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(Message started by: Lizzie2 on Jun 24^th, 2004, 12:48pm)

Title: Clusters and Hospitals
Post by Lizzie2 on Jun 24^th, 2004, 12:48pm

Hey gang,

As most of you know, I'm currently in nursing school. This morning we were talking about nursing theory, and my professor was telling some story about someone claiming to follow policy when it wasn't necessarily the most sensible thing to do.

So I decided to raise my hand and talk about that situation ClusterChuck recently had when he was hospital. I spoke up about it to ask what would have been the most appropriate action. She said first of all, it never should have gotten as bad as it did about "covering up" patients, etc. She said the more you aggravate someone in a cluster attack, the worse that attack is going to get.

She felt the most appropriate thing would be to say you are going to call the doctor to get an order, and then leave the room. If the doc says no, then ask why "because the patient is going to ask why." The doc will need to explain to the patient why they can't have it, if they do say no.

Unfortunately, nurses can't just give it, it does take an order from a doc...which can take more time than we want to wait. A nurse could lose her license by providing O2 without an order.

So I was thinking about this some. Yes, it would have been smart of that nurse to go get an order and handle it in a more calm manner. We can help ourselves in one way, though, too. If we wind up in the hospital for whatever reason, tell the admitting doc or the nurse in the interview that you will need O2 (w/nonrebreather at high lpm) available in the event that you have a ch attack. That way, they can get an order and then maybe have it available in the event that the attack comes.

That's just my thoughts on how the nurse could have done it better, and also how we can help ourselves to a degree in helping ourselves get the situation ready in advance. Know what I mean?

Just thought I'd share my ideas on that!!

Lizzie *helping to make the nursing world better for CH'ers everywhere!*

Title: Re: Clusters and Hospitals
Post by Sean_C on Jun 24^th, 2004, 7:14pm

Hi Lizzie,

I know what you mean, however when you have a clusterhead in the ER they more than likely are in excruciating/uncontrollable agony as we all know. The ER is the second to last step of desparation, the last being pulling the eye out with the fork to put it in some ice water.

I have once had one of my attacks during my peak at CVS pharmacy where I fill my script for trex spray. I begged the assistant pharmacist to fill it right away and she said NO, your only supposed to take 2 per day and you had 2 boxes (12 applications) in less than 48 hours. I went right to the senior pharmacist, eye watering, face flushed, body shaking and said look at me, I'm a mess, I don't take that stuff be cause I'm a junkie I take it because the doc said I could under his care. Now look at the date on my script its today. He filled it immediately and appologised.

I know there are warnings about side effects, but if my primary nuero is caring for me and he says its ok, I don't want the newbie pill counting girl at the pharmacy to play doctor for me period.

I hope I didn't sound like an ass, I wasn't getting personal, I appreciate everything you stand for, however that could change quickly if I come to your ER flippin' out and you won't give me my Trex ;;D

PFDAN to you

Sean

Title: Re: Clusters and Hospitals
Post by jonny on Jun 24^th, 2004, 7:29pm

on 06/24/04 at 12:48:47, Lizzie2 wrote:

Whats the story?

What did the nurse do/dont do?

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

Title: Re: Clusters and Hospitals
Post by Kevin_M on Jun 24^th, 2004, 7:30pm

on 06/24/04 at 12:48:47, Lizzie2 wrote:

Hey gang,

The doc will need to explain to the patient why they can't have it, if they do say no.

tell the admitting doc or the nurse in the interview that you will need O2 (w/nonrebreather at high lpm) available in the event that you have a ch attack. That way, they can get an order and then maybe have it available in the event that the attack comes.

Lizzie *helping to make the nursing world better for CH'ers everywhere!*

Well, yes, but I'm more of an insister than a teller. And I would leave the number to the doctor who is treating my clusters before that on duty doctor makes his decision to say...... NO??? Making sure it is ordered first is the best Lizzie. Thank you once again.

an ounce of prevention.....

Kevin M

*edit* Liz's story refers to when Chuck was in the hospital for his heart. He had a room and everything and got hit and the nurse gave him oxygen with a cannola tube.

