The other thread seems to have gotten hijacked so I'm going to answer this question in detail here.

Every few months a newbie asks why members of this board are overwhelmingly against narcotics.  The question is so common that I wish that we had a sticky about it.  The short answer is that for most sufferers it's not worth the risk. There are safer and more effective treatments that don't carry the risks of narcotics. 

The long answer follows.

You're not going to find anyone here that's supportive of the idea that you use CH as an excuse to become an addict, which is what some newbies seem to expect.  We don't want people pretending to have CH as a drug seeking behavior ruining treatment for the rest of us. 

If you do have CH we want you to learn to manage your CH as best you can.  We want you to be proactive and not let CH take over your life.  We want you to be as happy as possible.  Addiction and long term happiness are mutually exclusive.

The idea that narcotics have no place at all or are not at all effective is incorrect.  There are many on this board (including myself) who carefully and quietly have included narcotics in their personal treatment plan.  Having said that however, even though I choose to use narcotics even I would stress that they should be used as an EMERGENCY or LAST RESORT treatment ONLY.

Those who are fervently against narcotic use are likely coming from one of four places: 

1) They haven't tried them but believe others who say they have no place
2) They have tried them and are among the majority whom narcotics do not help
3) They have tried them, they were effective temporarily but either through dependency or addiction (these are not the same) they lost effectiveness over time or otherwise had a detrimental effect on their quality of life making them regret using them in the first place
4) They've been a member of this board long enough that they've watched people like me go from seemingly responsible & stable to despondent addicts for whom narcotics no longer work, and they've seen in these people that the consequences of narcotic use are simply not worth it.

If, like most, you have episodic cluster headaches, 1-3 per night that do not otherwise impact your life,  there is probably no scenario in which narcotic treatment is ever worth it.  You know the pain will go away within about an hour even if you do nothing, and in a few more weeks the cycle will be over and you'll forget all about having CH until the next cycle.

If you need treatment, there are options like oxygen that you should try first.  It is cheaper, safer, has no issue with addiction, is natural and is effective for most.

Most non-narcotic treatments are not addictive, are more effective, and do not cause permanent detrimental changes to your brain.  Most other treatments do not detrimentally disrupt the quality of your life to the extent that narcotics do.

Narcotics are not very effective even if you're one of the minority of people for whom they help.  If you take them at the first sign of a headache and with some caffeine, the headache might be reduced from a Kip10 to a Kip 6.  You're still in serious pain, maybe equal to the worst pain you ever experienced before you had CH. 

If you're suicidal and nothing else works narcotics may be worth it, at least temporarily until you can find something that does work.  This is what is meant when people say it could potentially be a stopgap until you find a better treatment.

If you're chronic and averaging 8 or more hits a day, if you're disabled, if you've taken the more than 3 years that it takes to try everything and also rule out every other treatment as either not effective or not worth the side effects, that is the place at which it might be worth it to consider narcotics.  That's the point that even the foremost neurologists in the world are going to steer you towards pain management to try and give you the best life quality possible.

Even for members of this board, that is a rare place to be. At that point you probably know more about CH and treatments and trade offs than your neuro does.  At that point you can decide for yourself whether dependency is a choice you want to make for yourself or if (like me) narcotics are something you use only when your next step is the ER because you've had so many days of nonstop (45 minutes on, 45 minutes off) hits that you're suicidal and you need a break to regain some emotional equilibrium.

No one is going to deny that narcotics are a better option than suicide.  But if there's anything else left to try, there are probably better options than narcotics too. 

That is why no experienced member of this board is going to encourage the use of narcotics for anything other than as a last resort.

Katy

I recall the discussions a few years past, replies seeming more than a caution warded at the time, directed frankness entangled involving an interdiction easily construed unfriendly. 

This is by far your best and a good contribution to the subject, Katy.     :)

thanks for posting this katy. people need to know this. it is seldom mentioned that a few people on this board have been given narcs to deal with the extreme pain and now still have CH and are battling a drug addiction to boot.

THANK YOU Katy....that's a primer! so well thought out and presented....I am humbled in my ignorance...you can be assured you have saved many from a demon that CAN be avoided....

Best,

Jon

I love cold, hard facts and logic. They're so damned hard to argue with. Nicely done.

Joe

Quote:

I wish that we had a sticky about it.

in a way, we do.  Svenns "dancing with the Devil" thread is stickied at the top of the Generasl board.  It's an eye-opener..

If one is chronic and using narcotics THEY will certainly be more apt to become addicted than say someone whose cycle only lasts a a couple of months.

I have heard over and over again through the years from people who took a vast amount of narcotics who say it hardly touched the pain BUT made them so groggy, spaced out, etc.  so they couldn't deal with the HA.

Kate, there will always be some here who will argue that it's no big deal, it helped them, blah, blah blah...but the majority of us know the reality of this. 

Good on you for your well-thought out post.   Like Joe said, it's hard to ignore or argue cold hard facts.  (Trust me though.  Some will_   ;D

Linda_Howell wrote on Aug 16^th, 2010 at 7:34pm:

I have heard over and over again through the years from people who took a vast amount of narcotics who say it hardly touched the pain BUT made them so groggy, spaced out, etc.  so they couldn't deal with the HA.

Before I was diagnosed with CH I was given codeine. It did virtually nothing to kill the pain other than knocking me out after about an hour, but it did give me an addiction (not fun going through the withdrawals), constipation and it made me half asleep both mentally and physically for most of the day.

I for one don't want to touch them again.

Linda_Howell wrote on Aug 16^th, 2010 at 7:34pm:

Good on you for your well-thought out post.   Like Joe said, it's hard to ignore or argue cold hard facts.  (Trust me though.  Some will_   ;D

I wonder how often newbies don't have CH at all.  I'm thinking a surprising portion are addicts who google "most painful condition" and find CH that way, thinking they've struck a goldmine because it's something that cannot be disproven.

O.K., I guess I am not following your last thought at all.

WHY would an addict who didn't have CH google most painful condition and come here to post???

