Lukkychrm42

I'm so sorry, guys. My thoughts are with everyone.

Hi Karyn, I'm looking at canes, and I saw the seat cane online- it looks great for being able to sit, but is it actually used as a cane for walking, too? Thanks, Megan

Chad, I have a very low resting heart rate for having POTS. In my experience it's not something they're used to seeing, but it happens, just the same. I used to be very active and go to the gym every day, so they're pretty sure that's why mine is so low. Without medicine, it usually stays between 45 and 55 when I'm on my back, and then my spike can go anywhere from 90 to 190 when I stand up, depending on time of day, having eaten or drunk anything, and things like that. I'd encourage you do do some reading online from potsplace, NDRF, Vanderbilt, Mayo, or DYNAkids. (BTW I'm 22 and had never heard of any of this stuff until I was diagnosed in March.) Hopefully that will help to ease your fears in that I've never heard of anyone dying from POTS. It's not heart disease or a structural problem with the heart (except w/ MVP, but that in itself is supposedly benign). It is a debilitating condition, as you are no doubt aware, and I urge you to read up on it. I am very sorry you're having these problems, and I hope you've got an appointment with a good dysaut. doctor soon!

I get that too, and it's exaggerated when I use an alarm clock. I just drink tons of water and take meds right when I get out of bed. I think you'll find lots of us have difficulties sleeping, whether being insomniacs or sleeping all the time.. I'm pretty sure it runs the gamut. For me, often it's hard to get to sleep at night because my heart is pounding, and then I have breathing troubles and often either can't get to sleep or wake up a lot. I nap a lot, and aim for as much sleep as possible as a general rule, but it doesn't always work out.

Oh wow you guys are awesome. I remember those days, (well, I am only a junior!) and you must be so excited! Good for you for getting to know your way around things like Disability Services! I hope you have a wonderful year!!!

Sorry, I don't think I read it very well. I, too, am hypovolemic, and also have GERD. While I do spend a lot of time incredibly nauseated (often during intense heartburn episodes,) I also do have problems when I actually eat. My heart rate goes up, I get mild headaches, hot flashes, in addition to the other digestive problems that go with IBS. I haven't found anything that helps, really, except eating smaller meals throughout the day.

My oh my that's wonderful news! And good for you for sticking it out so long! Congratulations!!!

What Melissa said. Aww man that test- I felt like cold water was running down my arm (the outside), because of all that saline, it gave me chills. I'm keeping my fingers crossed that my insurance will cover Procrit when I get back to the States!

Aww that's really cool. Hooray for the good guys!!

What do you mean by problems with eating? Like not being hungry at all? Being too nauseated to eat? or not being able to keep anything down?

I don't think I could call it a warning of an impending bad spell, but it definitely coincides with when I'm actually having a bad spell. Hmmm, something to think about... Megan PS I must be in the wrong part of the UK, because in Lancaster it's been cold and rainy!

Hi there. I have pretty low BP sitting and laying down. Then I stand up and it jumps up to right aroung normal, and sometimes high, related to my symptoms... I was assured at Vandy that while it's not the "norm" for POTS patients, I'm definitely not the only one like this... So it's not like it drops a tiny bit upon standing, but it doesn't do what some POTS people think it should- drop a lot. I'm pretty sure that's why I don't faint, too...

Hey, My fatigue is kind of a constant lethargic feeling. It never goes away, and I don't remember the last time I actually had any energy. I have very low blood volume, and it's not improving yet, so that's probably part of it. I sleep all I can, pretty much, while still doing well in classes, so I have no social life and pay no attention to hobbies I used to love. Lately I've been walking around more (have had to- as am in England now without car or bike), and I have to rest every few minutes, and if I'm carrying something like groceries or a bookbag, I'm about to break down and cry! I've had the autonomic workup done, but never seen a neurologist or anything to do with autoimmune anything.. All I know is that I really hope he switches me to the DDAVP (felt good with this med trial, but heart rate not kept as low as the other meds) soon, because I think the beta-blocker contributes to the fatigue. Sorry I'm not much help.

