Belle,
Great news that you are not taking that list.
It does alarm me that the level of supervision is left up to you.
There is a very small margin for error with that pile of scripts.
I hope you have follow up specialist supervision, for when you do get to those scripts.
Being left alone to conduct your own trials, with a set of written instructions is bad practice, you will need safety monitoring and feedback from specialists.
In itself, that list comprises perhaps the worst of the worst drugs for CH.
I've tried them all extensively, except the stematil and the Maxalt.
Maxalon, taken at onset of attack, can reduce Nausea.
I use it quite a bit, but with practice, vomiting becomes less of an issue.
Because I had a highly skilled headache specialist prescribing later on in my drug trialing career, I only had to try one Triptan - Imigran (Sumatriptan).
It works for me and most CHers.
It is the fastest acting of the Triptan group, though the nasal spray only comes in 2 packs, so you may have trouble getting supply and it can get expensive too.
I didn't think much of the nasal spray to tell you the truth.
Give me an Imigran FDT tablet and 25-35 minutes and I'm pain free.
Give me an Imigran injection and it begins to work in 5 minutes flat.
Without it, my attacks go on for 3 hours.
The speed of CH onset in my case will determine severity, which in turn will determine which mode of delivery I choose when using Imigran.
If I have an attack jerking me around for 5-10 minutes, this is slow onset and usually indicates that severity will be 6 or under. Tablets, washed down with a strong, hot coffee are good for these attacks.
25-35 minutes of writhing and I'm done.
If I have an instant clanger, that comes on in 30 seconds flat, I know I am headed for force 10 cluster. I whack in an injection, because I know the tablets will be too slow and would not work on that level of severity.
Sometimes I stuff up.
I take a tablet thinking I will get away with it.
Within 5 minutes I know I should have chosen injection, because CH is kickin my ass.
I could chicken out and use injections all the time, but they are difficult to access and I have used 5 in 24hrs before. They cause rebound CH attacks in me, if I use too many.
Triptan use takes patience, practice and experience.
Speed is of the essence.
Faster you get them in, sooner they work.
Sumatriptan is the go for that group called Triptans.
Forget the rest, they are not fast enough in CH attack.
My specialist prescribes Sumatriptan because he knows it is the fastest.
You would think that he may show some bias toward Zolmitriptan, having pioneered it himself. But he is a good headache specialist and pain clinician, so he prescribes what is appropriate for the patient and their condition.
I would hazard a guess here, re: Indocid.
CH is male predominant. I see a lot of females with CH diagnosis being prescribed Indocid. Indocid works absolutely in a female predominant type of headache called Paroxysmal Hemicrainia (PH). Neuros should know, from a cursory glance over the IHS literature, that CH is not likely to respond to Indocid. Based on gender and predominance stats, your Neuro may be testing to see if you have a different headache type.
Are you sure you have CH?
Not doubting you, just your treating practitioner...
Recently I helped a diagnosed female "CHer" to overturn her alleged CH diagnosis, via her Neuro, only to discover that she had Paroxysmal Hemicrania (PH)
Her headaches were a new presentation, since last year.
They had increased in intensity and lasted days, not 15-180mins, as CH does.
She had no real "peaks" in attacks.
Her pain was unilateral and behind the eye.
She had no response to triptans.
She had MS and some bad CT and MRI scans (which CHers don't)
She reported some relief from excessive doses of Nurofen, an anti-inflammatory.
I did not have to be Sherlock Holmes to see that her Neuro had misdiagnosed.
She took my posts and some print offs of a few IHS criteria with her to her Neuro.
He prescribed Indocid.
Her response to Indocid was absolute.
She is pain free. Haven't seen her since!
Great news for her and the site.
PH is very rare. My specialist has been treating complex headache conditions for over 20 years. He has only seen one case of PH and now, so have I.
Correct headache diagnosis is about pattern recognition.
One does not need a great deal of medical expertise to spot a pattern in headache.
Have a peep at the International headache Society's web based application:
http://ihs-classification.org/en/02_klassifikation/02_teil1/03.00.0
0_cluster.html
Particularly at the diagnostic criteria for CH, click on that, click on Paroxysmal Hemicrania, click on any you want!
You should be able to spot your own condition pretty easily, by looking at three factors:
Frequency (How often attacks occur), Severity (Descriptions of pain levels) and Duration (How long headache types last) and peruse the list of criteria too.
You will spot it, then you need to record your specific headache condition in a headache diary.
This is why we use headache diaries.
Have you ever filled one in Belle?
They're fantastic diagnostic tools.
They help practitioners hone in on the exact condition with precision.
There's one here:
http://www.nps.org.au/conditions-and-topics/conditions/nervous-syst
em-problems/pain/for-individuals/pain-conditions/headache/for-individu
als/headache-diary
There's a link on the page, so you can download a pdf and print off a few.
When you next start experiencing pain, grab a pencil (rather than stare into a screen, eyes watering) and jot down your data in the columns provided.
Be sure to be vigilant (don't get slack!) and as accurate as you can be.
I know it's hard in a post attack haze... but write down what you can.
A pattern will emerge. Even if you're dead certain you have CH, it is wise to collect data for a while. It can either overturn, or help to confirm or reinforce your diagnosis.
The correct way to differentially diagnose CH is by taking a detailed patient history.
There is no other way, no confirmatory test for CH, you can't see it on a scan, or measure it in pathology testing.
Proof lies solely in the data you collect and arm yourself with.
Also when some smarmy Neuro decides to punch holes in your story - you have armed yourself with the data - knowledge is power, my friend!
Back yourself!
I suspect Medibank (remember them? they started this!) might question your diagnoses later, with their appointed practitioners (with their agenda in hand; to minimise claims...). You will have the data collected and they can't knock you back!
It may just be all the proof you need.
It may be all the proof you have...
Re: O2
Here's a CHers user's guide to O2.
If you drop me a PM, I can put you in touch with Batch, he is one of the leading O2 specialists. He will take you through it, maybe even send you one of his patented regulators, get you onto the right masks, which we don't have yet "O2ptimask" is an evolution on the non-rebreather mask CHers have been using.
Batch will even school you in correct breathing techniques and how to connect it all, via Skype. The guy is a legend, true Gentleman and very helpful.
http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final
.pdf
Enough information overload for one day.
Apologies Belle.
My head is full of info, when it's not full of pain!
Cheers, Ben.
I have a day off on Saturday and will start a new topic with the members re: coping strategies.