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kycouple
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cluster headache newbie
« on: Aug 7th, 2004, 9:03am » |
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good morning all,
we are new to the cluster headache. my 47 year old husband has just been diagnosed with these horrifying headaches and we are looking for all the help we can get.
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synergy2120
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Re: cluster headache newbie
« Reply #1 on: Aug 7th, 2004, 9:41am » |
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You're in the right place then.
I joined this web site yesterday and already feel so much better for the advice i have been given and seen all the support that is giving to people.
Does your husband get them chronically or episodic?
what meds he take?
Sarah.
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IndianaJohn
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Re: cluster headache newbie
« Reply #2 on: Aug 7th, 2004, 9:53am » |
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Hello kycouple,
So sorry that you have to be here, but glad you have found us. There are a lot of very smart and supportive people here. Also the links at left contain some very valuable information.
Best Wishes
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IronHorse
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Re: cluster headache newbie
« Reply #3 on: Aug 7th, 2004, 10:03am » |
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Read on KY couple, there are a lot of good postings from people all over the world....You are with freinds
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E-Double
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Re: cluster headache newbie
« Reply #4 on: Aug 7th, 2004, 10:12am » |
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Welcome aboard!
So sorry you both are suffering.
You will find tremendous support here as well as tons of information.
Hang in there and learn as much as you can so that you both can be armed for the long battles.
Many hugs,
Eric
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UN_SOLVED
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Re: cluster headache newbie
« Reply #5 on: Aug 7th, 2004, 11:31am » |
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Welcome to the boards. Read as much as possible. Feel free to ask any of us questions about docs, treatments, and meds. We're pretty knowledgable about CH (We have to be ! )
PainFree Wishes,'
Unsolved
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kycouple
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Re: cluster headache newbie
« Reply #6 on: Aug 7th, 2004, 12:35pm » |
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Hi Everyone,
At this point we do not know if these are episodic or chronic as they have really just started in the last month. The doctor put him on prednesone (the highest dosage he could prescribe) and percoset for some kind of pain relief. We are hoping this will help. He had oxygen therapy yesterday and that gave him some relief. I am very happy to have found this site for support for myself as well as for my husband. Thank you all for being here, just wish it was not for this.
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E-Double
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Re: cluster headache newbie
« Reply #7 on: Aug 7th, 2004, 12:59pm » |
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on Aug 7th, 2004, 12:35pm, kycouple wrote:Hi Everyone,
At this point we do not know if these are episodic or chronic as they have really just started in the last month. The doctor put him on prednesone (the highest dosage he could prescribe) and percoset for some kind of pain relief. We are hoping this will help. He had oxygen therapy yesterday and that gave him some relief. I am very happy to have found this site for support for myself as well as for my husband. Thank you all for being here, just wish it was not for this. |
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Percoset.... NO!!! Pain killer Ouch!!!
Atleast with me... made much worse
Is this his first time on meds?
People are probobly going to tell you that he should be on different ones... Pred. along with some other as a preventative and
forget the percoset and prob. get some sort of triptan along with Oxygen.
Is this the first time experiencing these headaches or did he just finally get diagnosed after many years like many of us have done?
Get more info. and bring it to the doctor
Best of luck new friend,
Eric
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don
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Re: cluster headache newbie
« Reply #8 on: Aug 7th, 2004, 4:33pm » |
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Quote:| The doctor put him on prednesone |
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That would be fine if the Doc also Rxed a preventative to go with it.
Quote:| and percoset for some kind of pain relief |
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NOT a good treatment for CH.
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kycouple
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Re: cluster headache newbie
« Reply #9 on: Aug 7th, 2004, 7:16pm » |
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We are new at this, could some one explain why not use percoset for pain. It does seem to give some relief.
I need some ammo to take to my doctor. Doctor has talked to neurologist in our town and he seems to think that this is a good idea.
Also so I want to thank every one for being so nice and understanding to my wife, she has done all the posting here so far. I thought it should be my turn to ask some questions.
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| « Last Edit: Aug 7th, 2004, 7:29pm by kycouple » |
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E-Double
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Re: cluster headache newbie
« Reply #10 on: Aug 7th, 2004, 7:36pm » |
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on Aug 7th, 2004, 7:16pm, kycouple wrote:| We are new at this, could some one explain why not use percoset for pain. It does seem to give some relief. |
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If it works then fantastic if he truly has relief!!!
Does he get relief or is he knocked out?
How long has this cycle been occurring ? You said this is his first?
Anyway...
