Becia

Oh, I'm so glad I found this thread. I just downloaded it too.

My nieces have been taking care of my doxie Gretchen and my cat Wookie since I moved out nearly a year ago, to be the housekeeper to some friends I knew from church. What was supposed to be a starting over time for me, ended up being the diagnosis of my condition, and my friends have been taking care of me ever since. They have two large mix-breed dogs, Emma and Trixie. Trix has definitely been a godsend for me... this dog knows when I feel decent, knows when I feel bad, knows when to alert someone if I'm sick and can't do it myself. She sits on my bed, always touching some part of me, and when I have seizures, she's extremely protective of me. She tore the screens on the back porch trying to get to me one time when the ambulance had to come for me once. Something funny with her is she knows, sometimes before I do apparently, that I shouldn't be standing sometimes. There's been a few times I'll stand in the kitchen to reach something in the spice cabinet, or from the fridge, and she literally jumps up and makes me sit. I try to tell her I'm okay, but she stays super close. Emma is more subdued, as she's a bit older than Trix and has issues getting around with arthritis, but she makes me laugh too. She's chased me around the kitchen one time when I was making sausage balls, vacumming up anything that came out of the bowl, and every time I make them, or heat them up, she's right there begging. She knows I'm a sucker and will sneak her bites of things. I also have fish... Now, it sounds crazy, but I love my fish... The light from the tank is perfect when I'm super triggered, and they are relaxing to me to sit and watch when I feel bad. They were awesome at Christmas time, when my family was being very loud and I was tired, I would sneak to my room and just sit in front of the tank. I can't wait until I can have my Gretchen and Wookie with me in my own place, but until that happens, Emma and Trixie are the bees knees for me.

Well, my doctors appointment went fairly well. Looks like in about a month or so, I should have my port... just gotta make it until then. I've already been in the ER twice this week for hydration, and it looks like someone beats me at home with all the bruises. Long sleeves here I come (in 90 degree weather, yech, I'll just stay home). He thought just staying hydrated enough may be enough to help break my migraine streaks lately, along with keeping tabs on my triggers, making sure i'm getting some nutrition (which with the port, should be easier, so I can focus on swallowing real food rather than drinking everything and anything other than a real good margarita right now), and could possibly lessen my tachycardia a bit more too. Just told to keep my other doctors informed of everything, and keeping my faith. Thanks to everyone for their kind thoughts and recommendations. I'm taking them all to my doctors and going from there. Something has to give at some point.

My cardio doesn't think I can tolerate them, I mentioned that the first time I met him that I need something to control the tachy, and looking back at my history that he had, I'd apparently been in them prior to my ablations with little luck (one made the pvcs worse in two days compared to the other). Which reminds me, I gotta call him tomorrow.... I don't see now having my appointment I'm July will make much difference before he formulates a game plan, and if I do proceed with a mediport for hydration, I want him involved. Anything that has me passing out less, allows me to think halfway straight, lessens the pains in various body systems, and can get me back on my bike, I'm all for.

Yeah, the neuro in hospital at KDMC (Dr. Kimm, such an amazing, ecentric woman) mentioned depakote, but then saw I was on a double dose of Florinef and said "You're already on that, and I'm sure you probably already hate yourself, so no depakote for you" (her exact words, I just about fell out of bed laughing). and my GP and I talked about abdominal migraine as well. Must research more on that. Maxalt never worked for me, and I'm allergic to the ODT type of everything. I used it for maxalt one time, and it gave me a worse headache. On this go around, I've tried Imitrex Statdose (the shot, which worked faster, but never got rid of the headache at all... I could tell the meds were in me, but headache the same), Axert, have a script for Fioricet (which Ive taken in the past with halfway decent results), and I've resorted to taking my emergency Tramadol (what I take if I have joint or other injuries from falls and such, I try to avoid it so I can not have extra seizures). I currently rate my headache about a 7, the fluids from last night helped a bit to boost me, and I've been trying to hydrate better, which if i'm hydrated right, it helps, and if i can control the nausea and vomiting and get actual food in me that wont set off that firework display, it helps too. But I also didn't take all my florinef today... I cut down to .1, and just used my 30mg total of midodrine too. I think I was on Midrin? for breakthroughs last time? Something with an M, that wasn't a triptan I believe. Triptans all seem like they make it worse (and I have been on Maxalt, Imitrex various forms, Relpax, Axert...)