I think her point was a lot of people who claim to have CH are the same who show up at the ER "claiming" to have kidney stones. They surf the net looking for painful conditions that cannot be proven. Then, having gleaned just enough info to sound like they know what they have, they race to the ER claiming to be in the throes of an attack, hoping  for some of that good Schedule II stuff!

Anyone who has ever worked in the ER has had to deal with these twits. They are the reason so many of us are looked upon as drug seeking addicts the first time we showed up in the ER with pain and no observable symptoms.

Joe

Yes, that was exactly my point, Joe.  A few months working in a hospital and color me cynical.

Narcotic abuse is a huge problem in medicine.  Medical providers have to walk a fine line between helping people who are in pain and keeping a level of suspicion that they may be played.  It's not a good scenario and creates distrust between provider and patient. 
That being said, my understanding of the current statistics is that up to 30% of all narcotic prescriptions are diverted.  That is a horrible number and unfortunately, it ends up that the people who need help the most with their pain end up paying the price as being regarding as drug seekers or abusers...

Katherine, thank you for your post.  Eloquent and informative.  I, myself, have used narcotics for my CH as a stopgap measure until successful preventative was in place.  For me, it did help a bit.  Sometimes I wonder if some of the help it gave me was more the mental hope that I was taking something and just needed to hold on until it kicked in and that made the immediate pain more bearable. 
In any case, I completely agree that narcotics are not a solution - only (if at all, for most people) a stop gap measure for a week or two until more appropriate measures can be put in place...

Sorry, but I also just want to add that we, as a group, may need to consider tempering our reactions to people who post and include narcotics in their treatment plans. 

These people may not be abusers, but simply may be desperate or ignorant about what to do next.  This is a help and support site, people in terrible mental and physical pain come here for help and support.  We can inform and guide about appropriate treatments and guidelines for treatment, but we alienate some of the people who need help the most by immediately antagonizing and jumping on them.

Well, that being said, some of the posters I've seen in the last few months, definitely needed some jumping on, so I guess it's a case by case thing...   ;)

Quote:

These people may not be abusers, but simply may be desperate or ignorant about what to do next.

ABSOLUTELY!  And that is why most of us are only too happy to share our knowledge about what we know and give it to those seeking "what to do next"

The problem with that is,  in SO many cases when we do that...they get defensive, accuse us of being mean, argue their point, rationalize it and then stomp away.  That's when the thread that COULD help and  enlighten...heads south and like Kate says...it happens about every few months.   ::)

Case in point and I don't often talk about my FS contacts, is an e-mail I just got today to my  Family Services inbox. 

This guy wrote me a 3-page book on how Dr.s have not treated his CH well and so he has been treating himself with 90mg. of Morphine and an occasionally he adds 1/4 grain of cocaine up his nose when it gets really bad.  Even before I answered him he got defensive and said he doesn't care what anyone says...this helps him a little and he wanted me to let everyone know in the hopes it could help them. 

I have no idea of how to answer this person except to say..I'm glad something worked for you.  This guys mind is made up and nothing I say is going to change it.   :-/

I try to have empathy with people like him, in his mind, the ONLY thing that will stop this horrible pain is morphine and coke. Any other option, in his mind, means having horrible pain that no one else can ever understand. :'(

An awful place to be, obviously, our goal is to educate people enough that they never find themselves there.

Joe

Let me ask you something, Kirsten. Does "help and support" = total agreement between the helped/supported and the helper/supporter? Or is there, perhaps, a better definition of "help and support?"

Linda_Howell wrote on Aug 17^th, 2010 at 1:17pm:

Quote: These people may not be abusers, but simply may be desperate or ignorant about what to do next. ABSOLUTELY!  And that is why most of us are only too happy to share our knowledge about what we know and give it to those seeking "what to do next" The problem with that is,  in SO many cases when we do that...they get defensive, accuse us of being mean, argue their point, rationalize it and then stomp away.  That's when the thread that COULD help and  enlighten...heads south and like Kate says...it happens about every few months.   ::) Case in point and I don't often talk about my FS contacts, is an e-mail I just got today to my  Family Services inbox.  This guy wrote me a 3-page book on how Dr.s have not treated his CH well and so he has been treating himself with 90mg. of Morphine and an occasionally he adds 1/4 grain of cocaine up his nose when it gets really bad.  Even before I answered him he got defensive and said he doesn't care what anyone says...this helps him a little and he wanted me to let everyone know in the hopes it could help them.  I have no idea of how to answer this person except to say..I'm glad something worked for you.  This guys mind is made up and nothing I say is going to change it.   :-/

thats horrible  :'(

Linda_Howell wrote on Aug 17^th, 2010 at 1:17pm:

... mind is made up and nothing I say is going to change it.

And when this may seem a characteristic even when open and willing to change, but somehow not transpiring,



Guiseppi wrote on Aug 17^th, 2010 at 1:30pm:

Any other option, in his mind, means having horrible pain that no one else can ever understand.

there can be thoughts considered that there is perhaps something being a little too overwhelming convincing going on, operating to prevent change happening just right now.  Even being enslaved by selective thinking.  Wondering if it is the horrible pain added to the fear of the drugs running out that is the continuing need.

All i would say in this matter is to read my thread "Dancing with the devil"Its in the general section locked on the top there
I really dont want anyone ANYONE go trough what i did there.

i find narcotics to trigger my ch, hydrocodone darvocet, codeine, and even otc, aspirin and ibuprofen cause more pain than they relieved, i just went through a surgery on my hip, osteo necrosis intervention implant, cut my leg tothe bone and drilled a 10mm hole from the outside to the near end of the femoral ball, and refused pain killers after the surgery and thescript the doc gave me, i left the hospital 4 hours after i woke from surgery since the only reason id be there was for pain management and i got o2 at home ;) if i have pain worse than a cluster id probably take em, but this surgery was a mosquito bite compared to being mauled by the cluster beast

dont get me wrong some people need them to function and get through theyre day but i find narcotics to be useless in my battle and would never recommend them to any cluster head

AO

I really like this post, Katy... Much more balanced and calm than the reactions some have received regarding opioids for cluster headache in the past.

I think it's important for folks to differentiate between tolerance, dependence, and addiction.  I've seen in the past those things used interchangeably here.

