Becia

I definetely have to have my midodrine, or i am a non functioning mess it seems. But ever since ive been on it, it doesnt seem to last as long in me as it does it others... i get about 2 hours of being able to be up and going, as compared to 4-5, and it takes about an hour of that just to kick in.

I think my biggest change area had to be in the kitchen. I love to cook and experiment, being a baker by hobby, and love kneading bread. For me to have a work surface I can reach without having my hands above my heart for too long, I have a table top board that I found at Home Depot, just a simple wooden cut out, that fits perfectly on top of one of the kitchen stools, to make a work surface for me. I roll out doughs there, I use it to hold stuff while I'm cooking or cutting veggies, as well as use a kitchenaid mixer to now help with mixing and kneading. Still isn't the same as getting in there with knuckles, but it's better than nothing, and sometimes the smell of homemade bread can perk your smile up.

And it's a very pretty image! I Love butterflies.

Is there some special thing you have or use that helps you with your day to day life with dysautonmia? For example, my iPad goes with me everywhere, because i use it to organize my thoughts, to relax with music when I'm feeling triggered or stressed, and to talk when I can't seem to form the words right. I can't raise my hands above my head without syncope, so I use an extender/grabber tool to turn on the oven (I can reach the oven from my chair, but the knob to set the temp and timer are on top). The past week since I've been recovering from the hospital stay, I've been trying to find things and change things that could benefit me somehow, to regain some independence, and just attempt to see if it works. I'm going to school for medical transcription, but I have a desktop computer corner desk. Some days I'm okay sitting there for a few hours to a transcribe or listen to vocabulary files, but most of my book work, I'm having to do somewhere where I can put my feet up, mostly in bed. Yesterday I sold my desktop, and purchased a laptop...hardest thing I've had to do in a long time. I loved my desktop, but physically, it just harder on my body with my feet down for the pedal and such. With my laptop, I can operate the pedal with my hand. I also installed a voice recognition program to help with my typing, because I've had so many problems with my hands, strength, and coordination. I haven't blogged on my blog in a long time...last night io transcribed the entire thing, and it was so awesome. It made me feel like I've made a move in the right place. I also ordered a system for my bed that will allow the head of it to incline like a hospital bed. When I was in, I slept at an angle kinda up, but in a ball, in case I needed throw up, I didn't aspirate, and if I needed to get to the bathroom, my body didn't have to go through the long process of trying to sit up, passing out, sitting up more, passing out again. It was kinda halfway there, so the getting into my chair was easier. I know some elevate the bed heads, but doing this had me feel like I was sleeping standing up, and was horrible feeling. This system just raises the head, I can deflate it if desired or change the angle, and doesn't require a special mattress. It's supposed to be here today, I'm really super excited. What are things you use? Strange things, simple things? If it gives me any sense of being able to do something, such as reach a cookie sheet in the pantry, I'm all for more suggestions.

My doctor just wanted/wants me constantly drinking. Water, Gatorade, broth, salty, anything not caffeinated is fair game, just keep pounding it down. And even with doing this, I still do not seem to get enough. But if this will boost me enough to do things around the house, or visit family for a bit, I'm all for it. I'm getting tired of fighting my body to either drink or eat, I cannot do both.

Yeah, I talked to a home health nurse yesterday and was mentioning that this was one type of treatment, and she was just floored that anyone would chose it. My thought was if I could not fill up on fluids and eat, that would be the bonus, so why not? I don't like needles, but I will use them if it helps me. Even my friend who sat in on the visit had to constantly explain that I'm always drinking, and even to no fault if my own, it seemed I never was hydrated enought. "Well, only 6-8 glasses a day will do it," was her response, then we had to start the pots education, which I knew I was gonna have to do anyways, but it just amazed this woman the level of hydration we need. Then she said "oh, I'm sure your doctor isn't going to feel comfortable with that idea." Lady, let him make that decision? M'kay? I just know my body, like all of us do. Time to fight for some therapies that work, instead of end me up in a hospital for a few days, just to fail back at home. Thanks for your info!

