Becia

I've always had to get a referal for specialists, but I've always had insurance, and now I don't.

I have no advice, but I am on both, and have the same exact problems... I am so glad I'm not alone. My doctor told me I just needed to suck it up.

I'm in Southeastern Ohio, about four hours from Toledo, 2 hours from Columbus, and 45 minutes from West Virginia, lol. As a person who's formerly from TX, it sounds weird to say give me a couple hours and I can be anywhere. I just want someone who might have some more answers other than what I've been getting. I think I'm having some reactions to these medications, and that doesn't help diddly squat in trying to get better with anything.

Get one? Sounds like a dumb question, but yeah. For those who've been fortunate enough to see some of the specialists in this field, and even for those who were fed up with the treatment you were getting and desired to expand our dysautonmia horizons... How did you approach the subject? My doctor is a great guy... And maybe this is my impatience with POTS talking, but I'm frustrated with everything going on. I'm having a very rough time with the medications he's trying me on, and when I prompt the question of "aren't these bad side effects?", he responds that he's never seen this effect before, I'm fine, and I just need to wait. Well... Okay. I've waited. I know my body, and something ain't right here. Even my roommates will tell you, something is up. That's how I ended up in the er the first time, they literally thought I was dying because I was seizing and more unconscious than conscious. He's upped my midodrine, and added fludro, I'm pounding fluids and electrolyte solutions and salt like a frat kid at a kegger. And I know a lot of this is waiting, I get that... But it doesn't explain my shaking still. It doesn't help I'm still passing out, further injuring myself. I sit up, stand up, lay down, lightheaded if not out. My heart has decided to start throwing all sorts of stuff at me lately, and I don't do we'll with feeling every beat it decides to misfire. I just want to know if a different doctor might have a different look on this, or a different thought of treatment. But I'm not sure how to approach this question with him. As it was, it wasn't even him that diagnosed me, it was his collegue that did, but then turned me back over to him because he's the EP cardiologist of the practice. How did you get a referral? Because my first instinct is to go "dude, you have no clue", but I know that isn't right. So... How did you do it?

No tips, just needing some help myself sleeping... I get maybe two to three hours a night. I try to nap in the day if I can, but the midodrine makes me feel horrible if I do manage to lay down. I've also had to rest sitting up lately because my heart is palpitating like crazy, and I hate it, it shakes me very hard physically. My doc said take Benadryl. Yeah, that ain't working yet.

I'm jealous of sleep... I get maybe three hours a night, and that makes my pots worse but I lit ally have had insomnia for months now. I m like you AKGIRL, I can't work, but man I want to! I've tried to keep myself on the same schedule I had before I had to quit, which was waking up and getting going around 5:45, but its so hard anyways, so I quit. I was up before then anyways, so what's the point. Trying to get myself going right now. I've gotten up twice... Bathroom runs, and managed to get some clothes on, but now I'm laying back in bed. Both times I got up, ended up with me on the ground. I am going as slow as I can, trying to take as much time as I can. Just so frustrating! But I see some ideas in the previous postings that I think I might try... Like taking my meds later, turning off the sound in my alarm, etc.

No to stevia as well I tried it a few months ago.

Yeah, I really wish the syncope would slow down. I catch myself near it a lot, and it seems the more I try to fight it, the more exhausted I become. I fought it like heck this weekend, because the roommates and family were out of town, and I had another friend with me part of the time, and I didn't want to freak her out too much (she's seen me be out before, but with the roommates present, so by herself, I was afraid she would panic for no reason, this just happens), and its possible its all catching up with me right now. Everyone here is cool with the fact Becia may not emerge from her room until after 11 or so, and if the door isn't open, knock and check on me. The only one not cool with it, is me, lol... I wake up and it's like I've got a list a mile long of things I want to accomplish and do, and then mys mind gets really upset with my body when I can't do it all. The past few days though have had me shaking and my heart just palpitating like crazy though when I wake up. The beats are just as hard now as they were prior to my diagnosis, when I had two heart ablations for PVC issues.