Tolerance = The need for a higher dose of opioid (or narcotic) over time to achieve the same effect because your body has become used to the current dose.

Dependence = The body's physiologic need for the drug.  Your receptors change when you take opioids (narcotics) regularly.  Stopping them after being on them for prolonged periods of time leads to withdrawal symptoms.  This is not addiction.  This happens to everyone who takes opioids for an extended period of time.  It requires careful monitoring by a physician/health care provider to handle when weaning off of opioids in a slow and controlled manner.

Addiction = Psychological need for the drug where the person will do anything to get it, even illegal things.  They may do more subtle things, such as seeing different doctors and getting multiple prescriptions, borrowing drugs from friends and family, or escalating to buying narcotic drugs from those selling them on the street, which is extremely dangerous.  People who are addicted to opioids are no longer using them for pain control alone and are using them to treat a psychological need for the drug, craving, or a belief that they have to have it.

Pain management is definitely a last resort, but some folks find they need it for either CH or maybe for another condition.  It is important to always go to the same physician and pharmacy and follow all instructions.  Report any changes being noted.  If your physician prescribes pain management then fails to follow up properly, a new physician should be found.  The vast majority of cluster headache sufferers have reported no difference to their attacks with it, and then are still in pain while also feeling sleepy or other side effects of these medications.

The use of short-acting opioids (narcotics) is a very dangerous road to travel down in CH.  In all likelihood by the time these kick in, the headache is on its way out for most people.  Also, the frequency of cluster headache attacks makes using short-acting opioids not at all ideal.  Short-acting opioids should also rarely to never be used during a pain management plan.  If the pain isn't controlled, better for the physician to increase the dose of the long acting opioid rather than just slap a short acting over it.  This is what leads people down the path to trouble, as they start taking more and more and are on a roller coaster of the drug in their system.  I hate to see anyone use short acting opioids regularly for cluster headache or actually headaches of any kind unless on an absolute rescue basis as a one-time thing.

Carrie

Quote:

I think it's important for folks to differentiate between tolerance, dependence, and addiction.  I've seen in the past those things used interchangeably here. Tolerance = The need for a higher dose of opioid (or narcotic) over time to achieve the same effect because your body has become used to the current dose. Dependence = The body's physiologic need for the drug.  Your receptors change when you take opioids (narcotics) regularly.  Stopping them after being on them for prolonged periods of time leads to withdrawal symptoms.  This is not addiction.  This happens to everyone who takes opioids for an extended period of time.  It requires careful monitoring by a physician/health care provider to handle when weaning off of opioids in a slow and controlled manner. Addiction = Psychological need for the drug where the person will do anything to get it, even illegal things.  They may do more subtle things, such as seeing different doctors and getting multiple prescriptions, borrowing drugs from friends and family, or escalating to buying narcotic drugs from those selling them on the street, which is extremely dangerous.  People who are addicted to opioids are no longer using them for pain control alone and are using them to treat a psychological need for the drug, craving, or a belief that they have to have it.

Not as much disagreeable as simply requiring more to understand perhaps.  Despite different words used, there seems overlapping possibilities between them. 


Tolerance = The need for a higher dose ...

What is the line decided they may be using these for more than pain control, delineating this need for more from psychological need, physiolical need, or abuse when needing more.  Understandably a word useful with an increasing "end of life" pain.



Dependence = The body's physiologic need ...

This may not reflect an also phychological need developed to overcome when weaning off.



Addiction = Psychological need ...

Excluding any physiological need in addiction can be questionable.  What only seems dissimilar is a matter of legality, otherwise a similar boat floating.

Kevin,

It's a matter of stages....  Those who are addicted also have dependence and often tolerance...

Tolerance is usually associated with the fact that pain control is no longer happening at the current dose.  You are correct - people can lie, and then tolerance can get questioned.  But it's a well-studied phenomenon in chronic pain management - not just end of life pain.

Dependence is physiologic.  This does not mean that people may not have anxiety or other psychological issues when weaning off, but it has absolutely zilch to do with psychological craving.  That's where addiction incorporates dependence, not the other way around.  While a lot of people on chronic pain management regimens never seem to get off them, there are those that do, and they often go through brutal withdrawal.  Is it frustrating and anxiety provoking?  Most definitely.  Do they sometimes question whether or not they are ready and want to hang onto taking the med a bit longer?  Certainly can happen.  Does it mean they were addicted?  No... 

Addiction can incorporate all of the above, but is distinct.  Most people who become dependent on opioids for chronic pain are labeled incorrectly as "addicts" by lay people and even some practitioners.  Addiction is a psychiatric disease outlined by the DSM-IV.  People suffering from addiction still have a physiologic need for the drug as well, since they experience withdrawal, but also a psychologic need for it that rises above the meds usefulness for pain.  They may envision that they need more than they do or be taking it to get high or to treat emotional issues, but it's no longer solely for the reason of treating pain.  Addiction is marked by psychologic, and NOT physiologic, however - that is the distinction.  You aren't an addict if you are just physiologically dependent...

It's a major distinction, and most people screw it up, leading to upsetting stigma.

excellent distinctions and explanations, lizzie!

Thanks Katy, Svenn, and Carrie.  Well reasoned and said.  I can't agree more, nor do I have anything beyond that said to contribute.

Jerry

    I agree with many of you on different points, however that being said, there are a number of sufferer's out there who have not had the wisdom of many of the people on this site, they are in pain and desperately seeking help from the many Uneducated medical professionals, who throw narcotics at them like smarties just to shut them up! Being in this state and not being informed of other options they take them not knowing any better.
    
    I am supporter of a 25 year sufferer who was placed on morphine injections for 2 clusters a few years back, his body was no longer able to cope with large amounts of the triptan's, the many preventatives tried were not effective, O2 was not an option that his Dr supported at the time (he changed his mind with help from this site). After 6 months of 6-8 attacks a day all at kip 8-10, he was very depressed (suicidal) and desperate for some relief, so the Dr prescribed 30mg morphine injections per 2 attacks a day. The first 4 attacks he used 3mg sumatriptan, then 15mg morphine for the other 4 attacks.  As the cluster came to an end and as a responsible supporter, I brought it to his attention that he was having too much morphine and although he didn't appreciate it at the time, I told the DR to cut him off. It was a couple of weeks before he saw my reasoning, I would do anything to help stop the pain but I'm not going to stand by whilst the medications take over. The second cluster that this was again prescribed I didn't have to say a word, he realized there was a problem starting to arise and stopped taking the morphine. I'm so very proud that he had the ability to do this for himself and our family.