Awesome, thanks so much! I was having just way too many issues last night, and nothing was working right, lol.

I have a question that I guess is kinda in line with this one here... When I've been in the hospital this time, I've had more neurologists look at me and my condition, than a cardiologist. Who do you have as your primary care for this, cardio or neuro? I started having my cardio treat me, thinking that was the norm, but I know lots of us also have neurologists for this because it's a autonomic nervous system issue, and we have so many neuro issues with everything, so I'm now thinking maybe I need to have a neurologist be my primary pots doctor, for lack of better terms. Just because I seem to be getting more assistance with my dysautonomia symptoms, such as the headaches, seizures, triggers, than my cardio cared to deal with. He kept saying it wasn't a cardio issue that had me in the crisis I was in the last month, but my neuro kept saying it was because it was pots, and that's a cardio issue. I kinda think it might have started as a cardio issue with me, but after all the meds and such, and now having so many neurological issues, it's possible it just kinda crossed over? So, cardio or neuro primary assistance/manager of your condition?

After some of the swallowing issues and hydration issues I've been enduring since about October last year, i am looking into doing some Iv therapy at home. I thought I saw a post about it around here somewhere, but somehow having issues searching, so here I am asking for people's feedback on this. Who did the order for this, how did you complete this (port insertion, therapy center, etc), and how much fluid did you need during the week or so to be beneficial? My family and I agree that I seem to do so much better when I am able to get some Iv hydration in me, and this last hospital visit I've had lactate ringers for the entire time to get some electrolytes in me, and I feel a world different. After having a swallow study done here as well, it's been informed for me I need to work on getting solid foods in me (or semi solid), to keep my digestive tracts functioning better, but the argument I always have about having to drink so much I don't get hungry, or I end up throwing up everything because I have no room for food and my body freaks out and goes into reverse. They mentioned that maybe getting some hydration this way, I can focus on trying to eat. I can do ensure and boost for nutrients, but I apparently need the stimulation of actual food too to keep my system going. And frankly, I am really craving pizza, lol. So this looks to be an avenue to try. So, thoughts, ideas?

I honestly sleep with as little on as possible, because I can't handle things touching me. I also use a fan myself, more for the white noise effect during winter, but during the summer and my cotton sheets, it helps me keep cool. I have heat issues during the summer mainly, but I've realized if I can find the comfortable clothing I can handle, I take an ice chest with cool cloths if needed to cool down quickly, I can make it manage.

No subtype yet. Hopefully with the clinic visits I have coming up, we can determine this better, and possibly change my therapies.

Meds. I failed the ttt in 30 seconds, and within the doc saying it's pots and getting me moved to a new room out of ICU, i was on midodrine.

That's pretty much exactly how it gets. My friends who've been taking care of me had to explain these seizures to everyone, and I explained them to this awesom neuro I saw today, and she was like "yeah, your body is having a fit because it's overloaded, and everything is going crazy, and passing out and or seizing is just how it's responding until it goes 'I'm good now, I'm calming down', and yeah, it's a real deal!" I'm hoping the neuro I saw today I might be able to transfer to my case, she just seemed really awesome, and she was mad to hear how they were treating the Paxil with me given my previous issue. Given how bad I was this last week, she thinks it was from the withdrawal that made it all worse, but we are now essentially starting over with a clean system, bare bones meds only, and going from there, her name was Dr Kimm at Kings Daugters medical center in Ashland Kentucky. If she comes to any of the Ohio clinics, I definitely want her in my case. Even my pcp said I need a new neuro, because mine is full of it, lol.. I want one doctor on my side for my pots, and after our talks, it does seem I have more neurological issues than cardio issues with my dysautonmia, so I think I am leaning towards a neurologist. I will retain a cardio person, perhaps not the same one I am currently seeing, but my old one before I had my ablations last year. The cardio symptoms I have are being triggerered neurologically, from what I understand. I will def keep you in the loop. It's been one heck of a month for me, with bronchitis, Paxil-drama, illness and body losing it, to now. I feel more at ease than I did at OSU when they said it was pots, and to keep going. My doctors here have all agreed being told I'm maintaining as well as I can, but not finding other therapies to get me out of a wheelchair or at least making it to where I can better function, was a crock of beans. And I have said, even if I'm confined to a wheelchair, that's fine, but let's keep trying, do something other than twiddle our thumbs and pray that the same old same old all of the sudden goes pop, and I'm able to walk again, find out why my bp and heart are doing this, why am I shaking constantly, why am I twitching, why am I having those moments where my entire body fails doing something as simple as trying to wash my hair. I'm staying one more night, but without the Iv right now, and kinda just going at it easy. Tomorrow I hope the roads are cleared enough to where I can get home, and get up the hill to the house. Everyone had to leave their cars at the bottom if the hill last night and walk half a mile to the house, and we didn't even have the snow yet then, currently we have about a foot or so on the ground.