Sounds like a really dumb/weird question, yes? But I'm having some issues differentiating if this is POTS, side effects from medicines, basic Becia stupidity, etc. So, last Friday, my doctor added Fludrocortisone to my regimen of increased hydration and salt intake, Midodrine 10mg x3 day, and "stop trying to save the world." (his words, not mine... I guess I have a co-dependency issue along with POTS). I am curious to others "getting up and going" routines. The past couple days have been VERY rough for me to get going, and I've ended up on the ground more than I care to count (okay, probably about 5 times in the past 2 days). I bring water and a salty "breakfast" with me to bed every night, so I can start the day off drinking, and don't have to get up to get something in my system if my sugar is low when I wake. I normally start sitting up slowly, by placing a few pillows under me, waiting, drinking and eating some, then more pillows, until I'm upright and this abates. I also take my first dose of Midodrine, and this morning, took the Fludro too (been taking it at night, but forgot last night as I kept passing out and didn't get it in). The past two days have been so hard on me. I've ended up being picked up from the ground once, but have hit the ground about 5 times total. Sitting up is an effort that has me laying back down. It isn't until about 11, I can get around and do much, or trust myself leaving my room for worry of passing out on the hardwood. This may be because I did a lot this weekend, and maybe it is all catching up with me? Maybe it's the medications? I'm not certain, all I do know is that it *****. How do you start your morning?

I ordered a box of Thermotabs yesterday to give them a try. Trying to get a "number" out of my doctor is like getting blood from a turnip, I haven't gotten a lot of helpful information just yet. Just the "You've got to drink more and get more salt." I'm a number based girl, tell me how many ounces I should aim for a day, then I have a goal to work towards. As for the salt, tell me how much salt you want me to have a day, give me a ballpark figure, anything to make this easier on my mind. I've tried increasing the amount of sea salt I use, because it's a salt I can tolerate apparently. I was sitting there at the table a couple days ago putting it on a Hostess cupcake, of all things. I thought my roommate was going to fall off the chair laughing. I am a very bland girl, and very rarely do I salt and pepper things. I just now got to where I might put some salt on fries if I make them at home (at the age of 31, I still order fries no salt at the fast food places). I am allergic to some of the ingredients in the NUUN tablets, unfortunately. We started researching those the day we found out, and it seems like any water additive like that is a no-go because of my allergies. I'm allergic to artificial sweetners. I'm tempted to buy one of them and give it a try, just to see how bad I might react to it, or if the doc can give me something for the effects (I get horrible, horrible migraines... they make people think I'm having a stroke, they affect me that badly), I might be able to use those in a pinch as well. Thanks for the help ya'll and any other suggestions, I'm more than open to them I need all the help I can get right now.

I've had this, and now make a point to try and elevate my legs on a ottoman or something. Even if they aren't "elevated", they at least aren't sitting on the ground and causing more pooling. Don't know if that position is comfortable for you (depending the angle, it can be bad for me since my legs hyperextended a lot), but its worth a try. As for during a session, may want to explain to the client you need to elevate them, if it seems weird.

Sometimes I get down before I go out, other times it's been really sudden, and there aint nothing I can do about it. Hence how I ended up on crutches for almost two weeks, because I apparently hit the floor pretty hard and my roommates thought I had broken my hip or dislocated it. When I came to, I asked for some help sitting up because my back was really wrenched, when he started to move me, I screamed. I'm a little afraid to leave my room, because the house is hardwood and stone, my room is carpet. Already hit it twice this morning, my fault, had to get up quickly, and it didn't work quite as I would have hoped.

That's okay. I've tried increasing via salting foods, salty drinks (apparently margaritas don't qualify, haha), but he thinks its just not enough. I'm really not satisfied with this doctor, and am seriously thinking of finding a new one, but I have no insurance at the moment, so this is a very limiting situation for me.

