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31 Jan, 2010 - 3:27 pm

Morning all
Long time CH sufferer‚ first time poster.
I have been getting CH’s for over 15 years‚ although I didn’t know what they were for the first 14. Having recently found this site and read others woes‚ I’m happy (it’s not just me) and very sad to know there are others out there with a part of their lives which is very very shitty.
I took the on site evaluation test and achieved a 90% (go me) so I guess that entitles me to a write a bit about our plight.
My situation is Episodic and I’m in a cycle now‚ (about 6 weeks to date) So hopefully I only have a few weeks to go before I get a respite‚ generally I get a cycle every 8 months or so‚ I think‚ give or take an old blokes memory. Love the “My CH Diary” it will help me track the demon more accurately.
After reading others stories‚ I’m pretty lucky. And I thought “self” stop bitching‚ you only get 1 attack a day‚ every day for a few months. (Again‚ Go me). Am I worthy to bitch and moan and vent on this site.
Dam right I am‚ 5.30pm every night I get the cursed shadows‚ that sinking feeling is soon followed by a drenching sweat‚ “Oh good‚ stage 2” The progression is usually rapid‚ moving onto a runny right eye‚ (which I had a skin cancer operation on‚ so I now have no tear duct drain‚ so it just leaks like a sieve) Generally within 10 minutes‚ I’m off on our own little journey of pain and suffering. I try and beat it with self talk‚ self chastise etc. (I’m sure you all know it‚ don’t let it happen‚ don’t let it be bad‚ don’t let it beat me etc). I try and stay an interactive member of the family as long as possible‚ they all know‚ but like all non sufferers‚ they don’t really understand‚ lucky they love me lol
Then the fun really begins‚ Pacing‚ sitting‚ kneeling‚ standing‚ rubbing my forehead like a wild man possessed‚ by this stage I have usually spared my family and wandered off to the boudoir (sulking place) where I can spend from 10 minutes to 2 hours trying my very best to push my forehead into the back of my head. In the fetal position rocking back and forth and cursing every know creator of existence. To those inclined there is only 1 god. Me‚ I’m agnostic‚ so I give them all a spray‚ God‚ Allah‚ Budda etc‚ even Hughy the wave god has been the recipient of my wrath. I have even tried getting the kids Harry Potter wand and “magic” ing it away. (that didn’t seem to work either)
The pain‚ oh yes‚ the pain. Well for me that varies from bearable to get the shot gun‚ I give up. Personally I am very very happy I’m not the depression or suicidal type. (I even have a Mr Happy tattoo) as I have had the “get the shot gun for real” stages‚ (not really‚ but I’m sure you know what I mean) If I’m lucky I will pass out‚ and wake anywhere from 1/2hr to 12 hrs later. I have a very high natural tolerance for pain and I heal very quickly from general injuries‚ operations etc‚ except when I get CH’s‚ then I’m down like a plane with no fuel and no pilot‚ and I have about as much control over my existence at the time.
Medication for me is now nonexistent‚ my old local GP took an interest in CH’s and then he up and retired‚ to date I can’t find a GP who will prescribe anything more than panadol and a good rest.
So the reason for my ramblings are HELP‚ does anyone know of a CH educated medical practitioner in the greater Brisvegas area‚ I have made an appointment with this sites recommended neurologist‚ but with an opening in May 2010 I would prefer to see anyone with a hint of understanding a little bit sooner.
Anyway‚ enough of my rantings‚ to my fellow CH sufferers Good Luck‚ Good Health and Good God make this go away.

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02 Feb, 2010 - 7:14 am

G'day Mr. Happy. I can't help you with Doctors in Queensland‚ so i'll just say welcome to the forum. Sad you have to be here‚ hopefully someone here can weigh in with useful information for you.
Actually‚ a register of Doctors who know a CH when they see one would be a very useful thing- maybe state by state? How about it‚ Roger?
Cheers Peter.

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02 Feb, 2010 - 4:13 pm

Well Mr Happy!
What can I say other than--"feel for you". I am not going to go through my woes of the last 2 weeks‚ having just been discharged from hospital this arvo after a very torrid time with inadequate treatment for the first week. I have indeed found a new neurologist that seems to have a handle on these dastardly "things"‚ or as saintpeter calls it "beast".
You sound to me as though you are trying to manage all of this without any support at all.
I understand that May sounds a long time away--and you can bet when May comes you will be symptom free saying to yourself--no one is going to "believe" all this‚ they have gone away etc and wont come back. In denial in other words. Bite the bullet‚ if you have not made the appointment by now do so immediately. Neurologists DO KNOW what we are talking about; if they dont they should!
Print off some of the great information on CH's available on the internet and see your GP; printouts in hand. There is definitely relief available--albeit you will have to be proactive in getting what is right for you at the time. This is not rocket science--there is so much documented now any GP with an ounce of "amything" must react. What are you doing when you get these attacks--obviously not taking your self off to an emergency clinic. You need to get some action happening‚ some recording of what happening.
One thing that I have come away from with this latest run in beside lots more medication is an understanding finally drummed into me by the neurologist--"you are sick--this is an illness--this needs to be managed and treated". Take heart‚ dont bury it‚ you do not need to be doing this on your own‚ but it is definitely in your hands to take responsibility for self and do something about it. Go to the hospital‚ go anywhere‚ but do not stay at home waiting for the beast to either come or go.
Good luck and always happy to "have a chat".
Cheers Heather (now on verapamil‚ sandamigran‚ imigran--up to 300mgs a day‚ and currently "coming down" from prednisolone. Shaking but by hell I dont have a headache and if I do‚ I now know what to do!!! And more importantly I have someone on my side if the current treatment does not work "next time".

