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Topic: Hey there.... (Read 324 times) |
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ClusterF__ked
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Find the cure!!!!
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Hey there....
« on: Oct 20th, 2006, 2:50pm » |
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I figured I would introduce myself since I finally registered.... My name is Patrick and I have been cluster headache sufferer fo close to 15 years now.... It is comforting to know that others who share this affliction have a place to gather and share experiences and/or possible remedies....
My current medication for the clusters is Stadol NS (Butorphanol Nasal Spray) and it works well (and fairly quickly) to kill the pain of the headaches once one hits me....
Im really interested in discovering other possible medications for relief or prevention as the stadol is a rather potent synthetic opiate and my body tends to build a tolerance to it rather quickly....
Hope you all are headache free and look forward to hearing from you!!!! 
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Charlotte
CH.com Alumnus
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I love YaBB 1G - SP1!
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Re: Hey there....
« Reply #1 on: Oct 20th, 2006, 3:41pm » |
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hi cf. If you click on "search" below the CH.com logo in the upper left corner, you can google anything you are interested in either on the CH.com site or the internet.
good luck, & welcome aboard.
Charlotte
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| « Last Edit: Oct 20th, 2006, 3:43pm by Charlotte » |
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Skyhawk5
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Re: Hey there....
« Reply #2 on: Oct 20th, 2006, 4:00pm » |
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Welcome aboard Patrick! This site is packed with information and great people who know what it's all about. I am mostly a reader myself and find myself more informed than I have ever been in 18+ yrs. So read all you can, also the links on the left of this screen.
I also use Stadol NS, and a few others on the site, along with Oxygen, Verapamil, Lithium, and Trazadone at night. Oxygen is probably the #1 treatment for CH.
You need to tell us more about your CH and meds. Are you taking anything else, etc.?
Skyhawk5, Don
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| « Last Edit: Oct 20th, 2006, 4:03pm by Skyhawk5 » |
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BB
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Re: Hey there....
« Reply #3 on: Oct 20th, 2006, 6:56pm » |
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Hello Patrick,
Welcome to the family, sorry that you are here with us because of pain but we are glad we can offer you a family with real understanding.
There are heaps of very good information on the Board, just spend some time reading up on all of the threads. Brew some nice strong coffee and make yourself comfortable in the chair and read on.
Regarding medication to control CH, a few things are a must to try, as they work so well for many.
1- Oxygen : cheap and fairly safe, and can abort an attack in mins.
2- Triptans: such as Imitrex, Zomig, Maxalt etc, also can abort the whole thing in mins.
3- Prednisone taper: for bad or stubborn cycles, can take up to 75 mg per day, tapering off over 5 to 7 days to break the patterns.
4- Verapamil : doses may vary from 480 mg per day up to 1000 mg, needs to be monitored but can work very well in blocking most of the attacks.
5- For night attacks, try Melatonin from 3mg to 15 mg per night.
6- For day shadows and little ones, try Red Bull , oxygen, strong coffee etc.
7- During an attack, feel around the neck to see if you have a cluster lump, a hot tender swollen ganglion under the skin which is tender to touch, can be on back or side of neck, if you have one, apply ice there, it will help a lot with the pain. It may be inside your mouth, back of tongue on the roof of the mouth too, if its there sucking on ice helps.
8- Come here and share with us your life in cycle, whinge, moan, celebrate .... whatever, we will be happy to listen and give you any emotional/mental support that you may need.
9- If you like to try new things, look at Kudzu, Taurine, Shrooms etc also.
10- Other goodies to be discovered at a later date
Take care and wishing you many PFDAN ahead.
Annette
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ClusterF__ked
New Board Newbie
Find the cure!!!!
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Re: Hey there....
« Reply #4 on: Oct 20th, 2006, 8:44pm » |
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Thanx for the welcome.... I also take oxygen but found it only takes the edge off for me.... I used to take Imitrex NS but my body also built up a tolerance for it and I didnt like the potential heart related side effects....
When I first started getting them (around 1991) my doctor gave me some pills (Percacet or something like that) but as you can imagine they took awhile to kick in and didnt always work too well.... Right now the stadol works well but tolerance and the potential addictive nature of it has me concerned.... Ive had headaches that were so bad I had to take 4 shots of stadol to kill the pain....
Ive been to the emergency room a few times and they always gave me Dilaudid (hydromorphone) intraveinously.... The last time I went they needed to give me 2 shots of it.... I was feeling no pain but was pretty much useless the rest of the day....
My clusters have no recognizable pattern that I can see.... Ive gone over a year cluster free, Ive had multiple cluster periods within a year, and Ive even had a 9 month period where I got them regularly (sometimes multiple headaches in the same day)....
