Becia

My "favorite" doctor moment came when I was first diagnosed, and we were realizing the issues I was having being able to stand and maintain at all, and I passed out, injuring my shoulder. Went to the gp, who learned I was just diagnosed with pots, and proceeded to tell me I was a liability, and she wanted nothing to do with my case at all. I should be seeing my cardio for a sprained shoulder? All I wanted was to be sure I didn't severely injur myself. Come to find out, I've dislocated my hip and my shoulder in my falls. The gp I see now seems to be a good guy, same office as the other, and seemed pretty willing to work with my docs, but the current issue is I need hydrating, I need nourishment, and I need it pretty fast. I've managed half a bottle of ensure today, choking all the way. I tried sipping some water a bit ago, and didn't do too bad, but I know that isn't gonna pull me out of this scenario just yet.

Cure for stress according to my friends is alcohol, lol. I told them if I could, I certainly wouldn't mind a couple whiskey sours or a beer or two. I actually kicked a friend out of my room one night when he was trying to help me sit/stand up because I passed out and hit the floor. He was drinking this divine dark ale, and I could smell it on his breath, and I was like "you are so cruel." He asked why, and I had to explain how hard it was to not try and kiss him because I really wanted a beer, and he smelled amazing at the time. He stepped out within my eyesight, I heard him literally gulp it down like a fish, went and grabbed and mint, and came back to me. I wanted to slap him so hard for that, lol. I still sit there and smell the bottles if he's drinking one and I'm the same room. Everyone thinks it's odd, it just puts me in a happy place if I can't drink it.

The er wasn't even worried abut the fact I couldn't talk. I couldn't form words, kept getting the wrong word out, nothing. Had a couple seizures even, and nope, just your typical migraine. My housemates are extremely mad at my current care. The neuro appointment was for nothing. He basically told me I would get over it, yeah, I'm not a typical case, but I'm not crazy, but you need to do this, and take this, etc. we mentioned I cannot swallow, so no meds are really getting into me at the moment, so he put through a medicine I could take for breakthrough pain that I have to inject, but I'm not able to take this medicine because of my heart. He basically has no interest in seeing me because "pots is a heart condition." Isn't it controlled by the autonomic nervous system? Isn't this part if the brain? Have I been researching this wrong or something, and how come lots of pots patients also have neurologists. On a weird note, he did say I wasn't crazy, I'm just not a typical case of anything. Not sure how that was supposed to make me feel, but okay, I told him I was stressed, and he said he knew, maybe I need to go see a counselor or something. I'm not opposed to this, but right now, my current condition is making me stressed. I can go without eating, that's not a big deal for me, but the hydration issue IS. If I can't swallow water, or Gatorade, or anything like I'm needing to, yeah, my pots flares up, and it's worse. Yes, this is stressing to me, wouldn't it be to you? I know I don't like the way it makes me feel, it's not cool. While I was in with the neuro, my power of attorney went to the cardio office, and I could tell he was extremely angry when he walked into the office. They also think none of my current condition really relates to them, so go talk to my pcp about this. He tried to get some various answers, but everyone kept shutting him out. I have a pcp appointment apparently for today as well, Dave (my pow) set it up before we even left the neuro office. So I'm hoping I can try to take a shower at some point today. I really want a shower. It's so physically taxing to do so, and do all these appointments, but my hair is greasy, my clothes are irritating me, and I just really want a shower. If a shower can help the pain, what's there to lose. And as a friend pointed out, if I take a shower and get admitted to the hospital again like I had before with this problem, at least I would be wearing clean underwear and have my legs shaved... Right now, let's just wash my hair, lol. I have great people in my corner, and I'm thankful for this board. I guess I will see what happens at the pcp office. I truly hope and think Toledo may be my best bet in the long run, and I'm hoping I get in soon, because this all is way too confusing to manage.

Yep, we picked up two types of ensure last night, and chuckled a t the warning on the side that says you can't sell them in Vietnam or Mexico. I made some super super thin mashed potatoes too last night, I only got about maybe 1/4 a cup down then started throwing them back up. Will try the ensure this morning. Been told if I don't think I can swallow my midodrine (which is my largest pill and the most painful), don't do it. Tried to sip water all last night for some sort of hydration, but just stopped after about three sips because I was choking enough to nearly throw up the night meds I had managed to take after the mashed potatoes incident. Did get about two bites of ice cream down too, something cold to soothe the roughness of my throat, and that helped the night meds going down, but being nauseaous and bleh didn't help for long. I have two friends going with me, and we are not taking no for answers today. I don't want to be admitted, but I've been told to pack my usual stuff just in case, because they did this last time at my diagnosis, and we were not prepared.

