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Sean_C
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Re: I had no idea....brand new.
« on: Jun 27th, 2005, 9:53pm »
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What are your symptoms
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Re: I had no idea....brand new.
« Reply #1 on: Jun 27th, 2005, 10:19pm »
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Hiya Vicar,
 
Glad to meetcha!
Stick around a while and share all of your experiences for I'm sure 30 yrs of battling has given you tons of knowledge on how to deal with the demon.
 
Educate all and learn from many!
 
Eric
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Re: I had no idea....brand new.
« Reply #2 on: Jun 27th, 2005, 11:20pm »
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The right direction is probably to make decisions on alternatives when you're pain free, certainly not while you're being slammed.
 
Good luck, and let us know how you go.
 
Cheers,
 
Brian.
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Re: I had no idea....brand new.
« Reply #3 on: Jun 28th, 2005, 11:15am »
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Welcome, Vicar - sorry you have a reason to find us.  Have you ever tried oxygen as an abortive?  It has a real high success rate and very few side effects, if any.
 
There's a link to the oxygen information in the buttons to the left.
 
You're absolutely right, narcotics aren't going to treat your clusters.  And if the triptans are causing shortness of breath for you, oxygen might really be a Godsend for you.  Critical for success, though, is correct delivery method.  MUST be through a non-rebreather mask and a flow rate of at least 8 litres per minute, perhaps higher.
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Re: I had no idea....brand new.
« Reply #4 on: Jun 28th, 2005, 11:26am »
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May we all assume that you have been under good medical care and that there is no question about the Dx of Cluster?
 
If so, you might explore with your doc:
 
1: Headache 2001 Sep;41(Cool:813-6  
 
 
Olanzapine as an Abortive Agent for Cluster Headache.
 
Rozen TD.
 
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
 
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
 
 
 
------------------------------------------------------------------------ --------
 
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
===
I would highly recommend buying this book.
 
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."Wink
 
 
 
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Re: I had no idea....brand new.
« Reply #5 on: Jun 28th, 2005, 11:50am »
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WinkWelcome Vicar2, but sorry that you needed to seek this place out.  There is a lot of information on the Left so read read read.  We are all here for you as well as you can be for others.
 
If you have trouble being woke up a night try Melatonin 6-9mg....
 
Lots of good advise above so just wanted to say Welcome and glad to have you. hug
 
PF wishes..........KimY
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Re: I had no idea....brand new.
« Reply #6 on: Jun 28th, 2005, 12:26pm »
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Sorry, re-reading all your posts now, Vicar.
 
Methadone and Ativan, huh?  Prescribed by a doctor for clusters?  Or for something else, perhaps?
 
I do pray that you find the help you need someday.
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Re: I had no idea....brand new.
« Reply #7 on: Jun 28th, 2005, 1:30pm »
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Welcome Vicar2.  Sounds like you are having a major rough time of it.
 
From your description it sounds like you've been taking the imitrex pills.  They have given me a kind of sqeezing feeling in my chest and that all over shitty feeling, but imitrex injections never do that to me.  I use half a shot (3mg) and get relief in 5 - 7 minutes and the worst I get is a kind of warm tingly feeling that creeps up the back of my neck and over the top of my head.  If you haven't already tried it, ask your doc about trying the injections.  S/he can give you a sample statdose kit.  If it works, great.  If not you're not out any money on another worthless drug.
 
Here are a few other things to read, while you are at it:
 
Here is a link to read and print and take to your doctor.  It describes preventative, transitional, abortive and surgical treatments for CH.  
 
http://www.brightok.net/~mnjday/chtherapy.pdf  
 
Here is a link to some non-prescription alternatives different people have used to help with the pain:  
 
http://www.clusterheadaches.org/resources/non_script_treat.htm
 
If you are currently taking medications, I would suggest you talk with your doctor before taking any of the nutritional supplements.  At the very least check for interactions at a website such as:  
 
http://www.drugdigest.org/DD/Home/AllAboutDrugs
 
Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other.  Better safe than sorry where your health is concerned.  
   
Oxygen is an excellent abortive.  Works for most people when used properly.  Defintely try this.  As well as it works, I have a hard time understanding why more doctors do not prescribe it.  It needs to be prescribed at up to 15 lpm via a non-rebreathing mask (plug the outside air inlets and cut the straps off) for no more then 20 minutes.  If your doc won't prescribe it for you, you might try welder's O2.  It's the same pure oxygen used by medical suppliers.  Many people here use it and would be more than happy to help you set it up.  Here are some links that tells about using O2:
 
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
 
http://www.headaches.org/consumer/topicsheets/oxygen.html
 
http://www.chhelp.org/mhni.html  
 
 
Here is a link to a letter that may help explain things to your friends, family and co-workers.
 
http://www.clusterheadaches.org.uk/home/index.cfm?address=../clusters/no te_colleagues.cfm&added=04/01/04&code=CB
 
 
Good luck and keep us posted.
 
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