CH and Rationality...
Some of you will know from reading my posts that I can be very blunt.
Such is the existence of the long term CH patient...
I do not physically have the time to beat around the bush - too many CH attacks/not enough time... So, in the context of all my posts so far, I will call this one how I see it.
I am a living example of mood swings and major shifts in thinking, thanks to CH (and the 50 odd drug trials). I do not make excuses for my behaviour whilst experiencing CH, I have it pretty bad now, and my rationale is again departing. After 30 years of this, I am over it. What choice do I have?
Onto our newbie DDAY2 - I hope I can be of some help.
Please check out my posts for links to documentation (if you can see straight for long enough, sorry mate.)
It disturbs me seeing an individual so near the end of their rope with only ER as a source of primary medical care. Some serious medical intervention is needed.
The right piece of paper with the right things written on it needs to hit the right desk somewhere in our Health System. Pronto.
No one will be questioning anyone's pain with proper diagnoses under your arm.
I will repeat my past posts here when I say: ER staff are not trained to deal with CH. They are trained for immediate life-threatening acute trauma. ER staff do not deal well with CH. In their particular work environment, if you do not constitute a medical emergency, or a threat to your own or someone else's life - you will be parked in a hallway for half a day and sent home with a couple of Aspirin.
"Experience" with CH whilst in ER may constitute a 15 minute blast of Oxygen through the wrong mask, if you are lucky.
No one ever died from a "Headache" they tell me in ER. But my pain management specialist insists that unmedicated chronic, acute pain can be a life threatening disease in itself and should be treated as such. ER will give you a good solid wall to bash your head against if nothing else. Maybe some security guards sitting on top of you after you try to reiterate the validity of your claims to be in severe pain. I found ER a good place for my faculties to have departed entirely, which was counter productive for all concerned in the long run.
Short version: forget ER. Get some pieces of paper moving.
ER will only become useful when you are provided with at least 15 minutes of 1 on 1 discussion with a specialist. In this case, I would assume a Neurologist.
2 ways to present before a Neurologist:
1. The ER wait and unlikely occurrence that a Neuro will see you on short notice, then refer you into the hospital system as an outpatient.
2. GP referral. If you already know what CH is and have a diagnosis, get referred into hospital by a GP.
Keep hammering down doors of GPs until you find a "CH aware" GP. A rare occurrence I know. In the short term seek referral to a specialist and see what a GP can prescribe for you. There are many Pharmaceutical options available through a GP and a local Pharmacist. Imigran, Verapamil etc. etc. (See medications and treatments)
See what some other users on here have to offer. I don't have many answers.
If DDAY2 is as pissed off as he seems I would steer clear of Prednisolone.
It is a steroid and can make aggressive people worse (me...)
Deterioration of psychological state...
When I deal with my specialist we talk about many things relating to CH. But we always come back to 2 main states of mind at play in CH. - ON or OFF.
1. ON - A patient in the midst of the worst series of CH attacks (seemingly ever...) is almost always willing to try anything. Rationality has departed, left the building. Logical thought has disintegrated. Desperation rules thought processes and decision making.
I can't speak for everyone out there, but I will bet nearly every chronic and severe CH patient has considered drastic options from destructive surgeries to banging their heads against rocks, whilst in the grip of CH. This is probably the worst time in life to make major decisions about irreversible and destructive brain surgeries.
Clarity of thought and good judgement is necessary at some points in life - considering experimental brain surgery is one of those occasions.
2. OFF - A patient returns to CH remission for a period of a few months or more. Their psychological stability will return and their willingness to undergo destructive surgery will proportionally decline. After all, who would be inclined to undergo such serious surgery when feeling well?
Some will go ahead and have procedures carried out at this point. Most will steer clear of an opportunity for surgery at this point, because they are feeling well and get on with their lives.
No CH sufferer can forget the intensity of pain, but when in remission, steering clear of surgery suddenly seems quite "normal" rational behaviour...
Swinging between these two states of mind has been a very long and harrowing process for me. When the CH attacks really hit, my psychological state rapidly deteriorates. There is nothing on Earth I would not do to relieve a force 10 CH attack. When capable of actually having a thought - I have many thoughts on what I could do to relieve the pain, some involving power tools or boulders...
This is not what I would call a "sound" or very "rational" period in my thought processes.
This is the time to put myself in cotton wool and someone else in the driver's seat.
Definitely not the appropriate time for serious consideration of life-altering experimental brain surgery.
If I get 2 months relief, I am usually seeing my specialist, kind of exploiting a "window" in my CH where robust and rational thought has temporarily returned. It is important for my "CH free brain" to look at treatment options without being under the duress and impaired judgement of chronic, severe pain. We look at all the nerve blocks, stimulators, implants, radiology and surgery options - and you know what? I would not go through with any of them. Seemingly 5 minutes after my last CH, I immediately dismiss surgery as an option.
At the same time, I am quaking in fear of the next round of CH... Go figure???
And so it goes, the paradoxical swinging back and forth between intense CH coupled with the desire to do ANYTHING to rectify it. Then back to a state of CH remission, poring over clinical trial results, surgical procedure outcomes etc. reluctantly looking for a viable way out.
