Er visit

[Zoofemme]

Yes, for the fist time in may years I spent the best part of afternoon/evening in the emergency room as a result of my seizures I didn't hurt myself, tg, I just had too many and the doctor told my husband to take me there.

I wish I knew what set the firestorm off ... I remember talking to our tenent and sitting down in the garage then I was on the floor of the garage. I managed to get into the house and I'm pretty sure I was going to call the doctor cause that is what I'm suppose to do but then I'm staring up at the ceiling of the kitchen and it all went downhill from there. I don't know how many times I went down, but I did manage to get a hold of my husband. I couldn't talk so trying to call anyone was a moot point. He left work and called my mom and sent her over to sit with me utnil he could get here and call my neurologist. I of course refused to go to the ER at first, lol (we need a mule smilie ) My mom said I had several little seizures whle we were waiting for him While we were in the waiting room at the hospital I generalized again...guess everyone got a good show

I was worn out...my head was punding, every muscle in my body felt like it had been pulled, twisted and beat with a hammer, I can't speak coherently, I'm scared, angry and frustrated all at the same time and I get a nurse with over 30 yrs experience who doesn't have a clue about E I was ready to strangle her. My husband shaking his head at me. He hands me my little notebook so I can right down the type of seizures I have. She didn't have a clue what I was talking about She asked if they was grand mal and we said yes...then she asked if I was INCONTINENT I spit/stuttered out that not everyone was and she said yes they were. SHe made a point of telling the doctor that I wasn't...I made a point of telling the doctor that I never was AND that I rarely bite or chew my tonge.

At any rate, the doctor new what I was talking about and he called my neurologist. Turned out he and she went to med school together. THey did a bunch of blood tests, checked my levels and decided to up my topomax this time. Gave me the option of staying for observation (NOT) or going home (YES) with the stipulation that if I seized again I was to go to my neurologist's ER for admittance (status E). I was suprised about the topomax. SHe had told me if I seized again she was going to take me off of it She told the ER doc she didn't want to increase the Lamictal anymore because they had just done so. Yet she didn't pull the Triletpal? So now my meds are:

Topomax: 100mg x 2
Lamictal: 100mg x 2
Trileptal: 600mg x 1

When we got home from the hospital I had two auras (vomit smell)...I didn't dare tell my husband. I've had an aura already this morning too I feel like I've gone off my rocker. Things haven't been this bad in a long time.

[Nakamova]

I'm so sorry Zoofemme --

You hit all sorts epilepsy downers -- the seizures, the ER, the clueless nurse, the confusing instructions from the neurologist... When you feel better, I would recommend calling the neurologist to ask about the switch in opinion on the Topomax. It may just be because they couldn't up the Lamictal yet. Lamictal is one of the meds that you have go very slowly with. Perhaps when you are a bit more stable they could back off on the Topomax and up the Lamictal instead.

Anyway, I hope you feel better soon.

[Zoofemme]

I think I drove the ER doc a bit nutty with the verification on upping the topomax. The neurologist will call me today to check on how I am doing and to get a clearer picture of what went on yesterday...not sure if I will be able to help out to much on the latter but I'll tell her what I can.

As I understood it last night the eason she didnt up the lamictal was because she upped it just a couple of weeks ago. She may change the whole ballgame when I have my appointment with her again in 4 weeks too. At this point I feel pretty clueless. My husband asked me if I was going to go all crzy/moody on him again...I told him I didn't know, lol. I don't think it was the topomax that did that, pretty sure that kicked in when they started messing wtih the lamicatal...just have to wait and see. He just sighed and rolled his eyes with that one. Poor thing...

[Nakamova]

It can be tough(er) when you are on three meds. Makes it hard to figure out what's responsible for they way you feel: How much is you, how much is a particular med, how much is a combination of the meds. Plus everything may change as the brain adapts. You're probably still pretty stressed from yesterday, so go easy on yourself.

[JRuner]

Zoofemme, take care of yourself and I hope that your meds all get worked into a good dosage plan/level as soon as possible. I am glad to here that you have supportive family I am sure that is comforting to you. Try to get some rest. Thanks for not stranlging that nurse I have been there many times with my disabled daughter in the ER and some nurse telling me that she knew more about my daughter than I did including kids don't have strokes!

My prayers go out to you.

John Runer

[Zoofemme]

Thanks John...it isn't the first time it is happend and problably wont be the last...I just think about the other people...the person who it happens to the first or second time who doesn't know what is going on and gets treated like i did the first time it started happening to me Ignorance may be bliss but it certainly is no excuse...

[Loopy Lou]

Oh, i hope you feel better soon!

When a client of mine was in the hospital recently, i was amazed at how little some of the nurses knew. And often it was the ones who knew the least who assumed they were experts. My client has PKU and epilepsy, and they didn't have a clue how to deal with either. I thought i'd "drop in" the fact that i also have epilepsy too, and they looked as though we'd both go at any minute

I'm so glad i don't go to the hospital in this town! I've so far managed to avoid A&E.

*hugs* I really hope you're feeling better soon. It must take a lot of juggling to manage 3 different meds and figure out which are working and which aren't

[Zoofemme]

Thanks Lou Yeah, the 3 drug thing is kind of concerning. I was on mono therapy for a long time but the results weren't very good so my old neurologist finally decided to add in a small dose of lamicatal. It worked for about a year and a half then I had a couple of breakthrus so another doctor upped it a little bit and it worked for another year and a half and then break thrus again and now here I am....again.

