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        New Message Board Archives >> Jan-Mar 2003 >> Jill / Gotta love those Medical Proffessionals
        
(Message started by: marty on Feb 13^th, 2003, 9:00am)

Title: Jill / Gotta love those Medical Proffessionals
Post by marty on Feb 13^th, 2003, 9:00am

Jill at the ER last night..

Head Nurse comes up to her and says: "You really need to control your attacks so that you don't have to come here"..!!

At the ER at UCSD.. (last week)

"Pushing and hitting at your eye is not something that you should do - instead, you need to relax and get some sleep"..!!

At the ER at Grossmont Hospital..

Dr says: "This can't be cluster since it lasts more than 45 minutes and the 1 Lpm O2 does not abort within 5 minutes"..!!

At UCSD ER..

How much coke or methamphetamine did you use today, this looks like withdrawel symptoms..!!

I take her to the hospital when she reaches a pain level of 10 (+). When she was brought to the ER on the above occasions, she was banging her head, hitting her eye, crying and asking for "it all" to end.

How do you "control" that, how do you "relax and go to sleep", and how does this look like "withdrawel symptoms" (I have never seen any withdrawel symptoms that looked like this from coke or meth during the six years that I was assigned to narcotics).

Sorry folks, just my turn to vent a little bit.

Overall, Jill is doing good - she is happy, laughing and being quite sarcastic when not hit and looking forward to the Neuro appointment on the 27th of Feb. Ralph and Barbara are great in their support of her and that makes it a lot easier for her. Hopefully, they will come and visit again real soon.

Marty

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by JDH on Feb 13^th, 2003, 9:30am

Dont'cha sometimes wish EVERYONE could experience just one k-8 or above so they would know what we're talking about and that it's so much more than a headache.

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by brain_cramps on Feb 13^th, 2003, 9:40am

Jill / Marty:

Pisses me off to hear this. I went through it years ago in the ER, but I would have guessed that they would have learned something about this 'condition' since then.

I got in an arguement with a doctor in the ER one night after they filled me full of demerol. Pissed me off so much with the "You're just a junkie" bullshit, that I tried to take a swing at him. I must have been in slow motion because a buddy of mine standing behind me was able to catch my arm. Next night, on to the next ER.

Hang in there. Relief has gotta be coming soon.

Grant

ps...

WARNING: This stunt was performed by a 'professional' and should NOT be attempted at home (or your neighborhood ER).

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by CathiP on Feb 13^th, 2003, 10:57am

Martin-
How 'bout MY personal fave the night it took 2 adults to help this 100# thing in to the ER....
Dr says, "well, if you want our help, you're gonna have to help yourself.....now, show me how you walk across the room", followed, of course, by "what is it you've taken?" Jill's chart is HUGE, at this ER, yet every single DR chooses to ignore what evidence/dx is in there- they simply jump to the same sordid conclusions.....
funny part is, when the hits are over, Jill smiles- constantly, and has a wonderful wit about her.
Martin, you're doing a great job, Jill, you just keep doing what Martin says....and both of you, remember, you have a lot of people standing by, watching over you.

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by Linda_Howell on Feb 13^th, 2003, 2:43pm

Vent away Marty. We're all pissed off right along with you. Linda

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by kim on Feb 13^th, 2003, 2:50pm

Hi Marty,

Yup. Happens all too often >:( Very frustrating. Glad that Jill is in good spirits and well wishes to you all.

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by Opus on Feb 13^th, 2003, 3:16pm

Marty/ Jill,
The only thing any ER doc did for me was the diagnoses of CH. One time they gave me Imitrex and injected it into the muscle instead of the skin. I was told that turning the lights off would help, How can you pace franticly with the light off. No more ER for me. The cops would probably have to drag me in next time.
Opus :P

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by Jarvis on Feb 13^th, 2003, 4:26pm

Does the ER ever do any good?. Why go there?

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by brain_cramps on Feb 13^th, 2003, 4:51pm

on 02/13/03 at 16:26:48, Jarvis wrote:

Does the ER ever do any good?. Why go there?

For years, that's the only way I got any relief. Enough demerol to knock out a rhino!!! (xanax, fiorinal, cafergot, sansert, inderal, deltasone / predinsal (sp?), propanolol, novo-gesic all did nothing for me for years)

Since that time, imitrex and the oxygen have become a lot more common. Regardless, they don't always work for everyone, especially if you're getting hit with a KIP-10 every night.

I'm curious what other suggestions you might have?

thx,
grant

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by Svenn on Feb 13^th, 2003, 4:55pm

when it comes to doc`s nothing really suprise me anymore.
Sometimes i really think my oldest son does a better job then those working in ER,and my son is a plumber.

