rdslots

Depending upon the manufacturer of the shirt, and composition, ie. 100% cotton, pre-shrunk and the like: I would like to initially order at least 4 T-shirts in (2) Adult XL, (1) Adult XXL, and (1) Adult M. If the cotton is pre-shrunk and the sizes, true, this would work. If generous, in size, and some T-shirts are, moreso than others, I would probably go down a size, and the reverse would hold true, if the shirts are of a more in-expensive nature, in which case, I would want everything a size larger, if available. We have good luck with Hanes Beefy Ts here, where we sponsor a design contest and have the shirts printed annually, for a RiverFest celebration. The Ts usually sell for about $10 to the public for adult S - XL, and plus sizes run anywhere from $2 - $3 higher. Given this is a cause near and dear to my heart, every pun intended, I would pay up to $20 for a shirt but would really like to see the price stay in the $10 - $15 price range, as I have indicated I would like at least 4, to begin with. Depending up the price of the shirts, it might be nice to buy one for the DRs who oversee my care.

Something occurred to me -- why am I having to log-onto different websites to get info, re: dysautonomias? It really seems to me that ALL of US could get together, and combine our efforts into one unified site. Maybe assess the strengths of each, and use those to our best benefit(s) -- I find myself going to one site for medical info (they seem more professional in a way) and yet another to get questions answered from people like me, suffering with these disorders, and yet another to just hang-out and be myself, the person I am, locked away in this pitiful body? We could even add some things I don't see addressed other places, like resources for the medical profession, or info for newbies trying to apply for disability, etc. Seems to me we could/should look into something like one site? Is that possible, and has anybody ever explored it before?

Sorry about the mood swings. I wouldn't think it's the midodrine, but all of this is fairly new to me too. I am on midodrine for the 2nd time now, after not responding well to it almost three years ago, but I only take a 2.5 mg dosage in the a.m. Maybe you could cut back and see what happens? The mood swings and snappiness sound more indicative of the depression that goes along with this. Depression manifests itself not only as crying jags (that I was always more familiar with) but also as irritability -- my family pointed out once that being around me was like "having to walk on eggshells." Hope you get some answers!

My cardiologist did an EP study following my wearing a Holter monitor for a month -- I was allergic to the little stickies, and they had to mail me some hypo-allergenic ones. After doing the EP study, he decided to implant the continuous loop recorder, which really gave him the info he needed. The procedure is a simple one and there is little discomfort afterwards (or there was for me). The monitor worked for me for almost 20 months, and it was not a problem getting the info downloaded. The monitor is implanted just under the skin and you'll have a small scar about an inch long. If you run your finger over the "pocket" created for the monitor, you'll be able to feel it, but no one else should ever notice it. The monitor is roughly the size of an old-fashioned pack of gum. After it was in place, and the incision healed, I was rarely aware of it. I would probably shop around for another cardiologist, have your records transferred, and see if a 2nd cardiologist would advise coming off the meds. You could see if the 2nd cardio also recommends the loop recorder. It showed the arrythmias I was experiencing, but unfortunately, indicated I may be a candidate for a pacemaker, and I just have mixed feelings about a pacemaker.

Well, I feel encouraged, and yet I don't. Back in 2003, I was diagnosed with NCS in spite of a negative TTT. Was told all of the indicators were there, and that's what has been addressed since then. I have low BP, but it's 'normal' for me, and a slow HR, also 'normal' for me, and I wore a Holter monitor for a month, and just this past January had an implanted continuous loop recorder. A short hospital stay about two weeks ago -- for chest tightness -- and a DR's visit later, I've been referred to a neurologist. The description of the chest pain was a clue, evidently, to the cardiologist that maybe I should be screened for MS. Met with the neurologist, who concurred, given that I also have numbness in my arms/hands and feet/legs, blurring vision, and I have complained about 'wobbly' legs. I flunked two tests today -- looking at reflexes (both legs flew up at a tap above the left knee! LOL), and another I call "the sobriety test." I could get my left index finger to my nose, but the right one went to my glasses the first time, and touched my cheek the second. I also think I flunked the toe-heel-toe walk across the room, but he didn't say anything. Neuro says maybe a problem at the base of the brain, or the thoracic skeleton. He had bloodwork done this afternoon, and I'm already scheduled for a battery of tests next week. I want to know what's wrong with me, but I don't, you know? Is this how it goes sometimes? I feel like the poor dog chasing its tail. . . (sigh).

