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frankie

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Sorry but im clad im not the only one.
Oct 19^th, 2008 at 12:51pm

HI I HAVE BEEN SUFFERING FROM THESE CRAZY HEADACHES FOR 11 YEARS NOW AND I HAVE ONLY JUST BEEN DIAGONSED WITH CLUSTER HEADACHES,IM NOT SUFFERING AT THE MOMENT BUT I JUST WANTED TO LET SOMEBODY KNOW THAT I WAS IN SUCH PAIN WHEN I AM SUFFERING,THE AMOUNT OF TABLETS THAT MY GP HAS ME ON IS STUPID,COMBINATIONS OF THIS AND COMBINATIONS OF THAT I TRY TO TALK TO MY WIFE AND EVEN MY 11 YEAR OLD DAUGHTER,I HAVE JUST GOT OVER A 15 DAY EPISODE BY FAR THE LONGEST AND BY FAR THE MOST DEPRESING AND SOUL DESTROYING TIME OF MY LIFE.
I HAVE READ REPORTS ONLINE ABOUT DIFFERANT FORMS OF CH AND TO SAY THAT WITH NOT SO MUCH THE FREROCITY OF THE HEADACHES BUT THE FREQUNCEY WITH WHICH THEY ARE STARTING TO OCCURE IS SCAREING THE SHIT OUT OF ME.
I SPENT 4 YEARS I THE UK SPECIAL FORCES AND I LIKE TO THINK I KNOW WHAT PAIN IS ALL ABOUT BUT TO BE SAT/SLUMPED ON THE FLOOR WANTING TO CRY OUT LIKE A SCOLDED LITTLE BOY AND NOT BE ABLE TO TELL THE ONES CLOSE TO YOU WHAT THEY CAN DO TO HELP IS ALMOST AS PAINFULL. Cry

PLEASE TELL ME THAT ALL IS NOT LOST TO A LIFE OF WORKING OR THINKING ABOUT WHEN THE NEXT ONE WILL COME.

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DennisM1045

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Re: Sorry but im clad im not the only one.
Reply #1 - Oct 19^th, 2008 at 1:02pm

Hi Frankie,

I know exactly how scared I was before finding this site and reclaiming my life. CH sucks but it won't kill you. You'll soon learn the power of knowing how to fight back. It changes everything.

Why don't you tell us a bit about what your Dr has you on. It is good to get the feedback of folks on this board. There is a lot of experienced and caring folks that can probably save you a lot of time and pain.

Also, it sounds like you are episodic, what are your cycles like? How many per year? How many headaches a day? When do they hit? You get the idea.

Lastly, I hear you on family. It hurts them as much as it hurts us. I'd encourage them to join as well. This place is as much for the supporters as it is for us that suffer.

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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frankie

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Re: Sorry but im clad im not the only one.
Reply #2 - Oct 19^th, 2008 at 2:04pm

Hi Dennis
For quite a while i was on zolmitriptan twice a day along with diclofenac three times a day and co-codamol four times a day as needed.
This compliment of tablets was ok up to a point,mainly aimed at migrian sufferers when the pain got to much or to often then the zolmitriptan which was the main pain killer was rendered useless becuase if you had the first dose as the first ch came on and then went with anouther following sortly after then the second dose was inefective.
Im now on Frovotriptan along with the usual suspects,but trying to get my gp to go the extra mile and not consigne me to the ranks of migrane sufferes{ although i do feel for these people}is frustrating to say the least.I wish i could put a specific pattern to them,i have tryed to go through the cycle with my gp many times and its hard to pin it down,mostly they start in the mornings and can last minuits or hours,these clusters can happen on a bad day four/five times agian lasting minuites or hours go away the same day not to be felt for weeks or months but i have noticed that for me they are becoming more regular.
As to the time of year i have not found any pattern to the clusters they seem to happen as and when they feel like it (i wish there was a pattern i could hibernate).
As for the ref; to my post( i wish i was the only one) i wish i was
FRANKIE

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Just Plain Carl

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Re: Sorry but im clad im not the only one.
Reply #3 - Oct 19^th, 2008 at 2:34pm

Hello Frankie,
   Hang in there, I know how you feel along with everyone else in this group. To repeat what Dennis said, It can't kill ya and eventually it will go away.
   My family is pretty much used to it by now, 30+ years, but I still feel sorry for them as well, knowing there is not much they can do for me.
   My meds pretty much consist of Prednisone and Verapamil. This seems to work for me better than all the other stuff I have tried.
   Keep reading all you can here. Lots of good info.
   Hang in There
   JPC

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frankie

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Re: Sorry but im clad im not the only one.
Reply #4 - Oct 19^th, 2008 at 3:55pm

Thanks Carl
Its great to find at last people who understand,my wife trys to cope with me as best she can but my 11 year old daughter tends to just try and cuddle me as a sign of comfort through an episode and she is not quite old enough to understand why i dont/cant give her that love back at the same time,i give her hugs and kisses as any father would do after the event but she just wants you to get better(dame that hurts).
I will keep reading on have no fear of that ,maybe i should have done this before but my wife has sugested that i keep a diary,is this somthing fellow ch sufferers do?how about you?