For those who take this supplement, what brand do you use? And what is the dose of sodium per pill? My cardiologist suggested I look into maybe taking these, but then couldn't give me a suggestion to brand or strength. I've looked on amazon for suggestions, but thought I would ask here first before picking a brand. I'm not looking too forward to this, seeing as I have a sensitive stomach, but right now I'm willing to try anything, because my eating habits aren't supporting the sodium I need apparently...

I've never heard of it, but looking at the symptoms and such, that describes a lot of my outs. To a T.

I go through this a lot, just suddenly "bam." I try to use my yoga techniques for breathing to slow myself from panicking, but sometimes that doesn't work. If I end up with a really cold feeling, I know I'm going to pass out, and there's nothing I can do about that part. When I pass out, according to those around me, I stop breathing for about 20-30 seconds. Laying down, fan blowing some air at me, give me about an hour or so, and I'm usually good. Foggy, but good.

I do, and was told by the doctor "You're naturally twitchy." Um... How come I am now, and I wasn't before? I don't remember being twitchy... Never really thought about it, unless it freaks people out (like, when I'm driving...which I'm not anymore).

Yep, I was diagnosed with IBS when I was about 22, even though I'd been having issues with it since I was about 16. I do my best to control it through diet, but I also take Bentyl for when I have a really bad flare up of it. Mine isn't the constipation, mine is IBS-D. They once told me I basically was in a precursor for developing Crohns, but after getting my POTS diagnosis, I'm seeing more and more how all of this is coinciding, and how I could have been developing the POTS even in my teenage years.

I've had that happen when I'm trying to sleep. I shake or jolt awake because the feeling is so strong.

Yeah, this drug is havoc on me as well. I am still passing out at a alarming rate according to those around me. I was told yesterday to give it through the weekend at the dose I'm on now, and then increase it on Monday to see if that makes a difference. I can take the goosebumps and chills okay, but I don't get rest very easy, so not being able to nap is killing me in the afternoon when I really need to recharge. And this stuff has sent my heart rate into overdrive too... Very erratic.

Well, last night was a bust... I ended being transferred to the local er after passing out twice, where they thought I broke my hip. Thankfully, a severe sprain, but oh my goodness... I was educating everyone in between passing out and screaming in pain. I called the doctor yesterday too about the meds, but never heard back. So frustrated.

Yep, I've been pouring over this website since I discovered it a couple days ago. This place has been way more helpful than the packet of info I got when they released me from the hospital last Friday. Being the second person that the doc has seen with this, I guess we are all lost. I live in Ohio, but being without insurance, I'm kinda at the mercy of whatever I can afford, which isn't much, so seeing one of the specialists, I may never be able to do so.

Yep, proamatine is midodrene, or however it's spelled... My focus is way off today, sorry, lol. I have a call into the doc because I'm not sleeping, and trying to apply for some local aid has been really causing havoc, but it's one of those things I've been told to just wait time and time again. How long am I supposed to wait and go on like this without getting any answers? Patience may not be my virtue, but at some pint we all have to step back and go "okay, this isn't working, what's the next step?" And Dave and Lori are totally awesome. Anyone who makes sure I pass out comfortably (well, as comfortable as possible), and then have lifted me to bed when I still can't feel or move, is a saint. I'm a whiny, whiny patient. And the pvcs, they are saying those are gone, but they did see PACs on the monitors when I was in icu last week. All I know is I really don't want another ablation, if the ablations I had might have set me on the course I am on. I've always suspected something else was weird in me, but it wasn't until that second ablation that heck really broke out.

I've never swam for help with this condition, but I did do water therapy with my last knee surgery, and it was amazing. I got just as good a workout from that, as I would have using weights and such. And it was so gentle, and I enjoyed it! It didn't feel like torture. I guess maybe I need to invest in a swimsuit again and try it for my POTS as well, because what I truly want to do (bike riding and running), are currently a no-go.

I needed this video... It's put a lot of what I'm dealing with in perspective, and helps me understand.