How sweet Sophia! Like a Get-Well card in, and of itself. By the way, I really like your photography. I hope the images go a long way to help Sunfish feel better. And Sunfish, I hope you realize what feisty fish your namesake is -- we had a beautiful, large specimen in a tank years ago, that we actually spanked with the net, he was such a b-u-l-l-y. Maybe it'll help you fight this latest round, Girl! Best wishes, rdslots (reads lots)

Mom2Abby, I am so sorry you have a reason for being here, but hopefully you'll get some advice. I read the posts and try to glean what info I can so I don't wear everybody out with the questions as a "newbie" either. Like you, I can make little sense out of much that goes on with me either. And my feeling good/then bad fall in cycles like you describe. I have discovered over the past almost three years now, that if I can do whatever I have to, to avoid passing out completely, I fare so much better -- the "down time" may be anywhere from several hours or 1.5 days. By contrast, if I pass completely out, I am wiped-out too, for as long as 5 days sometimes. It is difficult to carry on, but I think I've learned from others to just take one day at a time. I had to retire this past January because I was no longer to teach and deal with this, and you know how difficult it is to be at school, and then need a sub out-of-the-blue for several days to a week. I just felt like my poor students were constantly getting the raw end of the deal. I admire you for trying. I managed to finish the Spring semester, falling my initial episode in the fall, worked some at the school over the summer, and then limped through the following Fall semester. I just could not go back after Christmas last year, and ultimately made the decision to retire. I am glad you have an understanding Principal and I hope the staff supports you as well. My Principal and staff members were wonderful. Glad you're here, although the paradox is, sorry you're here.

Fantastic! You go, Girl! From one who hopes to go back to school in spite of this, to one who did it and MASTERED both the disorder, so to speak, and the coursework -- congratulations! (What will you do now that you've earned your degree? Plans?)

DianaD, are they seeing the same benefits with doxycycline? I was prescribed minocycline at about age 40 when the dermatologist determined I had rosacea, and I took it for several years before he changed the Rx to doxycycline and some topical treatments. Interestingly enough, as I learn more and more about dysautonomias, and understand why certain meds are prescribed, I wonder if my being on an SSRI since the mid 90's, and minocycline, kept the NCS at bay, so to speak, until Fall 2003 when I experienced my first episode? I work with a cardiologist because I do have low BP, slow HR (and may be a candidate for a pacemaker) but I sure would like to have an ANS specialist consider such a theory. Of course, there is no way (is there?) to foretell who'll end up with one of these disorders -- but lloking back, it is worth pondering. I know little re: dysautonomias, although I have been on a campaign to read about/learn all I can, and glean info from people just like "us" at forum(s), and in support groups. Any ideas? Oh, needed to add: I have also been referred to a neurologist, screening for possible MS. Any comments there, too? Are most dysautonomias also screened for MS?

Loved the photos! How nice to be able to put faces with names.

By not focusing on myself and the dysautonomia, and by constantly reading about and researching the disorders, I seem to be able to stay away from the "pity parties." Not always -- when I am at my lowest, physically, (LOL! No pun intended, I assure you) I am just as likely to want to jump off a bridge but I usually catch myself, and think, "this is just the pure frustration associated with this." I try to surround myself with others who are positive -- hopefully more so than myself at the time -- hence, these Support Groups and forums. And I try to hang onto Scarlett's silly line from GWTW about tomorrow being another day. Lastly, and some of you may not like this one, I always imagine there is someone somewhere incredibly worse off than what I am, and I think, "what have I got to fret so over?"

