Becia

Oh, I am totally doing this now. I journal as it is, but I've never written specifically to my pots or my body, but I can see it being really therapeutic to get it out of me.

Lol, no offense taken, it's all good. My experience has been kinda good and bad with the Tramadol.... Sometimes it works, sometimes it doesn't. Kinda depends on how bad I'm hurting, and if I've taken it recently for any other issues (like the numerous sprains and falls I've had as of late). If I go through a period of having taken it a lot, it doesn't do much good, I guess because I have a tolerance built at that point, but if I haven't taken it for a bit, it does seem a bit more effective. It's definitely a different type of feeling compared to an opioid, because you don't get that "high" feeling, so it doesn't trigger me and make my pots worse, which is a blessing.

Hope that helps.

Thank you all. I have a medical background, and literally it was overload yesterday, and when I finally got home, I just crashed and burned, cried on the couch while trying to eat some watermelon and explain everything to my household, and it was just bad bad bad.

You're right, I am determined to fight this. I've never been the weak one of the family, I'm the girl who had knee surgery and drug herself t work two days after because she needed the money for the family to survive. Looking back, probably that attitude of I have to go rather than heal, might have been a bit detrimental, lol. Maybe this is time for my body to heal. Maybe this is what The Lord had to do to make me stop, reevaluate my situation, and put me on a different path, I don't know, but wow... It's been a wild roller coaster.

Hope, from what I got from the doctors I met yesterday, they are believing that my two heart ablations are what set this off, not a virus. I asked my cardiologist if he thought I could have had is for a while at a lesser degree a couple weeks ago, and he said I probably had it for a little over a year at a different variant, but something has set it off, and boom here we are. OSU is pointing all signs at the heart ablations starting back in May, and I tend to feel that way myself, because yeah, I had some spells, it wasn't until about three weeks after the first one, I kept asking is this how my heartbeat is supposed to feel. And it's been downhill since then.

We are looking into getting a personal heart monitor to help track some of this stuff at home, and I'm thinking the med situation had it up, and the fact I had so many triggers around me as we'll, because I'm sensitive to touch, light, sound, things like that right now, especially while rehabbing an injury (sprained shoulder, which got way overused in the hospital trying to prop me up in bed so I could breathe). And they want me to better track my bp as well, so I had the info of when I have a syncope episode, which is so frequent, and how it normally runs, so I can take that to Toledo when I get the chance to get in.

All I know is right now, I have to adjust to yet a new "normal". It's not easy for me to change my mindset, but out of fear for those around me, and the fact I still feel the old Becia going "I have to be strong and do this", I have to do what I have to do. It's gonna be a long road. I'm just wishing I understood better what all was going on, because even with my medical background, I'm way in over my head.

I'm gonna do my best, it's all I can do. Like I have been reminded, I'm not broke right now, I'm just bend, but I have supports to hold me.

Migraine Molly is what they call me in my family, I get them horribly. For my basic headaches, the ones without the auras and stomach issues, Tylenol, Benadryl and cold backs are my friend. They take a while, but they do work, and I space the pills out and take one at a time ever couple hours usually (I like t start off with small dosages). And hydration is key too, sometimes I may have a small amount of caffeine to help them work better. I'm allergic to NSAIDs and anti inflammatories, so stuck with Tylenol.

Migraines can usually end up with me using Benadryl, currently my Tramadol script, and cold cloths, and for my stomach, phenrgan and peppermint essential oil and water. Those are the worst, and I'm honestly surprised with all going on around me, I haven't had many more of them. I try to avoid the er unless I'm actively vomiting and cannot stop, there it's usually dilaudid and zofran they give me, and it works pretty good, but then I get residuals which I treat as basic headaches.

I just want to give you a ((((((((HUG))))))) . I don't have advice except its been bad all around for me too, but sometimes, you just need a hug and someone to tell you it's okay, we understand.

Also forgot to add, my friend let me know that after they started the fluids in the er, my hr went up and has stayed up... So... Maybe meds were wearing off?

I'm so sorry, but this is all new, foreign, weird, and confusing to me. All I know right now is I'm wheelchair bound, a fall hazard, and really tired.

