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llreed
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Hi - newbie
« on: Dec 23rd, 2005, 8:27pm »
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Hello everyone - I was amazed to know there are so many people who fight this beast.  My CH started in 1991, could usually schedule 3 months of my life to this beast.  I was blessed to go 2 years free, but this year didn't work out so well.  I am now on my 15th week of what I like to call torcher.  I'm tired, depressed and scared to sleep.  And my doctor isn't listening, trying to hang in until I can find one that will.  Wish you all better day and Happy Holidays-sincerely llreed  Smiley
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Bob_Johnson
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Re: Hi - newbie
« Reply #1 on: Dec 23rd, 2005, 8:37pm »
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Print this excellent article for your own education and you can use it to discuss treatment options with your doc.
 
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH.  (2002)
   
http://www.brightok.net/~mnjday/chtherapy.pdf  
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MJ
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Re: Hi - newbie
« Reply #2 on: Dec 23rd, 2005, 11:28pm »
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Welcome llreed
 
Your certainly not alone here.
I get tired and very wary of sleep as well, 20 minutes a night doesnt hardly cut it. But we all need to get sleep when we can.
Use this site and do all you can to avoid the depression cause that has the ability to make the CH more unbearable.  
 Docs dont allways come around so easy, keep searching and check this site for docs in your area who are known to understand. Someone else can maybe direct you.
15 weeks, maybe just one more to go, Hang in there.
 
What are you doing for the clusters now?
 
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MJ
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Re: Hi - newbie
« Reply #3 on: Dec 24th, 2005, 7:13am »
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Hiya  
 
This is a great resource to know like the back of your hand...print it out and give it to the doc  
 
http://www.brightok.net/~mnjday/chtherapy.pdf
 
It will present the appropriate treatments that you should seek and your doctor should know!!!  
 
 
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!  
 
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
 
I have  been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"  
 
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753  
 
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful  
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.  
 
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.  
 
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...  
 
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.  
I stayed with melatonin and have had decent sleep overall.  
 
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....  
 
Like I said we are all different.  
 
Best wishes, good luck & stay as positive as you can!!!!  
 
Eric  
 
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
burnt-toast
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Re: Hi - newbie
« Reply #4 on: Dec 24th, 2005, 7:40am »
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on Dec 23rd, 2005, 8:27pm, llreed wrote:
 I'm tired, depressed and scared to sleep.  And my doctor isn't listening, trying to hang in until I can find one that will.  Wish you all better day and Happy Holidays-sincerely llreed  Smiley

 
Now where have I heard this before?  
 
Welcome aboard, lots of good information that you may find helpful in dealing with this nightmare - Take some time to read, keep a good headache journal and go to the Doc. prepared to discuss your specific symptoms and thoughts on treatment options.  
 
I see some folks have armed you with good links.  Take some time to check em' out.  Don't forget, there's a lot of support here from folks who truely understand what you are going through.
 
Best wishes on your journey
 
 
Tom
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Re: Hi - newbie
« Reply #5 on: Dec 24th, 2005, 9:41am »
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Hello MJ - Current treatment 600mg of tegrotol with 25mg of Topamax - the so called obortive she perscribed was midrin & vicodin.  I was suppose to stop Imtrex shots and pills, she said they where giving me rebounds. Her stuff wasn't working at all, I found another way to get Imtrex.  It scares me to take so much stuff but I can't function at all if I don't do anything.  Thank you for your support. llreed.  I did get 6 hours of sleep last night - feel like a new women.  Tongue
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MJ
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Re: Hi - newbie
« Reply #6 on: Dec 24th, 2005, 11:05am »
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Glad you got some sleep. You look like a new woman  
 
Vicodin is a narcotic. in my and others opinion is not good for CH.  
Immitrex can indeed cause rebound headaches but at the same time a lot of good results for many. I would think that you would know best on that.
I havent take any prescribed meds for CH in many years, but I know that many here can give you good input on what you are taking.
 
Hang in there.
 
