Sunfish

Here are a few more sites, including food suggestions, that you may want to peruse. GP hit me hard this year too & I was pretty much sustaining on Boost & Ensures (35+lbs lost over just several months...pretty scary) We've just now got it a bit regulated with combo of meds & food. As others have alluded to, the contradition of fiber being good for lower GI motility but not for GP so much makes it all the more confusing if you are slow from top to bottom! Hang in there, :-)melissa http://www.healthsystem.virginia.edu/inter...stroparesis.cfm http://www.g-pact.org/diet.htm http://www.acg.gi.org/patients/gihealth/pd...stroparesis.pdf

Hi Ling- Have you had testing to determine if your bladder empties completely? If not, you should definitely ask about having it done as incomplete emptying is an open invitation for infection. Good luck! :-)melissa

I'm sorry to hear of the new (& old) problems for your little guy and glad that you're going to touch base with your doc. I agree that it's frustrating to feel like symptoms are getting treated without the "meat" of the matter, but unfortunately that seems to be the only way to go at times. Personally I have been told that I look gray when I really don't feel well, & I have major issues with tingling/pins&needles in my feet, sometimes in my hands & legs...similar but different to what one gets from sitting on one's feet too long. I've never gotten good answers from docs re: that symptom but haven't pursued it much as it doesn't limit my life to the degree other things do. I agree though that you should definitely get things checked out. Let us know how things go. Sounds like he's lucky to have you as parents! :-)melissa

Hi Carmen - Regarding the IV fluids, for me the IV doesn't freak me out per se, and I KNOW that fluids overnight would definitely make me feel better, particularly in the morning, but as always things are more complicated than that:-) Swimming is the one type of activity I've been able to do at times & am trying to work toward that; having a cath makes that a no-no. I also have too much "output" overnight...in other words no matter when I drink what, when I cath in the morning I have over 1000cc in my bladder (after having cathed right before falling asleep at night). So...it wouldn't be safe bladder-wise for me to have more fluids overnight until we get that straightened out. I just started taking DDAVP at night & it seems to be helping...both with the output & with how I feel in the morning. So...bottom line is if I could hook myself up to an IV & there were no other factors I'd do it in a heartbeat, but for now we're doing some other things that at least seem to be heading in the right direction. Thanks though for the encouragement. Hope you're having some good days, :-)melissa

don't you love it when the things that are supposed to help actually hurt? geesh. I don't get migraines often but when I do I take Relpax. If it has any bad affects for me I can't differentiate them from the migraine itself. I think it's one of the "lower key" meds though as far as migraines go....Dr. Grubb put me on it as one that his patients tolerate well... Hope you're feeling better! :-)melissa

My "diet instructions" on my Vanderbilt discharge paperwork states 8-10 grams of salt daily... I don't take salt tabs at all but just add a lot to my food....I've never tried to calculate/measure it at all though...I just taste it:-) Good Luck! :-)melissa

Welcome! I'll once again give my byline of "sorry you have to be here but glad you found us." And I am sorry you've had such a tough time lately...unfortunately many of us can relate in some way either past or present. I know it's already been mentioned, but your taking midodrine/proamatine only twice a day really stood out to me so I'm mentioning it again...you may want to at least ask about it...for me it makes me less tired, but it I let one dose wear off before the next kicks in, I crash majorly...just a thought... Hang in there! :-)melissa

Hello! I just wanted to add my welcome. Thanks for sharing your story...like others have said, there are always many "me toos" upon reading others' histories. That's what makes this board so great. Sorry you have need to be here but glad you found us! :-)melissa

Thanks so much for sharing the pics...I especially like the B&W...looks like it's something that could win a contest! Hang in there...hopefully not for too much longer! :-)melissa

I agree with other posts & think it's great that you liked the fill-in for your doc...always a nice thing! I know for me personally BP & HR are very tied-together....so like Rita explained, taking a med to help with BP in order to help with HR isn't as odd as it initially sounds. That said, finding our as much as you can isn't necessarily a bad thing. I think there's a nice balance between finding out the whys & diving into treatment & so often it seems to tilt to one extreme or the other... Let us know how things proceed! :-)melissa

Hi Sabrina - Like Emily, I have no tips to offer, but just wanted to say welcome & congrats. Do keep us posted! :-)melissa

