Passed my use by date.

12 Jan, 2012 - 11:01 pm

Hi to all,
In the short 12 months I have been a member here, I feel that I have now contributed as much discussion, research and experience as I possibly can. Until western medicine itself gains a better understanding of CH and its causes - I have little left to contribute to the debate.
I got a few people relief from their CH by suggesting they try the humble soluble Aspirin. A few others from my home state have been given names of local specialists and now have access to one of the world's leading CH experts. Some now have CH treatment plans in place, where they otherwise would not have. An excellent outcome indeed.
I wish them all well with their respective journeys.

Thanks to all those who sent me PMs telling me that my posts, ideas or links actually helped them. I appreciate this greatly. It is nice to know that I have helped a few people, if nothing else. Working so much on this site can be an arduous and thankless task at times, but it is rewarding for me when a person reports relief from CH. That's why I came here.

I have tried to provide starting points for CH patients that are self-researchers on this site so they can sift the masses of medical literature and better educate themselves on their own Headache conditions. (the old - "Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime." - Chinese Proverb) Also, putting a safety net under my claims by providing safety sheets and plenty of links for users to check out their own medications and treatments. Safety is vital, I have always encouraged users to research their own condition(s) and know their medications well - it may save your life one day.
I have researched until my arms are falling off, I have contributed all I can without repeating myself until I am blue in the face. I stand by my record and my posts.

We achieved a lot in my time here.
I provided links to Roger for some of the new tabs on the left.
Between us, we got up the links for:

- 2011-2012 Global year against Headache (An excellent platform for raising CH awareness)

- The International Headache Society (IHS) tab for diagnostic criteria on Headache conditions. The measure by which all headache conditions are quantified by specialists.

- The Pharmaceutical Benefits Scheme (PBS) tab so Australians can get immediate access to medication datasheets, availability and costs on all their medications.

- The National Prescribing Service (NPS) tab for yet more localised and current info on medicines.

- We also got all the phone numbers up on the home page for SANE, LIFELINE, Poisons information centre, and Health Direct Australia (for 24hr medical advice from health professionals)

Not too bad considering the year of pestilence I have had...

Thanks to Roger for acting so swiftly in getting the links up there in record time for users. Hats off to Roger, an excellent programmer, administrator and a nice guy to deal with too. Roger, this site is one of the smoothest, easiest to use and is a must see for any Australian CHer.

I can't greet the newbies, I lack the necessary psychology skills, diplomacy and tact.
I can't fill Heather's shoes in her absence, nor would I try.
Peter, I think you are doing an excellent job, even from the other side of the world, your articlulate approach and concern for others with CH is palpable and commendable.
Barry's technical approach has given me something in return - Batch's recipe. If this works as I suspect it might, I may well dodge an implant operation. Thanks Barry.

For the record - I knocked back a Moderator's position some time ago, as I could never do the position justice. I never wanted my sometimes inflammatory views to be confused with those of the site itself. To accept a Moderator's position would have been a conflict of interest for me, as I would have had to put a gag over my opinionated mouth.
I wanted to be free to engage in sometimes polarising, but robust debate, unencumbered by the responsibilities that should be exercised with a Moderator's position on this site.

To all the other people I have befriended, helped, offended, frustrated or alienated - I apologise unreservedly if I have put noses out of joint. I am a straight shooter. I call it how I see it, always will.

Cheers, Ben.This post was edited on 12/01/2012 at 11:08 pm

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13 Jan, 2012 - 3:04 am

G'day Ben,
first, thanks for your kind words. I enjoy your contributions to the forum immensely, long may they continue- which leads me nicely into a question;
What do you mean- Passed your use by date? Your post implies you have nothing left to contribute to this forum, I beg to disagree. Even if we don't see you participating in discussions on a regular basis, it would be nice to know you're still there in the background, keeping an eye on things, and throwing in some food for thought occasionally.
Do look after yourself, Ben, I still hope to meet you some day.

cheers peter.

