
Megan
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Everything posted by Megan
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I'm so sorry you are going through this. Hugs, thoughts, and prayers going your way! Meg
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P.S. Flop, you're hilarious!
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I go with POTS if it's someone important in my life. Explain the whole thing as best as I can. If it's someone who doesn't need to know, my fiance prefers to say that I have low blood pressure. He said from his experience (being a non-POTsy) people understand the concept of low blood pressure, but if I say I have a neurological disorder, people tend to think I'm nuts in the head. (which may be so, but that's not the point! :-p) Meg
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Praying for you and your test results! Meg
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I get this, too. Sometimes it turns into a muscle spasm that other people can actually observe, sometimes not. Meg
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Are you stuck lying down or in one position a lot? That could cause muscle stiffness. I get it sometimes, but only after having muscle spasms. I find ice and gentle stretching help me. Meg
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Veritable Olympic Training And My Coaches
Megan replied to Tachy Phlegming's topic in Dysautonomia Discussion
I'm too brain foggy to give you stats at the moment, but I did want to know that you made me laugh, which I needed. Hope you're doing okay! Meg -
Glad your son is home! Prayers for your strength & energy and that he continues to get better! Meg
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Does Everyone Here Get Tachy On Standing Still?
Megan replied to Nauthiz's topic in Dysautonomia Discussion
I feel tachy when standing still, but usually if I check I'm actually not (while on all my meds). Ask your doctor about anything that worries you. That way you can find out what's going on or at least get peace of mind. Meg -
Does Anyone Else Feel Better Later In The Day?
Megan replied to It'sMyLife's topic in Dysautonomia Discussion
I've never had a sleep study done, though that would be interesting. My dad has mild sleep apnea, but I don't think the two things would be related. I've decided that I don't care a whole lot why I feel terrible in the morning and better in the evening, as long as I know that's how it is. I've set most of my classes for evening for college fall semester (twice a week I have a noon class, but still not bad) and I set my own hours for work so I can choose to do parties in the late afternoon/evenings. Can't make my dr appointments work that way, but if I can make it work for me, all the better. M -
I'm so happy for you! Meg
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I'm glad you have nice weather! Meg
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At What Age Were You Diagnosed With Dysautonomia?
Megan replied to summer's topic in Dysautonomia Discussion
I was finally diagnosed with POTS at 18 (I'm 21 now) after a couple of years of passing out, etc, but I'm fairly certain I've been having symptoms since I was about 10. (One of the biggest things my mom points out-very dilated pupils. small, but a sign nonetheless). Before my diagnosis, I was diagnosed with vocal cord dysfunction and went to breathing therapy, diagnosed with various personality disorders, because obviously if they couldn't find anything wrong, I must be nuts. I had an endoscopy, went on an extremely low carb diet (which I hated), had a laporoscopy to look for endometriosis, we -
As terrible as "experimenting" is, you could ask to try a third beta blocker. Or, if you think your heartrate is going too low, ask if you should be on a lower dose. I am on florinef and midodrine, but am actually increasing my bb dose right now. As far as balancing the side effects, I'm really not sure. Meg
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I get a lot of POTS pain, the feeling like you've been run over by a bus that you describe. I don't have it every day; if I'm having other POTS symptoms, I'm more likely to have the pain. It doesn't go away when I lie down, unfortunately. I've talked to my doctor about the pain and what's normal (for me) and what isn't, so I know when I should be concerned and call for an appointment. I'd suggest that you be sure to mention it to your doctor in case it is more than just POTS pain. Meg
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If You Could Get Rid Of One Symptom...(just One!)
Megan replied to summer's topic in Dysautonomia Discussion
I almost chose fatigue, but it's the brain fog that really gets to me emotionally. I can usually handle everything else, but the brain fog gets bad and I just sit and cry. It's terrible. Meg -
Thanks for sharing! Meg
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I like it...especially the 1812 overture. Meg
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I'm on Depo Provera (the shot). It has helped me so much, even before I realized that part of the reason I couldn't handle my cycles was POTS. Plus, it means one less pill to take. Meg
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The Answer We Found Has Created More Questions
Megan replied to momma's topic in Dysautonomia Discussion
I do think the saline IV's work better. Drinking Gatorade, salt water, etc, is great, but sometimes I just can't catch up with what my body needs. The IV does it in a short amount of time right into the blood stream. By the time the IV is done I look and feel better. Meg -
New Here, Have Some Questions Re: Low Bp, Etc.
Megan replied to kady05's topic in Dysautonomia Discussion
I take Florinef, and also have to take a potassium supplement every day, as the florinef drained my levels. However, for me, it's worth it. Just a thought. Meg -
If you're nervous about eating, maybe try to eat bland foods as well just in case. But not eating won't help anything! Meg
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I am right handed but have more problems on my left side. I think it is because that hip is my "bad hip" so it kind of just throws everything out of order. Meg