen Dr. Goodkin 2x about 10 years ago. He did help me find sleep meds that worked. I also live near Philly, just over the border in Bucks County. I see an EP cardiologist at Penn (8th and Spruce campus)--I've been going to him for 8 years now, I think? I did also see Dr. Grubb a few times and my local EP at Penn was more than willing to listen to what Dr. G had to say. I was one of his first POTS patients, but he's always willing to learn and has become a lot more knowledgable over the years and now I'm not his only patient. I don't personally know of any doctor in our area specifically focusing on autonomic issues. If that's what you're looking for, I'm certain Dr. B in NY could help--she is very knowledgable about autonomic problems and serves on DINET's medical advisory board. Nina
  22. Alex, I do yoga as often as my body will allow--at most I can get in 3 to 4 days in a row before I need a days full rest. I also have made some adaptations for some poses for when I'm too POTSy, and I do a great deal either on my knees or flat upon my back on my mat. I believe yoga has kept me out of the surgeon's office for more spinal fusions--and had helped me to maintain my core strength and my total stamina to deal with life on a daily basis. For those with more severe hypermobility than mine, it may, however, be a bad idea. As with all things dysautonomia, the treatments that work for you are highly specific to your individual situation.
  23. I take it when I have GI spasms--stomach and intestines--and I use the sublingual version. The only thing I notice for me is that I get a bit of dry mouth. It doesn't make me sleepy, which one of the others in this class of meds has done to me (bentyl makes me dry mouth, sleepy and constipated). Levsin is short acting--a couple of hours--so that's a nice thing if there are side effects, they'll be pretty short lived. Like nearly EVERY treatment out there, it's typically trial and error to find something that works for YOU. This med works for ME, but not for everyone. Nina
  24. Sorry for your loss--I spent all of last year in back to back to back grief, crisis and health battles including multiple hospitalizations. All I can say is I tried to take some time to do things that calm my systems--such as restorative yoga classes (done mostly laying on floor in simple poses for several minutes at a time), listening to my favorite music, reading uplifting books, watching movies that made me laugh, and most of all--resting as much as my body asked me to (although at times I had to give up on the rest because of things like funerals/wakes/care taking rotations of relatives at hospice, or pain). Be as kind to yourself as you can. Nina
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