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Megan

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Posts posted by Megan

  1. As far as fluids, even though I am capable of drinking a ton of fluids without getting sick, every month-month and a half, I get a liter of saline. I have standing orders at a nearby hospital from my cardio, so when I'm feeling dehydrated I just walk in and receive treatment as an outpatient. If your daughter is really feeling sick, maybe a kick-start with an IV would help? Not cheap, of course, but it depends on insurance.

    Meg

  2. Before I was diagnosed with POTS, I was diagnosed with VCD. (probably a misdiagnosis I would guess...) Anyway, I was sent to a kind of breathing therapy for a while where I learned a lot of weird breathing exercises and how to lift/speak/yell without straining my vocal cords, as well as some stretches. I don't know if that's an option for you, but it might be something to look into. I don't think there is a cure for VCD? I hope you find a way to ease your symptoms.

    Meg

  3. Winter is a lot more difficult for me. Cold weather is terrible. I get too cold and just can't warm up; I'll shiver for hours sometimes. I use a sunlamp, mostly for depression, but overall it seems to help. I do not have a vitamin D deficiency. I take a calcium supplement with vit D and my recent blood work showed completely normal levels, so I know that's not the issue. I really think the weather is a big part of it. Also, winter in general has always made me feel 'blah' and sucked my motivation, which doesn't help. Compression hose help keep my energy up. Some people can't tolerate caffeine at all, but I find that a cup of coffee in the morning helps a ton.

    I'm sure stress is a part of it as summers are almost always better. However, usually fall and spring in school are not so bad health-wise for me, and winter is terrible. I always make sure to take fewer credits winter quarter. (We have fall, winter, and spring quarters at my college so this is easy to do.)

    Good luck with your son. My brother is in high school (with POTS) and struggling a lot as well.

    Meg

  4. When I saw your post, the first thing I was going to ask was about your meds! I know that I am EXTREMELY sensitive to medication, so I often have stronger side effects than what is expected. If more than one med is causing irritability, it could be adding up. Is there anything you could take that would do the same job without the side effect?

    Also, have you had your thyroid checked? My mom and sister both have hypothyroidism and oh my goodness...it was horrible before they figured it out and got on meds. Neither one of them has POTS, but a lot of people have both autoimmune disorders and POTS, so it might be something to look into.

    I think a couple of people mentioned antidepressants. Even if just temporarily, it might be something to look into with your doctor.

    You're not alone in this. I've been a lot better lately, but some days I do just hate the world and say/do things I wouldn't normally dream of. Hang in there, and come back and rant as often as you need to do so!

    Meg

  5. My Christmas present was a proposal and a ring....so I know that there are people out there! I had a high school relationship end because I was sick...not that it would have necessarily lasted anyway, being high school and all...but I think that some people are still stuck in that kind of mindset. With my fiance, we compromise. If we had plans to go out, and I feel too weak to go, he'll come over and watch a movie with me and then go out on his own or with one of his housemates. (we're in college). When I do feel up to going out, he makes sure there's a place for me to sit and that we can leave if we must (like if we car pool, we make sure he drives one of the cars). I feel like I'm getting a little off topic, but you can find someone who will love you "despite it all." I wouldn't be me if I hadn't gone through all of this-my fiance knows that. So know that it's not hopeless and jump back on the dating horse when you are ready!

    Meg

  6. In answer to the original question, yes I can see my veins. I'm very pale. I have EDS type III, but I think part of it is just being so pale. They bulge in my feet when I have blood pooling, but other than that they don't stick out. Getting an iv or blood drawn is horrible. They can never get a vein on the first try.

    Meg

  7. I have asthma and feel pretty terrible after using my inhaler (very tachy, shaky) but I don't have to use it very often because I take singulair and clarinex to keep my allergies and asthma mostly under control. Also, I try to avoid triggers when I can (cigarette smoke) but we have two dogs at home, and I'm allergic so I just wash my hands after I touch them so I don't rub dander into my eyes or anything.

    Meg

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