I have come across this in my own reading/research but can't recall enough right now to even share it. Seems to me that as these disorders are studied more and more, there will be fine-line delineations between the disorders. Such distinction could possibly lead to understanding and even more effective treatments.

Fascinating reading! A friend of mine emailed me an article from the NY Times, re: deep brain stimulation and depression. This is the treatment being used, some very successfully, with patients dx with Parkinson's. While it has been used in treating Parkinson's for some time now, deep brain stimulation is being studied in patients who have not responded to any treatment(s) for major depression. Reading the article intrigued me, especially after stimulation of the vagus nerve (ie. NCS) was mentioned. DBS as a treatment for depression is in its early stages -- costs $40K, is still too early to determine its efficacy, and study thus far has included fewer than 20 participants -- but I couldn't help but feel encouraged for those of us who suffer with autonomic nervous system disorders. Not that I think we may ever reap its benefits, if DBS could be applicable to dysutonomias, but how reassuring to think modern medicine doesn't merely seem content with medications for symptoms, but forges ahead with finding causes/cures. It hasn't been that long ago that SSRI's and the newer anti-depressants were developed, if you think about it. So many of us benefit from the SSRIs in combination with the other drugs prescribed. Made me feel so encouraged -- if not necessarily for myself -- but for younger sufferers or for those who may unfortunately 'develop' these disorders.

Here's wishing our wishes could wish this all away! I am so sorry Belinda. Trust that you're in good hands, regardless of whose they are, and get well soon! Keeping you in my thoughts.

The architect/designer, Michael Graves -- you've seen his items in Target Stores -- was featured on CBS Sunday Morning earlier today. I hope some of you had a chance to catch it. According to the feature, Graves went to bed -- feeling fine, doing great, working hard, leading a wonderful life -- and woke up, near death, he was so sick. Diagnosed with a virus that was deteriorating the spinal column, he spent months in a hospital/rehab and was confined to a wheelchair. This happened overnight. As he could, he continued to work, has a three year old son and wife, who is another architect, and is determined to walk again. He continues to work on designs, and has since branched into designing 'medical' items such as wheelchairs, canes, etc., and has re-designed his own home to accommodate his needs. He refuses to acknowledge he is 'handicapped.' At one time, he almost died when the virus, attacking the spinal column, was affecting his breathing. I watched this segment this morning and realized how fortunate I am, in spite of everything I would gripe about on any given day as a result of my own diagnosis. Puts some things in a different light for me, and makes me re-think flinging myself off the nearest bridge or hurling myself from a mountaintop.

Proceed with caution: re: pacemaker. I have NCS and have heard "pacemaker" twice from two different cardiologists, so I understand in my case, it may really be warranted. I have low BP, and a slow HR, naturally so. I inherited this from my father, as well as arrythmias -- bradycardia, in particular. In my particular case, the cardiologists theorize that if all 3 occur together, ie. BP is low, HR is slow, and the arrythmia kicks in, I bottom out. This seems to be a "classic" dx for a pacemaker; however, everything I read -- even from the "experts" -- contends pacemaker therapy, even for NCS, is hit-or-miss and studies have been inconclusive. Some benefit from one; others don't. I have heard from more people who, initially benefitted from the implant of a pacemaker, but later still needed medication(s) and were pretty much in the same boat when it came to trying to stay off the floor. I am hesitant to pursue a pacemaker, myself, as long as there are other options. I also understand pacemakers accomplish nothing for POTS patients, so I might question why a cardiologist suggested one for you, if a cardiologist indicated it might help you. Leaving yourself as many options for treatment may prove more prudent. I'm sorry this may not be what you wanted to hear, but I would encourage you to make an informed decision. All of these dysautonomias are perplexing and frustrating, but I don't think you'd want to do something now that won't work for you down the road. Good luck.

