Quick Update...

[Becia]

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.

[gjensen]

See if you can get your cardio to get a swallowing test ordered. Some how. You can get that out of the way before March. It could possibly show where the problem is. I do not know why no one has ordered that for you.

[Katybug]

Hoping you find an ER doc with some wisdom and compassion today, Becia!

[TCP]

Take care and I wish you well

[YolaInBlue]

I hope today's ER visit will go much better for you.

Do you at least have a place you can go to get IV fluids when you are dehydrated? I found urgent care where I can get saline IV, got a prescription from my dysautonomia doctor.

Wishing you well.

[Becia]

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.

[gjensen]

Good luck, and I hope they treat you well.

[YolaInBlue]

It's good to hear you've been admitted. What I found out during my hospital stays since all this started, sometimes you have to complain a lot and insist to get things done. Good luck to you.

[Becia]

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.

[BeforeTheMorning]

Hi Becia,

I'm so glad you seem to finally have found a hospital where they are really trying to help you. I hope you manage to get your symptoms sorted out and under control soon.

Best Wishes,

Lyla

[JuneFlower]

Wow, so sorry . That blood pressure is really high. I hope they can figure out why and treat it quickly. You probably already have been tested but is it hyperadrenergic POTS? I've heard that cause high blood pressure. Also it might be more than one thing going on. Make sure they check your kidney function. They have a lot to do with blood pressure. And good luck.

June

[Becia]

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.

[SarahA33]

Becia,

I'm so sorry to hear of all of your struggles, but it seems you are on the right track. atleast you have been able to find a medical facility that will work with you and listen to your concerns and struggles.

I'm so extremely happy to hear you are improving. ...

I am wishing the best for you and know that you have all of us, and especially someone in ny!
Best,
Sarah

[Becia]

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.

[IceLizard]

Hi Becia. I feel glad for you that you finally found a place that will take care of you. I was lucky enough to have excellent care in the hospital near my home, and it was still a very trying experience. My POTS is kind of odd: I will have drops blood pressure causing me to pass out and have seizure-like activity, but afterwards my bp can be high. It is almost as if my body over-corrects for the drops. Sometimes the doctors will miss the sudden drops in BP and only register the high or normal bp which confuses everyone because I do pass out. I asked about continuous monitoring of bp, but they said they would have to insert an arterial line. I hope you continue to do better. Thanks for sharing your story with us.

[Becia]

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.

[IceLizard]

Interesting. I'll describe how it was when I was stuck at the hospital. I would have these episodes, triggered when trying to stand or by being moved or by sitting, or sometimes out of the blue while I was laying down, where I would feel like I was passing out or close to it and my muscles would start to tense and shake. It would start in my feet and lower legs and my hands would be shaky if I tried to use them. If it progressed my entire body would become extremely tense and tears would be forced from my eyes. I would convulse uncontrollably with limbs flopping and back arched and be unable to stop it or respond, although I am aware it is happening. During this time I would be out of breath and my heart rate would rise up to about 200 bpm. It would usually resolve itself in a few minutes, but when it went on longer they put me on meds like Ativan or Dilaudid. These meds reduced the shaking just a little, but I would still have the attacks. My bp is always higher after these attacks. Is this what is happening to you? I hope they find out how to treat you. If they do, maybe you can recommend a doctor to me, because I'd like to know more about what is going on, too. PS You're not crazy, I completely believe you and I hope you can make progress with doctors who do, too.

[Becia]

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.

[looneymom]

I am so happy for you Becia. It sounds like you have found an advocate for youself. I have heard many good things about Cleveland Clinic and Dr. Grubbs. Wishing you a restful night and pleasent dreams.

Rachel