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02 Feb, 2010 - 6:58 pm

Hi Mr Happy
Sorry to have to see you here but at least you have found us and the load of useful information everyone has to share. I can't help with a GP in Queensland that knows anything about CH‚ I'm having the same trouble here in NZ! After 22 years of CH and experimenting with many various different medications‚ some succesful for a period of time‚ others not‚ I'm still looking for the one! As for pain relief‚ either 2 panadol + 2 nurofen or another one I have found useful is Sonaflam. Only thing with these is they are only effective if the pain is no more than a 5 or 6 tops. Anything over that and a painkiller doesn't even touch the sides.

As Dusker has said‚ you need to be agressive with GP's‚ ED's or whoever you end up seeing for CH. For many years I was told the same old 2 panadol and rest even in the emergency department when I was screaming down the waiting room and bashing my head against the wall! Print off some info and take it with you when you see a GP or end up in ED at least then if you are lucky enough to find a doctor interested enough in helping you you are armed with some information that he/she may find useful‚ if they can be bothered reading it!

Anyway‚ best of luck in finding a GP. Keep your chin up & take care!

Ange

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03 Feb, 2010 - 7:07 am

Hi Mr Happy
Me again--agree with Ange.
I dont believe we present ourselves well at ER. We couldn't be. I sat waiting "patiently" to get to an O2 outlet whilst guys with fish hooks in fingers got treated before me. We are seen as having headaches. I now even encourage the word migraine for at least that seems to get a bit more action.
All treatment at ER should be received before we get anywhere near we can not control for ourselves.
To use our scale is meaningless to others. I found that they where not really interested--a number is a number; unless it was a least a 8-9. They relate that to severe pain. I wrote my scale down when admitted and kept a "diary" of what feeling at what time. I finally took control--"I want the Imigran here for me‚ for when I need‚ not to have to wait for you to respond". Not happy about this‚ but I stuck to my guns and demonstrated to them that with adequate relief I was a lot easier person to deal with. They came back to check on me rather than stayed away because they did not know what to do with me!
Re the imigran for me--originally told could only take 25mg and only twice a day. What an absolute display of lack of knowledge of its use. (now can take up to 300mg a day). Whilst I appreciate that this treatment might not always work‚ at least I can demonstrate that I have tried that method. Document‚ document--your explanation of your illness is the only way your Dr can get a handle on what you are going through.
The scale--with my added comments.
0. No pain‚ life is beautiful
-GREAT I am assuming then you are on preventitive meds.
1. Very minor‚ shadow's come and go. Life is still beautiful
-mmm‚ is a break down coming--am I prepared
2. More persitent shadows
--the beast is roaming--stopthe bugger--take MEDS
3. Shadow's are getting constant but can deal with it
--this is rubbish--deal with it--why should we! Off to ER to try oxygen in combination with meds. Is a dealing with like having an asthma attack--it will go without help?
4. Starting to get bad‚ want to be left alone
--I ask myself why here--are we "ashamed"‚ are we too proud to admit we need help
5. Still not a "pacer" but need space
If you havent taken med by now you are indeed on the way to a full blown attack
6. Need to pace and move and drive your fist into your temple

7. Pretty bad‚ left feeling exhausted after it finally leaves.
8. Time to scream‚ yell‚ curse‚ head bang‚ rock‚ whatever works.
9. The "Why me?" syndorme starts to set in. Fear that it won't stop.
10. Major pain‚ screaming‚ head banging‚ Hospital trip. Depressed. Suicidal

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03 Feb, 2010 - 7:17 am

Oops hit the post button by mistake.
6 Need to pace and move etc
This is just seen as impatience--tell them you are in pain
7 Feel exhausted etc
As far as they are concerned‚ you are just not in pain anymore.
Situation over. And we blithely walk away--we are OK now.
8 Time to scream etc
If you are here your treatment is totally inadequate
9 Why me?
This is really when I give in to the pain. Doesn't help‚ but do you know it probably gets the most response--people see you for what you are a person in pain
10 Major pain‚ hospital trip etc.
All far too late; you have reached the top of the cycle and to be honest the only way now is "down"--time is your enemy/friend here. If our treatment is inadequate you will be out of the attack but with another one not far away. Trust me!!
Go to ER/GP at any stage--request a referral to a Neurologist.
Good luck‚
will be looking out for you
Dusker

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04 Feb, 2010 - 4:36 pm

Hi Folks
Thanks heaps for the posts‚ means more than you know.

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06 Feb, 2010 - 8:16 am

Hi Mr Happy
Now entering day 4 without a headache! Wooppeee. Relief even for a short time is a blessing.
Let us know how you are going.
Cheers
Heather

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07 Feb, 2010 - 5:14 pm

Its 17.30 here‚ 2 days CH free‚ hoping all goes well tonight. I might be at the end of this one. YIPPEEE‚ I know‚ I know‚ dont get excited yet.

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07 Feb, 2010 - 5:15 pm

PS
Best of luck with your happy run Dusker

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