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Thanks for the note of encouragement, Lauren! Sending a smile your way! Angela

Hi all! Just wondered if any of you have recommendations for a good CFS doctor? I was recovering well from my September crash (faster than usual, surprisingly) but have started slipping backwards at an alarming rate for no apparent reason. POTS is not acting up too much, but will if my health continues to regress at this rate. Regardless of this current backslide, I really ought to have someone trying to help me move forward -- I think I'd hit a bit of a plateau pre-September (although I'd give a lot to be back up there! ). In terms of location, I don't really care at this point. I would like to have someone in the NJ/NY/PA region, but am willing to be carted off to a research center if necessary. A physician with an open mind, good follow-up, and reasonably extensive experience are requested -- knowledge of POTS would be nice, but not necessary. My dad and some of his colleagues are making inquiries, but I thought I'd work my "network," too. Thanks! Angela

HAPPY BIRTHDAY, EM! I had a piece of cake to celebrate (yes real cake, not cyber cake!) with vanilla frosting and lots of pretty coloured sprinkles. It even had an extra dose of purple ones in honour of your posts! Hope your day is beautiful and shining! Lets us know what surprises your family concocts! Angela

I'll be sending you a PM soon! Glad you found us! Hang in there! Angela

Wonderful news! I'm glad everything started off so well! Keep us posted on all your shenanigans! With a toast of warm apple cider to Persephone's Progress, Angela

Sorry things didn't go quite as well as expected, Susie. I'm glad you were well enough to make it to the convention, though. I had one day about 3 months ago when I felt absolutely great. I felt 21 and was raring to get out of the house on my own. I went out shoe shopping at 9am and by 10:30am I was sitting in the car ready to drive myself home, ridiculously proud of myself for planning everything out so well. What of course happened to mar my blissful morning? The dratted car engine refused to start! After many phone calls and a long time waiting in the air-conditioned store, the tow-truck arrived at about 12:30! I felt so sick and exhausted and loopy! My parents were out-of-state, and I couldn't find anyone else to pick me up! It was miserable! Because of traffic (spent with a young driver relating his lonliness and asking me out on a date no less! ) and a hold up at the mechanic's, I didn't get home until 2:00pm. I haven't been out alone since! Thanks for keeping us updated! Angela

Hi Kristen! Thanks for starting this thread; it?s so interesting to hear what everyone is up to! I?m still resting at home, trying to get well enough to start college. I want to pursue a degree in International Development (maybe minor in history or African studies) with a certificate in Professional Writing (that?ll be interesting with brain fog! Probably get an award for Comedienne of the Class!). I?ll probably start off taking only one course per semester and trying to gradually work up as my energy allows. I?d like to eventually be able to travel and live abroad, although if that doesn?t prove realistic, I think I could probably find a desk job or work from home. Coordinating humanitarian work is my idea ? USAID, Doctors without Borders, Peace Corps, SIM, etc. I think it would be really great to work on developing and managing relief efforts, particularly in Africa ? it?s still so close to my heart. Until I?m healthy enough for university, though, I?m busy studying at home using courses from the Teaching Company and the Rosetta Stone Language program. I can pick them up and put them down as I need to. I also read a lot when brain fog isn?t too much of a problem. I usually help load the dishwasher, set the table for dinner, and help with one part of the meal. Some days I can even get a small lunch ready for my mom when she comes home from work. My main focus is studying, however, not housekeeping; I already know how to manage that. I was working sporadically on an editing job from home, but concentrating on making the transcriptions and so forth was just too mentally exhausting, so I?ve stopped that. I?m now gradually working on editing my parents? book about our time in Africa ? I find it much easier than the other editing work because I just have to read, as opposed to listening, typing, and then editing. I find it pure joy and as there is no time limit, I can work at my own pace. I?ve become very involved in writing letters and sending care packages to troops over in Iraq, Afghanistan, and East Africa, too. It?s very easy if I pace myself and it makes such a huge difference in morale over there! I also like the feeling of taking care of someone else for a change! I?ll do a little penmanship & calligraphy practice just for something different every so often. I work on some light gardening when I?m feeling up to it (I find growing pretty things very renewing) and when I?m too tired to do something else, I sit and watch the various birds eating from my bird feeder. At the moment, a little black-capped chickadee is staring through the window at me typing with a sunflower seed stuffed in his mouth! I find it very relaxing to observe their little antics. I?m very careful to pace myself ? if I push myself too much, disaster invariably follows. I do try to keep to some sort of normalcy (never stay in my pajamas, spend some time outdoors in the gazebo, don?t spend the day watching TV, etc.), but make sure I add a lot of variety to my days to keep my mind stimulated and my life interesting. I also find it much easier to maintain concentration if I work on several things for about 10-30 minutes rather than a few things for longer periods of time. I do what exercise I can, too, whether it?s pointing and flexing my feet on the couch or walking a lap around the living room or venturing down the driveway to pick up a garbage can. I?m not sure if I?ll ever be able to handle full-time work or college, but I?m preparing for it anyway. No matter where I end up, my life will continue to be filled with joy and beauty! From one lifelong student to another, Angela