I'm trying hard not to feel sorry for myself but this is one of those days where it is dificult

[Loopy Lou]

We all have those days.

Sometimes i find it therapeutic to have a good day of wallowing, and then i try and put it behind me the next day lol. Black day today, better tomorrow x

[Jan4you]

{{{ HUGS ZOOFEMME }}} Be kind to yourself.. maybe a good cry would help? Maybe?? Maybe not??

Yes the "nefarious educational guessing" of how much meds..and which combo will work..???? I remember so well when my husband, who had life long seizures..had 2 brain surgeries.. VNS and lots and lots of meds/combos and still after 46 years they were guessing.. even GUESSED at his VNS until he low so much weight etc.

Does ANY doc ever think that its too much meds or the wrong combo?? I mean EVER EVER suggest that? Well in his case.. I did suggest that.. and had the most wonderful Ep doc go along with it..and guess what? He went without ANY seizures for a long time. Just wondering. Less was MORE in his case.

What I appreciate so much about YOU my dear.. is how YOU are there for US.. ME..so let US be there for you .. more and more.

I am so sorry you are in such a delimma..with the need to still educate the medical profession ( that ER nurse)...and such.

You seem to have a good support system.. and you are telling somone or more.. what you are REALLY feeling..right?

More hugs..but gentle..you must hurt now.

Warmly, Jan

[Zoofemme]

Okay...well, I just sent an e-mail to the Vice president of Patient care, Director Of Nursing and Vice President of Medical Affairs of the Hospital asking them to better educate their nursing staff on Epilepsy and seizure disorders. I had to do it...I just kept thinking of being misdiagnosed all those years ago...laying in the hallway of an ER having seizures and being told I was having panic attacks, psuedo seizures, MS, all the other stuff...finally going status...that Nurse last night...ugh. If I can spare just one person from going thru what I did all those years ago I will have done a good thing I think.

I think my husband thinks I'm nuts...I told him I was going to do it and he was like "why??"

[Nakamova]

Bravo! That's excellent.

[Jan4you]

YEAH!!!

I support you 100% as your emailing IS taking control over not only YOUR care but preventing the same for others..who knows how much they have missed over the years.

Believe me, having worked in the health care business, including many hospitals, COMPLAINTS are taken very seriously. HEADS roll from directors, managers to workers !!!

And if you EVER even threaten to involve the STATE or "Jacho" that monitors their licensing and regulations..they will contact YOU in a hurry.

Ignoring someone who could go "status" is very very serious.

Good job.. you go girlfriend!!

Jan

[Zoofemme]

Wow...I got a reply back from the director of nursing already...exerpt from reply below:

"We appreciate your feedback and concerns regarding your experience and sincerely apologize for your less than perfect visit. We value our customer’s concerns, and would like to make changes as necessary to better serve our patients and community.

As a follow up, I will discuss your concerns with our Emergency Department director, and ask that she complete additional staff education on epileptic seizures in the near future.

Thank you again for taking the opportunity to share her experience with us. If you would like to discuss this further, please feel free to contact me"

Don't know if it is "serious" or not but it was quick

[Endless]

Zoofemme,

Way to go!!!!

Standing ovation!

You have helped possibly thousands of people who have epilepsy who will come after you. Bravo!!!!!

[Jan4you]

Well the reply should be quick but something told me it was manufactured..like a standard reply but with areas to "insert"..but the REAL test will be them making the changes..either way.. Good for YOU!!

I would follow up by asking to talk to them, this director of nursing, if you feel like it. Getting a feel for your experience in your own voice and you would get a feel of their sincerity and follow up.

Then You could ASK for a reply in the future, over what they did to rectify the lack of knowledge about seizures.

Trust me it WILL make a difference. BUT if you get a SURVEY about "your experience with ..." whatever dept that you had an experience with.. THAT SURVEY IS CRITICAL`!!! FILL IT OUT!! I cannot stress that enough for ANY of us.

Make sure to fill out the survey..trust me.. these surveys make and BREAK these organizations..the slightest less than perfect answer throws them off on a NATIONAL BASIS. They are compared to other ERs. hospitals across the NATION. And soon if not already, folks can view their "scores" online when comparison shopping.

Good that you did this and glad they replied.

Jan

[Crystal11]

Sorry to hear about your rough day. I had my share of ER trips for my seizures (complex partials) and Tachycardia/PAC heart condtion. I just love sitting there with nurses that ask "So how long did you shake for?" "Where do you shake at?" "Did you pee on yourself?" I say NO. I explain what happened and if I can't then the person that was with me does.
Its not cool going to the E.R. for anything in my opinion.
Last time, making it twice now, a person was in the middle of having a heart attack. Sucks to hear all of this- so I turned off my hearing aids.

I am hearing impaired and last time they did not call an interpreter- so I had to have the doctor speak loudly- but instead of that, he yelled to speak with me. I was dealing with a seizure in the morning and a migraine in progress!

Anyway- I wish more nurses understood about partial seizures more- there are just too many people that think all seizures are going to be grand-mal/tonic-clonic types.
LOL Sounds funny saying this, but I try to seize at home LOL. I don't have to do anything but go to bed or rest at least. My twin sis and friend have seizures too- so we watch out for eachother a lot.

Please take care and rest.
(Mother's voice) "Take your pills dear and rest." Hehe.

-Crystal and her guide dog Umbro