MJ
 
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Re: Hi - newbie
« Reply #7 on: Dec 24th, 2005, 12:23pm »
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You need a new doc!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
llreed
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Re: Hi - newbie
« Reply #8 on: Dec 24th, 2005, 12:34pm »
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MJ - I haven't taken any of the vicodin, afraid to actually - my dad who is a big support strongly suggested I stay away from it.  Now I have tried the Midrin on several attempts and it failed everytime.  Do you know anything about the Imitrex tablet? I have used it more, not sure if it ever helped because of how long the pain lasted.  MJ why haven't you tried any meds?  Talk to soon - llreed
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llreed
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Re: Hi - newbie
« Reply #9 on: Dec 24th, 2005, 12:41pm »
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E-Double - I have an appointment with a dr. who suffers from CH on the 13th of Jan.  Just got to take one day at a time until I see him.  Thank you - llreed
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MJ
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Re: Hi - newbie
« Reply #10 on: Dec 24th, 2005, 5:14pm »
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llreed
 
I have taken the majority of meds available for CH and then some.
I have had CH for 30 years, 10 years ago I gave up on all prescribed meds completely as the reality was none had ever done me any good and I had entered a chronic stage. I also gave up hope on doctors providing relief for me.
I found in my case that the attacks were actually cleaner and easier to deal with. The pain was stronger but I no longer had residual effects of the meds to deal with and was far more able to recover from the extreme attacks we get. Its not an easy way to go but I prefer it.
This is my first cycle in years that I have attempted a treatment but it didnt come from the docs. You can see my treatment on following Squanto thread, this is the first time ever that I have had any results with treatments.
 
MJ
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llreed
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Re: Hi - newbie
« Reply #11 on: Dec 24th, 2005, 7:15pm »
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MJ - Not to good with the lingo yet - what is a squanto thread?  Your a stronger person than me not taking any meds - the only way I did that was when the doctors took them away.  I'm a big pansy.  I hope your current treatment yields some relief or pain free days.  You have a Merry Christmas - llreed
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Jonny
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Re: Hi - newbie
« Reply #12 on: Dec 26th, 2005, 4:36am »
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on Dec 24th, 2005, 7:15pm, llreed wrote:
MJ - Not to good with the lingo yet - what is a squanto thread?

 
Look here
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1128701664
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.

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llreed
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Re: Hi - newbie
« Reply #13 on: Dec 26th, 2005, 9:53pm »
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Thank You Jonny, took me awhile to get through it.  But now I understand.  I'm not chronic, just seasonal this year I'm late on my season.  We get to the point where somethings has to give relief.  I nearly had 24 hours of relief for Christmas - Gosh I felt gooodd!! Thankful for every minute and smiled the whole time.  Thanks for showing me that information - didn't know things like that existed. llreed
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llreed
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Re: Hi - newbie
« Reply #14 on: Dec 26th, 2005, 9:56pm »
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on Dec 24th, 2005, 5:14pm, MJ wrote:
llreed
 
I have taken the majority of meds available for CH and then some.
I have had CH for 30 years, 10 years ago I gave up on all prescribed meds completely as the reality was none had ever done me any good and I had entered a chronic stage. I also gave up hope on doctors providing relief for me.
I found in my case that the attacks were actually cleaner and easier to deal with. The pain was stronger but I no longer had residual effects of the meds to deal with and was far more able to recover from the extreme attacks we get. Its not an easy way to go but I prefer it.
This is my first cycle in years that I have attempted a treatment but it didnt come from the docs. You can see my treatment on following Squanto thread, this is the first time ever that I have had any results with treatments.
 
MJ

 
Hi MJ,
Jonny pointed me in the right direction about the Squanto thread.  Happy Trails and Best Wishes - Let me know how this works for you. llreed
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Goblin
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Re: Hi - newbie
« Reply #15 on: Dec 28th, 2005, 4:51pm »
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on Dec 24th, 2005, 12:41pm, llreed wrote:
E-Double - I have an appointment with a dr. who suffers from CH on the 13th of Jan.  Just got to take one day at a time until I see him.  Thank you - llreed

Can you introduce him Doc to the board maybe he can give some help to us all on how to deal with our own docs. If he is a sufferer maybe he too would take some comfort in our group and help and be helped at the same time.
 
just an idea.
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llreed
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Re: Hi - newbie
« Reply #16 on: Dec 28th, 2005, 9:20pm »
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Goblin - Great Idea  Grin
I will do my very best.  I have to keep saying all of you have been great and what better than a Dr. who suffers from CH to see what I have seen hear on this sight.
God I hope he is for real.  I will let you know how it goes.  I'm forgetting everything - my appoint. is on the 12th.
llreed
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