Lukkychrm42

Do you mean a drug to control the symptoms of it? or if it's genetically-related, then somehow correcting the bad genes or something? Interesting.... Might that also help to further research into the conectivity with EDS, ANS dysfunction, Fibro, etc? Keep us updated! Thanks!

New question regarding GERD- my only symptoms of it have been constant heartburn and a persistent cough. I now am having major pain in the upper-right quadrant of my abdomen (for 4 days now) and am going to the doctor today, but at the University's nurses unit, they said its location indicates either liver, gallbladder, or something epigastric that could be related to the GERD... Do any of you have this kind of abdominal pain with it? I've never had it before, and if it is the GERD might it be a complication from it, or could it just be a 'normal' symptom that i'm going to have to keep living with? I don't drink enough to have liver problems, I don't think... I mean, I'm in a UK University, but still! It could be gallbladder as the pain goes through to my back as well.. anything else? because I'm not having other abnormal digestive problems- I mean, I have IBS, so how could you tell, but they're not abnormal for IBS.. Oh and I don't have gastroparesis or slow digestion.. on the contrary, I have very rapid digestion (and ergo the opposite of constipation). Sorry if I'm rambling! I'm used to long-lasting stomach pain below my navel, but not here! thanks!!

And Perse- do keep us up to date on how you're doing? I think you're pretty good at that, but I just hope that it works out for you- it is only too clear how important this is to you, and I can't imagine anyone who deserves the opportunity more.

Wow, the world is full of stupid people, but I can't believe that two grown men would be so heartless- and towards a child, too!! My goodness, I'm so sorry, Sue. It makes one appreciate the good people so much more. And lucky to have a place like this forum.

Hi, First of all, I'm so sorry you're having such a rough time. We're here whenever you need us! I don't have EDS, but there are several here who do. Most of us have sleep problems, and I believe that sleap apnea is very common among us. For some it's a more serious problem than for others. So I'd think it's a safe bet that it's related to dysautonomia. As for breathing when you're awake, a lot of us have that problem, too. For me, I find that I don't seem to take in enough oxygen when I breathe and end up yawning almost constantly- and even then can't catch a full breath. I breathe only 5 times per minute because i have very large (singer's) lungs, but then sometimes it's also hard to breathe- like you're straining to fill your lungs with air and it's just not working. I don't know how exactly this all relates, but it's such a common problem for us that it must be there somewhere. As for the 3 months where you were feeling unconscious- I don't know about that- but I'm glad you made it to where you are now at least!! Heart problems: do you have an actual defect of your heart (is it safe to assume that you have had an echo?)? The only real problem with MVP is that it can lead to dysautonomia, so it's not a big deal in itself, but what it causes obviously is quite problematic! For those of us without a defct or MVP, the problem with POTS is a wiring issue- it's not of the heart itself, but what's controlling its function. Again, I don't have EDS or ME, so I don't know how they might be related to the problems you're having, but I wish you all the best and I hope you find some good doctors to help you.

I don't like the ones with the saline locks, myself- they only last for a couple of hours before they stop working, and then they have to put in a new one! But then, I've never had a PICC line or Port-a-Cath or anything else

I don't, though I know of several who do- I'm starting to think it's a great idea, since I can't seem to retain water when drinking it.. in one way and out the other. Definitely interested in this topic, especially if there are non-Americans getting it done and through what body. (FX in England!)

That's still pretty cool that they even had any of that on the show.. I hadn't ever heard of a TTT before I was scheduled for one!

I was seeing my cardio every month before coming here to England, and thenmy PCP whenever, and I saw an electrophysiologist a couple of times this summer before going to Vandy. I guess since my life isn't stable/ regular at the moment, neither is my healthcare. Ideally, I think, I'd like to see a doctor once every 2 months or so, depending on if we're trying out new meds or are continuing with old ones.

Hi! I went to Vandy, personally, but regarding the Mayo Clinic- I heard that it was normal procedure to just show up and expect to be admitted within a few days. That's what their website says, anyway. Anyone able to elaborate on this?

Hey there, Perse- I didn't realize you were from Bristol..! My aunt and uncle live in Bristol, and I'll be spending a couple weeks with them over Christmas. SO- if you're going home for the holidays.. maybe we can all have a meetup nearby! Have a potluck or something. That'd be lots of fun! Welcome to DINET, everybody new! (and newly registered.) Have a good day! Megan

Nope, Radha, i didn't read it anywhere.. I was just thinking about how doctors who don't know me think I have high BP, when really I have low BP until I stand up. Sorry it's not from a medical authority! I hope you figure out what's going on, though.