Keep on Jill and Marty

Svenn

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by catlind on Feb 13^th, 2003, 10:06pm

I am very fortunate in that I've found an ER that is very knowledgeable in clusters. Of course, it's a very small town, and they know me and my case well. They help me co-ordinate my care even because they know the military system is seriously broke.

But aside from them, I've all too often fought with the Dr's in Urgent Care and ER's about not be a junkie, and not dreaming up the pain etc.

It sucks that you have to go through an entire history evertime you go to an ER.

The neuro I saw at Walter Reed was awesome and gave me a letter with full diagnosis and recommended treatments to take with me wherever I go.

Jill, if I recall, you have military access? If you can at all manage it, get yourself a referral and an appt with Dr. Reichers at Walter REed. He is EXTREMELY knowledgeable and VERY helpful, he's not your run of the mill "you have migraines" neuro. He really is incredible.

Cat

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by kamm_fam on Feb 13^th, 2003, 10:14pm

read police harrassment, 45 minutes for them to check on me last night, because they thought i was having a meth or other narcotic withdraw
complete and uter fubar

my support towards jill, blessed be my friend... blessed be.

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by Ann on Feb 15^th, 2003, 10:43am

Marty,

Jill is lucky to have you in her corner. Keep fighting the good fight and vent away. That's why we're here!

hugs to you both
Ann

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by Jim R on Feb 15^th, 2003, 11:50am

One time I went to the ER and they sent me to Walk-In care (non-urgent). After sitting there for 5 mintues with a KIP 10, I found a nurse and told her I had clusters and was at 10/10 and she brought me right over to the ER and proceeded to lecture the other nurse that it was CLUSTERS I had. The other nurse said "well, isn't that just like migraines?" and the knowledgeable nurse, shaking her head almost screamed "No!"

Most times when I go because nothing else is working, I end-up getting massive shots of demerol, which do help me.

Good luck.

Jim R

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by marty on Feb 16^th, 2003, 5:44am

Thank you all..

I remember back when Jill first started posting. Some of the posts seemed to be a "little to much".. I thought to myself; "how can anyone be hit so hard and so frequently?" (Being an episodic myself and not hit anywhere close to as hard as Jill seemed to be).

Well, I do not post very much about Jill since there is no relief in sight for her. The attacks have increased in severity and frequency. She gets hit day and night - she will get 1, maybe 2 hours when not hit (still spiking) then the next one comes and the "banging" starts, the tears come and "Help", "Please make it go away"-pleas, becomes a tangled mess..

Anyway, she is still very strong and we will make it through this.

Grant, your phone calls are so important to her..

Cathi P, well.. you know..

Linda H, If it wasn't for you..

Riccardo, Kim, Nancy, Opus, Cat, Svenn, Pep and all the rest of ya.. You guys keep Jill going - thank you.

Marty

Ps. I knew that I should have bought a Chevy truck.. Transmission is going out - have to "baby" the F-250 to the ER.. If anyone runs into Henry Ford - Kick his butt for me will ya ;D

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by RicoVon on Feb 16^th, 2003, 6:54pm

My first.... and only experience with an ER. (this is why...)
Scenerio.
I come in with a friend... I'm writhing in pain. Nurse says "Fill this out." I barely reply "I can't! I can't even remember my name right now!" 10 mins of arguing later, I scream out in pain "Somebody HELP me!" and a Doc comes running up. He sits me down, I tell him the best I can what it is I feel. (As most of you know, by now I can barely function!) He grabs his pen-light and decides to take a closer look at my eye that is swollen shut. I very loudly yell "Aaaaahhhhrrrrrggggg!" So he does it again. I yell "Aaaaaarrrrrrrgggggghhhh!" again! He instantly came up with the diagnosis that I had glacoma. I yell, "No, it's a cluster headache I tell you." (This was a few months after I diagnosed my own headaches after reading a book.) "I need some oxygen and a vascular constrictor." Offended by my retort, he leaves to go get the meds I requested. 20 minutes later, he comes back with some Advil. By then my headache was subsiding, and I left. (And still got stuck with a $200 bill, for absolutely NO help!) Finding the right doc is half the battle. The very first question I asked when I looked for a new doc was..."Do you know what cluster headaches are... and explain them to me." Of course I know what they are... I just want to know if they do!!

Title: Re: Jill / Gotta love those Medical Proffessionals
Post by jonny on Feb 17^th, 2003, 6:42pm

Rico,

Great post.

.............................jonny