Mine does the same thing! My seizures were basically chalked up to my body freaking out and that's how it handles it until it gets itself back to control again. The neuro I saw this afternoon was amazing, I love her. She is getting me into Cleveland Clinic, no more Paxil (oh, she was so mad about what they had made me go through on it, for something that obviously wasn't working when they first started it), and I look to e released today to head home, with Cleveland on the schedule, given if the weather will cooperate. Still waiting to see if it's even able for someone to come get me since the roads are crazy snowy and slick, so may stay another night to just make sure I can get home safely, but I am extremely optimistic at my care. I'm ditching my neuro, I'm close to ditching my cardio (I do plan on making a phone call and voicing some thoughts loudly), and I am so gonna get better. I may not be up dancing a jig in a month, my condition didn't happen overnight, it's not gonna fix itself overnight, but hearing the words " you're not crazy, you're right there are better therapies out there, and what you are doing, is not working." My bp and hr has been high, but I'm also in insane pain, and basically my body is overloaded sensor wise too. My early morning bps are nice and normal, my Mido bps are higher, but when is stress my body, yeah, it's overload, bp up and hr near 200 or more. I explain it as like my body doesn't like that feeling and shutting down/passing out is it's way to make it stop. The neuro agreed here. Oh my goodness, I'm not crazy! My power of attorney and friend asked how i felt, and am I feeling like I can stand more or longer, etc. I still am at the one minute limit, but my body isn't shaking so much and it does seem a bit more stable for that minute. I'm afraid to try any longer without help because getting out of the shower sometimes can be too much, but when I do come back from passing out, I recover a bit quicker it feels.

They haven't tried anything pots specific here at this hospital yet, but I am apparently getting into Toledo with an associate of Dr. Grubb next month, according to my power of attorney, who's been calling everyone and anyone. I think this hospital visit is mainly to get my body back on an even keel again, so we can resume the fight next. I stopped taking the Paxil, I truly think this was the drug responsible for some of these current issues, and since I hadn't taken it in a week, I asked to not take it last night. I do not see the it's benefits for my pots, and it certainly hasn't helped my mindset for depression, which is why my original cardio wanted me on it. I don't think I do well with ssri's. Celexa gave me horrible issues. Since I don't fit the typical pots, and the docs here don't feel comfortable dealing with my pots, I'm thinking Toledo will be my best bet. Everyone is going "you need to go see _____ for that", so I've been all over. And everyone seems to add meds and not do anything about interactions too. That bothers me. Since I was admitted, the only meds I've gotten are my midodrine, which they got the tiny ones for, thank goodness, my florinef, and stuff they've given me for pain/nausea, and hopefully to fully rid of this headache, and get whatever inflammation I have going that can be causing this current setback, down. It's been so nice getting Iv fluids, because I feel like I can be able to eat and not be so full on liquids that I don't have that desire. My power of attorney and I think that I either need to stay in an environment where they can better treat me medically, like an assisted living, for a short period of time, to make sure my body doesn't relapse like it did this week. He's terrified if me getting out, and in three days, being back to this state of malfunction because I cannot maintain it at home. He told me last night he was tired, and not because of all the er visits and doctors visits, but the fact that all I could do was curl up in a ball crying in pain, throwing up Ice even, and ther wasn't anything he could do to help me. And here, they are helping me. While I would so rather go home today, I can see where he's coming from. Don't know if I will be released today or not. I can tell you, that I felt like a new person yesterday. Yeah, still had my bp a bit high in the evening, because I was so blooming upset after talking to him about this, my morning bp was right in the money in the 125 range. Still passing out though. I'm confused anymore it seems, but I need to start from a clean slate medicine wise, I think. Just doesn't feel right if I'm on all these pills, and nothing positive is happening. Too much in my system working against me.

