Another Night In The Er.... I Am So Sick Of This.

[azmusiclover]

Well there is 5 hours of my life I won't get back. Just got home from the ER. 10:30pm-Took my night meds of my pepcid and my

hydroxyzine, which I've been on as needed since 2010, but taking it rather faithfully over the last 3-6 months. Tonight, I take

50mg instead of 25. I was feeling a little full in my lungs from dust getting stirred up the other day and it's been really humid and

we had a storm come in tonight. Typically, not a problem. I've taken 50 before, been fine.

1:30am, I had been asleep maybe a half hour, wake up with a start. Oh no, it's happening. If I huddle under the covers maybe

it will go away? I could just be cold from the fan. Nope, there's the shivering and the shaking. Yup I gotta go pee. Pee, wake the

husband, think maybe epi pen, but no D and I am breathing ok, so we head off to the ER. Get there and my heart rate is 140,

BP is high for me 133/60 and I am like a sunburn red on my upper arms, fine red blotchy on my lower arms and my back feels

like it is on FIRE. I try not to itch, but I can't help it. Hives all over my back. Pump me full of steroids, and benadryl and fluids,

watch my heart rate bounce around and more shaking from the benadryl (I always have that happen with IV benadryl!) Things

calmed down, felt a bit better, they released me at 5:15 and I am home and winding down before sleeping all day. My BP had

returned to it's normal 93/55.

So, now I am playing the "what caused this one" game. Could be dinner, but I ate at 5:30 so that seems "late" to me. Could be

my vitamin water, but I drink that a fair amount. Could be some cheese. Definitely could be stress, we are buying a house right

now and we were trying to figure out the schedule. But, I deal with so much stress with the kids autism that I barely notice it.

I took my hydroxyzine with pudding. I am wondering if it is the culprit or the pepcid or the pudding. Anyone ever reacted to the

meds that were helping them and then your body rejected it? I don't know what to do without it. It is my life saver. I'm scared to

take it again.

Counting the days to the Monday appointment. Even if he doesn't have an answer it'll be a starting place. I'm so glad the ER

doctor was an understanding female.....

Now, I am home, wired from the benadryl, and wound up from the night, but exhaustion is starting to hit. I have had numerous

dizzy spells today and it's so humid here... I am sure all of that isn't helping. But, we close on the house in 10 days and I have

to get the packing done. I have help, but it's a huge house. Always hits at the very worst time ever.

Thanks for reading and listening to me whine. I miss my old life.

Becca

[Elenapap11]

All you describe are sooo familiar to me.I spend so many nights at the ER and then so many days trying to figure out why it happened.I even kept a notebook trying to see patterns that may lead to the solution.And so much cortizone and steroids and iv fluids...I can tell you Becca you have every right to whine.So feel free to do it.After all we have so many restrictions with these odd health issues that the last thing we need is to repress our frustration.

I hope you are feeling better today.

[azmusiclover]

It's nice to know that I am not alone. Thanks for commiserating. I've slept about 3 hours, time for a benadryl dose and then back to bed for me. My heart jumping woke me up so I know it's still "Active" whatever is going on. At least my hives are coming down on my arms and my back. I am so sorry you've had lots of those nights too. Thing that pisses me off is the last two, this month, I have no idea what they are too. And completely different reactions. I'm kind of glad they are working me up for the mast cell stuff, so I could tell them there, hey this is what we are working on, since they've seen me 8 times since February for reactions. They were quite nice when I mentioned Mayo Clinic and immunology. Funny how that works. If I don't say it, I'm treated like I'm crazy and stressed out. Which I am getting to very quickly if I keep having these kinds of reactions!!!!!

Thanks for sharing with me.

[E Soskis]

Wow! I feel your pain. I spent hours in the ER yesterday getting IV fluids, IV antibiotics, and lots of lab work and cultures done - all because I dare run a fever when I have a pacemaker and several central lines.....so frustrating. I've learned to not run to the MD every time I spike a "little" fever because I end up in the ER. However, when fever is more than I can manage and I'm in a flare-up of the dysautonomia, I have nowhere else to turn. It took years for the staff in the ER (including docs) to finally realize I'm not a crazy person when I check-in. It seems I have to educate, educate, educate everyone about dysautonomia and AAG each time I am in the ER or an in-patient at the hospital. I know dysautonomia is "rare" but, it is becoming much more common and when I'm really sick, it is hard to teach, instruct, and monitor what is going on. Do you have an advocate that remains with you when you go to the hospital? - I don't have anyone and I've been able to prevent some serious errors before they actually were performed. What happens to us when we are so sick we cannot maintain that sort of vigil? It scares me to think about it!

[azmusiclover]

My husband has taken to questioning everything they are giving me, doing, checking. Once the IV is in, meds given, I'm stable, he goes out to the car and sleeps until I call him to either come back in if they do something else, or come collect me at the door. I'm going to be typing up a list of medical history, med reactions, medications, allergies, and keeping it in my purse. I am considering getting a medic alert bracelet too. I don't even say dysautonomia anymore. Most of the staff looks at me like I'm nuts. I say orthostatic hypotension, and then I'll list my typical symptoms. Seems to help the confusion. I agree with you though, it's scary when you are so out of it, but you need to communicate or make sure they don't give you something wrong.