If it makes you feel any better, my husband says the snips that come with the prostate biopsy are just as painful. (I, uh, want to know how he knows that but, hey! he has a heart, sweet fellow!) I actually got out of my second cervical biopsy when the OB/GYN walked in on me trying to get myself together over it. Like you, I had myself so worked-up over the pain until I could hardly stop bawling just for thinking about it. Irritated the heck out of me to think he would subject me to that again, if he had already decided I needed a LEEP anyway. They get paid per procedure, no? You never saw an OB/GYN get such a tongue-lashing as the one I gave him after my daughter was born and I found out that I should have received "something for the pain" when he had to go after the placenta (can you even imagine? I still tear-up just thinking about it.). I didn't know any better and just screamed by head off. My closest friend later tried to tell me she "knew the moment the baby was born!" by my blood-curdling screams. Weeks later for my postpartum checkup, I asked him about it, and he said he "figured" I had enough pain medication in my system. I reminded him I opted for natural childbirth. Sorry, Nina. Take two sledge-hammers and hit him in the head in the morning.

That was without a doubt, one of the most painful things I've ever been through too. I had the biopsy, followed by the crio, and all that fun, fun, fun stuff too. A couple of years later, the OB/GYN wanted to do another biopsy, and by the time I made it to his office for the appointment, sat in the waiting room, took two Advil, and finally got back to the examining room, I was a total mess. He had the audacity to walk in, take one look at me, and ask, "What's the matter?" I feel for anybody going for a cervical biopsy! There is NO explaining what it feels like.

Hmm. . .on a little less positive note, (gulp!) here goes -- I believe when life hands you lemons, make lemonade, BUT I am sure sick of drinking the stuff!

I'd only add, that with so many others who want to 'beat us up' sometimes, we sure don't need to beat ourselves up. Somehow, find a way not to feel like you are cheating your children -- had you not gotten this, how would you have raised them differently? Aside from having more energy, not being confined to bed, and more physically active , yadayadayada -- would they learn empathy and compassion? I might also point out that the activities so many of you young moms mention are exactly what children need -- quality one-on-one time and mind-stimulating games like cards and board games. So many young parents are so harried until they don't even sit to watch a movie with the kids, but let the movie babysit them! These disorders su@*, no doubt about it, and are incredibly frustrating because there is not one tried-and-true treatment, but if I honestly couldn't find something to keep me going -- even if only for the moment -- I'd have hurled myself off a bridge, as this is no way to live. A good therapist, as someone else pointed out, is paramount too. (she steps down from the soapbox, and slinks away. . .)

So much depends upon the ER, the attending physicians, and your own problem (ie. reason for being there then). 80% of the time, going to the ER is a moot point. At the HS where I taught, if I passed out and hit the floor, they were required to call EMTs and my behind was always hauled-off to the ER. By the time we'd arrive, my low, low BP would be sky high because I had gotten myself so worked up on the ride over. LOL. I had to retire from teaching because my NCS and the frequent episodes just weren't conducive to being in the HS. When I am at home, I do what I can to 'protect' myself from an episode. If I have any clue it might be an off day (and you'll learn to recognize those for yourself) I lie low, so to speak -- close to the house, easy tasks, whatever. I've never passed out, fortunately, at home when I was all alone, and if/when I feel awful-awful, I can call my husband and generally he can come home and work from the house. I realize I am fortunate, more so than most, with these disorders. Unfortunately, if you are out in public and alone (which for me is only on what is a rare occasion), most places would have no choice but to call EMTs. Given that under those circumstances, you've probably suffered a h-a-r-d fall, you probably need to go to the ER. I avoid ERs like the plague, and have made it clear I WILL NOT GO if I have any control over the situation. My husband can 'sweet talk' me into it, but only if there is some new, un-before experienced, symptom(s) like the chest pains I had a week or so back. Then, I'll go for him.