     I do believe there is a place for fast acting pain relievers (injections not oral) in the treatment of cluster headaches, all be it a very small place for those who are unable to get relief from certain mainstream medications, such as those who can not use triptan's or use "alternative therapies" like clusterbusters with the correct management and council of their Dr's.

    I would have to say in no uncertain terms that without the morphine at that time, I wouldn't be a supporter of a cluster headache sufferer, I would be a widow of a sufferer! So to all of those people who do have to resort to pain relievers such as morphine injections, you will find no judgement from me.

    I wish you all pain free times but please be warned as with most things the risk that these other well informed members are bringing to your attention, is a problem that is all to real and sometimes harder to come back from than what you're already coping with.

                              Regards Shell :)

Thank you, Carrie.    :)

Addiction goes beyond tolerance and a developed physical need.  The tunnel-vision obsession of its seduction would not relate entirely to an actual physical need, though that may be encompassed.  Psychological support can be essential for quite some time after physical withdrawal.  Long enough to be incorporated internally affecting for hopefully a lifetime afterwards preventing a physically needless return, which would relate to the phychological need of addiction.


'preciate your time and consideration to expand and explain what is perhaps less seeable in brevity to understand without questions.

Quote:

So to all of those people who do have to resort to pain relievers such as morphine injections, you will find no judgement from me.

Oh my...this is NOT about judgement from any of us.  Not at all.  This is about sharing our knowledge about what doesn't work, is very harmful etc.  That is what this site and "US"  are all about.    Helping everyone to be knowledgable about this condition.

If someone said they were taking 3000mg. of Verapamil a day or 10 shots of Imitrex a day, believe me, we would all jump on that and tell that person they are  living VERY dangerously.

Linda_Howell wrote on Aug 19^th, 2010 at 4:20pm:

Quote: So to all of those people who do have to resort to pain relievers such as morphine injections, you will find no judgement from me. Oh my...this is NOT about judgement from any of us.  Not at all.  This is about sharing our knowledge about what doesn't work, is very harmful etc.  That is what this site and "US"  are all about.    Helping everyone to be knowledgable about this condition. If someone said they were taking 3000mg. of Verapamil a day or 10 shots of Imitrex a day, believe me, we would all jump on that and tell that person they are  living VERY dangerously.

Here's the thing though - yes, sharing knowledge and insight and understanding are exactly what this site should (and usually is) all about.  However, unfortunately, it doesn't always seem to happen that way - most particularly when narcotics are involved...

Just a flash back for me, but frankly if it weren't for the compassion and caring of Bejeeber and Bob Johnson, and a couple of others (you know who you are  ;)), I would not be involved in this site after the (lets be honest) mauling that I got when I first posted on this site when desperate and hopeless...   :'(

That said, there are so very very many compassionate and caring people in this site who spend quite a bit of their time using this group as a portal to help others.  I am very glad I didn't just give up on this site (though it was a near thing at first).  And, I do like to think that I've been of some help to some people here...


And, no, Brew, helping/sharing/understanding/compassion/caring/etc, in no way mean being in complete agreement with, nor, in any way, condoning another's behavior.  But it does mean a basic respect and a modicum of empathy (at least until events prove otherwise) about the kind of mental and physical pain that the posters on this board may be going through at the time of their posting...

Lettucehead wrote on Aug 19^th, 2010 at 9:21pm:

Linda_Howell wrote on Aug 19th, 2010 at 4:20pm: Quote: So to all of those people who do have to resort to pain relievers such as morphine injections, you will find no judgement from me. Oh my...this is NOT about judgement from any of us.  Not at all.  This is about sharing our knowledge about what doesn't work, is very harmful etc.  That is what this site and "US"  are all about.    Helping everyone to be knowledgable about this condition. If someone said they were taking 3000mg. of Verapamil a day or 10 shots of Imitrex a day, believe me, we would all jump on that and tell that person they are  living VERY dangerously. Here's the thing though - yes, sharing knowledge and insight and understanding are exactly what this site should (and usually is) all about.  However, unfortunately, it doesn't always seem to happen that way - most particularly when narcotics are involved... Just a flash back for me, but frankly if it weren't for the compassion and caring of Bejeeber and Bob Johnson, and a couple of others (you know who you are  ;)), I would not be involved in this site after the (lets be honest) mauling that I got when I first posted on this site when desperate and hopeless...   :'( That said, there are so very very many compassionate and caring people in this site who spend quite a bit of their time using this group as a portal to help others.  I am very glad I didn't just give up on this site (though it was a near thing at first).  And, I do like to think that I've been of some help to some people here... And, no, Brew, helping/sharing/understanding/compassion/caring/etc, in no way mean being in complete agreement with, nor, in any way, condoning another's behavior.  But it does mean a basic respect and a modicum of empathy (at least until events prove otherwise) about the kind of mental and physical pain that the posters on this board may be going through at the time of their posting...

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  Just so there ain't no mistaken who took her to task and why.

                    Potter

I wish more people would call it as they see it instead of being worried about shrouding intent and coddling perceived fragility.

If people are going to ask questions, they should be prepared for the answers. This isn't Romper Room.

No this isn't Romper Room. It's a support room or it is supposed to be.

The problem with calling it how you see it is that many times we don't see it. Many times we jump to a conclusion and others go with it only to find out later it was a wrong conclusion.

Most of us don't pay any attention to the number of posts we have but a newbie does and when they get slammed or talked down to or told they are full of shit after their very first post they either leave or attack back...which causes others to get on the band wagon.

I have made snap judgements before and found later that I was wrong. So I try to be supportive to all newbies. If they are here with other motives, it doesn't take long to see it and handle it.