I'm joining the party late, too, Marie, but wanted to chip in with my thoughts. I agree that it's definately a good one to at least try. For me it has been wonderful, especially since several of the normal meds were horror trips for me -- I rarely get tachy or feel like I'm going to faint anymore. I also don't have nearly as much trouble with feeling cold, although I was starting to notice improvement in that once I was able to get more than 2-4 hours of sleep each night! I didn't notice a big difference in symptoms until I had been on it 3-4 weeks as I reached the higher dose. By the time I got to the full dose after 6 weeks, I was doing really well POTS-wise. In terms of side effects, it can be rough on the stomach as ariella mentioned. Work up the dose very gradually (I think it took me 6 weeks to do it) -- I've heard from some people who didn't take the graduated-dose approach that it can be pretty uncomfortable. I always eat bread or crackers or something before taking it and wash it down with plenty of water of milk. I had some stomach cramps the first 2 weeks I was on it (very minor), but other than that, I've had a very easy time with it. I'll get an occassional day with stomach cramps every several weeks or so, but that's very managable. I think the extended release helped cut down on that, too, but I don't know for sure. It's not for everyone, but with the good responses so many people have had, I'd give it try. It's not really expensive, either! Hope this helps! Good luck! Angela

I hope so too, Miriam! Keeping my fingers crossed! Angela

Never heard of him, Jan, but would like to hear more about this paper. Do you have a link or anything? Thanks! Angela

Thanks! Angela

I'm not sure I quite understand the sleep time shift, Finette. Supposing I were falling asleep at 12:45 at night instead of my desired time of 10:30pm. How would the sleep sequencing go? Would I, in the hypothetical case, then stay up until 3:00am, then the next night 6:00am, and so forth, eventually sleeping through the day to reset my rhythm? Sorry to be dense about this, but I haven't quite caught the concept yet. THanks! Angela

Thanks for the input everyone! I'm a bit late in this thank you but it's heartfelt all the same. Brain fog & company have been having fun fest lately (took me 4 tries to spell "thanks" correctly -- good start, huh?! ). I'll keep you updated, Em. Persephone, I'm sending you a PM soon. Thanks again (got it right in 1 try this time! ), Angela

Welcome Susie -- I don't think I've run into you yet I. Have a wonderful time at the convention! Two of my dearest friends raise goats (3 right now). I got to go with them when they picked them out as kids at the breeder's farm several years ago. They are such sweet animals -- my friends' dad has a high stress job, so whenever he came home from work he'd take his 30 minute "Goat break." He found watching and playing with them very relaxing. Enjoy your time -- glad you're feeling up to going! Angela

Hi steamship! I've missed actually meeting you somehow, so I'll unfurl the welcome banner now. I hope I haven't done it before and brain fog has obliterated the memory.... At any rate, I don't know a thing about EDS, but I do have disabling fatigue along with POTS. As Nina already pointed out, it seems that a lot of people with autonomic dysfunction have trouble with fatigue. For me, POTS and the fatigue proved to be seperate entities. I can get the POTS pretty well under control with Mestinon and the usual precautions (high sodium intake, fluids, etc.) without much change at all in the fatigue. I do have several of the classic CFS symptoms (sore glands, etc.), though, which contributed to the diagnosis of CFS. Like Nina said, it's a lot of trial & error to find a treatment. Besides meds, I've kept very careful watch of what exacerbates & lessens the symptoms and have tailored my lifestyle accordingly. While it only helps moderately, it's much better than nothing. My dad always tells me to treat myself like someone who's recovering from a concussion -- do what you can, but once you push yourself too hard, you're only damaging yourself further. I'm sorry you're having to struggle with this wretched fatigue. While it's not life threatening, it can be SO life-disabling. Keep your chin up! Hope you can find some answers soon! I'm still looking too! Angela

Wonderful news about the house, Lois! I'm a tad jealous! I'm glad you have something fun to look forward to & the excitement of planning decor, etc. Enjoy yourself! Angela

I'm afraid I haven't the slightest idea about the oral pain. But I did want to comiserate on the continued "Medical mystery" -- it's so wearingly frustrating! Hope you find an answer soon! Angela

I agree that you should have it checked out. I've had all sorts of cardiac workups to figure out what my chest pains were (not a trace of anything wrong...of course! ), but it's important to err on the cautious side so you don't miss anything critical. Hope you find some answers! Angela