And this could be my brain fog, but bear with me.

The past two weeks have been pure **** on me. My syncope episodes were hitting of 20 a day, with many falls and injuries (thank god nothing major, just sprains and twists, but enough is enough there), and after nearly giving myself a concussion on Saturday with a fall they couldn't get me to come out of, a friend drove me to Ohio State University's hospital yesterday to be checked out for a second opinion. When I got here, I was due for a second dose of my midodrine, which I took in the waiting room, and told the staff, which were cool with it.

After all the er testing, I was sent to the observation wing, and it was too late to get my very last dose in, because I take it no later than 6pm, and it was 8 when they moved me. When I was in the er, my heart rate was 50-60, no higher than 70 or so while laying, but sitting me up shot it all to heck. And my blood pressure was really high, like 150's for the top number. That part has never been that low on me, in fact, I've had bps as high as 170's for the top number. All last night and today, they have been relatively high,or high flat out, like recently,it was 132/86.

Now, they have withheld all my normal meds, my midodrine and florinef all day, to observe what happens when sitting, when laying, and standing. Heart rate has been sky high, like sitting if I am rushed, 158 earlier. Standing it hit 171 and was trying to climb,but I passed out and it dropped down to the 90's it had been running through the night, unless I had a trigger happen, like when they drew blood, knocked on the door (noises really bother me, I'm also very sensitive to touch, but if the jerk had just used my ac vein like I requested, not the little one on my knuckle, we might have avoided that out). Being completely unmediated for these past going on 29 hours has been literally horrible, and really has me out of sorts.

I've read as much as I can about my meds, but I guess I'm missing it or not understanding it. I am under the impression that florinef and midodrine are to help increase blood pressure, yes? What the heck would be increasing my heart rate so much? Is this the POTS? Or is one of those two drugs help keep that lower? Sometimes even laying down I feel my heart racing like greyhounds at the track, which is really unnerving, and I think, one of the reasons I don't sleep well, because before my ablations, I felt every single PVC and misbeat, and it bothered me a lot.

They are sending me home right now, and I am being referred to Toledo in a possible autonomic system failure a a big possibility,but they are increasing my florinef for the time being to see if I can possibly pull out of this period somehow. I'm really freaked out, and I know panic is not a good thing for a Potsie, but I'm really tryingt figure out how to get back on an even keel again. I still have passed out around14 times today, with Iv therapy helping buff me up with my fluid and sodium intake, which they say is right on par (except I always feel like all I do is drink, and when it's times eat, I don't want to because I've filled myself up on fluids), and they gave me some potassium this morning too.

Am I confused? Completely possible. I am really trying not freak out, but its not easy. At least I'm getting to go home to a trigger free room, my comfortable pjs instead of a rough gown and bedpan waiting (they refuse to stand me up for any reason, even though I am normally good for a few minutes if I can go at my pace, and not rush), and honestly, my stash of m&ms, because this chick needs comfort food, and chocolate seems on par, lol.

I've only been on it a month, but I can only tell a difference for 1-1/2 to 2 hours after I take it per dose. The rest of the time you can't tell a difference. As for help, haven't found that yet, but they are still fiddling with my med schedule and such now.

Yeah, I get the goosebumps too. And the weird feeling of them on my head. Doesn't itch, but it makes it feel like my hair is sticking straight up, lol. Kinda freaky.

Midodrine only works for as bout 1-1/2 hours for me though. I try to do what I can in those spans, three times a day.

Follow up yesterday ended up with me and a wheelchair, so that will be arriving today. I'm trying to be okay with it, as I'm still resistant and learning how to accept help, but it was explained as "if you are out and about, you don't have to worry about hurting others around you, you just have to worry about yourself", and that put me at ease. i am so afraid of hurting other people, even though i know the people who are around me the most, can handle me and not hurt me further, but its still a thought in the back of my mind. It also stands the chance to get me out of the house more, as I still am not allowed to drive for another month at least.

I am alternating the Tramadol and Tylenol right now, but he did say if the pains were bad,or if I did injure myself again, Tramadol will be the thing for me to use for the major issues.