Many people, myself included were taking pain killers prior to getting "proper" meds. These painkillers actually made the headaches worse= Rebound headaches with such ferocity it made the original nightmare look weak.
Typically they say that pain killers are useless for CH'ers.
For me they did nothing but make me dopey or knocked me out which in turn brought the beast back with a vengence.
Read up on meds....
Check these out, they are things I've compiled based on my CH mentors from this grand old family
http://www.headachedrugs.com/archives/preventivemeds.html
http://www.mhni.com/faqs_cluster.html#treatment
http://www.chhelp.org/medications.html
http://www.upstate.edu/neurology/haas/hpclrx.htm
There are people with longer history than I have with medication and could probobly guide you better but I figured I'd try to give you guys a start.
Eric
P.S. didn't realize I was responding to you, thought your wife.... Only we know how we feel! Just trying to help you for now and unfortunately the future!
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| « Last Edit: Aug 7th, 2004, 7:39pm by E-Double » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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kycouple
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Re: cluster headache newbie
« Reply #11 on: Aug 7th, 2004, 8:10pm » |
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Maybe I should id myself at the begining of the post since we use the same name.
Thanks for the reply. I will be reading them.
By the way our names our Steve and Judy in case we did not id ourself in other posts.
I do get a little dopey which I see could effect my job and what other part of my life I have left at this point.
I found today the best relief so far is a cold compact and Judys shoulder to cry on.
I go back to the doctors on tuesday and I have a lot more questions to ask thanks to all of you.
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IndianaJohn
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Re: cluster headache newbie
« Reply #12 on: Aug 7th, 2004, 8:27pm » |
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Hello Steve and Judy,
I could not agree more with the stuff eric has presented to you. the pain killers never have stopped a HA nor aborted one for me. Just left me in pain and dopey. Sometimes I got rebound HA's, sometimes not.
All I can tell you is read, read, read. Print out information you wish to discuss with your doc, make a list if necessary.
Best Wishes
John
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E-Double
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Re: cluster headache newbie
« Reply #13 on: Aug 7th, 2004, 8:44pm » |
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Hi Steve and Judy,
Research!!!!
Steve, your a lucky man to have someone who loves, supports and found this site for you. My fiance found it for me and it saved me 
How long has it been? (current cycle and history of CH undiagnosed)
I went 9 years undiagnosed or misdiagnosed. No proper meds just painkillers left over from other stuff, steam, ice packs and bandanas!
Last year they morphed and hit me during the day. I was used to only having the nightimers. I fianlly went to a doc and he said seasonal migraines/allergies. Take blahblah.
Well this cycle Ithought I was out of the woods b/c didn't get hit like usual Always been march/april. I tried all the allergy stuff to be proactive and wasn't getting hit....
Bamm end of MAY ALL NIGHT LONG then all day long.
Turned out Worse than ever.
Fianlly got to a neuro and got proper diagnosis but ineffective treatment.
Four docs later found what works for me (hopefullycontinues to) at least this cycle.
Anyway... it takes time dude! Been 2 1/2 months for me and still going but it's ok cause I have the support I need(All of you and my awesome fiance!!)
Going to tinker with this and tinker with that.
What works for me may not for you and same goes for many of us.
Hang in there, get proper meds. Preventative and abortive and tell your wife how much you love her!
Best to you both,
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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kycouple
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Re: cluster headache newbie
« Reply #14 on: Aug 7th, 2004, 8:58pm » |
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I tell her everyday.
I am about 4 weeks into my first cycle. Never heard of CH until this week. Two doctors confim CHs.
Have had day and night friends so far(did not say good friends). My first bad one I was 60 miles from home sitting on the side of the interstate when they found me.
Was taken off road until I find out how to control them.
I will keep looking for a way.
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E-Double
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Re: cluster headache newbie
« Reply #15 on: Aug 7th, 2004, 9:20pm » |
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on Aug 7th, 2004, 8:58pm, kycouple wrote:I tell her everyday.
I am about 4 weeks into my first cycle. Never heard of CH until this week. Two doctors confim CHs.
Have had day and night friends so far(did not say good friends). My first bad one I was 60 miles from home sitting on the side of the interstate when they found me.
Was taken off road until I find out how to control them.
I will keep looking for a way. |
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Steve,
4wks. into your first. Kinda a nightmare! i definitely understand.
I never heard of CH until I found this site in the beginning of June. Nice to have a name and know it's not gonna kill us despite feeling like it will.
Are you still going day and night? Many hits?
I was like that. Was driving me mad.
I was able to finally wipe out my nighttime visits by taking melatonin. It seems to help a lot of us.
