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.

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



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...

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.

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

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.

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


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!

"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.

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.

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


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.

Quote:


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 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.

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


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