Lettucehead was one that I judged way too early and as far as I can tell, has been the last one. But probably not.

One thing about clusterheads..Sometime we are just in a pissed off mood.

People calling it how they see it with no regard to someones percieved fragility it how the board got where it was a couple of years ago. Thats not going to happen again.

(Now if I had just practiced what I preach, I would have waited until I was in a better mood to respond.) :)

In the past Ive been told "I'm too honest" for saying it like it is, and that some people can't handle that. I do agree that if you ask then you should be prepared for the answers, the problem seems to stem from the tone (style) of the answers received. The terminology "suicide headache" (which I know a lot of members despise) seems to me to indicate that a certain level of coddling perceived fragility would be appropriate when people are already so Fragile/desperate/hurt. I agree this isn't romper room, but I don't want the people who need the help and support the most from this community to feel like their going to be jumped on either or attacked for even mentioning narcotics.
                                  Regards Shell :)

Obviously from prior posts, most of you know I'm with Jimi on this one. In the past, we had board members who were self proclaimed troll hunters who would absolutely humiliate and abuse any poster they suspected wasn't a clear cut CH'er. Once the feeding frenzy began, the poor newbie was soon driven off the board, sadly, many never returned.

I see people post in reponse, people shouldn't be "wimps", they should learn to "take it like a man," the internet is an open forum if you come here you should expect no "coddling."  My question, what is the harm if someone who doesn't have CH wanders in here for a while. Whether they have malicious intentions or not, they show their faces quickly enough and are dealt with.

How sad to think of the people in pain who have turned to this community, inadvertently said something "non CH appropriate" and been driven away. Now their only chance for help is the medical field which sadly, has not kept pace with current treatments.

Off my soap box now, ;D  if you feel the need to be mean to somebody, send me a nasty PM! But let's give the newbies a week or 2 before we jump them! ;)

Joe

Revisiting here, I clicked on the link Potter included to understand the opinions, particularly because Kirsten has done some fine posting and seemed additionally an appealing voice in many ways.

I see now why I avoided even opening the thread to read, and agree with George being the one to call it like it is, wisely closing it, and fairly, without resulting sanctioned repurcussions.  That takes experience.  As Jimi mentioned, "how the board got where it was a couple of years ago. Thats not going to happen again."  It may sometimes seem, no matter how many people one may have attempted to help, it's the one that may have been wrongly chased off that can linger cumbersome in memory.  Anyway, I'm glad Kirsten didn't leave.  The subject matter has a very sensitive nature.

Wherever possible, I attempt abbreviated reading for others, but would like to relate a similar introductory experience.  A recounting by another, brighter, in all chances could be more synoptic.  An expectation that might miss an intended mark, and laborous, or you just haven't paid attention to my limited abilities.

Within days of first discovery of this site, I read a thread started by a pregnant woman asking for advice with options dealing with this pain level, it seems she wanted to do the right thing.  After several posts congratulating her on a new arrival, I realized she was in the kind of pain that was too familiar to me and waited and watched, there wasn't a single answer. 

I pulled out my "Conquering Headache" book, mind you a 1998 publishing by the combined knowledge of Alan Rapoport and Fred Sheftell, who need no introduction and a Second Revised Edition, influencing me this is still their opinion.  Looking under treatment while pregnant, it stated there was insufficient information available about the effect of sumatriptan.  Their opinion of the time was that fiorcet was acceptable, and I see Kirsten was conservative, willing to suffer due to her reservations.

Innocently posting what I thought might be a helpful comment from regarded experts since a prolonged watch and wait period had yet produced any reply acknowledging this complex suffering situation, it was challenging, but where else to ask of experience but here.  Even experts seemed to have a fiddle-faddle answer.  Incidently, the book had no mention of oxygen, which I wasn't onto yet and was obviously unqualified to recommend.

Needless to say, a very stern reaction was met insinuating stupidity.   Nope, wasn't Romper Room.  'Course I can see being potentially rejected for the show or security tossing me in an alley in short time anyway.  Visitiing Santa on TV at Christmastime left me pissed off before I was five, and I turned around and let him know.

Whatever.  I mentioned no one had answered her plea (I was very acquainted with CH suffering) and revealed where I got the information from, gave back some words not from pursed lips, but ended conceding I was wrong.  Had I not read this from a source picked up in the waiting room of a neurologist and finding it an amazing defining, finally an identification, like the feeling some feel when first finding this site.  I could have hesitated posting, but felt SOMETHING needed to be said attempting to help.

There were a couple friendly posts in the aftermath, I was thankful for their understanding. 

Just to add, surprisingly unforeseeable, I became close friends with the one who seemed rabidly antagonist at the time.  We even became very close, planning to attend the first Atlanta convention together.  The distant logistics involved were not insurmountable, but I think I didn't quite feel an adequate enough companionship developed within what was yet a close-knit group at the time for days of comingling.  Seeing afterward who attended, it's now an unduplicated opportunity foregone. 

The new-found friend had a good time I was happy to see.  We met in Nashville, she shared a roomful with sisters of mischief. we had a company together of a natural comfortableness .  Fortunately, hardly a better place than to have the room next door.  An OUCH award-winning recipient of friendly posting, her final good-bye from the hotel was non-stop and waved with constant eye-contact from the airport shuttle until no longer in sight.


I thank Bob for giving us updated stuff concerning this, and also can see recommending oxygen if posting.  As I mentioned, it can be a sensitive issue.  I've no adversity to the responses, but having been there, I understand the thoughts teetering of a newbie not intending harm.  Glad I'm not a moderator, but their responses have been proudly appropriate in many regards.