It is really difficult to stay positive all of the time. It helps me to log-onto the Boards because, always, for as bad as I feel, someone is worse off, and when I can focus on something or someone beside myself, I am better off. I know exactly what you mean about feeling 'old' and 'sick' all of the time. This is certainly NOT how I ever pictured being retired and I fight getting depressed over it A LOT. It is especially hard when you would have described yourself as healthy as a horse, strong as an ox, in decent physical shape, and looking forward to doing all the things you always looked forward to doing when you had the time to do them. (Could you follow that?) I've got all of the time in the world, between episodes, occasional trips to the ER and the DR, and days on end of just feeling plain sh*%%$. Fortunately, my daughter and only child, was a JR in HS when this hit so she rides the roller-coaster better I think than had she been a young child. I grew up with a mother who had polio, walked with crutches and a brace most of my life, and was very limited in what she could do, and I always prided myself on being more empathetic/compassionate towards others. I never regretted having a handicapped mother because I always saw it as sort of a "trade-off" in that I got so much else from her. She too was a fighter -- you'd never convince her, even today, that there was something she couldn't do, and fortunately, I think I inherited some of that from her. I have days when I'll be ****** if I'll let this dictate my life, but then others when I want to just fling myself off a bridge, or into the path of a passing train. It's a toughie, but like I said, if I can find something else to focus on, I can get through a day, and another, and another. Oh, and I think a sense of humor -- whatever kind (mind is kinda sick sometimes) -- goes a long, long way!

Hey Sono/Laura! I almost hate to tell others re: meds experiences because you never know what "mindset" effect it might have, you know? Diagnosed with NCS almost 2.5 years ago, Midodrine and Florinef were the 1st course of treatment. My understanding is that they raise BP/increase volume, in an effort to keep you from fainting. I did not like the way either made me feel. My BP is naturally low, as is my HR, and the downside of other treatments, esp. betablockers is that they lower BP and slow HR. I did not do well with Florinef at all. The higher BP made me feel physically ill, and as I recall, I was extremely dizzy, and after a few days, was so swollen until I could hardly walk. My feet, hands and face were swollen such that I looked like I was wearing baseball mitts and my face was a 'moon-pie.' My calves were as hard as rocks, as if I had really been working out in the gym. LOL. I was pulled off Florinef, and it is listed as an 'allergy,' although I understand it was really a bad side effect and not a true allergy. Same experience(s) with midodrine. I was a little surprised the cardio tried these two anti-diuretics as my own body has a natural tendency to hang onto fluids. Second course of treatment for me has been betablockers (to address arrythmias) but there's the risk of too low BP and too slow HR, and I've had to change betablockers a couple of times now. Understanding the rx for anti-diuretics, I make sure I drink plenty of fluids, and while I dislike salt, I do not restrict if from my diet and actually use it when I cook now. I would say give the Florinef a fair shake as so many people do respond well to it, and have good success with keeping this disorder in check somewhat.

Strangest thing I had ever heard came from my cardiologist's nurse, who (when I had severe edema from fluodrocortisone) told me NOT to drink too much water, that it encouraged the body to hold onto it. I had always thought that if you were retaining water, you pushed the fluids to get rid of it, ie. , the best diuretic was water itself. I was surprised the first course of treatment for NCS seems to be midodrine and/or fluodrocortisone, neither of which worked for me as I have a tendency to swell anyway -- have all of my life. What I have found so exasperating is the "try and see" approach to these disorders. After a few really bad experiences, I find myself less and less willing sometimes "to try" anything.

Interesting, Diana. I am taking 2 drugs commonly prescribed to 'dysautonomiacs' but as fate would have it, neither was given to me in conjunction with the NCS. I wonder if they kept the NCS at bay, so to speak. I've taken the SSRI for a good while (and it's often given in conjunction with some beta blockers, et. al., for these disorders), and I am on the doxycycline for rosacea, which appeared when I turned 40, and I thought I was perpetually wind-burnt or something. Too weird, huh? I'll have to ask my DR about it. I started out with minocycline for the rosacea. Isn't it strange how so many medications have multi-uses/applications?