So far, no one has really ruled anything out, other than you have migraines and they are flairing up again (I managed to control them for the longest time via diet, and the very rare pain shot in the ER). I think its the florinef for some of it, since I started taking the double dose, they've gotten so bad. For the rest of it, I'm not sure. I always have some sort of headache, but since they seem to waiver into migraine territory, and set off the nausea and vomiting a lot more (I have some of that just from overloading my stomach with fluids it seems, trying to get my 2-1/2 liters in). I feel like I'm just a walking cundundrum... not sure what's doing what, but I know what I'm feeling, and it really isn't cool. I made myself eat a few bites of dinner tonight (some weird ham casserole that was actually quite good, peas,and cornbread... I am such a southern girl, I love cornbread), and went to a meeting afterwards, and about 15 minutes after eating not a whole lot, I had to excuse myself to go throw up again. It didn't help that I was really hot (the AC wasn't working right), but it hurt. Swallowing wasn't too bad, as I took small bites, and made sure they were "moist" per my occupational therapist who did the swallow study, but coming up, I could feel my throat trying to clamp down after I threw up, so trying to sip some water to get the "flavor" out of the back of my throat was a bit hard. I managed to swallow a zofran, and I use peppermint essential oil in my water sometimes to help cool my stomach, as well as cool off. Been sipping on it, and I'm okay right now, just a little sore. Is anyone else on a preventive for their migraines? I was tried on Topamax a long time ago and shook like crazy with it (I couldn't even hold a pen right, nor hold on to the steering wheel of my car, I just kinda had to wedge my hands in the grips), and they had me on Neurontin for a bit, but I never really saw much reduction. I've kept the same trigger-free diet (mainly allergens like peanuts, artificial sweeteners, eggs) since this flare-up, tried to eliminate other things that I thought might be causing them (like chocolate), but to no avail. I'm terrified to be adding yet another drug to my system, seeing as a few months ago we had to wean a bunch out of it, and I did pretty decently for a bit...but I was also hydrated via IV when we did it, and it eased so much of the pain. Am I putting too much faith in having some regular iv hydration to boost my energy and hydration levels? I know how I feel prior to IVs in the hospital or the ER, and how I feel after, and like I've said time and time again, it feels like I've been rejuvenated. I have energy, I have focus, the ability to push past my normal pre-syncope feeling, and even better, I have the ability to work on my swallowing more. The more I have to drink, the more my throat doesn't like to accept solid foods, like I'm still having to retrain it from the "starvation syndrome" I was diagnosed with back in February. And if I drink all my fluids, yeah, I can get some calories in via ensure and the such, but its still a texture thing: my throat is still only accepting fluids, I get so full on them that my stomach doesn't want solid food after I work to get it down, and it all just goes in reverse. And I'm hoping, with some regular hydration run in at a pace my body can really absorb it (instead of 15 minutes tops for the liter, which hits my kidneys like a waterfall), and maybe some of this stuff can self correct? Like, I can get back on some even keel? I'm really nervous about this, but yet, hopeful. I remember how I felt coming out of the hospital last February, and man, I want that back again. I want that energy, I want good feeling, I want that ability to fold my own laundry, and not pass out. It was nice for a brief moment to have my hands above my head to wash my hair, and not pass out.