My meds help to a degree, which "isn't near enough!" In the words of the doctor I saw last night when they admitted me to the hospital. It's just a complicate case. I can stand for maybe a minute before I pass out, so wheelchair for safety. Im a work in process.

When I was diagnosed, it was low, so my docs just declared it the usual case of pots, and told me they want it on the high side. But even without having my meds in my system, it's kinda high. I agree stress and dehydration can tax me, so maybe that's one reason, my morning bp was 125 over something. I know I've mentioned it to my doc that maybe it's hyper-pots, but never really got an answer. Ate a few bites at breakfast, drank more than anything. No lunch yet, kinda getting headachy and bleh again. Took a dose of Mido at noon, so I'm hoping I can just kinda curl up in my chair and try to rest, I know I would prefer to lay down, but that's a no no.

I can relate to her, I pass out on a daily basis, sometimes double digit amounts. I pass out even when laying down, which is weird to explain. I can't hold my hands above my head because it does it too. Don't have much advice, but I'm sending my thoughts to ya. I spend a lot of time crawling and I use a wheelchair now for safety. I do hope she gets a therapy that works for her. *hugs*

They were shocked we drove an hour to get here. At this point, I think our next option was to head to Cleveland Clinic. I can't tell ya the difference I already feel being here. They are running the lactate ringers slow, to give my cells a chance to get some electrolytes, instead of pumping everything fast and hard to where I don't stand a chance to grasp at anything replenishing. They gave me some stomach and pain meds, and I literally just woke up from sleeping 5 hours or so (which is rare for me, sleep deprivation is a problem we are hoping to deal with here too), and I literally feel the best I have in a week. Little bit if the headache, yeah, still a bit nauseated, but I'm able to sip some water, and I've kept it down. I was throwing up ice chips before all this. My night nurse gave me some lifesavers to try sucking on to get the icky out if my mouth, and for once this week, I was able to put something in my mouth, and not get revolted. I'm happy enough right now, I could cry. I even can feel a vein now, lol. I don't like hospitals, especially where my doctors aren't at, and it feels like I'm constantly having to explain my pots to them, but this place seems really, really good. After doing orthostatic bps for the nurse, we are realizing that my bp is still skyrocketing instead if dropping, but my heart rate is insane. I managed a standing one for her, my bp was 187/145 and my hr was 192, and I nearly passed out before she got me to a wheelchair. I wonder if I'm light headed during the hr spikes like this and I pass out because my body literally just doesn't handle this well, and shuts down to get me to where it can manage again. Wondering if the high bp is because of stress, which no doubt, I've been now, what's gonna happen when I try to start back on my midodrine in the am? Do I have a different version of pots, or autonomic issue? So many questions, but I don't have fear right now, like I have in the past. I honestly don't think I know what this feels like, so yeah, I cry, lol. My power of attorney and friend who brought me here gave me a list before he and his wife headed home last night... All it says is our goals: before I get released, I need to be able to eat, drink, take meds, find out why my swallow ability has decided to really rear up and be bad, and how can I get some sleep. He said my body has literally just gotten pushed to the brink, and that's when the bad stuff happens, I have to be able to get at least 6 hours of sleep. I can't live on none to 2houre a night anymore. For the first time this week, I feel like I gonna be okay.