Title: Re: Clusters and Hospitals
Post by Sean_C on Jun 24^th, 2004, 7:32pm

I think they would't help out CC when he went to the ER with an attack.........it was just a headache probaby...........not

Sean

Title: Re: Clusters and Hospitals
Post by UN_SOLVED on Jun 24^th, 2004, 7:42pm

I usually call the shots at the hospital, but I do so in advanced by calling my neuro and telling him ... "I've had enough. I need a break. I want to be admitted TODAY (NOW). I want DECADRON IV, Droperidol, and Benadryl (sp) today. Narcotics (Stadol / Morphine) just incase a breakthrough attack hits before I get DHE 45 IV starting in the morning. Then send me home after 4 days on a steriod taper. That usually gets me through a few days. :'(

Unsolved (revolving around Imitrex injections, DHE, and steriods)

Title: Re: Clusters and Hospitals
Post by Sean_C on Jun 24^th, 2004, 7:48pm

I feel your pain my man, hang tough bro.

Sean

Title: Re: Clusters and Hospitals
Post by don on Jun 24^th, 2004, 10:01pm

Quote:

If we wind up in the hospital for whatever reason, tell the admitting doc or the nurse in the interview that you will need O2 (w/nonrebreather at high lpm) available in the event that you have a ch attack. That way, they can get an order and then maybe have it available in the event that the attack comes

Hmm. Plain old solid common sense planning.

Your going to be one hell of a nurse ! I get sick, I want you bedside. STAT!

Title: Re: Clusters and Hospitals
Post by povlok1 on Jun 24^th, 2004, 11:15pm

hi, this is actually my first post but I could not think of a better topic. I recently been diagnoised with cluster headaches. I have been having attacks every spring and every fall for that last 4 years. I always thought they were sever sinus headaches for the coincided with sinus season. This last episoed was the worse. I went to the ER after about 36 hours of attacks. My attacks would last about 20 minutes than ease up for about 40, than repeat. These were so regular you could set a clock by it. I went to the ER, they gave me some shot that didnt touch the pain and sent me home, a hour later I was back, another shot, sent back home. The 3rd time I went in I was in full blown attack and almost suicidal from the pain. I happened to get a different doctor this time and he assured me no matter what, he would get rid of the pain,, first morphein,, didn't touch it.. than hydromorphone hcl , that worked but basically put me out.. thank god.. I was admitted for 3 days,, thank god,, was the first sleep I had in 36 hours..
I kept telling the docs I am no 'wuzzy' and was even a survivor of a subduralhemotoma (a bloodclot on the brain) and I had never felt pain close to this. I have long hair,, hippy looking type of guy,, and kept feeling like I was not believed and only wanted a 'free drug dose'. I was and still am in disbeliefe at the way I was treated. I was finally seen by a neuro who diagnoised me.. I knew I was in good hands for I was relating my ER exsperiance and when I told him of the dosage of morphine I received he interupted me and said "morphine wont touch what you have", finally,,, someone who knew what was going on! Even after this, the nurses seemed to snub me when I asked for a dose of pain med when in a attack for they see me when Im not in a attack, and then just assume I am faking for I've had them tell me " I was just talking to you and you seemed fine five minutes ago".. good lord!! I kept telling them,, " I wish you could feel what I feel for just one minute, than you would understand",, at least now I have a website I can steer em to so they can educate themselfs!! thanks www.clusterheadaches.com

Title: Re: Clusters and Hospitals
Post by ClusterChuck on Jun 25^th, 2004, 1:27am

on 06/24/04 at 12:48:47, Lizzie2 wrote:

Unfortunately, nurses can't just give it, it does take an order from a doc...which can take more time than we want to wait. A nurse could lose her license by providing O2 without an order.

I am sorry Lizzie, maybe I didn't say this in my other post. The order was on my chart that I could have the O², with the non-rebreather mask at a level of 15 lpm.

What this bimbo was doing is what is "standard" when administering O², and that is check the blood saturation level, and start with the cannula, first, to see if that is enough. She refused to accept that clusters need O² in a different manner than, say, someone with emphysema. I check my chart, later, and saw that it clearly stated that when I asked for it, I was to be given O² "as needed", with a maximum of 15 lpm for a period of no longer than, 30 minutes.