Hes the headache specialist of this practice, I believe (kings Daughters in Ashland Ky). He saw me when I first was in the hospital there, and has become my normal neuro since my other one didn't listen to a word I said when I said "I'm allergic to that." over and over again. And I'm four hours from both Toledo and Cleveland. Haven't been seen by Dr Grubb, still on wait list. We all are thinking my tachycardia could be a problem with this, because it's been so fast lately. Add to the fact I'm constantly dehydrated, even a liter makes a huge difference in me (I'm upright today, halfway communicative, been to my therapist appointment, and am going to church dinner later with a friend), which is why we keep hoping for fluids on a more consistent basis, so I'm not overloading my stomach with them, and that my cells have a chance to absorb it better. My main cause of nausea outside of the migraines has been the fact I drink so much, I never want actual food, so when I do eat, its like my system goes in reverse. I am trying to rest. I told them that was what yesterday was for me, a rest day, and they freaked because I hadn't gotten out of bed. Well, had no reason to. I was tired, my stomach wasn't handling food, I was sipping on water, but I know its never enough. Its a wild ride. Like I said, I want that little slow down part for just a little bit. I came home from therapy with the full intent of trying to eat a piece of chicken in a tortilla. I haven't even been able to attempt it, I'm scared of the pain from throwing up making my headache worse. Im making more homemade applesauce, but even I get sick from small bites of that. And I'm supposed to go to church dinner later? I think I will be sticking with water.

So the past month or so has been pretty rough. Came down with bronchitis, found out I was allergic to one of the antibiotics they tried me on, migraine city happening because I couldn't stay hydrated with swallowing issues (and when you feel that bad, you really just don't want to eat), two doctors appointments (new cardiologist and neurologist not so new), "try this new medication, its different than you've taken before", fought with insurance to get medication approved, got put into hospital because two shots of dilaudid/zofran/benedryl wouldn't break the migraine/vomiting streak while I waited for medicine to be approved, get out of hospital, still fighting migraine but kinda keeping food down, get new medicine approved, take all five my insurance will approve for a month within a week, take three injections of imitrex a day apart from each other even though imitrex in the past never worked with me, doctors office never calling me back except to go to ER because I'm back to three days straight of throwing up, ER doesn't treat chronic pain, sends me home, tells me call doctor, I call doctor, he tells me go back to ER after I give meds from first visit a chance to work....*TAKES DEEP BREATH* lay around all day unable to eat/drink, trying to take pain meds and phenergen, just to be roused at 10:40pm by your medical power of attorney telling you "Your father is on his way, you're going back." At 4am this morning I got back home from the ER, where they tried two injections of stadol/zofran/benadryl this time, told me "You should be feeling relief, you're not dehydrated, but we gave you a liter of fluids anyways, here's a script for Fioricet, go see your normal doctor, your neurologist really needs to get these under control better, out the door you go." This would be the second trip in a three days I've had to drive an hour away (to the hospital my neuro is at) for care, just to be shown the door with a level 10 migraine after a few hours. And everyone keeps telling me "You've gotta relax and take it easy, it will help this," well, I did my best, but trying to do this with my father in the room, there's a reason I chose to go with friends to the ER. Dad keeps talking to me when I just wanted to put on some Josh Groban and listen to some music to block out the ruckus outside the door while the meds tried to do their job. Nope. We had to keep talking about the price of gasoline these days, how they couldn't have made the road straight from point a to point b, and "will those people out there ever turn those alarms off?" At one point I was in tears with him, and I had to explain over and over "I cannot control this, please stop asking me to talk." And trying to explain dehydration in a POTSie to a doctor is like introducing a chicken to a mule... it just doesn't work. Yes, my blood chemistry is halfway normal (stuff like electrolytes are on the low side), but my urine chemistry shows that my body is shutting down (I can't remember the name of the hormone/chemical excreted, but when you are dehydrated, it shows up), does this not mean anything? For a person who is supposed to drink minimum 2-1/2 liters of water A DAY, and hasn't been able to get more than 20 ounces in without throwing it back up... how am I not dehydrated to you? My headache is currently a 8-9. I am dizzy, my heart is all a flutter (and not the good "I'm in love" flutter), I haven't been able to eat in about 2 days, and I'm wearing long sleeves because I have bruises up and down my arm from all the blown veins after last night and Sunday (but noooo, you're not dehydrated.. I used to be a phlebotomists dream poke). With as much zofran I'm on, I admit I am a smidge hungry, but I'm terrified of eating because I cannot do throwing it up. That hurts the throat and swallow effect even more. And I really really REALLY hope that I can get my port/PICC line approved (they are going back and forth on it because of infection rates being scary), because there's no where else to poke. And I can't eat and drink at the same time. I'm 32, and know all the flavors of Ensure.... the chocolate and I are in a relationship But what I really want right now? Pancakes. Hashbrowns. Fajitas. If we could have those at the same meal, and my stomach be okay, that'd be awesome. Oo, and I want a margarita too! I know POTS is a rollercoaster, but can I please get to that nice little portion of the ride where we're coasting on flat ground? The extremes are not my cup of tea.

