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lamp_girl

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  1. I finally figured out that my muscle weakness is probably increased sympathetic nerve activity, as ativan and clonidine both help me. Will exercise in general make this better over time?
  2. I was recently diagnosed with MCAS, and exercise definitely causes it to flare. But I love exercising, and my doctor says exercising will be really good for POTS. Do those with MCAS have good tips on how to exercise?
  3. Recently I started having MCAS symptoms and hyperpots episodes, and my doctor is starting me on clonidine. The thing is that I'm not always hyper-- often my blood pressure is actually too low. I suspect getting my MCAS under control will stop a lot of the hyper symptoms. Would it be appropriate to take the clonidine just when I'm in a hyper crisis? I would take beta blockers instead but I react poorly to them and they make my MCAS worse. Happy for anyone's advice, especially if you also Have MCAS
  4. @Pistol Does your doctor think these are dangerous at all? (I also get the tremors and cold hands and feet, so I'm pretty sure we're experiencing the same thing). Every time this happens to me it's really scary, but I think if I knew I'd be fine afterwards I'd be less freaked out. Also is there any medication that has helped with these?
  5. When I have hyperpots episodes (high pulse, blood pressure, etc.) a really scary thing happens where all the muscles in my body go kind of limp (including the ones letting me speak, so I slur my speech, and the ones for breathing, so I have to put extra effort into breathing, which is extra horrible). Does this happen to anyone else? I did some research online and it doesn't look like adrenaline causes muscle weakness, but cortisol does. When I take beta blockers it helps with the heartrate symptoms but not at all with the muscle weakness-- only ativan helps with the muscle weakness. I'm wondering if I could have excess cortisol being released as well as extra adrenaline, causing my intense muscle weakness. Could that be a hyperpots thing? Could it be a tumor thing? Has anyone else experienced this?
  6. lamp_girl

    Muscles get sore easily

    I haven't been diagnosed fibro. I guess it's possible but I haven't been feeling significant pain--just lots of unpleasant soreness.
  7. I've been exercising at night, and on nights when I exercise, I'll wake up in the middle of the night with what I believe to be a huge adrenaline increase. It's not immediate-- it sets in several hours later I guess. Does this happen with anyone else? Would decreasing my exercise help?
  8. This may sound silly, but I saw it on a forum... I've had POTS for many months. I was prescribed propranolol for the first time, and even a 10mg dose had a huge effect on me-- dropped my heart rate a bunch and lasted for a long time. After four days, I started reacting to various foods and then was later diagnosed with MCAS. Is it possible that the propranolol triggered the MCAS? Has this happened to anyone else? If so, did anything work to reverse it?
  9. I feel like my POTS has gotten worse, and as part of that my muscles get sore from doing exercise very easily (e.g. when starting on some resistance level on a bike I'll be immediately sore whereas before it would take biking for 20 min to be sore at all). Has anyone had this experience? Is this fatigue, or fibro? Have you taken anything that helped?
  10. lamp_girl

    IVIG in the UK?

    Has anyone successfully gotten IVIG who is living in the UK?
  11. trying to figure out if I have mast cell problems-- when I have an "episode" I flush, can't breathe, heart beat is racing. ativan has been helping me, but wondering if it's a mast cell thing and benadryl would work just as well/better. People with MCAS-- does ativan work as a bit of an antihistamine?
  12. The last few days I've had several scary episodes, one of them took me to the ER, where I suddenly felt like I couldn't breathe/was hyperventilating, face flushed, got dizzy/lightheaded, muscles went limp, heart beat and blood pressure went through the roof, honestly thought I was going to die. In the ER they stopped it by giving me IV ativan. Since then I've been taking ativan regularly to prevent these episodes/stop them when I feel like they're coming on. They are definitely more likely to come on after I've been upright and active for a while, but they don't just go away when I lay down. It's been pretty strange because I haven't had many hyper pots episodes before, though then again my POTS seems to be worsening. When I was in the ER they though it was a panic attack, but I have never had a panic attack before and it feels strange that these come on only after I've been upright for a while. Is this a standard hyper pots episode? Is it an adrenergic storm? Should I be worried that I actually am going to die when these happen? So far they've only ended after I've taken ativan, I haven't tried to see what happens if I don't. What do people find helpful for preventing these? Do beta blockers work? I definitely can't keep taking ativan forever and would rather not live my life lying down.
  13. For a while I was trying to take BC pills to stop the flares I would have during my period. I decided the side effects weren't worth it and quit. A few days after quitting, I've been doing much worse with my POTS-- comparable to how I used to be on my period, except I'm not actually bleeding. Has anyone else had similar experiences? Did it get better after a while? Hopefully this is just a temporary flare but I'm worried I've made myself worse forever somehow.
  14. I'm thinking specifically Sjorgen's, but happy to hear about others too-- does the autoimmune disease mean you have an easier time treating the underlying POTS? Did it make the POTS symptoms more progressive?
  15. Just had my period for the first time in a while, and was just completely wiped out for about a week. I'm new to POTS so haven't had a real "flare" yet outside of this, and I'm curious what to expect-- do people with bad periods feel like they're worse than other flares, better, or about the same?
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