I've had a regular MRI and lots of ct scans as of late, especially since the talking thing has really arosen up. I will see if my neuro would put in for that test tomorrow. From what I understand, we have lots of questions for lots of people tomorrow. I'm attempting to eat some really mashed potatoes and am choking. This really is for the birds.

I apparently already have an appointment with my neuro tomorrow am, and after that, we are apparently heading to my cardios office to see about Iv therapy. I've managed to slowly drink about 3 ounces of water, still having major issues choking. I passed out trying to take my midodrine, which is a huge pill, it's still stuck in my throat, and the coughing and effort I'm trying to dislodge it and get it to go down right, I can't manage it. No food yet today, we are all terrified to try it given how water has been with me. Gonna try and go to the store later with a friend to see about some ensure or something, if I Can swallow liquids easier, that would get some nutrients in me,it I know I have got to get more hydrated, for pots reasons and headache reasons. And out of all of this? I really want a strawberry milkshake from sonic. Maybe something cold will numb my throat a bit, at least make the swelling go down some from being irritate by the sharpness of pills and such I'm still trying to get in me to try and get back on a regular pots medication layout.

Yeah, they ended up giving me fluids, phennergan, Benadryl, and nubain last night at the er, and that helped the pain somewhat, I'm very itchy (to which they gave me some decadrone to help with it all). I honestly don't remember how I got into the house, other than my housemates dragging me into my wheelchair, dragging me up the stairs because my ramp currently has about three inches of solid ice on it (we keep getting hit by the snowstorms), and throwing me in bed. I am still hurting, but I seem to be talking better and making sentences. Last night while waiting for my discharge at the er, Lori and I talked for a bit, trying to recognize this headache, and all I could come up with is it had to be the up in Paxil in an attempt to fight my depression from this all. I thought I was doing okay, but I'm not. I'm talking extreme upset and anger at my condition, for the lack of answers, help when I need it, and just basically my family tossing me aside like I'm no longer important. I just keep wondering when I'm gonna figure out the magic key to my condition. I smile for the cameras, but inside I'm praying that maybe this won't be a day I have a seizure, please don't let me pass out and dislocate something again, please let my headache be tolerable so I can study a few pages for school, don't let my wheelchair tires come off again, because I don't have the energy to fix it, if I could just stand for a couple minutes I can put my pants on. All these happen on a a regular basis. I chose between eating and drinking. Which is more needed to me. I chose between cooking food or taking a shower, because both do me in so bad. Today I'm just staying in bed. Sending my scripts with a friend to the pharmacy, trying to get a hold on getting more fluids in me, and praying the headache doesn't blow up. Something has to give. My doctors need to stop fighting each other and get their acts together, because I've proven time and time again, I'm all in for anything that will help me, but I can't have everything interacting with each other trying to kill me in other ways. Get it together dudes... I pay you way too much money that I don't have to try and survive. And thus concludes, my evening, my thoughts throwing themselves out there, and my body... I want another nap.

I'm about to go visit my third er in one day. Ended up in local one last night this time, can't talk, vomiting, migraine severe with dehydration, they started treating migraine as they could, but still I have lost the ability to form words in coherent sentences. Sent to OSU in Columbus oh, and they treated migraine further, nothing about my speech, and still left me highly triggered, dehydrated, vomiting mess. So friend is about to take me to Adena er, where my doctors are, much to their desire to not see me. This pain has to end, my pots is so highly triggered right now, I get any more upwards of .30 degrees on the bed, I pass out. I am choking on everything, water, pain pills, itty bitty pills, the works. No food in three days because of flare up with ibs, and well, everything's just going to pots. If they can do something about the intense dehydration, maybe my body will start to correct itself? I'm fluent in sign language, but those around me can barely remember the abcs, and I think my friend who speaks German would prefer to to curse at him right now in his chosen language. Just need some sort of answers, relief, anything, I feel like this is Potsie death for me somehow.

I was working on trying to get going this morning, when my housemate came into my room and sat down on the edge of my bed. My EP cardiologist who did my heart ablations last year, and had been treating my POTS, passed away on Sunday. He had cancer when he started treating me, and I've been fortunate that I still was able to see him, as well as his co-worker Dr. Keller, but still really bites. I'm just crushed. I know I'm in good hands with Dr. Keller, and I've heard that Dr. Hart gave him quite the rundown about me and several other patients who were high on his radar. But I'm really just crushed. This guy was awesome enough that they knew of him at OSU Wexner in Columbus, and trusted his judgement in treating me (even though my body doesn't seem to respond to treatments at the moment). http://www.adena.org/media/newsdetail.dT/dr-hart-passes Im just in shock. Sad when you lose a good guy.

Lol, it's okay. Sometimes laughter is how I keep from strangling people, lol.

"You look like you're doing better." Never mind the fact I had to change clothes because I passed out, had a seizure, and peed in myself, or the fact that four months ago, I could walk a little bit, and now I'm stuck in a wheelchair.