I take 10mg three times a day and still struggle. It helps me stay upright when I go out. Sometimes if I am taking it easy, I will back down to 5mg three times aday, but thats mainly if I'm staying home and not getting up much.

I agree with Katybug, Ive done the same thing. And my last TTT was after months of medication and therapy to just be able to sit upright for a couple hours, albeit symptomatic, but halfway conscious, so the results of that test still confirmed POTS, but it also showed the stuff I deal with everyday (out of control HR, BP having a mind of its own, physical issues, pain, etc). I'm sorry she's having a hard time with this, but sometimes you gotta do it to get answers you need and deserve.

LOL, love it! A friend of mine suggested one of those weird tilt tables you lay on and it flips you upside down to help get blood to the brain, and I had to remind him "exactly how do you think I will feel coming back up from that, when I can't even get up from laying on the ground without passing out?" For a very smart man (scary smart, vp of a bank smart), it took him a moment to comprehend this, lol.

I had out of control PVC's before my diagnosis, to the point when they were listening to my heart, they could hear them trying to change the rhythm, yet doctors were like "people live with them all the time, they are nothing". I had two ablations to correct the, and then about three weeks after I was diagnosed with POTS. According to my EKG's, I don't have the PVC's anymore, but my bp cuff still tells me sometimes that I have an abnormal rhythm going, and I feel everything my heart does. Everytime it beats hard, every time i have runs of tachy... everything. It's most disconcerting.

I have that, but I'm on so many meds that I can't be in the sunlight. I'm so crazily pale, lol... I love the outside, it doesn't love me.

Yes, a lot. But I've also been dealing with a lot of nausea and vomiting lately, so I think my entire mouth is just off.

I have knee highs at the moment because I didn't have $65 to shell out for the waist highs my doctor wants me to try. Now that I have insurance, I might have a chance of having that covered now, just haven't been able to get a ride by the shop to pick them up. As for helping, I wear them because its better than nothing, if that makes sense, but I'm not totally convinced. I still pass out, I still have pooling, and I can tell my feet and such are still very swollen by the end of a day that my feet are on the ground a lot. I'm hoping to get some stronger ones in the future, and some toeless ones, because I love to wear my flip flops out of ease, and the only ones I have right now are closed toed. I did get some toeless from the hospital when I was in there last, but they are not very high compression.

I had a horrible time on Paxil and celexa, both Ssri. It made me sicker, to the point i ended up in the hospital because of them. As for brain fog, I had it during those times, and still do. The last hospital stay they wanted me to try Zoloft, but I decided against it as it's Ssri, and I'm honestly scared of getting iller. I can't take what I've got going, I didn't want to make it worse.

LOL, I'm wishing I had kept a couple spoons really. I just now began to get out of bed, and ended up loving up on the wall for a few minutes. Sometimes the 3 positives help, and sometimes, they truthfully, hurt. I may have a good week and when I read back in my journal all my positives so I can take note of them when I go see my therapist, it makes me so mad, if I'm not still on "par" with that week. My body changes each day, hour, minute it seems, and when I'm reading "I worked out today, I increased my stand time, I ate a hamburger" in a moment when I'm lucky I didn't break something falling on my way to the bathroom, or when I just had a set of seizures because my body isn't compensating for sitting up even, or when I have an IV in my arm at the moment, because I'm throwing up water... they hurt. People say they are goals to aim better for, to know your body can do this, or you can do whatever if you put your mind to it, but it still doesnt change the fact I don't handle change well, and if I went from doing really good to really bad so fast, I beat myself up for it. Like, what did I do to make that good stuff end? Its not me, its POTS. I have POTS, it doesn't have me is a saying I have, but sometimes, it has me. It has me really good. I like the smile a day thing though. My Dad always used to say to me before I headed to school or work "Smile, it makes them wonder what you're up to."