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Guiseppi

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Re: Sorry but im clad im not the only one.
Reply #5 - Oct 19^th, 2008 at 4:10pm

Well the bad news is you can give up trying to pin any "regular" patterns to these things. They come and go as they please morphing on what seems like an hourly basis!!!

Welcome home brother, the good news is there are many effective treatment options for you to explore. We need to get you some oxygen as an abortive. If you haven't tried it yet it's proving effective for a large number of people on the board, certainly worth a try. My girls are grown now but by the time they were in their early teens they knew how to rig a regulator on an e-tank and help daddy out. I don't give parenting advice....but!!!!!....I'd strongly encourage you to include your daughter in the treatment of your headache. Makes them feel not so helpless when they can help daddy out when the "monster in his head" comes.

You'll need a tank of oxygen, a high flow regulator, at LEAST 15 LPM and a Non Re Breather mask. Nasal canulas and rebreathers are worthless. And you must start it at the first sign of an attack. That's why the emergency room is useless because by the time you get there the headache is firmly established and 02 is not nearly as effective then.

Lastly, this is a rare condition. It is incumbent on YOU to educate yourself and and work in partnership with your doc in your treatment plan. Plopping your butt down in front of your doc and saying "fix me" is a recipe for lots of pain! We will help you every step of the way!

Guiseppi

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Just Plain Carl

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Re: Sorry but im clad im not the only one.
Reply #6 - Oct 19^th, 2008 at 4:16pm

I did keep alog this time. Pretty simple, meds I took, pain level and duration of hits.
Most of my attacks are at night and I would jot down notes after I coul semi function. The next day I would go over the notes and transfer them to the computer. I almost had to get a Navajo Code Talker to decifer what I had written down.

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DennisM1045

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Re: Sorry but im clad im not the only one.
Reply #7 - Oct 19^th, 2008 at 8:05pm

The mainline Triptans for cluster heads are Sumatriptan (Injectable and Nasal Spray) and Rizatriptan (Maxalt MLT) and Zolmitriptan (Zomig Nasal Spray). They are all targeted at quickly aborting a cluster attack.

There have been some limited studies using Naratriptan (Amerge) and Frovatriptan (Frova) for the short term prophylaxis of cluster headache. i.e. giving a cluster head a short term break.

There have not been any studies that I know of looking at long term Prophylactic use of Triptans. Personally the whole concept scares the crap out of me. These drugs are tough on your vascular system and I’m very wary of long term use.

Have you tried Oxygen? That is my mainline abortive. It handles over 90% of my hits and shadows without resorting to triptans. I do use them for the occasional hit that just warps through everything else I’m doing.

My preventative is Verpapamil. I’m not suggesting this is a direction you should go, but consuming large amounts of triptans can lead you to a bad place. There is anecdotal evidence that triptan overuse can lead to more frequent attacks and triptan resistance. Once that happens you’ve rendered a very good weapon useless.

Here are some links to treatment info. Educate yourself on the options and then work with your Dr to formulate the best plan of attack for your individual case.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Also, a great general reference for cluster headache treatment can be found at OUCH-US. Join up while you are there Wink

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Good luck and let us know how you make out...

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Callico

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Re: Sorry but im clad im not the only one.
Reply #8 - Oct 20^th, 2008 at 2:26am

Welcome aboard, Frankie.

Yes, you should keep a diary of your attacks, time, duration, pain level (see the kip scale to the left) meds used and effectiveness, etc. this gives you something to sit down with your Dr and work out a program that works for you. As Guiseppi said, you can't just sit down and tell your Dr to make you better. You have to be very proactive in working with him. Most Drs are not conversant with CH, and have basically no clue as to how to go about treating it. If possible, find a headache specialist who has a WORKING knowledge of CH.

As for preventatives, I have found Kudzu to be effective, and without the side effects of Verapamil and Lithium. I will not take Topamax unless there is no alternative, although I have been med free for the last couple of years and am dealing with it better that way.

O2 is very effective for most of us, and it also has no side effects. Talk with your dr ASAP, and insist that you be given a script. Read the "Oxygen Info" button on the left CAREFULLY as it must be used correctly or it is ineffective. Red Bull or the like works well as an abortive for me also. you must chug it down as quickly as it can be drunk if it is going to work, but it will abort an attack usually within 10 mins for me if I get it early on.

Ask questions! There is no stupid question if it is an honest question. Stupidity is having the brains and experience represented on this board and not utilizing them.

Jerry

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frankie

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Re: Sorry but im clad im not the only one.
Reply #9 - Oct 23^rd, 2008 at 1:57pm

Manythanks to you all for the replies i have been reading and printing lots info and i have lots to ask my gp when i see him next week, what i now know is that the pain in the arse aches that you get on a biuld up to an attack and that i get most days you guys call shadows,they are now turning for the worst.i just wanted to sau thanks back soon bye. Cry

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