Hi! I'm not from the UK, but right now I'm studying in Lancaster, so I'll be here until January. Message me if you want to talk! Megan

SO there seem to be a lot of us with GERD. Is that just a reflection of the general population? Or is it in us usually related to dysautonomia? I know there are some parts of dysaut. that can cause it, but is that really a sign of autonomic dysfunction, if your sphincters don't completely close or whatever? Just curious about your opinions on this. Thanks!

Without trying to sound too vague.... if the beta-blocker is actively lowering your BP, is there a chance that your body doesn't like it and fights it by artificially raising it? Like I have low BP, but my BP raises when I stand cuz my heart is working harder to pump what little blood I have around my body. So could it just be your body's response to a BP that's too low?? Just food for thought..

Hey Perse, I'm so sorry you're having all this happening... if it is the fludrocortisone, then maybe the side effects will wear off after a little while? (*she says hopefully*) The main side effect I had with Florinef was awful nausea.. like jumping up in the middle of a lecture to run to the bathroom. Do you think it could be related to the shaking you mentioned earlier, where you were told it was 'just a POTS thing'?? I don't remember if you had started the fludrocortisone then or not. I'm sorry about the jelly legs, too- that can't be fun. I've only gotten that occasionally, so I don't really have anything definitive to say about that, either. Medicine seems to affect you more than most people (clearly!), which in the long run probably is healthier than having tons of chemicals floating around in your body and not doing anything, unless you need the medicine... Hmm... Any chance you might have good results from non-pharmacological means? Sorry I'm not much help, but I just wanted you to know that I'm thinking of ya! Megan

My favorite way to get salt is in soup. I LOVE soup, and I eat it often once a day, especially when it's cold out. (I'm vegan, so it's always some form of vegetable or beany soup). I can tolerate its being really salty, unlike some other foods, and FX a basic vegetable soup that I make will use salty boullion, and then I can add a tablespoon or so of salt to each bowl. Since salty snacks haven't been easy to find where I am, I usually just put tons of salt on my foods. Also, I just remembered something that tastes really good. English cucumber slices topped with salt and dill weed. Yum! (My grandmother's 'recipe'). I also eat a lot of bread and add extra salt to things like hummus. I can't get salt tablets here, and I drank salted water once- never again!! ) Good luck!

HUGS!!! There, that's more than just a hug! I'm sorry you've been having trouble... especially right now. I hope tomorrow's better for you, and the day after that, and so on! I get the shakes a lot....my teeth chatter too... not always just from standing, but like when I have an argument with someone (doesn't happen very often) or am very upset, as well.. What they told me at Vandy was that it's the catecholamines going haywire in your body. But- I'm not sure about the one-side thing. if it continues, might it be worth seeing a neurologist? Or could it be part of EDS at all? I'm sorry !!! Here are some more hugs! *HUGS*

aww sorry Melissa! *HUGS*

Allright, so I saw this one coming a mile away. I've never had the experience of a doctor telling me that it was all in my head, particularly AFTER being diagnosed!! I found out that I'm covered by the NHS after all, and made an appointment, sort of 'get to know and what my proposed treatement plan is', because I have a feeling that I might wind up in a bad (meaning worse) way before the term is out. I knew it was going to be bad when he said "Well that's just along the spectrum of normal, isn't it- teenage girls passing out? Well maybe in the UK we don't find such conditions worth treating." I was being totally attacked, so I went on the defensive, trying my best to still be civil (in case, you know, my life was in his hands someday)- though he didn't deserve it. "Well, maybe in other countries- like Germany- they worry about keeping people's blood pressure up when they stand... but I don't really understand why you're here." he said... Me: Well actually, I don't have orthostatic hypotension, because I'm hypovolemic. I have low baseline BP, but it increases when I stand. So I'm coming now, because I'm having a good couple of days, and it'd be hard to get here when my heart is beating so fast that I can't get up off of the floor! Him: Well if it gets that bad, it sounds like you should have stayed at home. (Not giving any hint of actually believing that it CAN get bad.) What I thought: So I should live my life in a cardboard box just waiting to have a bad spell. I might get sent home, but at least I'll have come. What I said: My medicine, while it's not doing as much as I'd like it to, keeps me going. I've spent 2 weeks at a specialty center in the States being treated by experts in the field and I DO know of a specialist here, but he's in London. What he said: Well, you could go private, but on the NHS there's no way you'll get in to see a specialist, and would you really want to travel 3.5 hours to see someone you've never met? What I thought: Well my mom and I drove 10 hours to see a whole team of doctors I'd never met, and look how well that turned out. I should have known better than to even bother with a country bumpkin doctor like you. (No offense to any readers out there!) I'll let you know when they admit me to the hospital. What I said: I'm not trying to embark on a whole new treatment plan, I'm just trying to get through the day! Him: Then I suggest you just make sure to get in with your doctor in the States while you're home for Christmas, and keep up with the meds, one of which isn't licensed in the UK. So I just pursed my lips and walked out... I was drained. My mind had gone blank of anything civil and coherent to say. The thing is, I'm really looking for someone to help with the other dysaut. problems I'm having besides POTS! Like since my GERD is back, I need to know if I have permanent damage to my esophagus.. and what is up with the joint pain and is there anything I can do besides taking ibuprofen... and how about this MCAD? OK so now I'm no longer having a good day. He sent me into an adrenaline rush and now I'm all hot and sweaty, and I know what's coming! I shoulda passed out in his office. Jerk! Sorry so long! I haven't had a bad doctor rant yet- don't we each get one or two?