It takes a very long time to have reached this point. To even consider surgery, I would need to have done the right thing by my family, friends, doctors and myself and have tried everything, explored all options. Self education is important. Racing into surgery without exploring all medical and pharmaceutical options does happen. I would urge any CH patient to seek more medical opinions, do more research and equip themselves with the actual hard evidence (trial results) that surgery for CH may work for them.
My point is: Make sure you have your head firmly screwed on before you let someone else have a go at screwing it off...
I recently read one case history of a persistent woman in her 30s who had endured diagnosed CH for less than 2 years. She had tried Topamax for a period of months and it had failed. At this point, the boffins in Neurology saw fit to "Glove and Gown", do the scrub down and wheel her in for surgery severing nerves in the brain. The operation was unsuccessful, as many are. She was left with significant deficit in quality of life and no reduction in CH pain. (I will see if I can locate the case study)
I am not here to debate the merit or efficacy of surgery, or any other options that I have not yet tried. Nor call her individual circumstances into question. Merely to point out that you can have your brain operated on after as little as 2 years with CH after only having tried 1 or 2 medications.
That is what I call lack of patient education. I think she had a right to know all other treatment options before she was deemed "Intractable" and summarily botched.
Patients deserve better than this. She had the right to make an informed decision.
I wouldn't want to see this repeat on our friend "DDAY2" here, simply for lack of explored options...
This would have been done to me by now if I had let them. I was ready to roll on nerve surgery, assessed, all ready to go. I went into remission, and then declined the surgery. Then months later a specialist asked me an innocent enough question: "Does your Headache ever change sides of the head?" I thought back and - yes. I have had about 3 or 4 CH attacks that were bilateral.
Straight away I was ruled out as a candidate for nerve severance. Due to the possibility that the pain would shift to the other side of the head. (A common problem)
One simple question asked months after the date of my proposed nerve op. The outcomes could have been so different for me if I had been hasty and pushed harder for surgery...
So, DDAY2, I would suggest getting yourself in front of as many doctors as possible - you will find help. In the meantime, freaking out is not going to help. In my 30 year experience "Freaking out" neither induced nor aborted an attack. It has on occasion induced the attention of the security agencies that frequent ER clinics. It tends to "Freak out" the nursing staff, which can in turn, make your stay much "Less pleasurable" if you want to play with them...
I found headache diaries counter productive. They are very necessary for initial specialist investigation and you will need one. But after many years of "Counting the days" it can only help to reiterate how bad your suffering is. Counting never solved anything for me, just pointed out the depth of the hole I was in at the time.
It starts to feel like marking off the days in Alcatraz. Especially as I have had a total 18 months of combined remission since 1996.
There is no end in sight.
I have been discouraged from writing a CH diary these days, it is a waste of my very limited "CH free" time. So long as I can give an accurate account of the last few weeks, specialists have all the information they need to treat my current circumstances. The older info gradually becomes irrelevant for treatment purposes.
This is not a Federal court case, even though it can feel like one if nobody believes you, or keeps questioning you. It is important to be listened to, believed and treated. I know a lot of nursing staff, doctors and specialists can be dismissive, but you have nothing to prove. You know you have CH, let them prove otherwise. Make them state that you are "well", rather than you having to feel like you need to "Prove" that you are unwell. This usually gets some attention and some people into gear when a report like that is requested of them.
It has taken me a very long time, a LOT of practice and eternal vigilance to separate my psychological condition or state (Freaking out) from my actual primary medical condition (CH Head pain). Now I can calmly walk into a hospital and reason with an unreasonable system, whilst I have CH. I am courteous, polite and calm at all times. Things move a lot quicker for everyone when I behave like this. I have become very patient. If I get into a disagreement with nursing staff (Example: they take my Imigran injectors off me) I just outlast the bastards. I stay through the next shift change and the next and so on. Some drunken idiot will come in and keep nursing staff occupied with injuries anyway, then maybe a Neurologist will fall over you in the hallway - stranger things have happened...
"Patient" becomes a mode of instruction rather than a label at this point.
ER can be a way in, but a tedious exercise in alienation and self doubt is more probable, in my opinion.
Waiting is now one of my professional occupations...
I used to be this pissed off too DDAY2. Possibly more. Many heads have rolled.
You know what? I had to suffer not only the all encompassing pain of CH for 30 years, but a good 20 years of being pissed off about it was my second undiagnosed condition.
I am 35 now - that's a lot of being pissed off.
CH is no one's fault. There is no one individual or thing you can blame it on.
You really have 2 choices: a hard life with CH or an even harder one being pissed off with CH all the time.
I know you may not agree with my approach (or lack thereof). I am here to help.
PM me anytime if you want to talk off the forums.
It is hard to know exactly where you are in the CH journey without direct discussion.
Please, take it easy and hang in there.
My CH has not allowed me to train, have a house, job, car, wife, kids, medical insurance or any other trappings of the working person. In my case, it is a full-time lifelong disability.
I am no longer pissed off with it.
Things could be worse.
Cheers, Ben.
This post was edited on 24/03/2011 at 11:59 am
