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gore2424
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A must read "My last two trips to ER"
« on: Aug 12th, 2004, 12:00am » |
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Hello to all my name is Terry I have been chronic since Nov. 1999. 12 years before I was spring and fall only. My current meds are which I have been on for over 1 1/2 years is as follows. Citalopram hydrobromide 40mg I take 1 1/2 each am for depression. Wellbutrarin SR 150mg twice a day also for depression.Ranitidine 150mg twice a day for acid reflux. Hydroxyzine HCL 50mg at bed time to help sleep. Samvastation 40mg for to lower cholesterol. I wear a pain patch its called Duragesic 75 ug/h which delivers fentanyl 24/7 into blood stream and you change it every 72 hours. And last clonaepam0.5mg I take 1/2 tab for panic attacks. My neuro which I believe he is really getting to know more and more about clusters every 6 months or so I see him. He also allows me a 10mg shot of morphine which I can have my wife give me. She is a CNA at local hospital and reads a lot so she really knows her stuff about my pain. I will also add in May 2002 I had operation in Mayo clinic in Rochester Minn. where they cut the right trigeminal nerve inside my skull leaving right side of face numb forever. That worked for 3 months then demen came back full force. And in the last 10 years I have tried 67 different meds in many combos with only months relief taking into acount they sometimes take 7-21 days for full effect to take place. Now my ER visit on Aug.1 2004 sunday at east campus hospital is like this about 8am I had 10+ cluster going I was slamming head against anything so hard left mark for 4-5 days. The ER said they were going to fix me up with suggestions they had from the Diamond Headache clinic. First they put in IV then in diazepam (valium) 5mg (anxiety,muscle relaxer. Then benadryl 50mg. And last haloperidol 5mg (haldol) it depresses the hypothalamus. I was out right when they put in second drug.My wife was with me and only thing she didnt like was when then last drug was in my heart rate was way to low for over an hour. I got awoken at 11am and taken home which I remember. Once home a 4 hour nap and I feelt good when I wook up. Most of week was fine my dads been in and out of hospital,nurseing/rehab home since April 8th with only being at his house for only 8 days so I have been stressed about that for awhile. Ok last ER visit was on Aug. 9th 2:40 am one week and a day from last time only I went to the west campus where my wife was working there 3rd shift. The ER also said they were going to go by Diamond Headache Clinics suggestions which they gave me different from all meds I got at other hospital campus only 6 miles away. Ok they put in IV and then first med was. Benadryl 50mg (antihistamine) causes drowsiness. Next was Reglen 10mg ( to prevent nausea). Then decadron 10mg (steroid,reduce inflammation,swelling). and last ativan 2mg (reduces anxiety). Plus put me on O2 this time. So why did two hospital just 6 miles away from each other give me different meds when they are just a east and west campus? So in closing I hope maybe someone or everyone could let their neuro's or doctors or if have to go to ER give these meds to them they both times worked for me the last ER trip I was very very out of it. Dont remember anything after the 3rd drug was in me. Next day I totally couldnt rememeber the ride home or anything else. If I have to go again I will also post it. Today I had Appointment at VA and the dr was very confused what I was given to help fight off headache. She also ask me about a newer drug thats out for chronic pain which I will call and get name and have my wife do some reserce on it. Anything I can do to help my fellow sufferers and supporters. Terry sighing off and feel free to message me if I can answer any ?'s ok PFDN to all
P.S. all meds given to me at hospital were given one right after the other no waiting 5-10 minutes just in ,in ,in.
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Superpain
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Re: A must read "My last two trips to ER"
« Reply #1 on: Aug 12th, 2004, 4:33am » |
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Jesus... Haldol!? WTF? *shudder*
No wonder I don't go to the ER!!!
My experiences haven't been anyting like that, and I stay away...
No one will EVER give me haldol again unless they've got me strapped down! Which in many cases, unfortunately, you may be strapped down when they give you that shit. 
You sir have some fucked up docs... And your ER visits don't sound any better.
Congrats if it killed the headache, but is it worth it?
You are a walking pharmacological encyclopedia!
You are not being effectively treated for clusters IMHO...
Get off the narcs.
Your wife may know alot about pain, but morphine is NOT exactly what you need for cluster's. Sounds like you need to detox, find out a better way of treating the depression and get a neuro who knows his ass from your headaches.
I can understand why the VA doc was confused...
I guarantee all that shit you are taking is hurting you, not helping. Especially the narcs and all the bullshit they're pumping into you at the ER!
Maybe a dumb question, but do you have O2, or does it work?
Any triptans?
Have steroids ever given you relief?
Verapamil, topomax, depakote, lithium???
FUCK the Diamond headache clinic if they suggest valium, benadryl and hadol for a cluster!!!
The second regiment at the other hospital sounds a little better, but still questionable at best!!!
I will not EVER go to an ER for a cluster again. Read the definition of a K10. I do not get K10's by definition, but i guarantee I've had a headache just as bad as anyone here. No ER's, no suicide... Therfore a K10 is impossible for me. You need to be strong and resist either one of those things.
And most of all, get a new freakin doc!!!!