Heya Emily - I'm generally not one to have insomnia issues, but can empathize....and be VERY intrigued/curious b/c for the first time in my life I had MAJOR issues after my gallbladder surgery. Like your description, never more than a few hours at a time. And on multiple occasions I actually went for 2 or 3 nights with no shut eye at all. Despite all that good "sleep hygene" stuff. It was so weird...but thankfully it seemed to disipate after about 6 weeks...all of a sudden. So....I'm hoping the same will happen for you....that all of a sudden it will be a non-issue. I'll keep my fingers crossed for you. I have always noticed though that it takes my body longer than "norm" to re-regulate when my schedule is "off". In other words if I'm up too late & then sleep in too late it takes me super long to get back "on track" despite doing all the "right" things to facilitate doing so. Regarding some of the other symptoms you mentioned, I can definitely relate - past & present. Namely the shakes, shocks, etc...I get what I call twitches a lot...but actually they seem to be a bit better with my new med concoction from Vandy (don't you love the suspense...stay tuned for "the" post). Glad you've had a couple of better evenings/mornings & hope they keep up (although not this morning, eh?) :-)melissa

Trails - Welcome! And I must agree that I LOVE your icons:-) Morgan - I must also agree that your explanation was superb. Very clear & to the point about the issue at hand... ta ta, :-)melissa

I was on concerta for over three years, for the vasoconstrictor/BP effect with the bonus of energy & it did wonders for me for about 2 and a half years of that time. I never had an immediate crash like you describe but when it would wear off I had to make sure I was home & in bed for the most part b/c I would "crash" big time, especially when I was on a smaller dose at first. Hope things even out for you soon! :-)melissa

Hi Carmen - I hate to echo the "no, but" phrasology when I know you're longing for someone who totally gets your situation first-hand, but I still thought I'd post. I'd reiterate what a lot of others have said too re: diagnosis, etc....particularly b/c I just got back from several weeks inpatient at Vanderbilt & they told me of seeing multiple people who had been given your exact diagnosis that did not end up being the case. Of course that in and of itself doesn't change your current treatment, etc...but I just thought I'd add that anecdote. I don't have IV fluids at home but the discussion has been had & is going to be had again when I have my follow-up at Vanderbilt in August. And I do get the frustration - like many here - of being so atypical....for better or for worse I don't think you get to keep the name for yourself. I'll write about it more when I post on my Vanderbilt trip, but I was surprised there to be told that even in the atypical world of dysautonomic, I don't "fit" for them...atypical amongst the atypicals...don't you love it? They couldn't make up their minds for my diagnosis & it was left partially as a "wait & see" but regardless....I do hope you find people here or elsewhere to really connect with. Hang in there, :-)melissa

I've never used a HR monitor as I find it easy enough to take it myself. I do have an Omron BP monitor though...manual inflate, automatic reading...that is helpful & was encouraged by my doc several years ago. I don't use it all of the time but like some others have said it can be very helpful in figuring out when symptoms are equated with particular things. Most importantly I use it when I'm wanting to adjust certain meds to make sure I'm okay to do so (this is with the docs okay too...) I've also been asked at times to monitor - for a period of time - things several times a day, etc. I think my monitor cost $50 or so & I'd say it was definitely worth the investment... :-)melissa p.s. like others said, mine doesn't go quite low enough for my BP on occassion. I haven't had a problem though with pretty low & high HR readings....

Hello - I have family on your side of the pond...for whatever that's worth:-) Lucky for them, none of them have this wonderful health fun to deal with! I wanted to give you a link though...it's for a youth organization but still thought you'd be interested in at least perusing it....the "seizure" terminology is not really a true seizure but rather fainting, as in neurocardiogenic syncope. If you hadn't come across the site yourself yet I thought it might make you feel a bit more at home! take care, :-)melissa www.stars.org.uk

Welcome April - Although I'm sorry you have to be here, I'm glad you found the forum. I haven't been here too long myself (although I've been in the dysautonomia world quite awhile) and it's a great group of people. I agree with the others re: the docs to initially seek out. Unfortunately there is a major shortage of actual autonomic specialists out there, so finding someone you really feel comfortable with is often a challenge. Good luck & peruse old postings on the board when you have a chance....there is a lot of great info. :-)melissa p.s. what part of the country are you from?

