Becia

June, the swallowing thing if mine I've been fighting for several months... It's like I begin to swallow, and then my throat forgets to finish getting everything down, and I choke. It's really annoying, lol. Right now they are thinking that and some if the stomach issues are refeeding syndrome from last month when I stopped being able to eat and drink right, and then spent a week without food or water because I was so sick with a headache and seizures. Honestly, if I was ranking the places I originally wanted to see a specialist, I was Toledo only, per my cardio, because he had been able to get people in there, even though there is such a long wait. After a few days in the hospital with a new set if eyes on my case, that's the only reason I thought of Cleveland, and started considering Vanderebilt. Then my ranking changed to Vandy, Cleveland, and then Toledo as a maybe. Given how fast Cleveland got me in, and is doing some testing, rather than just leaving me as I am (which is kinda how my originally doctors have done), im pretty satisfied with the visit. Still hoping to get into Vanderbilt, I think that would still be beneficial for me (and for their data as well), but anything is better than what I've been given before. What surprised me is she mentioned possibly lowering my Midodrine, which I'm on 10mg three times a day. She stated that possibly that could be giving me the headaches, and since my bp is no longer low, but ranging more way high, it's probably a med I could do away with, if my cardio agrees. I asked her about the double dose of florinef I'm on, and mentioned that the headaches didn't really take off bad until we doubled that, is it possible that maybe that could be lowered, and she just looked at me like I was crazy (which a lot if doctors have done lately, and what the nurse did earlier when I was giving her my history... Some people don't like educated people in their offices, and telling her I already tried stuff and it didn't work made her irritated). All I could think about is the day I was completely without it while we were getting smaller pills in from the pharmacy, and how I wasn't functional at all... So not looking forward to feeling that way, but maybe if it was a gradual thing? We shall see.

was fairly positive, even if getting there was a trip and a half for me... We decided to leave in the morning, so at 4:30, we left the house (we're about 3-1/2 hours away). About halfway there, we ran into some crazy road conditions, where the roads were clear, not icy or snow covered, to about six inches of snow just WHAM! My friend who was driving me was amazing, as he managed to go down the road about 70 while trying to slow and control the car down, and not hit anyone else. It was so weird, but really set the tachycardia going for the day. We got in about an hour late, and they were awesome to still see us. I had Dr. Browning, and she was pretty thorough compared to what I've been getting from my other doctors, so that was nice. I apparently in their eyes, don't meet the definition of POTS, except for the tachycardia part, but there is obviously some sort of autonomic issue going on. They've arranged another TTT (they tried to get orthostatics on me, but standing I cannot do for longer than 37 seconds or so, and that was a disaster, so we did it lying and sitting with a significant increase in BP and HR), QSART and and a Thermoregulatory Sweat Test (TST). The diagnosis they are using is currently syncope and collapse and sensory disturbance. Also drew about 12 vials of blood for some testing, some which I was familiar with, some which I remember processing in the lab I used to work at for send out, so fairly specialized compared to what I was used to also. I did get two things I've wanted for a long time: A number for how much sodium I should be taking in, and a number for how many ounces of hydration I should be taking in. I've always asked my doctors for this, because I'm a goal oriented person, and if I can see what I'm supposed to take in, I think I can balance my eating/drinking issues better. Everyone's always said "Just drink drink drink drink... Salt till your hearts content", and I have struggled with this for several months. Somedays I can drink like crazy, but then I don't eat. Salt I'm getting better with, but still need to visually see how much to take in. After arguing with the nurse (she doesn't like me, I'm sure, but oh well...), I have numbers and some better guidelines for everything. She said salt tablets are going to be my best bet, but after being sick from them last time I tried them, I'm just gonna have to measure things, add extra, and go from there. I think I can do it better now that I've got these guidelines. My blood tests were done today, and next month I have two appointment days for my other tests. In the meantime, I've also sent an application for Vanderbilt in, looks like we are still going forth with PICC line or port to ensure fluid hydration while I still struggle with swallowing (although the bit I ate today, I did pretty good with, so I'm satisfied and not too nauseous at the moment), and I'm just gotta wake up tomorrow and keep trying. Very interested to see what these tests might show.

I'm hoping to get my paperwork faxed in today or tomorrow. I emailed them last week when completing the orthostatics portion of the paperwork, and that led to a several hour discussion via email with them about what happens, how long it takes, etc. It was rather enlightening. I showed everything to my doctor as well, and he keeps thinking there's no way I DON'T get in, but I'm rather not up for counting my ducks before they hatch. All I know is these past two weeks, I have nothing to lose anymore, and it's frustrating to keep doing the same thing over and over. Just because I'm going to Cleveland Clinic on Tuesday, doesn't mean I'm not giving up on going here. I think both would be beneficial for me in different ways. If my freaky case of POTS (in the words of my doctor, lol) can help them, so be it. If they can help me, even better. And I'm an idiot, every time I search, I seemingly get nothing. But I'll keep trying, maybe I just haven't found it yet, lol.

