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seventh
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well, guess its official, im a clusterhead.
« on: Jun 21st, 2007, 6:31am »
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been seeing many neuro's, got diagnosed last week with clusters by one of my country's best neuro's... im a clusterhead.. im 17 soon and im from israel.  
 
nice to meet you all Smiley
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Shedz
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Re: well, guess its official, im a clusterhead.
« Reply #1 on: Jun 21st, 2007, 6:35am »
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Well you've found the best place to be for advice and support.
 It's bad that you had to find us, but welcome aboard Wink
 
Paul.
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I push my fingers into my eyes, It's the only thing that slowly stops the ache, But it's made of all the things I have to take, Jesus it never ends it just works its way inside, If the pain goes on, I AM gonna make it.... http://www.youtube.com/watch?v=Xps7AM8HbjE
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Re: well, guess its official, im a clusterhead.
« Reply #2 on: Jun 21st, 2007, 10:11am »
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I remember you from when you were first here, seventh, when you were looking for answers about your headaches.  Glad to hear (I suppose that's the right term) that you've received a firm diagnosis.
 
If you don't mind, could you tell us a bit about what your neuro has prescribed for them, and what approach you've begun for treating these--or dealing with them?  We're certainly nosy, yes, but beyond our inquisitiveness, perhaps some of us may be able to give you some insights and tips about dealing with CH.  
 
Although I've had CH for a long time, I, for one, have not forgotten what it is like to be confronted with being hit the first few times.
 
Best wishes, and welcome,
 
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
Guiseppi
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Re: well, guess its official, im a clusterhead.
« Reply #3 on: Jun 21st, 2007, 10:14am »
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And at such a young age!!! I started my first mild hits about about your age. I'm 47 now the danged things still won't leave me alone!
 
Ditto to what Georgej said. Let us know what kind of a preventative and abortive routine your doc has you on. We can give some suggestions that have worked for us and maybe help you along! Glad you got the solid diagnosis, a huge first step. Hoping you're finding relief soon.
 
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
seventh
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Re: well, guess its official, im a clusterhead.
« Reply #4 on: Jun 21st, 2007, 10:24am »
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Hey, well first thing my neuro did is gave me Zomig & Rizalt in case i get an attack, prescribed prednisone which im tampering atm (on about 25mg a day and dropping, started at 60mg a day) and oxygen...
 
the oxygen is sure helping me, though nothing on the Rizalt and Zomig =( , which is really annoying because im afraid to get an attack outside and will have nothing to help me get it through ... what can the neuro give to help with the attacks when im outside? inside the house i can use the oxygen.. but outside is a different story...
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Guiseppi
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Re: well, guess its official, im a clusterhead.
« Reply #5 on: Jun 21st, 2007, 11:25am »
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I'm not sure what your oxygen set up is like. I use the e-tanks which aren't very big, I keep them with me when I'm on cycle, in my car, at my office, it fits in a gym bag so no one sees it.
 
I also carry an imitrex "auto inject pen" with me when I'm on cycle. I hate how imtrex makes me feel when I have to use it but it will stop a headache in its tracks. They are expensive so it might be tough if you don't have good insurance.  
 
Be aware when you come off the prednisone, if you don't have a prevent in your system the headaches can come back pretty strong. When I do a prednisone taper I am starting on lithium at the same time. By the time I'm going off the prednisone I'm up to about 1200-1500 mg a day of lithium. That blocks most headaches for me.
 
Sorry but I'm not familiar with Zomig or Rizalt but I'm sure someone else will pipe in on that.  
 
Guiseppi
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Ray
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Re: well, guess its official, im a clusterhead.
« Reply #6 on: Jun 21st, 2007, 1:00pm »
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Quote:
Sorry but I'm not familiar with Zomig or Rizalt but I'm sure someone else will pipe in on that.  

 
Rizalt = Rizatriptan
Zomig = Zolmitriptan
 
Both relatives of Imitrex or Sumatriptan.
 
I STRONGLY caution you against having either of these drugs within 24 hours of each other.  Most people here seem to have the best results with injectable Imitrex (sumatriptan) with a subcutaneus (below the skin) injection of 2 mg to 6 mg.
 
I agree with my Cluster Brother Guiseppi, take Oxygen wherever you go.  I don't know if they have aluminum cylinders of a portable size in Israel, I know that in The Netherlands, I had to lug a steel cylinder around, but do try to find out.
 
Mozel Tov Achi!  Shalom,
 
Ray
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You have my prayers and compassion-I'm right there with you.

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Rosybabe
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Re: well, guess its official, im a clusterhead.
« Reply #7 on: Jun 21st, 2007, 1:03pm »
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I take the Zomig rapid melts tabs , they work, but not that fast, around 10 minutes or so, try taking a Red Bull or a strong cup of coffee at the first sing of pain and take your meds with you. Some ice packs can help also. But please do not be afraid to do your normal life. Ask your Doc about the injections and the nasal spray.
 
Good Luck Seventh!!!
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