My situation didn't come about because of my health initially. A friend of mine offered his extra bedroom a couple days after I had heart surgery, so I could relax and heal, as my family life was very rough, and I've never been the one to take it easy on myself. After those few days, when I went back to work, he and his family offered me to stay with them as their housekeeper. Little did we realize that another surgery was in store for me, and then ultimately, a diagnosis of dysautonmia which currently had me wheelchair bound and reliant on them more than I really want. My family was angry I left, because I've always been the one who took care of everything and everyone, and it was basically cut off from my family. Terms are slightly better now, but I'm still the selfish person who left for the wrong reasons in their eyes (taking care of myself is apparently a wrong reason). But without the people I have around me, I know if I had stayed at my house, I would be dead right now. I don't see how living could have continued. I would have worked myself to the edge and never questioned why. Just the way I was raised... I wasn't allowed to be sick, hurt, tired. Even though it's left me on the outs with so many of them, I wouldn't change it. The people I live with now are my family, pick me up when I pass out, have made critical medical decisions with a balanced thought process, and truly care for me. They love me for me, accept my weaknesses, and celebrate my strengths.

OSU declared my dysautonmia may have always been there for the past few years, but after my second heart ablation for bad pvcs, that's started my downward spiral.

No worries, I don't like this guy much at all. No doubt he's a smart man, but his bedside manner leaves a lot to be desired. Even my friends who've gone to the appointments with me don't think highly of him.

I have issues off and on with this. Normally after a bad out, I can't swallow for awhile, like my body has to take a certain amount of time to recover all it's functions.

Sleepytime tea. Setting a routine for bedtime. No electronics in the bedroom (which, I frequently break though, because there are days I don't get out of bed, but try to have them all off by a certain time). If you're able to, a nice warmish shower/bath before bed always helps me (although I frequently cannot do this right before bed, just because my BP drops too much, and I need a sufficient amount of my Midodrine in me to stay upright in the shower, even with a shower chair). Music or white noise (I use a fan on low). Comfortable clothing and bedding, which can sound odd, but I have some crazy neuropathy to go with my POTS, and being physically comfortable can make a difference. I used to sleep naked because I couldn't handle constriction, but lately, I can handle two pairs of shorts, and my cami tops, and not have too bad a problem. I also love t-shirt sheets for softness. As for elevating bed, you can use bricks, or walmart sells bed elevators for $11, I believe. They are over in the household storage stuff where the rubbermaid containers and shoe trees are stocked. I personally haven't used any of those, as I sleep sitting up a lot because my heart races if I lay flat, but I've heard others use them happily. Welcome to the forum!

I love sleepy time tea! I drink it or peppermint normally right before bed. My neuro really wants nothing to do with me, or at least that's the impression I get. I don't have seizures in his eyes, but he wants me back in three months for a follow up? For what, to see if I've had these episodes again? Well, had them last night... I cannot seem to get anyone to prescribe anything for sleeping. I'm pretty much sunk until I can get to Toledo, and that can't come soon enough.

Thanks guys for the kind words. They have figured out that I stop breathing when I pass out, but how to go about dealing with that, no one has tried. They just want to make sure that I start breathing again within a minute or so (and there have been times I've needed assistance to do so). As for the benedryl, my cardio thinks that's the best thing for me, even though I get no rest with it, unless my body completely crashes. Add to the mix, the Tramadol makes me itchy, so benedryl gets used extra if I'm having a bad pain time and needing to use it on top of it. The only "advice" I got was to not stress my body. Well, sitting up shoots my hr to over 120 in the morning. Kinda hard to feel like you're automatically fighting a battle from step one of the day. And when your heart is constantly beating so avast, you might as well be running a marathon. And the pain no one understands, and therefore, doesn't get treated, because it doesn't deal with the heart. I've cried a good bit today, and now have a migraine. I will hunt those articles down later, thank you for bringing them to my attention.

Well, I had my follow up with the neurologist about my convulsions this morning, and he kept saying that mine are literally from my body being stressed/taxed when I try to do things, such as sitting up, walking (the little I do), etc. My 48 hour eeg showed no epileptic activity. I was praying that some of the problems i was having would have some sort of treatment that maybe I could reduce a few of these meds I'm on for POTS, and just to be told that, really just upset me. My cardio had hoped the same, that maybe all of the issues I'm having could be tied to epilepsy instead of POTS, and treatment would be so much easier. Instead, nope. All my doctors are at a loss to why this is happening to me. I asked the cardio guy to possibly up my depression/pots med Paxil, because I'm pretty messed up right now. All i can think of what else can I reduce in my life to reduce the likelyhood of being symptomatic and such. I'm already in a wheelchair because standing up taxes me and my hr to above 200 at times. I can't drive because I pass out sitting up. I am exhausted from not sleeping, although apparently I did get more sleep during the last EEG. The amount of benedryl I take to go to sleep and stay asleep I'm pretty sure is close to overdose levels. I live in fear. I fear having a "jerking" moment (what the neuro called it, because it's not a true seizure, although I pee all over myself during them, am out for quite a long time, and don't recall them, but I can't call it a seizure according to him...), just trying to leave my room. I fear falling. I fear bruising. I fear pain. I fear my heart rate skyrocketing because I know what happens if it gets too high, and it does EVERY DAY. Becia's world is a little dark right now. I'm still in line to see Dr. Grubb in Toledo, that's about 9 months out according to the last timeline we had. I guess until then, I don't know what I do. I know I'll never be normal, but my goodness, can I not catch a break right now?