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13 Jan, 2012 - 6:52 pm

Hi Ben

Increased knowledge and robust debate are never passed their use by date!!

By all means take a break Ben. You cannot help others if you don't look after yourself first and you have much to consider with the possibility of an inplant in the near future.

As Peter said, please hang around. You WILL beat this thing one day. I'm sure i speak for everyone when I say we want to see you "turn green" so we can celebrate along with you.

Personally, I have learned much from the information you have shared and I thank you for that opportunity.

Best wishes and kindest regards with whatever you decide to do

Sara

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13 Jan, 2012 - 7:11 pm

Hi Ben I for one will miss you as you have help me out so so much I THANK YOU for this MATE This sit won't be the same with out you, But I under stained you need to taking a brake and look after Ben TAKE CARE MATE & ALL THE BEST MATE for witch ever road you take. MANY MANY THANKS Ben

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17 Jan, 2012 - 3:50 pm

Ben
I may not be contributing at the moment, but I do still read!
Reconsider please.
Your input and work is so appreciated by all.
Heather

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17 Jan, 2012 - 10:38 pm

I believe you still have more to give this forum mate. Your knowledge and in depth responses will always be of help to many.

Hope to see you back soon.

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18 Jan, 2012 - 7:54 am

Ben,

You are a valuable part of this little Community and it would be a shame to see you go. With all the information that you have posted, most of us still wouldn't know half as much as we do now due to all the time that you have taken to find out everything that you have. I don't think that there is anyone on the site that would or could fill your shoes. Most people would be lost without everything that you have done.

If you need to take a break take one but i would hate to see you go from this site. Being "Past Your Used By Date" means only one thing to me and that is that you would like to end it. I know that you are not that kind of person, so please take a break from getting all the info that you get. Just sit back and take it easy but please stay in touch with us so that we know that you are still around.

Matt

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19 Jan, 2012 - 7:34 am

Hi to all,
I am having trouble concentrating, putting sentences together etc.
Don't worry Matt, bad choice of words from me there - I have no intention of harming myself or ending anything.
The CH ain't even bad at the moment, just mild shadowing that I can handle. No Imigran reqd.

I got a test result back yesterday that shows I have a "moderate" vitamin D deficiency.
Normal range 50-160 nmol/L, with >80 being within the ideal desirable range.
Mine was 19 nmol/L - sourced info from Pathology results.

This may be the culprit behind my suppressed immune system and explain my bouts of depression, mood swings and shingles too. It looks like the Pred 6 months back took more from me than I first realised. Bone density has dropped too. A cursory glance over the literature on vitamin D deficiency has shown me that is linked to a plethora of other medical problems, most of which I am experiencing.
I have been prescribed 10,000IU of VitD3 per day for a few months.

Funny that, Batch's recipe says to take 10,000IU per day too.
This recipe from Barry, even though not yet sourced or implemented by me, seems intuitively, the way to go for me. Starting point for me is to introduce 1 new component at a time, so as to affect gradual lifestyle shifts, not shock my body with "Crash" anything.
10,000 units of Vitamin D3 per day is in the recipe, so my new GP and I have introduced that, to be followed with more pathology. 1 variable at a time for me, in the true spirit of a science experiment. It's still Pharmacology, just not "off the shelf" CH targeted medication, what a relief!!! I do not recommend 60+ drug trials to anyone...

I took the first 5000IU yesterday, what a boost!
I could feel my body buzzing and my head clearing a bit.
Who knows where this will lead?

