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(Message started by: LindsayLoo on Jun 1st, 2007, 8:42pm)
Title: Hi There!
Post by LindsayLoo on Jun 1st, 2007, 8:42pm
I am obviously new to the boards. My name is Lindsay, I am 30 years old, married w/ 2 girls ages 21 months and 8 months and I live in Arizona (originally from Chicago). I was just recently diagnosed with Cluster headaches last week. I have had a horrendous week. I have been to the E.R. three times since saturday (Sat, mon and tues) went to my new PCP  yesterday (she thinks i'm a quack i feel) and have a nuerology appointment for june 19th. Thankfully, my dad is a retired M.D. internist, so he made me return to a different hospital on tueday and got some things done for me. I was hoping you all could help me with some ways to cope with all of these headaches.  When I was at the hospital for the 1st time on saturday they gave me morphine which made it worse, then demoral which helped for about 30 minutes. On monday night, they gave me a shot of demoral, 150mg in the butt and oxygen which really helped, the oxygen that is. and on tuesday when my dad took me I asked for the oxygen first. Then they gave me Diluadid (sp?) which wore off after about an hour. I have tried Imitrex 100mg and 50mg  that my dad gave me, did nothing and then my PCP yesterday gave my a prescription for Elavil 50 mg , 5 percocet (i told her i didn't want it since it didn't work and I already had some left) and 1 pill of Relpax,  which did nothing, she said she wouldn't do anything more until I got the results of my UA (sent to a private lab) to make sure I wasn't a junkie. I told her I wanted oxygen the most all the other stuff didn't help as much she said "we'll see". How am I supposed to make it through the weekend? I am new to these headaches so I can't tolerate the pain well. I know when I should go to the E.R but I am now afraid to because they will think I am a doper since they basically treated me that way on monday's visit. HELP! I just don't know what to do.  Oh and I even went and bought nicotine patches to see if that would help quit smoking and I am A "HOLIDAY" drinker.
Title: Re: Hi There!
Post by Jonny on Jun 1st, 2007, 9:00pm
Your Dad cant pull some strings to get you 02?
Title: Re: Hi There!
Post by George_J on Jun 1st, 2007, 9:08pm
Welcome, Lindsay.

Sounds like you got some pretty standard treatment at the ER.  I think the ER docs often don't know quite what to do with us, so they end up throwing painkillers at the problem.  Which in my experience, at least, do nothing at all.  Early on, I was given all the narcotics and synthetics you mention, as well as a few others.

Yes, you seem to have realized that oxygen can do more for you than almost anything else.  It's most effective if administered at 12 to 15 lpm with a NON-rebreather mask.  For about seventy percent of us, it is an effective, safe, and inexpensive abortive.

Imitrex pills are unlikely to do much for you--what you need are the autoinjectors.  Others who have more experience with them will be along to tell you more.

I haven't forgotten what it's like to be suddenly confronted with CH for the first few times.  It's unlike anything else that a person may experience.  Nothing physically prepares us to handle the pain.  

Please see what you can do to get in to see a neurologist who specializes in headaches as soon as possible.  I'd really like to see you get appropriate treatment, instead of the typical willy-nilly hurling of narcotics that we've all seen way, way too often.

Best wishes, and again, welcome.

George
Title: Re: Hi There!
Post by Kevin_M on Jun 1st, 2007, 9:16pm
It sounds like the hospital has been simply trying to treat you for pain, unsuccessfully though if it's clusters.  Oxygen at high flow with a non-rebreather mask will relieve it in a short while and breathing longer get rid of it, as an abortive.  The Imitrex pills are none too effective
 The neuro appointment is still over 18 days away, since your doctor has given you a prescription already, he might not have any objections to giving you any samples to try of Imitrex nasal spray he has laying around, and I'd be pretty sure he does.  If you were to try that and it worked, have faith, it can take 10-15 minutes, maybe he could write a script soonafter for you until the neuro appt, unless he is willing to script oxygen too.  
 Without anything, there are many ideas around that will probably be forthcoming, I have used the freezer icepacks, several of them in a night so keep a couple.  Melatonin, off the shelf at any pharmacy is a possibility too, for at night time. 

Just an idea.   Hang in there.   Welcome.    :)
Title: Re: Hi There!
Post by swimchica623 on Jun 1st, 2007, 9:18pm
Hi,
Welcome!
First off, while I am a huge supporter of anyone that decides to quit smoking, and it is the most WONDERFUL thing you can EVER do for your health, the overall opinion seems to be that it doesn't really stop CH...and in some cases can actually make a cycle worse..there is some reasoning but as a non-smoker I have always skimmed over the reasoning of it all....
Avoidance of alcohol, however, seems to help most.  
How long does each hit last?  How many a day are you getting and how are you coherent enough to ask for oxygen??
You can try chugging Red Bull...cold and as fast as you can possibly get it down.  Also ice...there is a trick with a single ice cube I haven't mastered yet, I hold a moldable ice pack near my eye in the area that droops and swells and over towards my temple and one on the back of my neck (um something about the back of the neck is helpful, some reason behind that...also nice cuz its cooling because I overheat so much).
As far as handling the pain, just keep a positive attitude!  Attitude is everything, don't think of what might come, don't even think about what you have been through.  Just enjoy the pain free time and be happy for it.  Things might seem bad, but it will get easier, and you WILL get stronger.
Good luck at your neuro appt...hope it all goes well. :-)  
Lisa
Title: Re: Hi There!
Post by mynm156 on Jun 2nd, 2007, 1:32am
Hey LindsayLoo,

I too am from AZ. Up in Mesa.  I am Glad that you found us I am soooo very sorry that you are one of us!!  you will find that this site has a great wealth of information it can be a little abrasive sometimes as we do get snake oil salemen here ALL THE TIME.  just hang in there and if there is anything I can ever do just IM me.  Again Welcome aboard we are glad to have you!

