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The story of a northern Clusterhead (Read 1377 times)
Mothx
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The story of a northern Clusterhead
Dec 2nd, 2009 at 5:38pm
 
Hello!
Watched a youtube clip of a cluster attack and saw an add for this site, so i thought i'll join and share my story to you since i feel so many of us have things in common.

Im typing this in a "break" from the attacks since im in the middle of a period as we speak.

Im 30 years old, had my first cluster attack when i was 25. This was in october 2004. I was playing videogames with some friends and suddenly i felt like the whole world was put inside my left eye. My first thought was "what the hell is this???". I fell on the floor moaning and pressing my hands against my face and eye with full power. After 30 minutes it passed and it was like nothing had ever happened. At first i thought I had spend too many hours in front of my computer, so i didn't play any games the next month or so and i had no more than 1 attack that first period.
But then march 2005 came. I was at work driving a trailer when suddenly this pain came back. I barely managed to drive the car to the side of the road. After bashing my head to the steering wheel for about an hour it all disappeared and i could drive on. I was yet again in shock wondering what the hell this could be.

These two attacks turned out to be the first of many... Embarrassed

Ive had 2 periods of attacks each year since. February/march and september/october.
I get 1-4 attacks a day (most times at night) that lasts 1-3 hours and the periods last 14-45 days

When i first went to the doctor he just gave me strong painkillers, but it didn't relief any of the insane pain i was suffering from. The only thing that kept me breathing through these periods was the thought that it will soon be over and i could go back to live a normal life.

Ive lived with the pain in 2005, 2006, 2007 and 2008, until i got really fed up and seeked professional help.

Now, in 2009 ive been to the Center of National Headache Research here in Norway. After being diagnosed with CH i got Imigran in nose spray form. I feel that these only works like 40% of the times, but better than nothing... but not good enough.
Now i got Imigran in injection form. This works great! The attack fades away 10 minutes after i set the injection!
The 10 minutes is as normal beyond any possible pain exposed to mankind, but its better than having it for 3 hours.

This I can live with!

And i also have an oxygen flask by my bed, not sure if oxygen works but i like to think it does  Smiley



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angela.lambert
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Re: The story of a northern Clusterhead
Reply #1 - Dec 2nd, 2009 at 6:44pm
 
Hello to a fellow Latitude Cluster Head!

So happy you found us, sorry for the circumstances.  But, this is where you share, vent, support, and be supported by the best, sympathic friends in the world.

I agree from experience, stay away from the pain killers, they don't do much for CH's.  My CH cocktail is:
Verapamil 80mg 4 times a day, 7am,Noon,5pm,10pm (320mg total)
O2!!! Get it, Get it, Get it! I got a big O'l tank (as big as me) with a 15lpm regulator and a non- re-breather mask!!!
Imitrex (Imigran) shot.  I use the tip on the side menu - Very important! It will save you $ and is better for the ol system if your have lots of attacks.
Melatonin 9mg every night at bed time.
And I drink lots and lots of water. (It really does help, me).

Keep in touch - PFD!

Angela
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The Beast, the Beast, the Beast is on Fire!
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Mothx
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Re: The story of a northern Clusterhead
Reply #2 - Dec 3rd, 2009 at 2:22pm
 
I forgot to mention that before i got the meds that works (for now at least...), i used to sit in the shower with hot water pouring over my head during the attacks.
That actually made the pain less intense for me. The backside is that u get really dry skin after taking a shower 4 times a day.

Angela, not sure what u mean by: "I use the tip on the side menu"?


Chris


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angela.lambert
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Re: The story of a northern Clusterhead
Reply #3 - Dec 3rd, 2009 at 3:05pm
 
The Imitrex (Imigran) tip so you use less of the shot at once.  If the menu isn't visible on this site here is the link:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

I too like a hot, hot shower when I'm getting hit.  It takes the edge off.

Hope this helps
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The Beast, the Beast, the Beast is on Fire!
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Mothx
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Re: The story of a northern Clusterhead
Reply #4 - Dec 3rd, 2009 at 3:46pm
 
Oh... now i see. I misunderstood you. I thought u meant the needle-tip on the actual needle. lol, this is what i get for having english as my second language   Grin

Btw. This is no problem for me. My country have free med-care so i dont pay for treatment or medicine. And i get as many shots i like from my neurologist.
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Martin
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Re: The story of a northern Clusterhead
Reply #5 - Dec 4th, 2009 at 10:28am
 
A thought I just had when you mentioned the sumatriptan injections.. if you are having 4 attacks a day, and using the injections each time to abort, you might be exceding what is considered the safe dosage.  i've read posts of sufferers complaining about remission, and extended cycles due to over-use of imiject/imitrex

Otherwise, I'm glad to hear you're getting some professional care, and that you live in a place with socialized healthcare.  being in Canada, I really feel for the people who struggle to afford appointments/medications for clusters, as I am fortunate to live in society with socialized healthcare as well
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« Last Edit: Dec 4th, 2009 at 10:28am by Martin »  
 
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bejeeber
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Re: The story of a northern Clusterhead
Reply #6 - Dec 4th, 2009 at 10:42am
 
Hey Mothx,

Being in the US I have to use that imitrex tip religiously for $ reasons, but I can tell you that even if I was enjoying a good Norweigan health care system, I'd use half doses a la the imitrex tip, as this drug isn't necessarily entirely benign, and half doses work just as effectively as full doses!

Also, as fantastic as it is that the Imitrex is working so well for you,, I'd advise not becoming complacent. This beast can change tactics on you and you want to have a back up plan (such as a good preventative) thought out and ready to go just in case.

Imitrex works great for me too, but I can't rely on it exclusively (I also use O2 and a preventative), because for one thing I'd be injecting it 5+ times a day during peak episode, and I try not to get caught in that vicious rebound cycle.
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« Last Edit: Dec 4th, 2009 at 11:13am by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Mothx
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Re: The story of a northern Clusterhead
Reply #7 - Dec 4th, 2009 at 5:37pm
 
Im glad i found this place, getting some very useful info here. Thx people!

When i comes to the Imigran (Imitrex) shots, my neurologist said that i can take up to 5 a day, but cant take more than 1 every 2 hours. He gave me his phonenumber and gave me permission to call him at any time if the shots stopped working or if i needed anything else.

I finally got the feeling that im taken seriously now!

As i wrote before i am now part of a national research on headaches. I will be part of this until 2023, giving blood samples and go through physical and psychical checkups. They told me they are researching the possibility that this can be passed on through generations. 

Im pretty new to the shots, and so incredible happy that i finally got something that scare the beast away. Im aware that the day the shots dont work anymore might come, but im willing to do anything to prevent that day from coming!!!

Im gonna look more into any possible backsides of the shots, cause besides of getting the feeling im gonna puke, i have no bi effects at the moment.

Thx again folks!

PS: Im sitting in my livingroom with my latop enjoying a icecold beer! Its been 2 days now without any visits from the beast! This time it lasted 32 days with an average of 2 attacks a day (3 a day the first 20 days, 1 a night the last 12). So hopefully it wont come back, but a voice in the back of my head says: we'll meet again...


Chris





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