Thank you so much for having this post up. I am new to the forum as of tonight, and the doctors just seem to want to pump me full of painkillers. I have a bad personal history with family members and narcotics. I will admit, over the past week I have been using them, but that's only because I don't seem to have another option right now. In the beginning I refused to take them, but the pain has gotten so bad, and I don't know what else to do at this point. I am waiting for an appointment with a neurologist, but is there anything I can do until then? I've tried ibuprophen, but it doesn't touch it, and I'm severely allergic to tylenol. I just need something to help me make it to my appointment. This has been going on now for 13 days, and I am at my wits end already.

scubaheather wrote on Aug 22^nd, 2010 at 11:58pm:

Thank you so much for having this post up. I am new to the forum as of tonight, and the doctors just seem to want to pump me full of painkillers. I have a bad personal history with family members and narcotics. I will admit, over the past week I have been using them, but that's only because I don't seem to have another option right now. In the beginning I refused to take them, but the pain has gotten so bad, and I don't know what else to do at this point. I am waiting for an appointment with a neurologist, but is there anything I can do until then? I've tried ibuprophen, but it doesn't touch it, and I'm severely allergic to tylenol. I just need something to help me make it to my appointment. This has been going on now for 13 days, and I am at my wits end already.

You're welcome.   Welcome to the board!   :)

The hardest part, I think, is learning to be proactive.   When I first got diagnosed both I and my doctor seemed to think she could just give me some medicine and make them go away.  It doesn't work like that and adjusting my expectations was difficult. 

Medicines to treat the immediate headache help a little, preventitive meds help a little, supplements and oxygen help a little.  Combining them all helps a lot but it's still pretty rare for the combinations to put you into remission.

There is some really great information in the links on the side about medicines.  You should read all of it.  ESPECIALLY the parts about Imitrex and Oxygen, which are what seem to help the most around here.

In the very short term, one over the counter thing that can help is an energy drink like redbull.  The caffeine helps, the taurine probably does too.  Drink one as quickly as you can at the very first sign of a headache.   I find it's hard to drink something carbonated so quickly and the redbull "shots" are easier.  If you're truly at your wit's end, the redbull  will also help the pain medicine your doctor gave you to work better. 

If you absolutely don't want to take pain medications in the time before your appointment,  you can go to the emergency room or a walk in clinic.  Take your prescriptions with you and explain you really don't want to take a narcotic because of family history, you want to try imitrex and oxygen.  Print out the information and take it with you if it will help.  Many people have commented that it's very important to take these at the first sign of a headache or they are not as effective.

Also:  Read the threads about natural over the counter supplements- there's one called Kilowatt3! that immediately comes to mind.  Those supplements are cheap, over the counter, and fairly effective at reducing the number and severity of headaches for many.  You can start that tonight if you have a well stocked 24 hour pharmacy or a large grocery store that's open late with a big health/supplement section.

Good luck!

Bump for foolclip281.

"When I first got diagnosed both I and my doctor seemed to think she could just give me some medicine and make them go away.  It doesn't work like that and adjusting my expectations was difficult."
(*Sorry - not sure how to do the 'quote' thing yet!*)

I'm currently in my first cluster, (nearly 3 weeks in with daily headaches, usually killers at night and shadows in the day) and have been prescribed injectable Imigran.

My hope - perhaps naive - is that before too long, the headaches will go away, and then the medicine can be locked away in case they come back in the future.

Reading this thread, perhaps I am being horribly naive.  I don't like injecting, and the thought of not having to inject makes me happy, but when I do have a bad attack, the meds work within 10 mins to make it go away completely.  At this stage, I would not take more than one dose in a day, even if I had a second attack (which has happened) - I can cope during daylight hours, but the pain at night is worse because you simply do not have the same things to distract you (I'd estimate my worst pain as a 8 or 9).

This treatment is working for me for the moment without any obvious side effects, and narcotics are my first port of call.  I'm in the UK, so prescriptions are cheap.

At this stage, is common belief of this site's users that I should be looking at non-narcotic techniques, or am I just so early in my CH experience (and hoping to go no further) that this does not quite apply to me?  I notice that when people are talking about addiction to meds, it is usually painkillers rather than Imigran, for example.

Sorry to sound so ignorant - I'm new to this so don't have years of expertise to call upon, but would appreciate input from others who have been in the same position.

You don't mention oxygen in any of your eight posts.  Get on board.

          Potter

My doc suggested that oxygen might work, but with the NHS in the UK, getting it takes time - and he figured I might well be out of the cluster by the time it had been ordered and delivered.  The meds were an immediate answer and provide me with the security of knowing that if I have an attack whilst I am out and about, I can self-medicate for quick relief.

Long-term (if I have a long-term problem), oxygen might be an answer - I agree - but for me, convenience is important, too.  I've also suffered with migraines in the past, and whilst several hours of sleep is the most effective 'cure', if I'm on the road and trying to get home, you can't beat Zomig and a quick nap.

I acknowledge that I am lucky that cluster headaches do not control my life - daytime attacks are rarely much beyond me getting very grouchy and unpleasant to be around, but no agony. 

My question is whether narcotics, in some cases, might be the only remedy required - and are a reasonably safe and practical solution.

I may have mis understood you so do correct me! Imigran is not a narcotic, and doesn't have the addictive dangers associated with narcotics. Many of us use imitrex injections on cycle. While I am one of the people who believes there is a potential for imitrex extending a cycle, when I'm getting my butt kicked, I am quick to inject!

Do start looking into 02 now. Hopefully your cycle is drawing to a close and you won't need it this round. If you do all the footwork now, when the next cycle starts, you should onnly be a phone call or two from having 02 delivered.

Additionally, look at some of the prevent meds available, Verapamil, Lithium, Topomax, that can reduce the number of attacks you get. If it is CH you have, it never really "goes away"...just lies dormant waiting for you to drop your guard. ;)

Joe

duffield1 wrote on Oct 6^th, 2010 at 10:53am:

Imigran ...  This treatment is working for me for the moment without any obvious side effects, and narcotics are my first port of call.  At this stage, is common belief of this site's users that I should be looking at non-narcotic techniques, or am I just so early in my CH experience (and hoping to go no further) that this does not quite apply to me?

Imigran (or Imitrex) is not a painkiller or a narcotic, it's another class of medications entirely -- triptans.

And yes, not starting with narcotics most definitely applies to you as a newbie, for all of the reasons that I outlined above.  Other medications are much more effective. 

It's really important that you read the medical information link on the left.  You need a preventative, that lessons the amount and severity of attacks, and you need something to end an attack quickly.  The safest and most effective thing for most of is is oxygen.  It's one of the yellow links on the left.  Please read all of it and discuss the information with your doctor.