I've been admitted to Kings Daughters in Ashlsnd Kentucky. The er doc we saw first told me if you think you need to be here, all I have to do is call. Currently on the neuro ward. My pcp ordered a swallow test for the 10th, but we are hoping maybe they will do it here, as well as get some other stuff looked at, like my med situation. I've tried to request Iv therapy, and my docs keep thinking it's not needed. On a normal day for me, yes, I can hydrate decently, but the past two weeks after a med change, I've been constantly sick, and now going on one week without holding anything down. I keep thinking if I can get hydrated and my nausea under control, maybe the swallowing will ease up a bit. Right now I'm scared to swallow too much because I choked getting my midodrine down, and I'm really sore from that, as well as all the acid of vomiting. Maybe a fresh set of eyes on my case can get this moving positively.

I'm still dealing with dehydration right now, but after the last failed er visit to admit me, and the lovely arguments that we are still having with said hospital, I took a day off and just laid in bed. I'm literaly having a moment of just being done. I have no fight, I'm in too much pain, and just too tired from hustle and bustle, I just need to be done for a bit, and rest. Tomorrow will be one week since I was able to eat. I have been trying sips of water, even added some peppermint oil to it to help soothe stomach and give it some flavor, but still vomiting a lot. Called the nurse line on my insurance yesterday to get their opinion, and she said at least if I was trying sips of water, even if vomiting, you're still getting some water in you, but yes, you def need more, and I need something with glucose in it, because my sugar normally runs 90-100, it's hitting 70's now, which I know isn't too low, but it's too low for my body. I told my friends I would go to a different er today, which is a farther drive. I don't travel well usually, but with no pots meds in me, I'm unconscious most of the time, so it won't make a difference. We will probably be heading up there this afternoon. Headache really bad. Was able to speak decently yesterday, but this morning, it cranked back up along with the vomiting, so my speech is off again. My power of attorney got ahold of Toledo yesterday, and I can see one of Dr Grubbs associates in March, which is better than the November call they have for me currently. As much as it seems like everything is fighting against me, I do like the cardio I have right now, and if he wasn't in surgery Thursday when all this began to really come about, I think he would have seen us. The admitting policies of this hospital have completely changed, which set us all on a whirlwind, but we are at the point, taking no prisoners, the last visit should not have gone like it did. They had to ultrasound my arm to find a vein, and still messed it up, so yeah, I'm pretty dry right now. Today's a new day. We shall see how this goes. Thank goodness for my insurance now... I can't even begin to fathom how I could manage the bills I'm sure I've gotten in the last 6days.

I think there's a couple different versions of midodrine some of us have had issues with... My main issue with mine is that it's just so large, and I'm having issues swallowing it, but someone I think said theirs felt like it wasn't as strong? Something along those lines. Do hope you feel better!

They released me home or back to OSU, which would end up just like the last visit, coming home at 4 am because people don't listen. We came home. Not the wisest choice, but it's all I can do. Mind is just way to mentally strained, and I know my friend was really ready to go crazy. He even called the pcp on his phone and had it on speaker, and the doctors just refused, said I had too many issues for them to deal with, and don't know why I would come to the er to deal with them. Tomorrow is a new fight, new day. And I have just sat here at my fishtank for about 10 minutes staring at my fishes to try and relax, and noticed, I have baby guppies swimming around. So, nothing really good happened for me today, but seeing that made me smile. Little baby guppies, lol.

They are trying that now, I believe. Have one liter saline going now, but they are trying to avoid admit. If I could swallow, I need a margarita now, lol. Can I just wake up and it be next month or something?

My pcp told me to head to the hospital, he was going to admit me and get this figured out, because I need hydration ASAP. I'm here, and now the hospital is saying there's no record, and I'm gonna have to go the er, and see if they will evaluate me for admit. I've been here twice now this week to this er. I'm trying to get answers, but I'm fixing to break out the screaming. I am so mad right now. Will keep updated as I can. Right now, I cannot talk to make sense but can type ok and I'm fluent in sign language, so I'm doing that too to get my points across.