Thanks for the update Lois! I'm glad you have a good prognosis -- that's something! As for the Zofran...??????!!!!! Yikes!! You need to win the lottery! A very dear friend of mine (also with POTS) had to go through the same process when she was "living in the pink!" It was a time of utter exhaustion, physically & mentally, but she managed through and is now "free and clear." Hang in there! I'll be keeping you in my prayers! With love, Angela

Hi there Steph! Missed you! Sorry to hear all of the trouble you've been going through. Take care of yourself. Sending you a happy autumn mug of hot cider and a big hug! Angela

Sending you a late but loving WELCOME! I'm glad you found us! Angela

Sorry to hear your struggle, Ballroom! I've never had that sort of trouble when I was asleep, but awake...oh, yes! Had trouble with a director over the inexplicable memory problems -- "Why can't you remember the choreography? You always used to have it perfectly!" Ughh. Pooh had some good suggestions. I agree that you should let your doctor know. Apart from that, I don't have much to add. I can act really strangely with big, full-blown migraines -- stagger around like a drunk for a week and say lots of random stuff (clean, but random nevertheless! ). Memory goes completely out the window! Have you had any neck trauma that might cause vertebrae to go out of line or anything like that? That can cause neck pain as well as neurological problems like increased migraines. Just a thought.... When I've gotten tachy and passed out I usually come back around in a mostly lucid state, so I'm not much help there, either. Maybe your fiance has some imformation about the way you were behaving to help your doctor sort it out? Hope you're able to keep up with the pivots, etc.! Angela

Hi Pooh! Isn't it wacky -- we seem to be dropping like flies (or POTSies really )! In my case, it's a matter of recovering from major exertions (family emergency). The occasional cloudy days we're having in NJ haven't helped -- I'm beginning to wonder if I've developed Seasonal Affect Disorder (SAD). It wasn't a problem ever before, but since the onset of POTS & CFS, I'm noticing a definite shift in that direction. Goody -- more things to research! At least the weather is cooling down; don't have to fight it out with the heat anymore! Sorry you're not doing so hot yourself. Hope you climb out of the canyon soon -- at least you're not alone down here. Keep you chin up! Angela

Sorry you're feeling discouraged by the lack of responses -- probably got more from this post than the others put together, right?! I have been purposely avoiding much in the way of posts and e-mails but thought it very important to resurface for this one. Thank you for communicating your frustration -- it's the only way we can find out that there is a problem and try to resolve it. I'm glad that you feel comfortable enough to share with us rather than just leaving the forum altogether. Our forum has always been known for its friendly atmosphere; it's one of the things I love most about it. However, if part of the "family" is feeling left out, I think it is essential to straighten out the problem. Most of what I have to say has already been addressed, but I'd feel better if you knew that I cared no matter how repetitious those sentiments might be. First, I think a majority of us simply have little or nothing to add to some of the posts (not just yours). I know that I have no information of use on Chiari, MS, EDS, CVS, IBS, etc. -- I have none of those problems myself, so I have no first-hand experience. I'm still working on figuring our POTS & CFS! I know I'm not purposely ignoring you and I suspect most of the others are in the same boat. Our lack of knowledge is the problem, not unfeelingess or cattiness. I suppose we could post something to the effect of "I'm sorry you're feeling bad, but unfortunately I can't help you out," but several of us are so worn out that we are trying to conserve our energy to write posts that are helpful to others. I would be too exhausted to write anything worthwhile if I replied to all the posts. That brings me to my second point. Many of us are having a lot of trouble with symptom flare-ups at the moment. Autumn is always busy, and I suspect many of our bodies are rebelling under new workloads, environments, etc. There are also a fair number of people recouping from the stress of family emergencies/crises (I'm in that boat, too.). I'm struggling to just function (working my way back after major 2-week exertions), so correspondence has been low on my list of things to do. I even e-mailed a number of friends to let them know that I wouldn't be writing for at least 2 weeks. I guess the bottom line is that yes, it's very frustrating not to receive answers, especially when you're suffering. However, the reason most of us are on this forum is because we're all suffering too. Sometimes we can help, and other times we need to be able to just love you from afar. Hope this helped some. I'll try to be more attentive to posts when I'm feeling better. Wishing you a restful week, Angela

Hi all! Just wondered if any of you had tried or looked into bright light therapy? A doctor I know asked me to research it to see if I thought it might be useful for those of us having trouble sleeping. I've read up on it a little (http://www.cet.org/default.htm?pids.htm~main has a good explanation), but wondered if any of you have given it a try? Any results you'd be willing to share, positive or otherwise? Thanks for the input! Angela