Just because you've tried 1000 drugs doesn't mean you necessarily had the right combo and dosages for efficacy. A GOOD CH Neuro may be able to find it for you.
Good luck.
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Chris
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don
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Re: A must read "My last two trips to ER"
« Reply #2 on: Aug 12th, 2004, 7:23am » |
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Semour Diamond was one of ther pioneers in headache research We owe him a lot.
And his clinic knows it. $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$ $$$$$$$$$$$$$$$
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IndianaJohn
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Re: A must read "My last two trips to ER"
« Reply #3 on: Aug 12th, 2004, 8:48am » |
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I posted about the diamond headache clinic asking for reccomendations and got only one favorable response.
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Did my brains fall out or is this headache over?
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Superpain
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Re: A must read "My last two trips to ER"
« Reply #4 on: Aug 12th, 2004, 4:53pm » |
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I responded favorably because of what I've read....
SCREW THAT now...
I'd fuckin kill someone if they gave me haldol again....
Once the headache was gone and I came out of the seizure that is....
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Chris
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Pinkfloyd
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Re: A must read "My last two trips to ER"
« Reply #5 on: Aug 12th, 2004, 6:33pm » |
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on Aug 12th, 2004, 4:53pm, Superpain wrote:I responded favorably because of what I've read....
SCREW THAT now...
I'd fuckin kill someone if they gave me haldol again....
Once the headache was gone and I came out of the seizure that is.... |
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But you wouldn't kill the guy that cut your trigeminal nerve and made your face numb forever but left you with the clusters?
This isn't to defend Diamond Clinic but to ask how in the world they end up being the bad guys here.
First of all, the guys been on 67 meds and through a surgery. He enters an ER on a 75ug/h fentanyl patch so he has a high dose of narcotics flowing through his system. Who knows what was discussed by the docs in trying to find something to help.
Two different ER's use the name Diamond as the source of their treatment regimen but somehow come up with two completely different regimens for the guy. Which treatment was actually from Diamond? Either one? Neither one? Did all these docs just get back from a NHF convention and take bad notes?
Somehow Diamond ends up responsible for 10 years of failed treatments, high levels of pain meds, Seymour's name with $$$$$$'s and two affiliated clinics using different treatments, both supposedly prescribed for the same patient? Who'd they talk to at the clinic, the receptionist? Anyone?
Just seemed like a weird place for this thread to go.
PF
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Superpain
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Re: A must read "My last two trips to ER"
« Reply #6 on: Aug 12th, 2004, 7:45pm » |
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I suppose that makes sense...
Regardless of who's responsible for both ER experiences AND the meds situation as a whole, not to mention the surgery... I think it's clear gore has not had much luck getting the right kind of treatment.
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Chris
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Lizzie2
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Re: A must read "My last two trips to ER"
« Reply #7 on: Aug 12th, 2004, 8:06pm » |
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Actually with the exception of the Valium, those two treatments could very well BOTH be from Diamond or any headache center for that matter. I'm not saying that this is a good treatment for clusters, but in the ER (especially if it isn't one connected to a headache center somehow), they don't often know the difference very well. (I think most of us can agree on that?)
HOWEVER, as most of you know...I have 2 different headache types. I wouldn't have tried those meds for CH, but I have been given all of them to try to blast the other headache into remission....unfortunately it hasn't worked. A lot of people love their haldol (again..not with CH), but I went into anaphylactic allergic reaction not once, not twice, but THREE times before they realized it was the haldol and got it stopped. Bad....
I'm also allergic to Benedryl. That's one they use pretty commonly at MHNI and Diamond. They use it at Jefferson...which is where I go, but it is used not in the same way or to the same extent. Benedryl isn't usually a primary drug like it is at those other two clinics. Ativan is usually given for sleep when people cannot. I have it and take it from time to time.
Reglan is used generally as an anti-nausea premedication. I'm not sure if it was used to pre-medicate before decadron in this case or not. Decadron is dexamethasone...steroid. That one is a good call for CH or most any headache type really.
So yeah, I don't think the narcs are going to do it either. However Valium isn't a narc...it's a benzo. It is in the same pharmacological class as Ativan, Klonopin, etc. It could very well be used in this case to reduce anxiety or cause sleep. Would have been used in the same manner as the Ativan at the other hospital. So maybe the visits are more similar than we think?
I know I'd also never take Haldol or Benedryl ever again since I am very allergic to them, but they definately are used for headache treatment and some people swear by them...just not for CH.
When nonheadache docs ask me what I'm alleric to and I say Haldol, I get very strange looks! I also want to then go into some kind of crazy face just to freak em out for the hell of it. 
Hope this sheds a little light on the value of the treatments he received in the ER....they just aren't necessarily used for CH, but they are used for headaches.
Lizzie 
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IronHorse
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Re: A must read "My last two trips to ER"
« Reply #8 on: Aug 12th, 2004, 10:45pm » |
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What is the adversion to Haldol? I have never used it (to my knowledge) and am curious to the reason why it is creating such a stir..... From what I am reading, it doesn't sound very good.