Awesome, thanks for the info! I might be close enough to stop by a shop and try one out. I was asked what I missed most about my past that I can't do in my current life, and riding my bike was above driving my car. I miss working on my car more; that's what dad and I do together, our project and bonding time. But I miss racing, and riding. Pays to be a freak, my motivation, lol.

Enjoy that nice weather. We got more snow coming our way. I was gonna ask about the recumbent trike... what brand is yours? We were talking about therapies and such for me to try, and all I told them is I want to get back to at least bike riding (I used to race for charity). A recumbent was mentioned, and I saw yours in your photo, thought I would ask I also had a great set of email conversations from a lady at Vanderbilt's clinic today too. Mailing that paperwork off on Tuesday to be considered, feeling rather hopeful. Like a friend said "Kinda pays to be a freaky kind of POTS person lately, doesn't it?" I guess it does... I'm getting more accomplished for seeing specialists in the past two weeks than I have in the past 7 months!

I'm a Gatorade gal, although I have issues with the flavor. I struggle with being allergic to artificial sweeteners, so very few things out there I can have. Broths, V8 juice are also good, if you can tolerate it. I can do chicken broth, but V8 I struggle with the flavor. I like to cook with it more... I use it as the base of my stew/veggie soup, as well as some in my chilli.

That's the plan as of right now, to spend the night, since I have to be there so early. Not looking forward to hotels (creature of habit), but am looking forward to seeing what all is wrong with me, lol.

Shouting this from the rooftops... I just received a phone call from Cleveland Clinic, and I have an appointment next Tuesday with Dr. Browning, one of their POTS people. I am so blooming EXCITED right now. I feel horrible because I've been up sick most of the night and day, but this phone call just had me crying some happy tears. I never thought it would happen this fast. I don't even care that it is at 8:40 in the morning, and I have a four hour drive to get there, I'm just glad I'm getting there. This has been one just weird day. But with this phone call, its ending on a positive note.

Yeah, my potassium has been low a lot with mine. Couple times I've been in the er, they have tried to give me potassium pills, but I cannot swallow them, they are too large for me.

Lol, yeah, I feel ya. World just keeps turning, and I keep begging it to just slow down because I'm turning double time with it.

Great, lol, I'm now craving subway because ya mentioned it, lol. I love their salads. I fall hook, line and sinker for a good salad, even though the lettuce is apparently one of the hardest foods for me to handle. My favorite has to be a salad from this pizzeria that has bacon, turkey, tomatoes, cheese, and green olives with creamy garlic dressing. I got bored in my insomnia and have started watching that documentary. It is very enlightening! Gastroparisis honestly had never crossed my mind, but perhaps this is something I need to look into. I know my doctors have coined what I have right now as a refeeding syndrome of sorts. I know I tried eating the hamburger yesterday, I thought I was okay until about 10 minutes after, and it all hit me. I threw it up and everything else about 15 minutes after I ate, and still don't feel right. Currently nursing some ritz crackers and water with a stomach pill.

You sound just like me chaos, always feel like I have to keep going for the sake of others. I've officially overdone it today, made some dinner that make me extremely ill before I got into the shower. I gotta remind myself that tomorrow is a new day, and my stuff will still be there waiting on me.

Also, I think small meals help too, so I'm not overwhelming my system all of the sudden. I ate noodles and veggies for lunch, waited a bit and still felt hungry, so I had some clementine orange and water. Breakfast was a banana. I'm starving a lot lately, so I'm tempted to try and eat some cottage cheese, in hopes it might tide me over until I figure out how much/what I think I can eat for dinner. I have a hamburger patty and some potato wedges to do something with, but I'm afraid that's gonna be overkill.

The situation I'm in right now is my body tried to shut down last month, so it's having issues with food period. I'm having issues swallowing,because I get choked on just water sometimes. I'm having issues getting my stomach to accept the food, because it went into reverse essentially, and I am constantly nauseated, and vomiting is quite frequent if I get a little overboard with what I tried to eat. I want food, it just don't want me sometimes I guess. I am currently nearly gluten free, in a hopes that it would be easier on my ibs to tolerate, and kinda will allow me to slide back into normal food. I also am on a soft diet, lots of high lubricated foods to allow my throat to swallow easier, and soft because that seems to be the texture my body doesn't freak out too much too. The few times I've tried to eat "normal" stuff, I've ended up sicker than a dog. Currently doing lots of smoothies, fruits, steamed veggies, jello with fruit for most of my meals, with my main meal being lunch. I take my time and eat what I can as I can. Sometimes I can eat decently, like today, I had some leftover lo mein noodles and steamed veggies, but yesterday I had reheated some bean soup I made a few days ago, and had some issues with it. If my main meal is at noon, my body has time to "freak out" as I call it, I have the afternoon if my ibs is going to flare and hurt and have me running for the bathroom. My midodrine is in my system, so I'm more able to get up and go if I get sick during the day, but at night, it's a very hard process on me, and it run the risk of hurting myself by passing out/seizing.