I have also had a pinched nerve issue in C1 in my neck.
Went to sleep one night in 1999, woke up in agony and it has never been the same since. I steer cleer of Chiropractors, so there was no way to fix it.
I twisted my head around a few days ago and got a huge crack from between C1 and the base of the skull. It seemingly corrected this issue of well over 10 years.
It was a monumental shift. I had tingling down the whole right side of my body into the sole of my foot, I knew I had shifted something major. My head is back on straight. It felt like my head had been leaning to one side for so long, I also felt a pop in my head, similar to when Imigran injection starts to work - the blood and heat was draining away from the right side of my head, so it seemed to me.
I have had CH far longer than any neck issues, so I don't expect CH relief from the neck crack, but I live in hope. I will take even a humble 5% improvement any way I can get it.

So, once again, thanks to everyone for floating ideas about neck causes and vitamin and mineral deficiencies. These are all areas up for exploration now.

Oh, Neurosurgery rang me to say they were ready to go on the implant - on day 3 or 4 of a shingles viral infection for which I was prescribed the anti-viral Aciclovir, a very effective and well tolerated drug indeed. I could not undergo surgery in that conditiion, the implant has been deferred until May. Initially, I was devastated. But this might be a blessing in disguise, as the Neruo nurses sounded to me like it was all a bit hasty, I was going to go in on 5 minutes notice where another patient had cancelled. It all seemed a bit rushed to me, not something you want to hear or feel going into Neurosurgery, I reckon. Kinda went like this: "Hi, good morning. The saw is still warm and we have a cancellation and can fit you in, how would you like your head cut open today???" Hmmmm, I think not...

I need to have a good talk with an Anaesthesist about heart drugs and Arrhythmias before they roll me in for surgery with GA. So the "post-haste" tone I was getting did not fill me with confidence... I really want to get Batch's recipe happening, although I have tried many things, this one looks promising. If it works, I can tell Neuros where to stick their implant - in someone else worse off than me!

After 12 years with the same GP, it took a new GP ( a new set of eyes) to look beyond CH alone and question the rest of my health. It turns out to be pretty bad, not something I had been advised of in 12 years under my previous GP.

Sometimes I think a long GP-patient relationship can breed a type of complacency in both Dr and patient. It is very refreshing to have a second set of eyes on my case.
When 97% of my GP time is used up on CH management, other parts of the body's health can be easily overlooked, as they have been for 12 years, in my case.
Second opinions offer objectivity, which in my case is invaluable.
This new GP may just save my neck by underpinning CH with good medical treatment that isn't limited to my head and CH condition.

My old GP is still my main one, as it will take me probably 2 years of transitional arrangements before I can "tune in" my new GP on my CH condition.
But, much to my surprise, this new GP has dealt with CH and has a working knowledge of Imigran. This is a big advantage, because boy am I sick of explaining basics like Vasodilation/constriction to GPs who "get the hump" as Peter so eloquently put it.
For 7 years I cried and pleaded on bended knee with my old GP for relief - I never once received Imigran or a mention of it until I was under specialist care in Pain Unit.
I am pretty pissed off that my old GP knowingly withheld drugs of known efficacy, when I reported such intense symptoms for so long. After 12 years with this GP, my diagnosed condition still says Migraine/Cluster Headache. That lack of distinction makes me want to punch a hole in something. It took Pr Rolan to come in back in 2005 and use I.H.S criteria to formally get me a correct clinical CH diagnosis and subsequent treatment, then finally gaining access to Imigran.

Doors are opening, scans are being done and my overall health is being quantified.
So, I will go into the next bout, yet more educated on what I can do, with more options.
Always good to have more options!

Cheers, Ben.This post was edited on 19/01/2012 at 7:38 am

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19 Jan, 2012 - 9:01 am

Hi Ben

That's sounding like good news.
Sorry about not replying in this thread before but been caught up in others so to speak.

Great that you got your Vit D3 level checked before you started as thats a good measure to check how you progress with adding more to your intake.

I noticed a new member signed up yesterday by the name of Batch, I'm going to Email the Batch I know & see if it's him, it would be good to have him on board with his knowledge.