I have fish. I love fish. Currently have three black mollies (which are named 1,2, and 3), and three guppies (Bob, Bobbette and a red tailed named Sonya). When i lived with my parents, I had a dachshund named Gretchen, but when I moved out to my friends, I couldn't bring her. Their dog Trixie has adopted me, and she's rarely not at my side. She tried to hold me when I had a seizure a few days ago, by evidence of claw marks on my arms. My friends laughed and said they dote on her when she has her seizures, putting her head in their lap and just talking soothing to her, she apparently thought she should to the same thing to me and mine. She's high energy, but when you feel bad, she feels bad. On days I have energy and can do things, she does too. Even when I pass out in the car, she comes to check on me, and then lays in her outside bed watching me. Cant beat the love of an animal when you feel your lowest.

I send you gentle hugs. My family is very much the same way. My sister and I talked yesterday for a bit, and she finally asked me if there was any cure for what I have. I had to tell her no, its something I will deal with for the rest of my life, but the right treatment, modifications to my life and mindset make a difference. There will be things I will always have to fight with, like the missed beats, pain, but if I can get in to see Dr. Grubb and get something different to try other than what all my doctors are throwing at me, I might have a chance at standing in the kitchen again, at maybe riding my bike again... My sister is very self centered, so to hear her actually concerned with me and my life after all this, especially after she saw me in ICU because of it, kinda made me realize she secretly cares about me. I fight all the time with her, I've always had to come to her rescue, and she's powerless to help me. Dad doesn't understand unless he physically sees it, and then, he freaks, and I hate that. Cant take me to the store without some sort of potsy incident it seems, and I hate going with certain people, just because they make such a big deal over the fact I'm passed out, or I can't push myself in my chair anymore, I'm tired, seeing spots, and the world just got a lot more swirly. I hate people who hover. I know I've been much more symptomatic thanks to having a flu/bronchitis thing going on, and I'm off my meds. The past two weeks have been really hard to get regulated on my meds because of the symptoms of everything, and my thought of "Im tired, I really need to allow my body to rest, to lay down." Can't do that on midodrine, but that drugs does manage to help keep me upright for things like going to the bathroom, taking a shower, making food. I'm hoping once I'm done with this antibiotics (which are really setting off the IBS portion of my dysautonomia), I can get back into a routine of my meds and activities. Feel free to vent... we all have these moments. Heck, I have a 400 page journal full of them

I have wondered abut this myself. I currently only have stockings that go to my knees, although the doc wants to try me on waist high. I wear my stockings when I go out, but at home, I normally don't unless it's a busy day and I need the extra support, even though I'm currently in a wheelchair.

Same here! We discovered when we went to go see Percy Jackson in the theaters that I can't handle action movies. This was made more evident when we were watching Red awhile back. It's so weird, but it's true. Sounds bother me, too bright a light bothers me (the only light I can tolerate at night seems to be my fish tank and my lamp on the low switch), action around me, such as going to the store when it's busy and the lights are all on ( our walmart has some natural lighting they use during the day that's perfect, but the moment the night comes and all the brights come on, I have lots of seizures and outs). I say now I'm a pretty boring person, because so much bothers me and it's so hard to explain. Christmas Day I was in tears because I didn't want my family to leave, but the stimulation of them in my space, the kids voices echoing in the living room, etc, really set me off. I have found that if I know where I'm going, normally I can find a place to calm down somewhat. My room, my desk corner with some music, at church I'm normally in the youth room above the gym on a couch with my headphones on if need be, and even at walmart, I will go hide in the yarn aisle, because I know it's kinda closed in, quiet for the most part, and the lighting isn't directly above it. That, and I love yarn...

I see a neuro guy on Monday to see the results of my EEG. I had a sleep deprived one that came back abnormal, not sure what it was, but I have been having grand mal seizures for the past couple months. A couple of my docs think it's all the pots meds I'm on, but the neuro wanted a more detailed EEG done. Ali know is I'm currently tired of coming to on the floor after peeing myself. Seizures or not seizures, this has to stop.