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Great news, Dizzygirl! I've just found a good PCP with experience in CFS (& some knowledge of POTS) who looks to be just the right fit for my needs, too! I share your excitement! Angela

Enjoy your break, Lois. As a Belgian teacher of mine once said about me, "the day you return we'll have a feast!" Take care! Angela

MorganMuchMissed, So glad to see you back on, even for a brief moment! I'm happy to hear that your therapist sounds very supportive and is thinking this all through carefully! Take good care of yourself! Do keep us posted on how you're progressing when you're healthy enough. Angela

Welcome Sarah! Glad you found us! I just turned 22 in Sept.! I've had POTS & CFS for a year and a half. About the meds, I'm thrilled that they've helped you so much! I was on Midodrine and Florinef at first but the midodrine made me even sicker than before and the Florinef stopped having a positive effect after a while (caused really bad headaches, too!), so I discontinued those. Now I'm on Mestinon which really helps me a lot. Amy's suggestion about the high-risk OB sounds good to me regarding meds and pregnancy. I'm afraid I've never had experience with interstitial cystis -- from the sound of it, I'm very thankful I can say that. Sounds dreadful! Some of the other symptoms you mentioned that appeared after you started the meds I've experienced also, but before I hopped on the med merry-go-round! Have you spoken to your doctor about them or are they not enough of an issue that you want to try some new meds? Once again, welcome to the family! Angela

Dana, a fair bit of what I was going to add has already been mentioned, so I'll just toss in a little more. Yes, I think we all get frustrated at times, especially at the beginning. It's hard to to get diagnosed with this wacky condition and spend so much of the time unable to do normal activities. Do try to get in to see someone who understands dysautonomia & start testing medications -- my symptoms are pretty well controlled on meds. In the meantime, be of good heart! It does get better! In time, if you work at it, you'll get to know your body's triggers and responses pretty well -- the my-BP's-dropped-because-the-shower's-too-hot dizziness vs. I've-overexerted-myself dizziness, etc. You'll have to re-adjust your physical expectations of yourself to handle the daily change in ability (which was very difficult for me -- rather plough through pain than make myself do less, but I've since learned! ); it's just part of the process. Remember, this is not a death sentence by any stretch of the imagination! It's up to you how you handle this new challenge -- crack jokes from down on the floor, learn to happily work around your new limitations, and dazzle yourself with your creativity in modifying potentially dizzying situations! I tended to feel far worse in the mornings (felt best about 11:00am-3:00pm), but towards evening after the long day, my symptoms would start revving their engines. I've felt dizzy sitting up, lying in bed, walking...in all positions...the full reperatoire; fainted fully twice, too! However, I was usually upright to some degree (sitting or standing). It's annoying, but you'll learn how to minimize the likelyhood of it happening. Try to pay close attention to patterns in your dizzy spells -- do they come when you've been using your arms above your head, or been near a heat source, or been changing level (sitting, standing, reaching down and coming up too fast, etc.), or haven't had enough sodium, etc. The study of yourself can be VERY useful; see if people living with you are noticing any patterns, too. It won't solve all of the problem, but is a great preventative measure and helpful for your doctor to know also. As for the headaches, I'm afraid many of us get them too. I'm not much help there. Angela

Welcome Dana! I'm so glad you found us! Yes, POTS can be very confusing (even for the MDs! ); it doesn't help that there is a shortage of reliable information about it. THis is a fantastic site, though; lots of very good medical info & other people's experiences to draw on. Feel free to ask all the questions you want! As Carmen said, the POTS path tends to be pretty individualized although the general info you find on Help Yourself will probably come in handy. My case seems to have erupted out of nowhere (no virus, pregnancy, sudden trauma...zilch); still a mystery! Please feel free to PM me anytime with questions or if you just need to talk things through! With love, Angela

Lisa, I'd check that dose out VERY carefully! That's tremendously high to start out on. It took me about 5 weeks to work up to it, and I still had slight stomach disturbance. Every doctor I've spoken to about Mestinon wanted to make sure they had worked up my dose slowly, so I'm a little concerned that you MD wants to throw you into a full dose. Unless you have an incredible stomach, I'd double check on the dosing plan! Angela

I've not recovered fully, but the POTS end of things is pretty well controlled on mestinon -- flairs up when CFS gets bad. The electrophysiologist I saw at UPenn said that he had some POTS patients who had a full recovery (of course, I never met them!), as well as some that were leading normal lives on medication. Angela

Welcome, Corina! Glad you've given up lurking and let us meet you! Angela

Not in Oregon (sorry!), but wanted to send you a warm welcome from NJ anyway! Hope you're able to find the help you need. Ask all the questions you want -- we're always happy to help as much as we can! Angela

Haven't really noticed much of a difference on the XR from the regular. I just feel like it keeps the dose more regulated -- and I only have to remember to take 1 instead of 3! I prefer the XR. Angela

Great news! Enjoy your time! Angela

Welcome! My first TTT was inconclusive, however, my symptoms were such that POTS was suspected anyway. Out at the Mayo, the TTT along with history of symptoms suggested that I had mild POTS. I only had tachy episodes (really bad ones) every so often, not on a daily basis, but I would get somewhat tachy with usual things like standing up, etc. Most of the 24/7 disabling symptoms (other than the fainting when I stood up) were related to the CFS end of things. Angela

HAPPY BIRTHDAY! Hope it was full of joy and lovely surprises (Good health, maybe? )! Angela

Thanks for being so supportive of your wife, Dave. It's got to be so rough on you, too. Wishing you and MorganMuchLoved a peaceful time of thought and resolution. I'll be praying for physical and emotional renewal for you all. We'll be waiting patiently until she's ready to return to us. With all my love, Angela

Welcome Lauren! Angela

Glad you're back home, Blackwolf! That's wonderful news! Get lots of rest so you can heal. Don't worry about us; we will patiently await your return! With love, Angela

Hi Jamie -- don't think I've met you before. Welcome! I'm sorry you're having such a rough time -- iyou're right, it is difficult to have an illness that's so invisible to the rest of the world. I'm thrilled that you were able to get a clear diagnosis, though. That's a big step forward -- at least now you know what you're fighting against and can work on educating others. Not much of a comfort, I know, but it's the truth! DINET is full of great info to help you take care of yourself. When in doubt, we're always here to help out! Angela

Happy Birthday! Enjoy! Angela

Thanks for the tip! I'll be sure to check on that! Angela

Have you thought of names yet, Ling? From an avid name-lover, Angela

I always get a flu shot -- it does make a big difference for my winter! The one year that I didn't get it, I had had every round of flu that came my way. I don't get even a hint of a reaction from the injection itself; maybe a little soreness on the arm the second day, but nothing beyond that. I know far more people for whom the shot is a big help than a hinderance. Angela

Glad to hear you've got such a sympathetic tutor! It's so exciting to hear you up and about at Oxford -- just like out of Dorothy Sayers' Gaudy Night, English department dons and so forth. The book makes it sound like such a stimulating atmosphere. Hope things move along with your Disability situation soon. It has to be frustrating to have that hanging over you, especially on top of the frantic pace your academic work load demands. Take good care of yourself and have a marvelous term! With love (and eager anticipation of Persephone's next volume of Life at Oxford) , Angela

I'm so happy for you, Ling. Hope things continue to go well! Angela

Thanks for the link, Louise -- I'm checking it out. By now, I'm very resolved to the fact that there is no handy-dandy presto-you're-better-again pill or treatment. I'm just looking for any new ideas that could keep me from where I was a year ago -- I hope I never drop that low again. Thanks for the reminder, though -- it's important for us to remember. Much thanks , Angela