My problem with her, was that she refused to accept that there are other needs for O² than for those that have a blood saturation problem, and that ANYTIME O² is administered, it is by using her "tried and true" methods. She used her own translation of "as needed".

The idea of my post was that we have to get the word out about clusters and how to deal with them when in a hospital situation, especially when you are in for something other than clusters.

I am so glad, Lizzie, that you are helping to get the information out to those who need to know.

I hope this clears up some of the confusion about my episode. The doctors were all made aware of the fact that I suffered from cluster headaches. It was clearly in my chart. It was also clearly in my chart that I could have the oxygen in the manner we require it.

Chuck

Title: Re: Clusters and Hospitals
Post by Lizzie2 on Jun 25^th, 2004, 6:02am

Dang Chuck!!

I'm real sorry to hear that you had such a total idiot as a nurse!!! For the record, my nursing instructor yesterday thought your nurse was a total idiot, too...even if the description I gave was a little "off"!!!!

To all who posted on the ER side of things,
that's a different situation. When you're coming in mid-cluster attack..it's obviously not a key time to be explaining it to the docs. That happened to me on Saturday morning when the doc was arguing with me about lithium and I couldn't even tell him to STFU!! Ah well....

But yeah what I'm talking about is for those times when you're admitted to the hospital not in a CH attack...either to get treatment for CH or for something else, as was Chuck's case.

Luv to all!
Lizzie :)

Title: Re: Clusters and Hospitals
Post by don on Jun 25^th, 2004, 6:28am

On a brighter note.

My recent ER visit for CH attack produced a CH educated ER Doc who immediately ordered the 15 liters with the mask.

It was a first for the nurse. She couldn't get me hooked up fast enough. When I removed the mask, she asked if it would be alright if I explained to her what had just happened. She had never administered 02 in that fashion for a headache patient and was intrigued. I happily explained to a very interested nurse.

Next CH patient treated by this lady will no doubt be treated affectively and efficiently .

Keep the faith!

Title: Re: Clusters and Hospitals
Post by Kevin_M on Jun 25^th, 2004, 10:58am

on 06/25/04 at 01:27:49, ClusterChuck wrote:

The order was on my chart that I could have the O², with the non-rebreather mask at a level of 15 lpm.

She refused to accept that clusters need O² in a different manner

My problem with her, was that she refused to accept that there are other needs for O² than for those that have a blood saturation problem, and that ANYTIME O² is administered, it is by using her "tried and true" methods. She used her own translation of "as needed".

Aha, getting it in your chart and having that order complied with "as needed" can still be a problem, assuming she comprehended that order. I see well placed preemptive verbal clarity is necessary too. Thanks Chuck.

Kevin M

Title: Re: Clusters and Hospitals
Post by Sean_C on Jun 25^th, 2004, 6:57pm

on 06/25/04 at 06:28:55, don wrote:

This quote made my day.....you went for help and it was adminastered(sp) immidiately, nothings better than that during a kip 10. Education is everything ;;D

Was that at the Carney?

PFDAN to all

Sean

Title: Re: Clusters and Hospitals
Post by Mark C on Jun 25^th, 2004, 7:21pm

on 06/25/04 at 06:28:55, don wrote:

"When I removed the mask, she asked if it would be alright if I explained to her what had just happened. She had never administered 02 in that fashion for a headache patient and was intrigued. I happily explained to a very interested nurse."

Grassroots O.U.C.H. (http://www.clusterheadaches.org/) FUCKENEH!

Title: Re: Clusters and Hospitals
Post by Linda_Howell on Jun 25^th, 2004, 7:30pm

Quote:

Narcotics (Stadol / Morphine) just incase a breakthrough attack hits before I get DHE 45 IV starting in the morning. Then

Unsolved? Are you going to be at the convention? We need to talk. lol

Good work Lizzie. We are so very proud of you.