Its nice that I'm getting all my ducks in a row, although some of the ducks I'm having to treat like Donald Trump and say "You're fired." I made the call to my cardio office today to switch doctors, and I tell you, it was liberating. Strangely liberating. Same with my neuro... they asked when I wanted to reschedule, and I replied "never." Totally shocked the secretary, but I explained he seemed to show no interest in my case and requests for help or different treatments, so why pay for the visit if its gonna be the same story. I started the orthostatics for Vanderbilts paperwork today. Total disaster. The laying down one was great, but my friend could only get me to stand for 15-30 seconds before I passed out. She started my monitor at 15 seconds standing, it finished at 30 seconds about when I passed out and had to lay back down, and while it was only 160/116, HR 118 (and its been much higher if I was able to stand longer), it was horrible trying to recover from that. The longer I stand, the harder I fall I suppose. I know its hard for me to recover, she's had to pick me up off the ground several times. Ordered a new wedge pillow to try sleeping at an angle, I've ordered a Fitbit to use in monitoring my activites and my sleep patterns, have an appointment with my therapist tomorrow... I'm done for the day. And I'm determined, I'm not gonna feel guilty about this.

Thanks Tobiano... after all thats been going on, I really needed some good news and progress. And pizza. I cannot tell you how bad I want pizza, lol.

After the last month of struggling with symptoms, doctors, meds not working, and basically my body deciding it hated me, todays visit with my general practitioner has left me surprisingly empowered against my dysautonomia, and full of ideas and hope. This was a follow up to my Kings Daughters hospital admit at the beginning of the month that left my body basically about to fail. He had originally tried to get me admitted to his hospital, but when he sent us to the ER, they decided I didn't meet criteria for THEM to admit me, and set me home, hence how KDMC became involved. When he walked into the room today, he could tell an immediate difference, and as he started reading the reports from my tests, he was just floored at how far gone I was. Together, we decided the following: 1.) That the EP that has taken over my case from my now deceased cardio, is no longer really needed. While I do have the tachycardia of POTS, and I've been trying to advocate for treatments from him, he has shown no interest in moving forward with these decisions, even though he is trying to get me to Toledo and Dr. Grubb. I seemingly am having more neuro side effects from this dysautonomia as compared to cardio effects (aside from the tachycardia). So tomorrow, I am calling back to my cardio's office, and requesting my case go back to my former cardiologist before I was turned over for my ablations. I am cool with this, I loved my previous cardio, and I would prefer to keep a cardio in the loop of my case, since they did go through and destroy parts of my heart trying to correct the rhythms. 2.) I meet all sorts of criteria in his looking of my history, for IV therapy at home. He will be coordinating the implantation of either a PICC line or a subclavian port with my cardiologist. I am completely overjoyed at this prospect, because I've been pushing for it for some time, but with the diagnosis of refeeding syndrome from not being able to swallow correctly, if at all, it seems I'm a much better fit for this now. 3.) He is going to try me on something for my insomnia issues. Tried to pick up the script today, but my insurance required a prior authorization from him first, and they just closed as we left, so tomorrow morning I will be picking that up. One more night with no sleep isn't a big deal anymore to me. Besides, the Westminster Dog Show is on tonight, so my evening is kinda planned, lol. 4.) GET RID OF MY NEURO! I have been paired with a new neuro from KDMC in Ashland, and while I have issues traveling that distance (hour and a half each way depending on who's driving me), they are putting plans in motion to get me into Cleveland Clinic, where they can better serve my issues. My current neuro refuses to see the neurologic side of POTS, thus refusing to help me. Last medication they tried to put me on is possibly the medication that started all my heart issue even. And while I may not die from a migraine, I can die from the side effects the migraine gives me, like not being able to hydrate, eat, etc. 5.) Vanderbilt has got to be a go. Plain and simple, after doing tests in his office and reading my history, he is making calls and pushing for me to get there as soon as I can. I have the paperwork filled out to be considered, just need to do the bp and heart rate readings and mail in. I'm kinda nervous about this because its so far away, but if I can get the hydration therapy started, maybe this will make me strong enough to tolerate travel. He agreed that I need to go somewhere I can get more in-depth POTS definition, and seemed to be very high on their program. 6.) Last, but not least, I'm not crazy, lol. He kept reminding me of this. I told him I wasn't trying to be a smart aleck, but just trying to research items and things I can do at home that have the ability to help me. Physical therapy will be part of this, because I am having some weakness in my arms and legs, so I'm in the process of looking for a recumbent bike and/or a rowing machine, a HR monitor to keep an eye on my tachycardia issues while doing activities, as well as coming up with a plan of attack, so to speak. Now, part of this is also gonna require me to listen to my body, and if something isn't right, I have the right and ability to speak up and stop it, and I must follow through with it. My problem is I don't want to say no to anything that might help me, but the SSRI crisis they put me into for the sake of "Maybe this will help, maybe it won't" has completely made me paranoid. So I am going to listen to my body more, and I gotta let my mind be at ease if I can't accomplish _____, whatever blank may be. I don't think I've felt this good about an appointment in AGES. It was kinda nice to feel empowered and excited about my prospects. To not be coined crazy, because looking for a pillow or a bed that will have me sleep at a 35-40 degree angle might help me regulate and not pass out so much in the mornings. To request they poke needles in me to give me fluids, because frankly, I really want to try eating the pizza, and to have room in my stomach for it. Was just a real good visit. Just what I needed right now, a real good visit.