Cheers
Barry

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19 Jan, 2012 - 10:19 am

Thanks for your words of Praise Ben, I too do hope you'll still be around for your valuable input

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20 Jan, 2012 - 3:10 am

Gosh, Ben, a second opinion having merit- who'd have thunk it?
Just kidding, your comment re: long term GP and patient relationship is spot on. It's all too easy for both to get into a groove and forget to look further.
I do hope you're back on the path to relief.
cheers peter

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20 Jan, 2012 - 10:42 am

Yeah, You are right Peter. I should follow my own advice more often...
I have been too quick to hand it out, but neglected to heed my own words.
Objectivity in the form of a second opinion appears to be priceless, thus far.

I suppose this is what can happen with GPs and specialists when I get stuck in a groove.
I didn't want to see any more specialists, I had a gutful of most of them here, a lot of them are specialist w**kers in my opinion - great with a golf club, not much else....
After much listening and closely following medical advice, there is a point where it becomes counterproductive spending 2 years "tuning in" someone far more qualified than I, on a condition they are not likely to ever have to treat. Their eyes just glaze over and they get "the hump". This usually condemns my efforts with specialists to irrelevancy and frustration.

After a lifetime during which I have seen probably 30-40 GPs and perhaps 20 specialists of varying medical disciplines, I had landed in the right place - Pain management unit.
However, all this specialist work is done on the assumption that your GP is holding up their end of the bargain. Despite 12 years with my GP, I still think that my CH is doubted, then treated with Imigran and a sprinkle of professional disbelief, just my opinion.

I made a few assumptions, something I hate to do, but caught myself doing it...
- that my GP fully understood my condition and had it "under control"
- that a specialist like Pr Rolan has an exclusive monopoly on CH expertise (he does in this town anyway)
- that my general health was being closely monitored, which it was not.

Gee healthcare can be compartmentalised so tightly, until your GP thinks your specialist is "on it" and your specialist thinks your GP is "on it" too, leaving a gaping chasm between the two, not overlaps and communication - as there would be in an ideal world.

(I note, Pr Rolan did pull me up a few years back after many trials and say something like this to me: "You know more about your CH than I now, having never had a cluster attack in my life. I have told you everything we (the medical profession) know about CH, you now know more about CH than we do, because you experience them every day." - or words to that effect. He went on to imply that the medical profession had more to gain from patient accounts of CH, than I (personally) had left to gain from the medical profession itself. (if that makes sense) We are the ones with the headaches and therefore, we have the answers somewhere in our heads (in whatever form you wish to choose). He was the person who encouraged me to write on the subject, something which I am sure he now regrets...)

Anyway, got some serious G.I. issues to attend to, then I can get Batch's recipe happening and begin incremental changes.

Did I ever mention, this has been the easiest 12 months in my CH in over 15 years?
Least amount of attacks, lower intensity, less drugs - surely this has got to be good!

I would not have been well enough to have been involved on the site whatsoever in a "normal year". I wouldn't be able to face a TV or PC screen usually.
I would have taken a glance and resumed the foetal position I have been in for 15 years.

The only thing I did differently, was to move house away from an incessant smoker where I was passively smoking so much - I thought it was time I stopped being exposed to that.
Maybe that helped? We will never know... pure speculation on my part.

Still around, but waiting to report any major advances - that's my status.

Thanks to everyone for your kind words and thoughts, I would be worse off, less educated and more ALONE, were it not for the people on this site and their compassion.

Cheers, Ben.This post was edited on 20/01/2012 at 10:48 am

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20 Jan, 2012 - 1:05 pm

Hi Ben,

Let me say that if it wasn't for you most of us would still be uneducated on this condition. With all the searching on the net that you do you could open up your own medical practice and specialize in CH only.

The guy that programmes my stimulator said that i should get a job with the company he works for due to the fact that i have the implant in and can sell the product easier than they can.

I would hate to see you leave the site and i know that there would be a big whole left in the site.

Matt

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