I can also say, with much dismay: I have all but given up on ER's (as of yesterday).
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| « Last Edit: Aug 12th, 2004, 10:47pm by IronHorse » |
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Re: A must read "My last two trips to ER"
« Reply #9 on: Aug 13th, 2004, 12:17am » |
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10 mg of Morphine is a 30 15 second aspirin for me
Decadron usually works for me. When I do go to the ER ... it's usually for Decadron, Solu Medrol, or DHE. If i'm not admitted ... then I want the Decadron w/ a Dex Pack to go !
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MHNI uses Benedryl in combination w/ Droperidol (IV infusions)
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Superpain
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Re: A must read "My last two trips to ER"
« Reply #10 on: Aug 13th, 2004, 6:16am » |
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Haldol is an anti psychotic drug... Commonly used to treat things like schizophrenia. Caused me to lose muscle control and have seizures...
I don't like it... And neither do we...  
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Karla
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Re: A must read "My last two trips to ER"
« Reply #11 on: Aug 14th, 2004, 9:04am » |
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Terry and I have talked before. We both have tried over 35-40 different meds to prevent our ch from occcurring. Including the ovious popular ones. Oxygen doesn't work for me. It did for 2 years then quit one day. Terry even went as far as to have a nerve cut in his face. We are talking desperate here. Plus were both chronic. I go in to the ER I get 4mg of dilaudid and it works and I am ok with it and it gets rid of the pain. Morphine and demerol do nothing for me. Netiehr does compazine, benadryl, and other concoctions. I was on methadone for a year and then the duragesic patch for a year. For being chronic for 6 years those were the only 2 years I had no pain at all! When you are talking about quality of life, depression, and the need to live you will take what works including narcotics. After being on opiates for 5 years as perscribed I quit taking them cold turkey and had no withdrawal problems. I would recomend it to anyone who is resistant to all mainline meds. Glad you got relief Terry.
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Karla
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Re: A must read "My last two trips to ER"
« Reply #12 on: Aug 14th, 2004, 12:00pm » |
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on Aug 14th, 2004, 9:04am, Karla wrote:| Terry even went as far as to have a nerve cut in his face. |
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Is that the person who is permanantly numb on one side of his face now ... and the headaches came back ??
on Aug 14th, 2004, 9:04am, Karla wrote:| For being chronic for 6 years those were the only 2 years I had no pain at all! |
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Karla
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Re: A must read "My last two trips to ER"
« Reply #13 on: Aug 14th, 2004, 12:27pm » |
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The years I had no pain I was on methadone and duragesic patch. That is what I was tryiing to say. Don't be so quick to discard narcotics all the time. Sometimes there is a time and place for them with ch.
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Karla
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Re: A must read "My last two trips to ER"
« Reply #14 on: Aug 14th, 2004, 12:52pm » |
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Karla ... are we a little snappy today ?
I did not say anything about narcotics !!
Just didn't understand your statement !!
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Glad to hear that narcotics work for YOU !!
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Karla
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Re: A must read "My last two trips to ER"
« Reply #15 on: Aug 14th, 2004, 6:25pm » |
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Im sorry I wasn't directing my post to you completely I was trying to generalize it. I haven't been feeling the best lattley sorry if I was snappy.
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Karla
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Re: A must read "My last two trips to ER"
« Reply #16 on: Aug 14th, 2004, 7:32pm » |
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Me and you Karla ... We're cool 
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gore2424
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Re: A must read "My last two trips to ER"
« Reply #17 on: Aug 15th, 2004, 10:41am » |
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Hello all now to answer a few questions. Yes tried O2. YES I had the operation where they cut nerve to make my right side face numb. It can never fix itself or any operation to fix it also. After 3 months pain free (well had to take something of course for pain cause they went into base of skull thur hole they put in behind right ear) and then BANG the demon was there just like before damn. I go by my scale pain rate so I would most likely be different than some but close i bet. A few places some nerves on right side of face have branched to others or other way I have feeling around most of right ear and under chin. I was working all the times in pain BUT after 5-6 years of me not there all the time even when I was there took its toll and on Jan 09 03 I was layed off (yeah right) 20 + years selling auto parts and equipment. So I did only thing I could and applied for disability and got it on the first appeal. That most likely has keept me going. Ok also to add til Jan 01 04 the ER no longer give any narcotics for headaches. Any kind they say so of course always wanted to give me imetrex which stopped working for me many years ago. before jan 04 I used to get 50mg of vilisteral (depression med and to help stomach from next med) and 20mg nubane (like morphine). 20 minutes and I was out of there and to bed to sleep for about 3-5 hours with no pain. ok I have rambled on again just was reading this thread and thought I needed to add a few things. I dont like it taking all these meds I do, I have missed most of life because of these clusters. Sons track meets,familey gatherings,etc. And one last thing while I believe in the current meds I am on and cant do knowing about past I will be I guess in lala land alot rest of MY life and thats the way it is. PFDN to all Terry
P.S. sorry about spelling and not using a lot of the big words and anyone needs anymore INFO on operations which drugs do what and side effects please be free to post or email me gore2424@aol.com
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