I was taking 6mg. 1/2 hour before bed(well now I'm doing 9 b/c had a few visits last week). Finally got sleep.
Sleep is something I'm sure you are missing.
It's worth a shot.
I also got Oxygen. Cheap, no dangerous side-effects and also very helpful at aborting for many of us. Get some if you can and if not there are certainly ways 
As far as meds go, I'm taking verapamil as a preventative and when needed I use Imitrex injections to abort. I was originally taking Depakote and using zomig to abort.
Prednisone works alone for some people but many use this as an "agent" to start relief while preventatives are reaching a therapeutic level. I was originally on this along with the Depakote but once I was finished with the Prednisone I got bashed so I knew that the Depakote wasn't the right med.
Ya see it takes tinkering. We are all different.
Anyway, since this is your first ARM YOURSELF!
Hang tough and don't hesitate to reach out. You've got a new family.
Welcome.
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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thebbz
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Re: cluster headache newbie
« Reply #16 on: Aug 7th, 2004, 10:37pm » |
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Hey Steve!
The prednisone works for me, get ready for side effects though. Takes a few days to ramp up on it,heart rate above 100 bpm, a nap every 3 days, you might find yourself baking cookies at 3:00AM. Imitrex inj. works as abortive for me , no preventative has worked . O2 works well for some , needs to be applied correctly . Ive been episodic for 25 years so they wont kill ya remember that. The neuro is your best bet. Pain killers with these only aggrivates . Learn your own triggers, ie:alcohol, stress, caffeine,ect...and hang on..Best wishes and fight the good fight the bbz
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Rick_K
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Re: cluster headache newbie
« Reply #17 on: Aug 7th, 2004, 10:48pm » |
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Don’t give up on oxygen it must be used correctly, see the link to the left; it truly is a wonderful thing.
Pain killers do not do shit. I spent years and years using pain killers (this was before I knew what clusters were) during one cycle I took one first thing every morning hoping they would help. By the time a pain drug gets in your system the worst of the HA is usually over. Get away from them and talk to your doc about a preventative such as Verapamil.
So sorry you had to find us but glad you’re here. There is a lot of support here and plenty of wisdom.
Rick
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ex_pat_asia
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Re: cluster headache newbie
« Reply #18 on: Aug 8th, 2004, 1:32am » |
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Steve,
As newly diagnosed you have a chance to start with a wealth of experience and information here that did not exist when many of us had our first tussle with the malady known as cluster.
I urge you to do a couple of things. First, sit down and write all you can remember about the events you have experienced. Note dates, time at onset, time at departure, meds, foods you ate before it happened, environmental conditions, even state of mind (you'll be surprised...usually it is a "relaxed" state in which you are most vulnerable but this can vary). Save your log for later references you might want to use here or with your doctor.
Secondly, fire the Doc that gave you percoset just in case that message hasn't already come through. No need to get pissed off at him. He simply doesn't know. Find someone who does. Then bolster their ability to help with what you find here and elsewhere. Stay proactive on this. Don't let the doc be dismissive with you.
Chances are good that, if you have been properly diagnosed, you are in for an oddyssy of sorts.
My advice FWIW:
Grab the beast by his horny head now and give him "what fer" with your own proactive involvement and thinking cap (and thank your stars for an able assist from your wife - this is "mui importante"...but warn her that there will be times when helping equates to leaving you alone for a while. My poor wife gets such a helpless look on her face if we get to that point, but she bites the bullet and leaves me to my own devices and temporary insanities knowing I will emerge later like some spun-cycled troll.)
In terms of favorite methods of dealing with cluster headaches once you are diagnosed, there are three areas to play close attention to:
Lifestyle: This refers mostly to foods and drinks that can "trigger" the attack, especially during the period of an episode when you are experiencing frequent attacks. However, "triggers" as we call them, are not the only subject to explore. You should try to determine whether you have any form of sleep disorder which is often a co-condition that aggravates cluster headache. One way to do this is ask your supportive wife if she notices whether you snore too long or loud, or have moments where you awaken partially during sleep because you quit breathing. You would not neccessarily be aware of this yourself. You could be disrupting sleep during levels 3 or 4 and rising to a semi concious state. A lack of REM sleep and stage three and four sleep is particularly problematic because it is during these periods that the body and brain are at complete rest (3&4) and memory consolidation occurs (REM). Sleep, and our circadian rythms are big consideration within the subject of cluster headache.