I guess I have shown my ignorance by not knowing the difference between a narcotic and a triptan!  The leaflet about the meds doesn't mention if it is addictive or not - I guess that this is perhaps one of the safer meds (or am I being naive again?)

I'm being as careful as I can about what I take - I also take a low daily dose of propanolanol to keep migraines at bay.

I haven't got a clue how long my cluster will last - I had a day almost pain free over the weekend, but had another stonker last night!

I'll ask the doc to set the wheels in motion for getting oxygen.  Although I don't have to pay for the meds, I am concerned about how much I am costing the NHS (National Health Service), so if oxygen is more cost effective, I'm happy to give it a go!

Thanks for humouring me!

Quote:

I guess I have shown my ignorance by not knowing the difference between a narcotic and a triptan!

No, not ignorance at all.  Not knowing the differance suggests to me that you are not a druggie and that is a good thing.   ;)

Imitrex is NOT addictive, but it does have a tendancy to prolong cycles or cause rebound headaches if taken too often.  That said..Imitrex is a God-send for those times when 02 just isn't available, you're out in public or at work and need to abort NOW!

I know from others here in the UK that they cannot refuse you oxygen there.  Why should they anyway?  Compared to the other meds we take...02 is very cheap, and safe, no matter what side of the pond you're on.

We're here to answer any questions you may have, so please don't feel we are "humoring" you in the slightest.  (sorry.  HUMOURING)  ;)

Anyway, welcome to our world Duffield. 


Linda

I was new to this board (and CH) a few months ago and I found you all to be pretty helpful. I was horrified when I first read the oh so familiar symptoms and the prospect of living with CH seemed like the end of the world. But you guys showed it can be done and that was relief in itself and you have bucket loads of advice too.

Honest works as you can't really dress up CH 'cos it hurts like hell and will continue to. Whats needed is the info to to start beating it but with conscienciousness. We all know how hard it can be emotionally and you were all newbs once. Shell put it right IMO, a balance between sensitivity and coddling is needed and when I joined I thought you all were spot on.

I think it's also worth noting you don't need to sign in to use this forum if you wanted info for malicious use as you can view as a guest anyway. And there are other sites and pages offering vids of attacks and all sorts of stuff.

As for the narcotics I agree it should be a last resort with all the other more effective options but not jumped on. I was eating painkillers, whatever I could find (not morphine or anything that strong) but gave up as soon as I found they would never work. But that was through learning and reading what has been put out there (mostly here) and I started to try and get what I needed. But we are all different and react differently to advice. Point is when your desperate and don't know whats wrong or what you need you might be scared to leave the meds and risk it getting worse. That's where your knowledge comes in and I am personally grateful you shared it. I hope everyone continues to accept that you are trying to help and the help continues.

Welcome duffield  :)

I just took a peak at this thread and noticed my post  from this afternoon--and bunch of others are now gone.  Potter judges me; I comment on it and my post is tossed out.  When I was a judge for several years, I used to be to do something about such conduct.  Here, I can only chuckle and be on my way.  BTW, Potter, the type of thinking you displayed in our interactions is commonly described as lazy or disingenuous.  Why you cannot accept that I am not an addict and can use narcotics as prescribed and beneficially for CH, I don't know, but I can.  I am on an end of the Bell Curve that you refuse to acknowledge exists.  When I was a judge I acknowledged such lazy and narrow thinking by routinely awarding victories to the opposition.  Open your mind.  It won't hurt.

duffield1 wrote on Oct 6^th, 2010 at 5:15pm:

I guess I have shown my ignorance by not knowing the difference between a narcotic and a triptan!  The leaflet about the meds doesn't mention if it is addictive or not - I guess that this is perhaps one of the safer meds (or am I being naive again?) I'm being as careful as I can about what I take - I also take a low daily dose of propanolanol to keep migraines at bay. I haven't got a clue how long my cluster will last - I had a day almost pain free over the weekend, but had another stonker last night! I'll ask the doc to set the wheels in motion for getting oxygen.  Although I don't have to pay for the meds, I am concerned about how much I am costing the NHS (National Health Service), so if oxygen is more cost effective, I'm happy to give it a go! Thanks for humouring me!

Duffield,

Welcome aboard!  Sure wish you weren't here!

Don't worry about ignorance.  I display mine regularly.  Ignorance is merely no knowing.  Being ignorant is not a problem.  Remaining ignorant is.  If you stay around here very long, and I would recommend you stay even when not in cycle, you will learn.  Knowledge gives power.  It also gives you the opportunity to help the next ignorant one who comes along.  I fought these things for over 20 years before I found this site.  I WAS ignorant, and there was no hiding it.  I'm still not smart, but I have learned to deal with the beast so that I don't have to fear. 

Please don't be afraid to ask questions or to display your ignorance.  When you are willing to do so is when you can begin to learn.  When I teach I always direct direct questions to my students until I get an honest "I don't know." because that is when they will learn.  To often we want to be proud and not reveal that we don't have all the answers and we suffer needlessly for it.

Jerry

reptile wrote on Oct 7^th, 2010 at 10:52pm:

I just took a peak at this thread and noticed my post  from this afternoon--and bunch of others are now gone.  Potter judges me; I comment on it and my post is tossed out.  When I was a judge for several years, I used to be to do something about such conduct.  Here, I can only chuckle and be on my way.

I assume this last was directed toward mods or admins, since we're the ones who might, presumably, remove someone's posts.  After all--we're the only ones who can.

We don't do that.  Nothing has been "tossed out".  I think you'll discover that your posts are all present, albeit spread over the three or four threads you've chosen to contribute to.  Clicking on your profile, and searching your previous posts will reveal them.

Thoroughly checking the facts before rendering an opinion seems a judicious thing to do. 

Best,

George   

Except in the instance of a troll I've never, not once seen a post removed by the mods nor DJ .  I've perused all your posts  from the first thru your last and in a preponderance of them you refer to  narcotics even though you claim that oxygen works for you.  Stick with oxygen and your life will improve.

