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New here, Clusters in Colorado ...hello all (Read 977 times)
vinrock_21
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New here, Clusters in Colorado ...hello all
Apr 29th, 2010 at 2:16am
 
I Just recently got a diagnosis of suffering from cluster headaches from my Dr.  I have had these before usually once a year , sometimes once every two years, since I graduated college but never knew what they were.  I have had a current 'cycle' for almost two weeks now and have extreme pain behind my right eye, my eye lid droops and have tears out of that eye when in an attack.  I sometimes kick my legs when in extreme pain.  I usually get 2-3 every day now and they are generally at the same times of the day/night, give or take a couple hours.  I thought the Imitrex pills were working while taking 1/2 hour to kill the intensity at least but some say Imitrex pills don't work?  Does that mean that my intense pain was dying down after half hour or will a pill bring down the intensity for some people?

Also, I got a strong twitch in my arm while just getting ready to fall asleep tonight.  It was a common twitch that people get sometimes, but it was way more intense.  Could it be due to the higher inflamation/activity in my nerves associated in the right cranial?  Anybody else have elevated nerve reaction while on a cycle?  Thanks everyone........thanks for showing I'm not alone.
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wimsey1
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Re: New here, Clusters in Colorado ...hello all
Reply #1 - Apr 29th, 2010 at 6:33am
 
Hey there, and welcome. There's a ton of info here, especially the article on O2 in the left-hand menu. Read it. O2 is still the #1 abortive for most of us, especially with the equipment recommended: the Optimask, and the high-flow regulators. The imitrex pills are, in my opinion, slow to act as are most pills of any sort. Injections or nasal sprays seem to work better, although some have experienced relief with various forms of ergotamine, like cafergot. As to the twitching, not sure. I'm not a doctor so it's a good question for your neuro...and if you don't have a sympathetic neuro, get one! We do know CHs seem to originate in the hypothalmus region of the brain, though. Which tends to explain lots of the symptoms we have. Like the rythmic nature of the beast. Stick around! Smiley
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Bob Johnson
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Re: New here, Clusters in Colorado ...hello all
Reply #2 - Apr 29th, 2010 at 8:27am
 
Many folks find the Imitrex pill too slow acting for the rapid onset of Cluster. Injection form is first choice.

Throwing a couple of basic articles at you and would suggest exploring the buttons, left, starting with the OUCH site.
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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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See the PDF file, below.
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Bob Johnson
 
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Guiseppi
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Re: New here, Clusters in Colorado ...hello all
Reply #3 - Apr 29th, 2010 at 10:20am
 
Bob has given you your first round of required reading. You have chosen a rare malady to suffer from! That means it's important for you to educate yourself on CH and work WITH your doc to plan  a treatment plan. A 2 pronged approach works best for me and many others here.

1: A good prevent. That's a med you take daily while on cycle, to reduce the number and the intensity of your hits. I use lithium at 1200 mg a day. Verapamil is a common first line prevent but it's taken at doses higher then most docs are used to using it. Topomax is also a popular prevent, often called Dopey-max as some suffer side effects like forgetfulness while on it.

2: A good abortive. Oxygen should be your first line abortive. Read the oxygen info link on the left as it must be used correctly or it's not effective. Breathing pure 02 will abort an attack for me in 6-8 minutes. Beats the hell outta the 90 minute rides I used to take. Imitrex injectable is my last line of defense. Aborts in only a few minutes but do not like the way I feel afterwards.

Imitrex nasal sprays work for many, the pills work but take so long to get into your system. Most of us find the pain ramps up to rapidly for the pills to help.

For now load up on energy drinks, I prefer sugar free red bull but any contaiing caffeine and taurine will work. Chug one of those at the first sign of an attack. Many can abort or reduce a hit that way.

No one has found a cure for these things yet. But with a little bit of prep work, you can manage them. Welcome home.

Joe
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vinrock_21
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Re: New here, Clusters in Colorado ...hello all
Reply #4 - Apr 29th, 2010 at 10:49am
 
Thanks everyone.  I appreciate the help.  I just got through an attack at 2amMT last night and used the spray my doc gave me. It worked but took 25min.  I then fell asleep and had another attack at 5amMt.  I had taken a spray dose of imitrex the evening before so I didn't take anything because my doctor said not to take them so close (i.e. 3 in 8 hours).

I am so exausted now and am missing some work this morning.  God I'm so tired of this already and I'm barely at almost 2 weeks.
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Bob Johnson
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Re: New here, Clusters in Colorado ...hello all
Reply #5 - Apr 29th, 2010 at 11:40am
 
Are you using any preventive med? They reduce the intensity and/or frequency of attacks.
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Bob Johnson
 
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vinrock_21
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Re: New here, Clusters in Colorado ...hello all
Reply #6 - Apr 30th, 2010 at 10:23am
 
I haven't used any preventive meds yet.  I heard Melatonin works for some and you can get over the counter, is that right? I really don't want to get on even more medication if I can help it.  I am really trying to go the oxygen route.
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Guiseppi
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Re: New here, Clusters in Colorado ...hello all
Reply #7 - May 4th, 2010 at 10:03am
 
The most common prevents are Verapamil, Lithium and Topomax. I use Lithium at 1200 mg a day while on cycle. Will block up to 70% of my attacks. It really reduces my dependence on my abortives. At 1200 mg a day, if I didn't tell you I was taking it, you wouldn't notice it.

JOe
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