I didn't get to approach the eds questions with him, as I was passing out too much to really finish, and I hadn't given those questions to my friend who went with me. I think I might have a better chance approaching that with a new general doctor I am looking into seeing. Right now I'm taking everything extremely slow and easy, and lots of prayer that I don't fall.

Yeah, I sweat like crazy when I was working, so I use clinical strength secret for deodorant. I guess I'm lucky on the skin issue, because I am a little sensitive to some lotions, but there are a couple I can use. My favorite is Burt's bees milk and almond lotion. It's kinda runny, but it absorbs quickly, and it honestly smells like sunshine to me, so it makes me happy wearing it. I am currently using jergans soothing aloe lotion. For body wash, aveno is a fave,but kinda expensive, so I've been using st Ives oatmeal body wash, and haven't had any problems with it yet, and it leaves me pretty soft and smelling pretty.

I too am a layer person, because I alternate hot and cold so much. Normally two shirts, a tank that doubles as a sports top that wicks sweat away, and a t shirt, and I usually have a hoodie or light jacket around somewhere, depending on where I'm at and how the temp is.

It's all hard to hear Katie, its okay. My friends and family know I'm extremely stubborn, and sometimes I need to fall flat on my face before I ask for help. We have talked abut wheelchairs and such, and I do use them when I'm out and they are available, as well as a shower chair in th bathroom. I see my doctor today for a follow up since I've started the fludro cortisone and will be discussing this further with him. I don't have much hope though, as he kept telling the people I live with I was fine when I was having seizures from a other medication. We shall see, I'm taking one into the office with me, and she's got lots of questions for him if I cannot ask.

I don't know much of EDS... I have joints and such that hyper extend, but I always thought I was just flexible from yoga and such. Guess I need to possibly read up on that as well.

Another doctor is certainly going to be in the works. I understand around my parts I'm gonna have I education POTS to whomever I see, but if they are not willing to learn themselves, it's pointless to give them my hard earned money. I wasted my last $75 on that doctor, just to be sent away. I still cannot move my shoulder without immense pain, and that alone sets off more problems, I cannot handle.

The search is indeed on, for a new gp. After we got that response from her, we are all looking for new docs.

My family calls me the accident prone Potsie, because I pass out so often, and it never fails, Becia ends up with a "boo-boo", per the words of my 6year old niece. I just recovered from a sprained hip, and last Sunday, ended up with a bad out moment (those where I cannot move afterwards), and sprained my shoulder.

With my hip, we were afraid that I had broken it or dislocated it, so I was transported via ambulance to the hospital. With my shoulder, we were not sure what the heck it was going on, except for lots of pain, and I could not move it, but I couldn't move any of my limbs when I come out of those types of attacks. The next day, we all looked at it and decided, lets go to my normal doc (not the one who diagnosed with pots), and have here check it out.

We all know that narcotics can make POTS symptoms worse, but in cases like this, where I'm obviously screaming in pain, passing out because of the pain, and the pain is setting off other pots symptoms (like neuropathy, which I struggle with anyways, but extra pain makes me extra sensitive), what can we take? I was given Tramadol for my hip, and what I requested from my doctor for the shoulder, because I couldn't tell it was making the symptoms worse, I still pass out an alarming amount every day, and still live with the lightheaded see and dizzy.

I'm allergic to anti inflammatories, so I've basically been stuck with Tylenol in large doses for everything, because my general doctor doesn't want to treat me anymore because of the pots. I really think its because she doesn't know much about the syndrome, but it also sounds to me she just doesn't want to listen and learn. I had one of my roommates in the room with me because you touch my shoulder, I scream, and end up out, and she was apparently having to educate her as to why I was passed out. The doctor just couldn't understand why and apparently, never did. When she called me back to review the x rays, she told me I really just need to stick with my cardiologist for things like this. Yeah, the heart dude is gonna fix the shoulder, yeah, right on that.

The Tramadol is helping with someof the pain, I can't tell the pots is worse because of it, because like I said, before, I am really having an issue getting mine regulated. I see my cardio dude tomorrow for a two week follow-up, and am nervous to sees what he says, because I know I don't trust myself in this situation.

What can a Potsie do?