Dont have an answer for you, but just wanted to say "Congratulations!"

A friend of mine challenged me about a month ago to find 3 Positives for each day, and to write them down, so I have them to see everyday. No matter how bad my day can be, with symptoms, emotions, business, anything, I am to find 3 positives. Oh my goodness, it can be so hard... but I managed to do it. Today's 3 Positives are: 1. I woke up. Took me a bit to get going, and I wished I could have gotten going sooner, but I managed to get up and get dressed safely. Wished I could have stayed in bed, but... 2. I went to church, and had a decent time. I interpreted for a deaf man for the service, and while it was so hard physically, I managed it. Passed out for a few minutes after getting to the car from it all, but I feel accomplished if I can at least try to help communicate. I love signing, it is very much part of me. I also got about a 20 minute nap to "recharge" in the car while we were heading out to lunch. 3. I threw guiso into the crock pot before we left for church (guiso is an Argentinian stew that's salty, spicy and delish), and now have a good meal for the rest of the week with minimal work. All I have to do is roll out some tortillas if I want, and boom, dinner. I can save my energy I would use to cook meals to shower now, or if I want, make dessert. I want banana pudding for some reason, or banana cake. Something banana. My 3 positives can be something great, like good results from doctors, or going some places, but lately they've been harder to find, but they're there. A few days ago, when I got out of the hospital, literally, my 3 positives were "I ate two bites of banana and kept them down. My headache is only a 7. I made it 4 steps to the bathroom." I'm obsessed with bananas, can you tell, lol? I guess being on the BRAT diet lately because of my stomach and swallowing, it's taking a toll. I once told my therapist I guess I'm stronger than I think, because everyone I've talked to has been like "I don't see how you live like that, with the pain, the symptoms, the triggers. I would have gone crazy by now." Well, I have gone crazy, I just hide it better than my family, lol. Keep your chin up Blue, and I'm praying for ya. I know how you feel. I'm honestly at a pretty low valley in my emotional health right now, and its not easy. *HUGS*

Lol yep. Sorry I haven't been active, been in the hospital dealing with potsy stuff, lol. Hope to get back into the flow of playing in the next couple days,

I'm currently in the hospital for a migraine I couldn't get under control, and the effect it was taking on everything (couldn't hydrate, couldn't eat, extreme sensitivity). There are a few food triggers that I avoid, but it still end up with them, gluten free or not. I'm just wishing I could avoid them from getting so bad to this point. I have a three day window of fighting them, after three days or when I start seizing from them, it's off to the hospital for me. Sometimes I stay, sometimes it's fluids, a shot of demoral and on my way. Either way, it's not a way to live.

Lol, no worries about being tmi with me, I know how you feel. I'm currently in the hospital because of vomiting at the moment, and it's set off one heck of a bad headache in me. I've been on a full liquid diet, and they gave me some applesauce and pudding to try and eat each meal, and I am throwing that up like crazy.

I wish I had this experience at cc. Don't get me wrong, it was oksy, but my experience was the same as I had at any other clinic when it came down to it, and my experience with the doctor assigned to my case wasn't that great. I guess it depends on who you get there for a doctor.

Wow... I live off of potatoes sometimes... They are the perfect bland thing for me when sick. I'm not sure I'm could do this, but like said before, if it doesn't help, you can stop it.

I can pass out even when laying down, which has my doctors team puzzled. I literally think at the moment, my bp is okay, it's my hr that is trying to run the show, and when my body gets to the point it can't handle it, it makes me go out as a way to "reboot" itself. I stop breathing even, and about 30 seconds later, depending how how fast I was going prior to this, I start coming too, and I feel horrible. Takes a few hours to feel decent again, and I tend to try and get going again too soon, so I'm harder on my body by being an idiot. Same with just changing positions (laying to sitting, etc). Gotta remind myself to take it slow, which is hard sometimes when you've drank so much, that the bathroom is the goal, lol. I spend a lot of time crawling because of this, so I'm close to the ground if I am going to go out, I lessen the chance of hurting myself.