          Potter

I want to assure you, as George has, the moderators are NOT removing posts. We have the authority to hide and lock posts when they get out of control and violate board rules, then DJ makes the final call. No such action has been taken on any of your posts, I think you'll locate them using George's suggestion.

Joe

Starting out many years ago unable to get enough Imitrex for the numerous daily hits, a first prescription to fill in was a certain type of pain killer.  At the time, it helped. 

But it was funny how those who knew me very well, the girl and family, would know immediately when I had taken them.  For me, importantly, pain was relieved and the world was alright again for the time being.

With a job that involved intensive people contact, I became aware job performance reflected some shortcomings, accepted strangely to me.   There's was certainly no need to remove any of your posts. 



Quote:

Here, I can only chuckle and be on my way.

Those that didn't really care chuckled and moved on.  The ones that cared mentioned something I may not have liked to hear.  If listening to what's perceived trash talk may throw off your acumen, realize and get a hold, man.  It can be living with fun when among friends, and those are the enjoyed smiles and chuckles. 

I don't intend to ride a fence here.  Having an open mind and disingenious can go both ways.  I'd pretty much guarantee those here aren't out to do the same and chuckle you away.





Bob P sucks.       ;)

ok could someone name these narcotics so i can understand what the discussion is about.

black wrote on Oct 8^th, 2010 at 2:02am:

ok could someone name these narcotics so i can understand what the discussion is about.

Whatever they may be it was transitional due to unfamiliarity and can not grasp its outcome of continuance, effective only with first beginning cycles.  I found this site, a better neuro, prevent, and oxygen, ending all around better ... by reading here and listening, unfettered by how it was stated.  Sometimes sense can seem strange, as reading of such success with clusterbusters was in reversion, which DJ doggedly and thankfully remained smartly unremarked about here for so long.

Black, both of these threads are addressing the use of pain killing narcotics, as a primary or even secondary treatment of CH. Not any specific narcotic, just the whole class of pain killing narcotics.

Joe

I've seen several posts about the use of narcotics in my short time here. I'm certain those of you who have been here forever have seen many more. It does seem to me there are two sorts who post and look for posts on pain meds: first, those who are looking for some kind of permission to sedate themselves. This includes those who have had enough of pain and just want an escape-me, from time to time over the years; and second, those who are looking for a good attack method and discover the love/hate relationship our medical community have for narcotics, only to discover they don't work on CHs as a rule.

I think it's important to be cautious with the first sort, and compassionate toward the second. I also believe we have walked this tightrope very well.

Joe, you said it another thread. If (and this is by no means a small number of us) one has any experience with the abuse of narcotics in our own lives, or in the lives of loved ones, we are very concerned with those who come to us in desperation. Pain meds can be a wonderful thing, but demonic as well.

Please let us continue as we have been. Supportive, and yet careful, in how we address this very difficult issue. Once again, my friends, I think you are doing a great job. Blessings. lance

Quote:

I want to assure you, as George has, the moderators are NOT removing posts. We have the authority to hide and lock posts when they get out of control and violate board rules, then DJ makes the final call. No such action has been taken on any of your posts, I think you'll locate them using George's suggestion.

AND...everyone here has the ability to delete their "OWN" posts.  Not someone elses but their own.   

Bump for Lydia.  Narcotics do work for some people, and when you're in nonstop mode and at the end of your rope it's totally worth it.  You might want to spend some time exploring which narcotics are safer though - my neuro was pushing methadone on me for a while (it's inexpensive), but it's frequently deadly (a Seattle newspaper just won an award for showing how deadly it is), so be very very careful please, and think hard about how many bad headaches you can put up with a day to avoid dependency issues (dependency is not the same thing as addiction, which has an emotional component).

I have been recently prescribed hydrocodone/acetaminophen, but not for CH.  I took it with antibiotics for a possible ear infection post-surgery (and some incredible, CH-producing ear pain).  This coincidental use of narcotics during a CH made it clear that for me, narcotics aren't going to help.

My ear felt fine.  The knife was still embedded in my eyeball, however.  :'(

Thanks Katherine, They don't take away the pain completely in pill form at the ER they work threw IV sometimes.  But they Knock me out so i can can TRY and sleep threw the pain. I unfortunately jinxed myself yesterday and said i thought i was getting relief from the Verapamil and the D3 regimen. But the CH are back again (but i got like a 3 day break !!) since 8pm last night i have had 3 2hour k-8 i gave in last night and took one of the daliadid because i needed to try and sleep a little for work today but im trying to just be tough. But my nausea is getting the best of me now and my Zofran doesn't seem to be able any match to it. I have been trying the oxygen but its not helping because there going from nothing to k-8 in no time. =( this sucks.

In my time in the military, it's pretty rare that I get seen by a doctor who knows how to treat cluster headaches.  When I tell them that I'm on Verapamil and I want a Prednisone taper, they act like I'm a junkie in for a fix.  It's really annoying.  Today, I had to call a doctor an not a very nice person, because he assumed that I was fishing for narcotics--on a deployment no less.  He straight-up asked me, "so what, you want a handful of oxycontin?"  I told him "no not a very nice person, they probably wouldn't work anyway."  I was just coming off of a headache, so I might have been a little rude...but no less, it's aggrevating.  I don't think it's too much to ask that doctors take an interest in what kind of meds their patients are asking about, and why, before they rush to judgement and just assume that we're all junkies.  Even if Prednisone were the kind of steroid that could get me all Barry Bonds-level strong, one look at my physique would probably dissuade you from that opinion... 

My dad had clusters for a long time when I was a kid, so I tend to ask him a lot of questions about how he dealt with his, and he said that percocets wouldn't even touch them, so I haven't ever really tried narcotics.  When I feel like I'm taking too many triptans, I always think about how he would have dealt with it--he never had the benefit of Imitrex or Maxalt, he just bore down and dealt with them.  I don't think he ever really even went to the doctor, unless he was getting like 6 in a day.  When I think about that, it makes me feel stronger, like I can handle the pain more than I think I can--gives me the strength to cope with it.  Then, after it goes away and I didn't take any triptans, I feel like I really accomplished something.