I normally sit and scoot stairs at the house, usually only when I do laundry. O shower with a shower chair positioned under the showerhead and with a handheld. Try to do all of this as fast as I can, because I still pass out way easy.

I see my cardiologist Friday, and I'm taking the people I live with, in with me, because my brain is so fried, I can't keep things straight. I will look into Cleveland clinic too, hadn't thought of them actually. My prob is just finances right now... I can't hardly afford what I'm going thorough now, more docs makes me nervous, but no answers and nights like lat night make it all worse.

I get that feeling using a motor cart at the store. Bittersweet. At least I'm out, but I still syncope while sitting.

No advice, but enjoy comic con!! Do what you can, rest when you must, and smile.

And when I started my meds, they never told me to not do that... Everything I've discovered that the stuff does to me, I ended up reading about it after the fact when we all sat down and discussed what was going on, and questioned if it was normal or not. Once again, I reacted badly to celexa, and the doc kept saying i was fine, except it looked liked was seizing to my roommates, and a side effect was tremor.

Yeah, I do my hardest to not lay down, I suffer big time if I do, but man, I've got to get some rest, and that seems to be the time my body forces me to. It's either that or pass out more. I do try to rest sitting up as much as possible, just sometimes end up sliding over on the bed.

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

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

I'm in Southeastern Ohio, about four hours from Toledo, 2 hours from Columbus, and 45 minutes from West Virginia, lol. As a person who's formerly from TX, it sounds weird to say give me a couple hours and I can be anywhere.

I just want someone who might have some more answers other than what I've been getting. I think I'm having some reactions to these medications, and that doesn't help diddly squat in trying to get better with anything.

Get one? Sounds like a dumb question, but yeah. For those who've been fortunate enough to see some of the specialists in this field, and even for those who were fed up with the treatment you were getting and desired to expand our dysautonmia horizons... How did you approach the subject?

My doctor is a great guy... And maybe this is my impatience with POTS talking, but I'm frustrated with everything going on. I'm having a very rough time with the medications he's trying me on, and when I prompt the question of "aren't these bad side effects?", he responds that he's never seen this effect before, I'm fine, and I just need to wait. Well... Okay. I've waited. I know my body, and something ain't right here. Even my roommates will tell you, something is up. That's how I ended up in the er the first time, they literally thought I was dying because I was seizing and more unconscious than conscious.

He's upped my midodrine, and added fludro, I'm pounding fluids and electrolyte solutions and salt like a frat kid at a kegger. And I know a lot of this is waiting, I get that... But it doesn't explain my shaking still. It doesn't help I'm still passing out, further injuring myself. I sit up, stand up, lay down, lightheaded if not out. My heart has decided to start throwing all sorts of stuff at me lately, and I don't do we'll with feeling every beat it decides to misfire.

I just want to know if a different doctor might have a different look on this, or a different thought of treatment. But I'm not sure how to approach this question with him. As it was, it wasn't even him that diagnosed me, it was his collegue that did, but then turned me back over to him because he's the EP cardiologist of the practice.

How did you get a referral? Because my first instinct is to go "dude, you have no clue", but I know that isn't right.

So... How did you do it?

No tips, just needing some help myself sleeping... I get maybe two to three hours a night. I try to nap in the day if I can, but the midodrine makes me feel horrible if I do manage to lay down. I've also had to rest sitting up lately because my heart is palpitating like crazy, and I hate it, it shakes me very hard physically.

My doc said take Benadryl. Yeah, that ain't working yet.

I'm jealous of sleep... I get maybe three hours a night, and that makes my pots worse but I lit ally have had insomnia for months now. I m like you AKGIRL, I can't work, but man I want to! I've tried to keep myself on the same schedule I had before I had to quit, which was waking up and getting going around 5:45, but its so hard anyways, so I quit. I was up before then anyways, so what's the point.

Trying to get myself going right now. I've gotten up twice... Bathroom runs, and managed to get some clothes on, but now I'm laying back in bed. Both times I got up, ended up with me on the ground. I am going as slow as I can, trying to take as much time as I can. Just so frustrating! But I see some ideas in the previous postings that I think I might try... Like taking my meds later, turning off the sound in my alarm, etc.