Megan

Happy (very) Belated Birthday!

Praying for you!

Sometimes I WISH I was a cat so that I wouldn't feel guilty sleeping so much!

I had cramps until I started taking potassium. So definitely get it checked out. Meg

I've had an irregular heart beat before, and I definitely think it feels strange. It usually comes with really high blood pressure (last time it happened I had to go off of my meds for a couple months until my bp came back down) Glad you've been doing better!

I've been on Prozac for a long time, however, I started it when I was just being treated from depression (coming from not knowing what was wrong with me, before the pots diagnosis) so I'm not really willing to change to a different SSRI when this one seems to be working so well. I've been on lexapro, but that didn't seem to help the depression, so I didn't stay on it. Meg

I almost always have my legs tucked up under me when I'm sitting in a chair. I'm short and my legs usually don't touch the ground, so they just hang, which I find makes the blood flow worse. Meg

My exercise schedule definitely depends on my symptoms...although I do find that when I can exercise I feel quite a bit better...it helps a lot with the brain fog. If I'm feeling okay, I can usually get on the eliptical for half an hour or so at a pretty good speed. I just have to be sure I pay attention to what my body is doing and drink a LOT of fluids. I don't know if it's a POTS thing or a me thing but I sweat a lot, so I have to be extra careful to not get dehydrated when I work out. And when I do work out, I go with a friend, just in case something were to happen. This is kind of rambly...but I hope it's helpful! Meg

Hi Jacquie, I have lightheadedness when I get up; I set an alarm for about half an hour before I actually want to get up, eat a granola bar (cause I need food in my stomach for meds) take my meds and go back to bed for half an hour. That way, my meds have some time to kick in. Also, when I get up, if I sit for a while before I actually climb out of bed it helps. I hope you find a way to feel better! Meg

So sorry you had to go through this!! My doc is a little over two hours away from me, but I find it to be worth the trip just to see someone who knows what he's talking about!

Happy Valentine's Day!!

I don't have my exact numbers, but I do know that my heart rate only went up by 20 something. (28?) However, I was already on Prozac for depression when I had the test, and have been diagnosed with full blown pots due to my symptoms.

This isn't quite on the same plane, but I found my long-term boyfriend after I got sick. We're both 20, in college. I think it's nice to know that even a guy in college is willing to stay in some nights and watch a movie or go to bed early because I'm too tired to do anything else. Again, it's not marriage, but we've talked about a long term life together. He worries about health insurance (with all of my meds and such) if we do marry, but he knows what to do to take care of me. He knew what he was getting into from the beginning and even though I lost basically all of my high school friends and a boyfriend being sick, he's stuck it out. (I'm quite proud of him!) He does get frustrated some times, but more with the disorder than with me. So, after a bit of rambling...I think there is hope. I'm young and maybe naive but I have to think that there have to be men (and women) in the world of all ages in all places that can see an actual person, not a sickness. Meg

Happy Birthday!!

I went to wish you happy birthday and then saw that I already had...but I hope it was a good one! Meg

When I asked Dr. Grubb if I would be able to safely have kids someday, he said absolutely, especially since he believes I'm beginning to grow out of at least some aspects of POTS. He did say, however, that most of his patients end up seeing a high risk doc because regular obs don't want to risk taking any chances. He also mentioned that while I probably wouldn't experience any more difficulties in pregnancy than an average woman, but if anything did go wrong, it would be caught sooner with a high risk doctor. (For the record, I'm not quite 20, so there's still hope of my growing out of this....at least somewhat, so that may make a difference as far as someday having kids.) Meg

Hi! I'm on both of those meds. The Cerefolin took a while before I noticed a bit difference, but my concentration progressively got better and it's helped immensely. I honestly don't think I could function without it. As for Mestinon, my biggest problem was nausea. I started out taking a quarter of a pill a day and very slowly worked my way up (I take one in the morning and one at night now) because I am super super sensitive to meds. (I think this is a POTS thing?) As far as hot flashes and headaches, I get those anyway, so if I had them as side effects I wouldn't have noticed. (which is often the case...sigh) Anyway, I had some other side effects from Mestinon that I can't recall at the moment (some brain fog here) but they did eventually go away (even though it felt like forever, as long as I eat plenty before I take it I'm fine), and Bev at Dr. Grubb's offfice said to stick the side effects out if they weren't too bad because they would go away. Also, as far as Mestinon making you feel better, I never really felt that I had an 'aha' moment or that I could stick my finger on why I felt better, I just kind of eased into feeling better than I had been, if that makes sense, whereas with some meds it was like "yay, this is finally helping such and such symptom." So I would say stick out the Mestinon (unless your doc says the side effects are a bad sign) and it still has a good chance to help. I hope my some of my rambling makes sense. Rough POTS days make for confusing posts. :-) Meg

Happy Birthday!!!

Hi! I'm glad things are good so far! I just wanted to let you know that as far as the abdominal pain, I've been there. Before I was diagnosed with POTS I almost ended up addicted to Vicodin trying to stop the pain; it didn't really help, we just didn't know what else to do. Now I use heat and know that it will pass and it's not anything too serious. I hope that your search for answers continues going well! Meg

Hi Mary, I've had this happen frequently. The most recent time was a firedrill in the middle of freezing rain. I was in my pj's (not much clothing there) and I passed out from the cold temperature. I was violently shaking for a couple of hours, even with piles of blankets and a heating pad. It took me what seemed like forever to warm up. My POTS is really irritated by cold weather and such. (hot, too.) It's horrible, I know, but I think it's just another crappy part of it all. Meg

Hello! I just wanted to add that I'm a college student currently arguing with my university about my disability accomodations plan. (They're concerned that I'm missing too much class....the missing class comes from not being concious all of the time...) The school is asking their lawyer what they can legally do as far as saying I can only miss so many days, etc. If you'd like, I can let you know what they say so that you have some idea of what you might end up fighting. Meg

Hi Melissa, I forgot to watch it when it re-aired, and I'd love a copy of it. I hope you figure out your new gizmo. Half the time I don't even understand instructions for those things. :-) Meg

I can't think of any tips that others haven't already mentioned, but I wanted you to know that you're in my thoughts and I'm hoping that things start to get better for you. A humidifier definitely helps me, especially when I'm sick in the winter. I hope you figure out what's going on and the doctor can help you fix things up! Meg

Hang in there! You're in my thoughts. Meg

Happy Birthday!