I'm sorry you're having such a bad time of late. I sincerely hope that you find some answers ASAP!

If you're on the beta-blocker, it may or may not work to slow down your heartrate. I'd been on toprol for over a year when I had a tilt table test, and as I was still having major symptoms, the cardiologist had me continue to take it for my test... my BP still jumped about 60 bpm... (without meds it's anywhere from 35-120 bpm jump, as i have a low resting heart rate). For me it seems that yes, my heart doesn't race as much on beta-blockers, but I still have all the same symptoms. Anyway, all the best with your tilt table test and finding some answers!

I just came back a few weeks ago, and my experience was pretty similar to Melissa's without the UC (sorry Melissa!), and as she did such a wonderful job chronicling her visit, I suggest you read that one. Plus if you've got more questions, you can always PM me. )

Right now: propranolol 10 mg 3X day (heart rate and fluid retention) midodrine 5 mg as needed (usually 1/day in late AM or early pm) (low BP) protonix 40 mg/ day (acid reflux) 9000 mg sodium/day (fluid retention for low blood volume) LOTS of water/gatorade compression hose B-12, ibuprofen, acidophilus, pepto bismol as needed (IBS, chronic tendonitis, and B-12 cuz I'm vegan) I'll probably be on DDAVP soon- it was discussed recently, but we're trying the salt/fluids cuz it's lots cheaper! Procrit was also discussed, because not much is working to build up the blood volume.

Hey there, I use one that I got in April. It's been pretty helpful so far, and I have instructions from Dr. Robertson at Vandy to use it for when I contact him regarding meds and symptoms (thinking that the numbers plus how I'm feeling might help lead to the best med cocktail). It was kinda pricey but I'm glad I got it. Good luck!

If I'm not mistaken, the golden standard was an eagle statue which the roman troops carried wherever they went in battle. They had to protect it with their lives. Just a thought I've had this screen name with one or 2 k's for about 7 years now. The 42 is probably pretty obvious to you Douglas Adams fans. (It's the answer to the universe, according to the Hitchhiker's Guide to the Galaxy.) I don't remember where I came up with Lukychrm- I never liked the cereal, I'm not generally endowed with good luck, and I don't have a lucky talisman or anything like that. Hmmm... it sure seems hard for people to spell correctly, though.

BTW, my POTS doc made the diagnosis at the time when my bp was not low, he said the main diagnostic feature is increased tachy upon standing. This was my understanding, as well- obviously most of us, if not all, have bp problems, but, although I've read conflicting data online, most of what I've read confirms this. Vanderbilt, for instance, says that it's an increase of 30 or more bpm and a dip of no more than 20 in bp.. that being said, I, being recently diagnosed and still in research mode, obviously don't know why things are the way they are! Just yesterday I spent 24 hours with the horrid ambulatory bp monitor (3 hours sleep if that much), and practically every time it went off and I was standing, an error message popped up. I mentioned it to the NP, but doubt they'll care, and instead will call me and tell me that I'm either normal or hypertensive. Just out of curiosity, the thing was so loud that everytime it went off I did a little jump and my HR increased.. if it offsets adrenaline like that just turning on, isn't it a little counterproductive??!! Anyway, I'm sorry you're having so much darned trouble! Hopefully it'll cool down for you some so you get some relief from the passing out. Other than that, I'm not sure what to say except that your observations of what your body is doing have got to be more accurate than what some doctor says it should be doing. I hope you find the answers you need to get you in shape so that you can rock your socks off at Oxford this fall!!