Linda

Title: Re: Clusters and Hospitals
Post by jonny on Jun 25^th, 2004, 8:04pm

on 06/24/04 at 23:15:38, povlok1 wrote:

I have long hair,, hippy looking type of guy,, and kept feeling like I was not believed and only wanted a 'free drug dose'

Try getting a hair cut you damn hippie ;;D

I have never run into that problem cause I have a nice crew cut ;;D

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

Title: Re: Clusters and Hospitals
Post by jonny on Jun 25^th, 2004, 8:11pm

on 06/24/04 at 19:42:03, UN_SOLVED wrote:

Then send me home after 4 days

Must be great just to bang out of work for four days at a time, Christ, I own my company and even I cant do that due to the work load.

All the power to you my brother.

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

Title: Re: Clusters and Hospitals
Post by Sean_C on Jun 25^th, 2004, 8:14pm

on 06/25/04 at 20:04:42, jonny wrote:

Try getting a hair cut you damn hippie ;;D

I have never run into that problem cause I have a nice crew cut ;;D

[smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif]

Sean ;;D

Visit Jonny's Web-site he's fuckin' with ya........that be the KING here

Title: Re: Clusters and Hospitals
Post by Charlie on Jun 25^th, 2004, 8:20pm

Welcome aboard Povlok. Sorry you had reason to find us but here you are among those who understand. If you stick around, you'll find good ideas and some ways to deal with this horror.

Here is a techique that worked for me:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck.

Through the following link you will find a letter written by a fellow cluster headache sufferer that is the best of its kind to help explain that these attacks have nothing to do with what others think of when they hear the word “headache.” It’s worth copying:

uk.org/ch/note_colleagues.cfm

Charlie

Title: Re: Clusters and Hospitals
Post by Lizzie2 on Jun 25^th, 2004, 8:25pm

Hey Charlie,

I'm so glad you linked me to that cluster colleague letter way back when. That thing has been so incredibly helpful to me.

After I gave my little spiel about clusters in class the other day, a girl asked me what they were because she really only knew very little about headaches. So then over lunch break I went home and printed it out and brought it back for her to read. Didn't ask her if she did yet, but she said she was going to. It is just the right length and in good language for people to understand simply.

I forgot to say that also on Thursday morning, we continued our "Nursing Journey" assignments where we go to the front of the class and talk about what made us go into nursing. I hadn't gone yet, so I went down there and (a little haphazardly as I'm not the best at speaking on the spot) told them all about my experiences with my chronic migraine and the cluster headaches.

Educating health care professionals one b y one,
Lizzie :)

Title: Re: Clusters and Hospitals
Post by Simon on Jun 26^th, 2004, 3:24am

Glad to be of service.

Still can't believe the letter is making a difference - cheers me up every time I read about someone using it.

Dolly

(..even if it's now had to be translated into "American" - perhaps all my posts should now come with subtitles as well...) :)

Title: Re: Clusters and Hospitals
Post by UN_SOLVED on Jun 26^th, 2004, 5:58am

on 06/25/04 at 19:30:59, Linda_Howell wrote:

Unsolved? Are you going to be at the convention? We need to talk. lol

LOL ... Yes, I'll be there. Incase your wondering, the narcs really don't do much good. Sometimes even make my headaches worse....but I'd rather take an aspirin for a broken skull then nothing at all ! ;;D

on 06/25/04 at 20:11:18, jonny wrote:

Must be great just to bang out of work for four days at a time, Christ, I own my company and even I cant do that due to the work load.

I don't think ANYONE is going to get much work done when your on your hands and knees beggin god for death several times a day. Work becomes just a word you'll deal with later. Believe me, I'd rather be out working my azz off for 16 hours a day then to go through this stuff !@!

Still trying to hang tough

Unsolved

Title: Re: Clusters and Hospitals
Post by don on Jun 26^th, 2004, 8:50am

Quote:

Was that at the Carney?

Carnage Hospital? Hell No.

Norwood Hospital. My Doc has an office across the street.

Seems Norwood has a monopoly on good Cluster Docs.

Quote:

I don't think ANYONE is going to get much work done when your on your hands and knees beggin god for death several times a day.

I'm like that every day by 3 PM. Boss generally just steps over me. OH! Did you mean because of CH ? 8)