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Greetings from California (Read 868 times)
nightdancer
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Greetings from California
Apr 16th, 2013 at 10:25am
 
Hi All,
I just found your site today, thankful to know I am not alone but also sad to hear what all of you are going through.

I am 50 years old and have been dealing with CH since I was 18 years old.  My first attack scared me to death and my doctor did not know what was happening to me.
I was in the process of getting my Doctor of Pharmacy degree at the time and learned to live with my attacks.

I was fortunate that I only had to deal with this every 1.5 to 2 years.
After graduating from school and starting to practice my profession, I started to meet and treat other CH sufferers.  I still remember the day I met my first chronic CH patient and felt somewhat relieved that at least I had more good days than bad days.
Back then the medications were not very effective, triptans were not invented yet and doctors and patients did not use the phrase Cluster Headache at the time, referring to them more as migrain headaches.
I diagnosed myself as a CH sufferer as I did research to try and find out what was happening to me.  I was luck to meet a great doctor that was open to listening to my feedback and he was the first to recommend Oxygen therapy to me.
He even helped me out and did research on his own to see what we could come up with together.

My CH pattern is very consistent.  I am ok at work except for a few twinge headaches I can hold back with caffeine and either tylenol or motrin.
Once I get home I hurry to get dinner done, feed the kids and get whatever other household chores or family issues I need to accomplish.
I dread the night.  Around 9pm it starts to sneak up on me, right now it is my left side.  I take a Vicodin and an Ambien and try to get to sleep before it hits too hard.  Zomig has been working this cycle but I hate using it every day, makes it hard for me focus.
The Ambien and Vicodin combo does not make a headache go away or keep them from starting, it only allows me to either get to sleep and hopefully sleep through the CH or if I wake up with a CH, I can get back to sleep within 15 minutes and sleep through it.

I have tried taking cold showers, hot showers, pacing in the cold air, pacing in the house, trying to stay still, rocking back and forth and everything in between. 
My fear has always been that I will switch from being an episodic sufferer to a chronic one. I guess it is that fear that this cycle will never end and they seem to stretch on longer and longer. 
keeping a log has helped me see that even though my cycles are staring to get more frequent, the duration has not significantly lengthened.
As a pharmacist treating my patients, I can't tell you how relieved they are when the meet someone, especially their pharmacist, that knows what they are going through, the fear of the unknown and just finding someone they can talk to that gets it.
I am 2 weeks today into my current cycle.  I plan on doing battle as best I can and try not to let that stupid depression and self pity creep in, lets see how long I hold out this time.
I have also found that getting a massage has helped with the tension and anxiety.
Thank you all for reminding me that I am not alone and that this will end eventually, just have to get through it.
My night dances will start shortly I am sure.  After 32 years it is kind of helpful to know at least I don't have to be afraid of when the next cycle will start.  In a few weeks or months, I will be pain free again for at least 18 months.
Thanks you for letting me share this, it helps cope.
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Bob Johnson
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Kennett Square, PA (USA)
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Re: Greetings from California
Reply #1 - Apr 16th, 2013 at 11:07am
 
Explore the last site. Full of professional level materials and the e-book is dense but helpful.
--

Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
------

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Search under "cluster headache"
-------
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
=========
Alternative abortive which has been very effective for some of us, rapid acting.
--
Headache 2001 Sep;41(8):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.

PMID 11576207 PubMed

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Bob Johnson
 
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Batch
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Control The Beast With
O2 & D3 You Must


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Bremerton, WA
Gender: male
Re: Greetings from California
Reply #2 - Apr 16th, 2013 at 6:21pm
 
Hey NightDancer,

Welcome to CH.com.  Lots of info here and lots of lessons learned from thousands of years experience living with this disorder...

It's always great when we have a medical professional join our ranks...  I'm sure your training in pharmacology will come in handy in response to questions on medications that come up all too frequently

Check your PM inbox... 

Take care,

V/R, Batch
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« Last Edit: Apr 16th, 2013 at 6:22pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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wimsey1
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MA
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Re: Greetings from California
Reply #3 - Apr 17th, 2013 at 8:30am
 
Nightdancer...apt name for a beast tamer! I was a little surprised to hear your choice of management meds, I must admit. Is this all you do to prevent or abort? You mention Zomig, but don't indicate if you've tried imitrex injectables. Or high flow, nonrebreather O2 for that matter, or....any number of interventions. Just curious what has and has not worked for you. Let us know. blessings. lance
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Mike NZ
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Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: Greetings from California
Reply #4 - Apr 17th, 2013 at 4:37pm
 
Hi and welcome

I noticed that you didn't mention taking any of the standard CH preventives like verapamil, topomax or lithium. Have you tried any of these, if so, what were the results?

You also are using vicodin. For most people narcotic pain killers seem to be ineffective in dealing with the pain of a CH, however from what you've described it seems to be effective for you. Do you know why this might be? It seems to be a common experience that when doctors who know little of CH treat someone with CH that they often give out narcotics as they are not aware of other options.

Caffeine can be pretty good for CH, however have you tried energy drinks which contain both caffeine and taurine, which seems to make it even more effective?
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