1. Megan M. 2. Age 21 (22 in 1 week) 3. Dx-POTS, GERD, CFIDS, neurocardiogenic presyncope, IBS 4. Age at Dx- 21 (4 months ago) 5. Richmond, VA (Go to school in Boulder, CO) 6. Severe dizziness, blurred vision, hypovolemia w/ diabetes insipidus, racing heart, frequent heartburn, diarrhea/bloating, extreme fatigue, chronic cough, heat and diaphoresis, exercise intolerance, nausea, headache, trembling, weakness, muscle spasms, chills, umm.. etc. 7. mild dizziness, heat spells/ diaphoresis, exercise intolerance, bloating/diarrhea, chills, restless legs, fatigue, ADD 8. haven't tried too many meds YET- Florinef definitely didn't work, Toprol works in some ways and makes me worse in other ways, no otc meds help the IBS, nor do any diet tricks so far, anti-nausea wristbands do not work 9. Protonix REALLY works (for now at least), Midodrine helps a little, salt, water, and rest help, massages help the stiff/sore neck, compression hose helps a little, distractions help a little!

Not just online grocery stores, but also could you try calling a local store/market and ask them if they ever deliver. I know they used to a long time ago, haha! My grandmother does that. Also, I don't know if you're talking about a grocery store that's BASED online, but try going to the websites for the big chains and see if they deliver as well. Is there a delivery service in the area? A teenager nearby looking for a job? I don't really have experience with this myself, but there's gotta be something out there for you. Also, what about shuttle services? I know where I used to live there was a call and ride program.. I don't know how much it costs, but I'm guessing it's more than a bus and less than a taxi. If it's realistic, could you give money and a list to neighbors for when they go to the store? Then it's not really out of their way or yours.. I don't know! You're not the only one in this situation.. I'm sorry!! I hope you find something!!

I'm with Christine.. except that I'm still learning my limitations. I haven't left the house this week except to go to the pharmacy or to work.. and when I'm at home I've either been sleeping or sitting and reading/ watching TV pumped up on midodrine. I started seeing this new doctor last week who basically just listened to me for about 45 minutes, seems to have heard of POTS, but didn't connect it with dysautonomia and thought that my IBS might be "causing" the heart issues (with the whole blood pooling/hypovolemia/diabetes insipidus thing), so he referred me to a GE and someone else (not sure- didn't catch that part.).. At this point I'm just like- yeah, whatever.. you don't really get it but if you'll work WITH me, then maybe it'll be alright. Not that I care, cuz I'm going to Vanderbilt in 2.5 weeks and I'm only home for the summer. I've had pretty good luck with specialists so far, but my PCP probably thinks I'm crazy, cuz she doesn't think there's anything wrong with me. Still, when I get asked if it's ALL the time, it's not every single time I get up that I feel something. It's every day, most of the time, worst from about 8 am until 5 pm. I don't remember the last day I had that I felt 100% "normal." Still, some days are better than others. About doctors, though- it's been said before, it's just easier for them to ignore a problem than for them to admit that they're wrong or admit that they don't know something.

Wow that's amazing how much you remembered! Thanks for posting, I'll find it very useful, because I just got into Vanderbilt, myself. Thaks so much, and I hope you're getting some relief, especially with the UC- it sounds terrible. I'm sorry you have so much to deal with. Good luck with everything, Melissa. Megan

Hi, I've been with DYNA for about 3 months now, but I just realized that there was a forum here! -Hmm, I'll try to blame it on brain fog. Anyway, I've got an appointment with an electrophysiologist coming up in a couple of weeks at the suggestion of my cardiologist, who has been my primary care throughout the past 6 months. I doubt that the guy has heard of dysautonomia, and so I'm not really sure what to bring up when I'm there... I mean, I had a Holter test about 18 months ago, and at least now they'd know what they are looking for, but I don't know if they can do like a standing echo or something? I mean, I don't really know how to explain the whole, I get tachycardia when I stand up thing- I mean, I'm already on toprol and midodrine, but neither of them seems to help the heart rate. I mean, I know that some of the original researchers of dysautonomia are electrophysiologists, but I already have a cardiologist, so I'm not sure what she thinks this guy could do for me that she couldn't. Sorry if I'm not being clear here. Have any of you been to an electrophysiologist, and if so, what was your experience with him/her? Thanks!