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New to CH...but not to clusters! (Read 1192 times)
Joni
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New to CH...but not to clusters!
Aug 16th, 2009 at 3:09am
 
Greetings-I have had episodic clusters since 1986.  My family has been cursed with 10 people having clusters spanning 5 generations.  Though it is extremely unfortunate for my family, we have always had each other for support, information, and understanding!  I found it interesting on this site that it wasn't considered hereditary.  We have always said that someone should study our family!  Also, 7 of us are females!  Go figure.  Between us, we have had most all of the different treatment plans and we don't all use the same one.  Different strokes for different folks, I guess.  Half of us use Imitrex alone and the other half use a varied mix of prophylactic and sudden onset medications.  For the 5 that use Imitrex injections, it is a miracle for them.  My sister has been the hardest hit with clusters stating at age 16 until present and she is 60.  She has a permanent droopy eye lid on her effected side.  Though I have probably suffered more because for years I wouldn't take much of anything.  I am Chicken Little in the family because medication affects me so strongly that I am very cautious about what I take.  I have never used Imitrex, but I'm not saying I won't.  I learned quickly that you never know what you will do until that first pain in the eye starts and you panic.  Which brings me to why I am here on this site.  I just started a new bout after 2 years.  Isn't it funny how you forget just how devastating it is until you get that twinge in your eye or ear?  Now, I take very small doses of Paxil, Amitriptyline (which currant news is that it is not indicated for clusters any longer), and Verapamil year round.  When I know a bout is coming on, I double the Verapamil and start Nasonex Spray.  If this doesn't do it, I do a round of prednizone, but I really don't like to because of the rebound headaches that it can cause if not very careful tapering.  I am so glad I found this site!  It will be refreshing to have new info!  I have already gotten several good tips for when I see the doctor on Monday and fight the battle for the next 8 weeks.  Thanks for your suggestions and support.      
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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Bob Johnson
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Re: New to CH...but not to clusters!
Reply #1 - Aug 16th, 2009 at 11:05am
 
Notwithstanding your long experience, let me throw a couple of items at you, in case you're not current on treatments.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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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)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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This protocol on use of Verap has gained wide acceptance.
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Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
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Bob Johnson
 
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Guiseppi
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Re: New to CH...but not to clusters!
Reply #2 - Aug 16th, 2009 at 1:35pm
 
Welcome to the board! Someone posted the numbers and I'll get them wrong.....while One tenth of 1% of the population get CH...your odds are about 2X that if someone in your family has it. We have a few parent child sufferers here......but WOW!!!!!......seems like you guys REALLY caught the black marble. Cry

Glad you found us, take a minute and check out the oxygen info link on the left. With a few minor adjustments to how it's administered it's, enjoying a very high degree of success. Cheap, no side effects, FAST!!...6-8 minutes for me, many othere report similar abort times, certainly worth a shot!

Wishing you a short cycle this go round.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Joni
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Re: New to CH...but not to clusters!
Reply #3 - Aug 17th, 2009 at 5:48pm
 
Thanks Joe!  I tried oxygen years ago with some success, but many rebounds as soon as I was off.  Rebounds have been a big problem with me.  I have learned to start out with tiny doses of anything I take until it works (if it does) and then it is easier to taper for a long time with less chance of rebounds.  I have to be especially careful with steroids, though they have been a sure way to stop them if I just can't take it any longer.  I'm so glad the O2 works for you!!  My main drug is Verapamil, which I take at a VERY low dose (10mg daily) year round and 20mg when cycle starts.  It has allowed me to enjoy up to 2 years headache free at one point.  That had never happened before.  I usually have 2 cycles per year for 8 weeks.  If I mess up and rebound, then I have an extra cycle a few weeks after the original one.  It takes so long in this detective mode to learn what to do and how to change with the headaches as they "grow" and develop over time...but you already know.  I am extremely sensitive to medications in general, so it was a challenge until my doctor could see it for himself.  My daughter is a Pharmacist and she didn't believe me until she discovered she is the same way.  The good side is that my drugs cost very little since everything is broken in fourths and halves.  The bad news is getting people to believe you and being scared of overdose.  I also start Nasonex (instead of predizone) when cycles start.  I am going to experiment with Melatonin this time, too.  Oops, gotta go for now.
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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arcticspirals
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Re: New to CH...but not to clusters!
Reply #4 - Aug 18th, 2009 at 3:19am
 
Welcome, glad you found this site, I have joined, left then lurked for years. By and by this is a very informative, and supportive place to be!
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arcticspirals or_ri or_ri@yahoo.com  
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BarbaraD
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Re: New to CH...but not to clusters!
Reply #5 - Aug 18th, 2009 at 7:18am
 
Joni,

There have been GREAT improvements in O2 in the last couple of years. We've found that on HIGH flow rates it works much BETTER. I've used it for years (about 10-12) at 8-10 liters and it worked up to a point (along with trex), but a year ago I found out that with a demand valve and using it at a really high flow rate (40-60 liters per minute) I didn't need the other aborts. A few minutes on the O2 and no headache - no shadow - no rebound. I was AMAZED (and I'm an old broad who doesn't get amazed easily).

I'm an O2 pusher BIG TIME and if you haven't tried it in a couple of years would suggest you read up on it and make a stab at it again - using it properly. (High flow rate with the RIGHT mask) For about 70% of us it works and that's why we push it so strongly. It's cheap, won't hurt you and it's just our abort of choice around here. We have a couple of O2 gurus around here that can explain how to use it properly (Pete and Chuck) - they had to explain it to me, but thank goodness they did. It's made a BIG difference to me.

Your family sounds like it got dealt a real hand of cards. I think you win the prize for the most chers in one family. Don't think we've ever had more than two in any one family since I've been here (and I've been here since they moved the first load of dirt in). My family handed down migraines, but I'm the only one who was "lucky" enough to get CH.

Hope you get relief soon....

Hugs BD Kiss
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What don't kill ya, Makes ya stronger!
 
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Joni
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Re: New to CH...but not to clusters!
Reply #6 - Aug 19th, 2009 at 12:26pm
 
Thank you for responding, Barbara!  As I have navigated through the site, I have noticed the particular directions of O2 use and I certainly didn't use it properly years ago (my doctor didn't know).  It is comforting to know that is still an option.  This board is wonderful!  I just had a 24 hour pain free time and it was like I was reborn!  Then last night, our air conditioner went out and boy did the clusters disapprove of that!  I am waiting on pins and needles for the repairman to get here today.  I almost went into a panic when I realized it didn't work, but I have made it better than I thought I would.  Teaser headaches all night and this morning, so no sleep.  Woohoo, the repairman is here!  Later...

Joni
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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