Preventative Meds: There are a whole raft of them with many varying degrees of efficicacy in keeping the attacks at bay or at least diminishing both the severity and frequency of them. You will find most of these desribed here in some form or the other. If your Doctor doesn't listen to what you have learned...fire him too and keep trying. This is part of the odyssy
Abortive Meds: These are designed to stop the attack in its tracks, usually involving some form of vaso-constriction action (downsize your bloated blood vessels that are carring all the bad stuff to your nerve endings and whose bloated features press on key points of the nervous system. My favorite is Oxygen...its natural state and inexpensiveness, as well as its undisputed efficacy across a large population of patients, make it tops on my list. triptan drugs (Immitrex, replax, etc.) are very effective but expensive and limited in numbers of dosage. Most clusterheads exceed this in a given time period as nearly as I can tell from the anecdotes. They also have side effects. Most of us overdose this stuff...probably not a great idea..but we do it because it stops the pain.
These three areas, when addressed will be your "stratgey". Every clusterhead should have one that he participated in on a proactive basis. This has some well being effects that go beyond the medications.
Check your doctor (including a thorough examination to rule out other maladys)...please do this and please see a neurologist. GPs are often good hearted folks who may be more inclined to listen to you and work with you...but for the first thorough exam I would put my money on the specialist. I know we villify the doctors around here a lot...mostly they have been out of touch on this malady...but not all are and many have tertiary information and concerns that will help you. One of these, years ago, rightfully suspected sleep apnea in my case, and ordered the testing for subsequent confirmation. Treatment dramatically reduced my attacks and the number of episodes I encountered per year.
Keep Cheer, you found a nice spot here on the web, and we all get a great deal out of it.
PFDAN to ALL
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| « Last Edit: Aug 8th, 2004, 10:04pm by ex_pat_asia » |
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ex_pat_asia
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IndianaJohn
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Re: cluster headache newbie
« Reply #19 on: Aug 8th, 2004, 8:21am » |
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Ditto for ex_pat_asia!
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E-Double
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Re: cluster headache newbie
« Reply #20 on: Aug 8th, 2004, 8:54am » |
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Well Put!!! Ex_Pat_Asia
Emphasis on note taking!!!
I have a spread sheet that I developed with every possible variable noted. I broke it into 15 minute intervals b/c if I was lucky that was my shortest. Unfortunately I had full blown headbangers that lasted upwards of 3.5 hrs. and nothing aborted them.
KEEP DATA!!!!! It will tell a story to your docs that sometimes we can not express in words. I'd be happy to share my simple info if anyone wants to take alook. It might be able to help some of you getan idea how to display what we are going through other than anecdotal notes.
Feel good,
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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kycouple
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Re: cluster headache newbie
« Reply #21 on: Aug 8th, 2004, 9:26am » |
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Steve here, we started a log to take to our dr. Going to check with nuro. in person this week and see if he has any better ideas.
Stopped taking pain meds. per you alls advice. We will check back in later and see hows it is going.
Had fairly good night but this morning has been bad. Whats left over is all thats going on now.
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E-Double
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Re: cluster headache newbie
« Reply #22 on: Aug 8th, 2004, 9:54am » |
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on Aug 8th, 2004, 9:26am, kycouple wrote:Steve here, we started a log to take to our dr. Going to check with nuro. in person this week and see if he has any better ideas.
Stopped taking pain meds. per you alls advice. We will check back in later and see hows it is going.
Had fairly good night but this morning has been bad. Whats left over is all thats going on now.
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Sorry your suffering brother!!!
Dude do what is working for ya atleast til you get a "proper" fix or help!
These are just suggestions to help you with your battle but if you have nothing to help you get by and have some relief go for it! UNLESS THEY(the percs) ARE IN FACT MAKING YOU FEEL WORSE!! THEN DON"T
Nobody wants you to suffer or wants to suffer themselves.
These were all suggestions based on years of struggle and research with our own battles.
Have you tried steam or icepacks on the back of neck? Slugging water. COFFEE!!!!!!!!!!!!!!!!!!!
Hang in there and try some home remedies for now until you can get some proper relief!
I use the ice packs on the neck (frozen vegies in a bag a re great. PEAS!!)
I also (if I can stand still for a few moments) Place a towel over my head, covering a sink filling it up with scalding water so as to get tons of steam.
Good for the skin too!
Slug coffee by the pot.
Rocking rythmically or
My favorite:
Pacing like the mad schizophrenic with coffee mug in hand chain smoking in pajamas throughout the neighborhood @ 3 in the morning 
Feel good man & hang in there!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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thebbz
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Re: cluster headache newbie
« Reply #24 on: Aug 8th, 2004, 1:14pm » |
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Thanks for the link man!!! Finally a simple one. BB
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