Ive been to a neurologist a few times and they have alot of theories as to what may cause them but cant seem to give me a definate way to rid myself of them.... Hell, Id drink a gallon of cow piss if they told me it would cure me from ever getting them again!!!!
Im sure I dont have to tell you all what the pain is like.... Lets just say that suicide (Im NOT suicidal BTW) looked like a pretty good option on more than one occasion....
Im glad (and saddened) that there are other people that can really understand what I go through....
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George_J
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White-Breasted Nuthatch
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Re: Hey there....
« Reply #5 on: Oct 21st, 2006, 2:36am » |
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Welcome Patrick,
Annette and the others have already given you excellent advice and thoughts for the things you might look at first, so I won't repeat what they've said.
You already seem to have concluded that pain medications aren't going to do you a great deal of good in the long run. There are other means of controlling your attacks to some extent, some medical, some non-medical, as others have told you. Still, pain medications appropriately administered, often have some role in managing CH, and seem to work better for some than for others. So don't necessarily leave them behind.
In my particular case, they were pretty much useless. But we don't all react in the same ways.
Again, welcome to the community. Look around, ask as many questions as you'd like, gripe, tell us your triumphs and setbacks, and get to know everyone. We're sorry you have CH, but we're glad you've joined us.
Best regards,
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)
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Bob_Johnson
New Board Hall of Famer
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Re: Hey there....
« Reply #6 on: Oct 21st, 2006, 8:36am » |
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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RichardN
New Board Hall of Famer
  
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Posts: 690
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Re: Hey there....
« Reply #7 on: Oct 21st, 2006, 8:37am » |
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Hi Patrick
What flo rate do you use for 02? When I got my prescription (armed with info off this site) in 2/02, the doc prescribed 4 lpm with canulae (nose-thingy) and an 8 lpm reg. . . .useless at that rate . . . not totally useless at 8 lpm with mask, but not NEAR as effective as 12-15 lpm with non-rebreather mask (the one with the bag) or Clustermask. The key for me is to have it always at hand and use at the early onset of the attack.
See the water X 3 link on the left . . .absolutely convinced this has helped me and others reduce the frequency/intensity of attacks.
This place gave me my life back . . . you are not alone and the info/caring/sharing you will get on this board comes from folks who truly know your pain.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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mathieulives
New Board Newbie
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Re: Hey there....
« Reply #8 on: Oct 27th, 2006, 1:50pm » |
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on Oct 20th, 2006, 6:56pm, BB wrote:
Hello Patrick,
Welcome to the family, sorry that you are here with us because of pain but we are glad we can offer you a family with real understanding.
There are heaps of very good information on the Board, just spend some time reading up on all of the threads. Brew some nice strong coffee and make yourself comfortable in the chair and read on.
Regarding medication to control CH, a few things are a must to try, as they work so well for many.
1- Oxygen : cheap and fairly safe, and can abort an attack in mins.
2- Triptans: such as Imitrex, Zomig, Maxalt etc, also can abort the whole thing in mins.
3- Prednisone taper: for bad or stubborn cycles, can take up to 75 mg per day, tapering off over 5 to 7 days to break the patterns.
4- Verapamil : doses may vary from 480 mg per day up to 1000 mg, needs to be monitored but can work very well in blocking most of the attacks.
5- For night attacks, try Melatonin from 3mg to 15 mg per night.
6- For day shadows and little ones, try Red Bull , oxygen, strong coffee etc.
7- During an attack, feel around the neck to see if you have a cluster lump, a hot tender swollen ganglion under the skin which is tender to touch, can be on back or side of neck, if you have one, apply ice there, it will help a lot with the pain. It may be inside your mouth, back of tongue on the roof of the mouth too, if its there sucking on ice helps.
8- Come here and share with us your life in cycle, whinge, moan, celebrate .... whatever, we will be happy to listen and give you any emotional/mental support that you may need.
9- If you like to try new things, look at Kudzu, Taurine, Shrooms etc also.
10- Other goodies to be discovered at a later date
Take care and wishing you many PFDAN ahead.
Annette |
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I agree with everything in here! - havn't tried 9 or 10
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BB
CH.com Alumnus
New Board Newbie
I love YaBB 1G - SP1!
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Re: Hey there....
« Reply #9 on: Oct 28th, 2006, 7:43pm » |
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Hi again,
Glad you found them helpful
Let us know your success story so we can do the victory dance with you.
Also share when the dark cloud covers your sky as we can huff and we can puff and we can help blow it all away too
Annette
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