That's right. I have a hematocrit level that's almost normal, but my plasma and blood volume are very low, and the doctors are still talking about Procrit when I get back to the States.

I'm sorry, I'm not sure if you're under 18 or an adult.. but if you ARE under 18, then Dr. Abdallah is great.. Hasan Abdallah, MD Children's Heart Institute McLean, Virginia If not, his office could probably recommend someone. Good luck! Megan

I'm a student. I'm a junior at the University of Colorado studying Italian Language and Literature. I'm studying abroad this year in England (this autumn) and Italy (spring for an immersion program); I had been planning to study abroad in college all along, and my mom says I'm too bullheaded not to. It's harder than it has been before (I've done it twice already), though. I requested a room in a quiet area on the ground floor, and lo and behold I'm in a normal area on the third floor. I haven't even had the energy to unpack yet. (I got back on Sunday). Last night the people on my floor felt it necessary to have an all-night drunk talk-a-thon in the room next door from 2 am until 5 am, despite my begging and pleading. If we actually had classes this week, I don't know what I would have done. I shouldn't have to reveal my medical history just to be allowed to have a good night's sleep, right? This is why I haven't lived in dorms in a long time! I've requested accomodations from the Disabilities Office, but I don't have a 504 plan at home (yet, I will next year), and it'll probably have to be worked out with the profs. All I've had to eat in the past 3 days is juice, so I think I need to go grocery shopping. Tesco delivers, but you have to have an actual address, not just a room number in a college. I should have tried to petition to be allowed to live off-campus. I was majoring in International Affairs as well, but in order to graduate somewhat ontime, I would have to take 6 classes/ semester, and I tried that last spring and it didn't go well. I've never wanted a desk job- I always picture something out of Officespace... but I think the best choice for me will be a study abroad administrator or teacher. I wanted to join the Peace Corps since I was 15, but there's no way I'll get medical clearance, so I might try teaching English abroad for a few years after I graduate. (I've also been planning to live in Italy since I was 17, and I will definitely do that.)

Yay!!! Good luck! Have lots of fun, but don't study too hard! (OK, you can study... part of the whole postgraduate thing, I suppose, huh?)

Hi, I don't think it's always clear cut, and I don't know exactly what caused my POTS. I think I have had some form of dysautonomia since birth from genetic factors... I can trace my earliest POTS symptoms at least to middle school (12-14 years old), but probably before that. In my case the actual POTS might be from Mast Cell Activation Disorder, or a virus, or something- I think it got worse after I rapidly lost weight 4 years ago, but it's so hard to tell. I knew I didn't feel right, but there was noting visibly wrong withme, and at the time I was really into alternative medicine and took it sort of to an extreme thinking that if I was sick it was because of what I put into my body. I had just become vegan (coinciding with the weight loss), and I was afraid my parents would get mad and tink that it was the veganism (though I had been vegetarian for 2 years already), so I didn't tell anyone. I thought I could handle it. Ooops! My bad! As you can see from my signature, I got diagnosed at age 21, so I've had it for a while beforehand. It's also hard to tell if you have other illnesses in conjunction with dysaut. or because of- like for instance, do I have POTS because I have low blood volume because I have dysaut and can't retain water? or do I have GERD because I have dysaut or MCAD? I guess it doesn't matter in the short run as long as there's medicine out there that helps.