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        New Message Board Archives >> 2003 Posts >> please help!!!!!!
        
(Message started by: 123456lynn on Jun 9^th, 2003, 9:45am)

Title: please help!!!!!!
Post by 123456lynn on Jun 9^th, 2003, 9:45am

I am a migraine sufferer..........my sister who has epilepsy suffers from cluster headaches. She has been in and out of the hospital this week several times.

What concerns me is, I believe that my sister has an addiction to narcotics. She has been "kicked out" of 2 hospitals over the weekend as they have told her that they can no longer help her.

What also concerns me the most is that, she took 3 percocet (excuse my spelling) at one time and insisted and more meds.

To my understanding, cluster headaches are more severe in pain than normal migraines. Which makes me feel horrible if she is truly in this extreme amount of pain.

I too have been in the hospital with migraines for several days and have never been asked to leave.

I need opinions on people who suffer from cluster headaches.

Title: Re: please help!!!!!!
Post by aprilbee on Jun 9^th, 2003, 9:52am

CH has been coined the "Suicide headache" they are so horrible that unless you have CH, you cannot understand the pain. Narcotics are not the answer to the pain, I was on Darvocet N100 for so long, with no relief, and I became addicted. I finally spoke to a neurologist and between him and my doctor they got me on the right medications.

Your sister should be taking O2 or Imatrex not narcotics. I don't know about everyone else, but I have been cut off from certain drugs, in the height of my pain, because I am pinned as a "drug seeker", CH is still relatively unknown and people (and unfortunately Doctors) don't understand the intensity and recurrence of CH.

I hope your Sister gets the help she needs, talk to her about seeing a headache specialist or neurologist.

PFDAN to you both and you guys are in my prayers... :)

Title: Re: please help!!!!!!
Post by Donna on Jun 9^th, 2003, 10:02am

If your sister has never been properly diagnosed and treated with the right preventatives and abortives, she is seeking what she thinks is help via pain meds.

If the hospital is not aware of cluster headaches and thinks she is just seeking drugs, she will be labeled.

She must find a neurologist who knows what cluster headaches are and how to treat them.

Pain meds do not help most ch sufferers.

Read the information offered here and on the OUCH site (which you will find in the buttons to the left) and educate yourself and/or your sister. Then seek the proper medical help.

Title: Re: please help!!!!!!
Post by echo on Jun 9^th, 2003, 10:07am

Preventative meds are the way to go. Unfortunately the Cluster beast is a mutant that plays hardball when trying to figure out what med or med combo and dosage will hold him at bay.

A visit to an informed neuro is her best bet.

Title: Re: please help!!!!!!
Post by Laurie on Jun 9^th, 2003, 11:17am

The medical reviews I've read state that a severe CH attack likely causes more severe pain than any other afflication. The few migraines I've had were debilitating, but did not compare in pain to even a mild CH attack. Some people call a severe attack a "suicide headache" or a "suicide plus" headache. The pain of these is literally unbearable.

Many (most?) people at this site have been either misdiagnosed, dismissed as drug-seekers, or under-medicated by non-neurologists who did not understand the condition.

A CH attack is notoriously difficult to prevent and sometimes difficult to treat. A hospital is an ineffective place to seek pain-management treatment. The non-specialists simply do not have the knowledge to treat CH. As other posters have stated, your sister needs a good neurologist. Her family doctor can refer her to a neurologist who is willing to spend the time to listen to her case history and work with her to design a personal treatment program.

Narcotics can work to treat an acute attack, but there are many better choices to try first, including O2, imitex shots, and various triptan (imitrex, zomig, etc.) pills. There are also medications that may reduce the number of attacks she suffers.

Regarding addiction, if you sister uses narcotics only during an acute CH attack, she is probably just trying, unsuccessfully, to treat unbearable pain. Some CH sufferers who do not have the support of a neurologist overdose on over-the-counter pain-relievers, which are completely ineffective against CH. They are desperate. Using narcotics long-term can result in addiction, another reason they are generally not a good choice for CH.

Explore the info at this site and encourage your sister to do so as well. Then she can go see her neurologist armed with some knowledge about the available treatments.