I currently am very sensitive to touch, taking a shower and wearing clothes is excruciating for me even, so I know as much as I want a massage, and I can just imagine how my muscles would feel afterwards, I don't think I'm capable of handling the touching part at the time. I worked for a chiropractor in high school and shortly there after, and I use to think they we're quacks, but after a few adjustments and managing my migraines better through them, I was sold. I wished I could find a good one here, my insurance will pay for 15 visits, as well as for massage therapy. Here's hoping things start going right, and I can use these.

I was always told "it's not fatal, but sometimes the problems can be," by my old doctor. He was really trying to drive home the hydration and salt issue with me when he said that. I know if you're dehydrated or not drinking, you can have problems. I struggle everyday wondering this question, but sometimes just jumping inboard here and reading how others are dealing with their issues, and therapies I can research and request, can help. Just knowing I'm not alone in this helps.

After the last month just being 31 flavors of wrong in my potsy world, I'm throwing caution to the wind, and researching everything and anything. On the wait list for Toledos clinic, the last hospital I was in has started the process of getting me into Cleveland Clinic, and now, it was mentioned to try Vanderbilts clinic in Tennessee. I printed out the paperwork for it, and will start filling that out and getting it ready, but who all here has gone, what was done, and how has this impacted your life? Im looking at the paperwork for the orthostatics and laughed... I can't stand for more than a minute, much less 5. So, yeah. Another clinic, but something's has to give.

I know mine wants to send me to rehab/therapy, but trying to explain to these people that cardiac therapy is more like what I need, is akin to smelling the number 9. I can stand, my ability to walk is not a problem, my body's ability to stay conscious in that action is what's the issue. They kept saying "we want to get you walking" during the eval, I finally stood up, walked five feet, passed out because my body didn't get the blood to the brain on time. I love massages and chiropractors myself too. I think they both help a bit with my headaches, and sometimes they are just a much needed step away from how many pills can they put me on, to "what is out there in nature that can make ____ better?" Like a fresh set of eyes.

I also normally have a notebook with me, as well as one of my Nooks to read. I use the calendar feature on my phone as well as my iPad to keep things together.

There was a day that I was completely off of my midodrine, the day after I got out of the hospital. We were having to get a different prescription because I could not swallow the 10 mg the doctor had originally given me. So while I was waiting for them to get enough of the 5 mg, I basically tried to get through my day without it. Even though it does not seem very effective for me, I am under the assumption with many things that some is better than none. Before I never really thought the midodrine working, but after that horrible day I could really tell.

I've been wondering about a fitbit, if I could utilize that somehow since I'm wheelchair bound. I'm wishing I could go back on weight watchers, I liked how I felt when I ate better, but the need of so much sodium, it almost seems wrong, lol. I just now invested in a blood pressure machine. It's a wrist one, so it's small, and portable for when I'm out and feel some problems coming on. I carry a backback because I always have so much with me to help me tolerate stuff, such as temperature changes, my meds, snacks for emergencies, fluids, etc.

Yeah, weve been having that discussion about access here at the house, and im fairly confident i can handle either. I worked in a hospital and dealt with the ports and PICCs of my friends and families when they've had them. While im not totally enthusiastic about having to go to this route, I just know that it helped me so much, and always does, and with my swallowing issues, this is something at the forefront of helping me. appointment next tuesday to discuss this and get the ball rolling.