Hi Dayna- I fit a lot of your profile & have had pretty much all the testing out there between my regular docs & just getting back from studies at Vanderbilt. I'll write more when I post regarding my Vanderbilt trip, but I too have Autonomic Neuropathy & OI/POTS and "then some"...neurogenic bladder, gastroparesis, etc....lots of things that tend to "fit" with other diagnosis. THe categories are imperfect however, so try not to worry too much. And look for my Vanderbilt post in the next few days as I'll write more about my discussion with the docs there re: diagnosis, prognosis, etc. Hang in there! :-)melissa

After years of very regular periods mine got super irregular but I always knew they were coming b/c without fail I would be shakey & have major HR & BP issues 1-2 days before, also fainting at times. Eventually I started on birth control pills with the idea of only having a period every 3-4 months. This has been GREAT for me & even when I do get them they're not as bad (or rather the pre-period isn't as bad; I don't have issues once my period actually hits). I tried to wean off at one point when I was doing well overall and within a month could tell & it just wasn't worth the fight. So despite the odd looks of docs initially when they see I'm on BC & say that I'm not sexually active....it seems to at least be helping, so I'm sticking with it for now. Good luck! :-)melissa

MaryJo- You've already gotten some good advice, but just to add my thoughts... In my opinion, waist-high are the only way to go. Some have trouble with comfort, but I also know that thigh-high can be a challenge to keep up. For me I LOVE the pressure & usually the added warmth. For me the only comfort issues are if the hose bunch up anywhere or get pulled too tight around my toes. I'm not familiar with your healthcare plan, but have you checked into possible coverage that way? My insurance company used to buy me 2 pairs a year with a perscription & they still pay 90%. I personally wear the 30-40mmHg, although I had 20-30mmHg the first go around. Now I wouldn't wear anything but the higher compression b/c if I'm going to the effort of wearing them, they're more beneficial & no more of a hassle in my opinion. For me wearing the hose means my feet don't swell, don't get numb or tingly so much, & don't turn blue. Not a bad deal....although the heat is an issue this time of year. I love them when it's chilly but they're pretty sticky when it's super hot out. In terms of brands I have had 3 types of Jobst, Juzo, Sigvarus, & Ames Walker. Ames Walker are the cheapest & while they were just as good initially I did find them to not wear quite as well, or rather to wear out more quickly. Jobst are probably my favorites - one type in particular - and my continuous exploration elsewhere is due to my need for open-toed styles, which Jobst only makes in their cheaper (and much thicker/bulkier) "Relief" style. My Sigvarus are thus my favorites for sandal-wearing. The Ames Walker site is great though...it's the only place I've bought any that weren't paid for by insurance...both their own brand and otherwise. They have sales a lot too so keep your eyes open. Good luck & let us know if you have any other questions. :-)melissa

So sorry to hear about the rough time you have been having & I do hope your grandpa is feeling better day by day. If it's any consolation, my doc failed to be precautionary about potassium with me too when I was put on florinef originally, & he's one of the pros in the land of dysautonomia. The problem wasn't caught until I ended up in the hospital while away at school. That was back in 97 and I since was on florinef for quite a while - on two occassions - as it did seem to help, but even with potassium supplements I had several instances of problems with my K levels getting too low, and worse the potassium pills starting eating away at my stomach...they're pretty rough on the GI tract. For that reason - that I couldn't tolerate the supplements - I'm no longer on florinef, but lots of folks don't have a problem. You can also find lists of potassium rich foods online quite easily...bananas & OJ are popular but not alone. I know that I still have to watch my K even when not on florinef...when I'm having GI issues it's the first to go in my blood work and then, ironicly enough, low K can actually cause GI problems (amongst other things). Good luck with the graduation decision....I had that 3 yrs ago & ended up going to one of the two ceremonies (School & University) but it was still tough. Hang in there! :-)melissa

For me my "shortness of breath" is only when I'm either tachycardic or bradycardic...in other words when my heart rate is going wacky. I'm glad to hear that you're exploring if there could be something else going on as it's so easy to attribute anything & everything to OI. Hang in there & let us know how things turn out. :-)melissa

I had never had a problem - if anything I didn't bruise when it "felt" that I had - until right after my GB surgery in march. A few weeks after I got two HUGE bruises that sort of freaked me out, as well as the docs. I have no idea how they even got there and were not locales that would have been bumped easily. They took quite awhile to fade away. My theory was nutrition-based as I'd been having major GI issues for months & had started loosing my hair too around the same time, but nothing drastic showed up on tests. Now things seem to be back to normal (at least in that solitary regard!) have you brought up the spontaneous bruising of late with your doc at all? melissa

Hi Dawn - I have never Amtracked it myself but my mom has become a regular, and on pretty long distances (Baltimore to Toledo, OH)...and she LOVES is when compared to the alternatives for various reasons. She's talked about it more than I've needed to hear, so if you have any specific questions let me know...if I don't know already I can ask her for you...she'd be honored! :-)melissa p.s. one negative...anywhere other than on the east coast, be prepared for delays, sometimes long ones. Amtrack doesn't own their tracks which means they're at others' mercy, which can me super late at times...