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Everything posted by Angela

  1. Tori Amos, Mazzy Star, Tricky, Massive Attack, Portishead, Perfect Circle when doing yoga/stretching if I was doing cardio of any type then Tool, most Pearl Jam, Marilyn Manson, Flyleaf, STP, Lana Del Ray
  2. I meant clinical & whatsoever, ha ha! not going to edit if I misspelled anything else
  3. exactly. why are we catogorized as a "disorder" and not a "disease"? who comes up with this ****? i mean, i dont take a beta blocker because I don't tolerate them well, but I take more antihistamines then the label on the bottle says to take(only double what they say, ok:)) and although I feel better because of that, I don't feel that I am cured whatsover....if I was "cured" I wouldn't be on anything I would think! my neuro symptoms have diminished alot on h1's and h2's 2x per day....for how long and is it a coincidence or helpful IDK, but I still have clinal pots (I am a junkie of testing my hr and bp every day, just don't feel so crappy as long as I don't have to stand long and when my hands and feet aren't cold and tingling all the time and the tinnitus and vision issues aren't bad) regardless, what are all these quick fixes we do take for "now" symptom relief going to do to me/us in the long run. INCLUDING BB's!!!
  4. llcsmom, do you have pots or anyone in your family with dysautonomia? I'm so sorry for your children; I hope and pray that my son doesn't have to go through this thing.
  5. don't mean less complex..........but the variations of dysautonomia's seem to have such common variables............it's almost like, was I dx'd with this just cuz they have no other explanation right now? I read other forums (not just PXH rising, just a coincidence of what I usually check out other than dinet or one or two others on occasion) check these conversations out: http://forums.phoenixrising.me/index.php?threads/pots-vs-nmh-in-people-with-me-cfs.11277/ http://forums.phoenixrising.me/index.php?threads/new-cfs-and-inflammation-paper.17509/ http://forums.phoenixrising.me/index.php?threads/new-forum-addressing-mast-cell-activation.20278/ http://forums.phoenixrising.me/index.php?threads/suggestions-for-avoiding-external-triggers.20518/#post-312955 I couldn't locate the thread that i was acutally looking for where this guy (I think a guy Nanug or something like that was discussing symptoms of mast cell), that was when I started this post but I just think how crazy it is that how many forums I have checked out from MS to CFS to ME to Gilberts to RS to AS to EDS to mcad to even more..............our symptoms are so much the same! and how many of us have, over the years earned more and more dx "medals" on our belts.
  6. J....you got it.......don't worry:) u r so smart xoxo
  7. my opinion is that most docs, either cardio's, ecardio's, or neuros will start off on a beta blocker or alpha/beta blocker as treatment. U just have to argue if you have a gut feeling it's the right try for u, or not. My neuro tried to put me on clonodine, and I said No, No, no, no....................LOL. Funny, cause I was the one who asked him to prescribe it which he totally agreed with, but afterwards I didn't want to fill rx cause had a feeling i would get sick. But......at least he listened to me and prescribed one of the "protocol" for hypers. Albeit, when I asked about Mast cell, he, along with most docs said it is very hard to test for and on my own research, after taking h1's and h2's, although I dont "flush" it seems to help so much. I'll try to post more on that later sometime from another forum i look at. The symptoms for pots and mast cell issues and other dyso's are so similarly ridiculous I dont know which turned the kettle black. did I say that right?
  8. i dont do polls cause it seems like there are so many diferentials usually unthought of or left out.............. i will post another poll type post in a minute...........
  9. have you tried visine? That helps me. My eyes get dry and red sometimes
  10. I guess I would take it as a compliment although irrelevant
  11. Hi MaidMarian, I have been reading a lot about this and I know there are several theories out there relating to diet and ccsvi and dysautonomia. my sister has ms and I really wish she would follow the mcdougall diet - I plan on trying it soon (just hate to give up the dairy!)
  12. resting usually 65-80, varies. sitting 80-100 varies. standing 110 - high 120's. Sometimes even sitting in 120's on random odd days. I'm not on any bb meds. & like Batik my standing hr much improved when I started antihistamines, also improving my bp swings. It used to be 140's to 160's standing in the a.m.
  13. mine are almost always identical, within 2 digits....however I did read somewhere that they should be consistant, if they are not it could indicate some obstruction or blockage. That is just what I read a while back before I was dx'd with pots and trying to figure out what was going on, I read that I needed to take it on both arms to make sure the read was more or less the same.
  14. I use generic allegra & pepcid in the a.m. and p.m., taken at the same time. Used to take zyrtec and zantac, don't notice any difference between the two combo's tho.
  15. When this happens to me benzo's makes it go away. In fact, I hardly have surges any more.....hopefully that stays People seem to have such strong opinions on benzos and how bad they are but I don't care what people think if it helps me:). Also, you could try coherent breathing which works similar to biofeedback in a sense. I think its 5 inhale/exhales per minute. But it is challenging to do in the middle of an attack, you kind of have to practice
  16. Interested in hearing how many follow a restricted diet, why,does it help and in what way
  17. A friend of mine sent me this......shows how hard it is (especially if you are younger or currently working) to get approved. Hiring an attorney seems to be the best way to go. http://www.ultimatedisabilityguide.com/grid_rules.html
  18. I would think that it is likely if you skip a dose because you don't feel tachy you could become hypertensive.
  19. I am gluten free for about 6 months now and although I can't say it makes a difference for me it does keep me from eating a lot of junk food:) I have slipped up and eaten gluten (I made spaghetti with rice noodles) and lo and behold a week later I was going to make rice pasta again and I turned the carton over and the first ingrediant was wheat. However, I didn't notice any ill affects after eating it. I am just sticking with it because I have fam members who are gluten intolerant so why not for now. If I decide to go dairy free or vegan ever (gulp!...I love dairy) I may incorporate a little bit of whole wheat back in my diet. We'll see.
  20. mornings feel like ****! I take my klonopin, drink a glass of water and lay on the couch watching cartoons with my son for 1/2 hr before I force myself to get ready for work. Afternoon/evenings are usually much better right now although for quite a spell I was having tremors and hearing/visual distortion come and go throughout the day.
  21. I'm not on Gastrocrom but my friend who is hyperpots and was rx'd it recently said it is nasty stuff and gives her horrible mood swings like being on steriods would.
  22. I think it's cool that you improved and are med free
  23. Were you on any meds and are you currently on any meds?
  24. I take an allegra and pepcid in the a.m. and then again at night. Last week I was short on cash and took both down to one per day and noticed a difference....more potsy feeling. But although not dx'd with mast cell (havn't pursued dx's, just mentioned it to my neuro) I found that taking the antihistamines definitely helped tons of symptoms. Even when I started with zyrtec/zantac and then tried claratin for awhile I was in better shape then before taking antihists.
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