Best of luck to you and your sister,
Laurie

Title: Re: please help!!!!!!
Post by paul_b on Jun 9^th, 2003, 12:18pm

Follow Donna's advice. From the information you gave, I can add no more than what Donna offered.

Title: Re: please help!!!!!!
Post by oringkid on Jun 9^th, 2003, 2:29pm

Narcotics generally do very little to stop CH pain. I found that I still had the pain and it made me sick as well.

The advice above is good advice.

Sherry

Title: Re: please help!!!!!!
Post by don on Jun 9^th, 2003, 2:40pm

I wouldn't be to quick to label your sis as an addict but she is terribly misinformed if she thinks narcotics are going to help her with CH.

If she does have CH she needs to educate herself and fast.

Who diagnosed CH and why? How long has she had CH ?

Title: Re: please help!!!!!!
Post by cbolony on Jun 9^th, 2003, 3:20pm

Can't add nothing here all good advice print it out so you have

Title: Re: please help!!!!!!
Post by cathy on Jun 9^th, 2003, 4:07pm

Hi sorry to hear about your pain, and about your sisters clusterheadaches which on a pain scale im afraid are indescribable to anyone who has not experienced them.... :-/

Get your sister to a neurologist, and educate yourself about clusters ....knowledge is power.....let us know how you both get on.

Welcome to the site, sending your sister PF vibes.

Cathy :)

Title: Re: please help!!!!!!
Post by Hound_Dogg on Jun 10^th, 2003, 12:51pm

I'm sorry to hear your sister is having these attacks...There is a very common condition among narcotic pain users known as "Pseudo-Addiction". What happens is they are labeled a drug-seeker when in actually they are looking for pain-relief and do not have a dependency or addiction to the substance. You can safely take 12-5mg. Percocets in a 24 hour period, so taking 3 at once is not necessarily the definition of an addict. It tells me that she is in tremendous pain and as everyone here has written, she needs to be evaluated by a competent neurologist.

Jim

Title: Re: please help!!!!!!
Post by jonny on Jun 10^th, 2003, 6:47pm

Me thinks its a BS post, why?....dont know just a feeling....could be wrong but I have been that before.

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

Title: Re: please help!!!!!!
Post by don on Jun 10^th, 2003, 7:53pm

It's OK if it is.

A lot of good thougfht went into the responses so maybe it will help somebody reading them.

I had the same feeling but erred on the side of caution and posted anyway.

Title: Re: please help!!!!!!
Post by Charlie on Jun 11^th, 2003, 6:03am

For 22 years, I had both epilepsy and clusters. Now, the CH is gone. If I had a choice, I'd take the CH over the epilepsy but that's only because of driving. I can tell you that CH is so painful that it wouldn't be automatic for some. A chronic may think differently.

How painful is it? Incredibly so. Nothing compares and it messes up lives to the point of thinking a lot about suicide. There are no over the counter pain killers and very few narcotics that are practical to use.

What a deal. Seizures and CH. Whatever is in charge here is a mean bastard.

Charlie

Title: Re: please help!!!!!!
Post by 123456lynn on Jun 11^th, 2003, 7:12am

Why the heck would anyone want to put a BS post?

I appreciate all the feedback that I have received. It has helped to educate myself and my family. CH and migraines are completely different and its better to hear it from the mouths of people who suffer from these.

Thanks everyone.

And to you Jonny......I hope you have a wonderful day! :)

Title: Re: please help!!!!!!
Post by KingOfPain on Jun 11^th, 2003, 9:09am

lynn,

First thing, your Sis needs to "kick" the narcotic thing.
My battle tools are imitex (an abortive, not a narcotic), oxygen (also an abortive), & verapamil (a preventative).

Second, have her (if she has access) come to this site & read,read,read. She can & will get assistance from the fine folks here. We are a compassionate lot. Encourage her to post, under her name or at the very least, under yours. Clusterville understands & will help.

Thirdly, I hope you get some relief from your migraines.

Here is hoping you both find the Dr.'s & help you need.
Your Sister really needs to seek out a Neurologist that is well versed in Clusterheadaches, one that doesn't treat with narcotics as a solution.

For you to go through the trouble of posting for her shows what a great Sis you are to her. Kudos to you!

KingOfPain