Your Brother in Pain

Howard AKA MYNM156
Title: Re: Hi There!
Post by LindsayLoo on Jun 2nd, 2007, 1:32am
Thank You for all of your replies...I forgot to mention in my first post how long these headaches have been lasting. I have had them everyday now for 18 days. They were happening at first around 3am and then gradually got worse. I am now currently   getting them about 4 times a day like clockwork the wost being about 4 hours after I go to sleep. The worst part (where I want to stab myself in the eye repeatedly with a seafood fork) lasts about 1 -1 1/2 hrs. I have tried the ice packs, everything before being diagnosed (thought they were migraines). My parents just recently moved out here to be closer to my kids so he has no medical "friends" in the area or believe me I would have that oxygen. If I have to go to the hospital again, what do I tell them "give me oxygen!"? or should I call my PCP on call first and see waht they say. I can't do this again esp. with 2 kids under 2 that i take care off by myself a majority of the day.
Title: Re: Hi There!
Post by mynm156 on Jun 2nd, 2007, 1:35am
I would tell the Doc that you want to try O2 get a copy of your ER records to show what they did to treat you and present them to your PCP.  O2 isnt that big of a deal.  Also O2 used for non medical purposes such as welding is fine you may try a couple outlets for that you never know!  Good Luck!!

MYNM156
Title: Re: Hi There!
Post by LindsayLoo on Jun 2nd, 2007, 1:35am
Howard, I am in Tucson. I am glad to have found this board too. Thank you for having me!



on 06/02/07 at 01:32:20, mynm156 wrote:
Hey LindsayLoo,

I too am from AZ. Up in Mesa.  I am Glad that you found us I am soooo very sorry that you are one of us!!  you will find that this site has a great wealth of information it can be a little abrasive sometimes as we do get snake oil salemen here ALL THE TIME.  just hang in there and if there is anything I can ever do just IM me.  Again Welcome aboard we are glad to have you!

Your Brother in Pain

Howard AKA MYNM156
Title: Re: Hi There!
Post by LindsayLoo on Jun 2nd, 2007, 1:40am
I took ALL off the hospital records from this week to my PCP, she still didn't give a damn.  She also sees my husband and is not the most compassionate wman in the world. Also, last time I was in the ER they told me to get a "Pain management plan" or something with hw much pain med to give (narcotics), how often and time and what other facilities  I go to (I go to no other facilities) etc, so they know how to treat me. I told her this and her response was "I'm not a pain management doctor so I won't give you that"



on 06/02/07 at 01:35:40, mynm156 wrote:
I would tell the Doc that you want to try O2 get a copy of your ER records to show what they did to treat you and present them to your PCP.  O2 isnt that big of a deal.  Also O2 used for non medical purposes such as welding is fine you may try a couple outlets for that you never know!  Good Luck!!

MYNM156
Title: Re: Hi There!
Post by mynm156 on Jun 2nd, 2007, 2:15am

on 06/02/07 at 01:40:36, LindsayLoo wrote:
I took ALL off the hospital records from this week to my PCP, she still didn't give a damn.  She also sees my husband and is not the most compassionate wman in the world. Also, last time I was in the ER they told me to get a "Pain management plan" or something with hw much pain med to give (narcotics), how often and time and what other facilities  I go to (I go to no other facilities) etc, so they know how to treat me. I told her this and her response was "I'm not a pain management doctor so I won't give you that"

Sorry girl time to FIRE that doc and get another.  You have the RIGHT to be treated for your pain and can File Suit if the doctor refuses to treat you for no reason.  Good Luck!
Title: Re: Hi There!
Post by Paul98 on Jun 2nd, 2007, 6:05am

on 06/02/07 at 01:40:36, LindsayLoo wrote:
I took ALL off the hospital records from this week to my PCP, she still didn't give a damn.  She also sees my husband and is not the most compassionate wman in the world. Also, last time I was in the ER they told me to get a "Pain management plan" or something with hw much pain med to give (narcotics), how often and time and what other facilities  I go to (I go to no other facilities) etc, so they know how to treat me. I told her this and her response was "I'm not a pain management doctor so I won't give you that"


Yup, time to fire your Dr.!!!  I guess with the attitude your Dr. has I'd be inclined to state loudly in front of others that "I didn't think they handed out medical degrees on the back of match book covers.  You are fired" and walk out ;;D  

Best thing you can do is find a new Dr. and not waste your time with this one.

-P.
Title: Re: Hi There!
Post by swimchica623 on Jun 2nd, 2007, 9:36am
Last time I went to the ER to get some IV DHE and whatever other stuff they feel like trying..(too long of an explanation though!) that can make a stretch of really bad time bad (I'm chronic so not exactly a cycle, just when things get a little out of control) I just brought my clustermask with me and more or less helped myself to the o2.  CH attacks are scary, they shouldn't want to see you writhing and screaming in pain! IF I WERE YOU, next time, I'd just take the non-rebreather mask they give you with home with you and bring it back if you can't easily find one in your little ER cubicle.  Whoever is in the ER with you can explain in a calm manner what you are doing if someone questions it, if its a good doctor they will understand, its a bad one, well......
That's just what I would do anyway.  Cuz I'm an annoying little pain in the butt and know what I need.  ;;D
Lisa


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