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So now I have cluster headaches? Seriously? (Read 802 times)
Larkspur111
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So now I have cluster headaches? Seriously?
Oct 25th, 2012 at 7:47am
 
Hello!

I'm living in Offenbach, Germany via Montreal Canada via Ottawa Canada.  I had my first headache at the age of 4 which was diagnosed as migranes with aphasia (I can't speak or write in any language but I can hear and understand clearly).  I don't remember my first migrane headache but later I can say that they also came with some numbness.  I would have them once or twice a month.  At first, doctors thought they might be seisures but the brain scans have been and are clear.  I was perscribed Imatrix when I turned 19 but was too afraid to use it (I have allergies to Opiates and ASA) plus I'm pretty good at stopping them before it all goes wrong and I end up at a hospital because some well meaning person thinks I'm having a stroke.  Avoiding the hospital when you can't speak and have drug allergies is vital because no one ever checks your medic alert.

My migrains all but dissapeared in my early 20ies (I still do get them but very rarely).  After a killer headache that wouldn't go away back in August that lasted about 4 hours, I decided to see a doctor.  Naturally, being a migraine sufferer for so long I choose to see an eye doctor.  Well the headaches weren't quite like my migraines and they started with left eye pain, then my eye would get red and swell, then my left nostal would stuff up and finally swelling at the base of my scull.  So it must have been my eye glass perscription was off.  We had a nice chat and he sent me to the neuro with a note about cluster headaches.  I will say I'd never heard of cluster headaches before and I seriouosly dislike neuros as drugs and scans are not my first choice for controlling anything.  This morning I saw the Neuro and he said cluster headaches and now I have a perscription for the scary drug Imitrex and Lidocain. 

After reading a bit this morning, I can accept that.  I can clearly remember my first cluster headache as they are newly called.  I was 21 and sitting with my neighbour watching tv.  I had a sudden headache and touched the back of my neck as it was suddenly warm and found a tennis ball size lump.  My neighbour insisted on taking me to the hospital.  We walked as at the time I was a poor student in Montreal.  In the emergency I saw a neuro who said he had no idea what it was as I was probably stressed and to go home  and take a tylenol because they weren't going to give me anything stronger. I had mild headaches on and off for nearly a month after. I remember it really well because it was the last time I went to the hospital for a headache.  They made me feel like a junkie. That was 14 years ago. 

I'm at a loss of what to do next as I told the neuro I get these headaches 2 times a year for 2 weeks at a time in the fall and spring. But this is only somewhat true as I get really, really, really bad headaches twice a year.  I get what I would consider mild headaches with confusion on and off for two weeks a month. For them 1000mg of Tylenol keeps them at bay.  after 31 years of headaches I don't know if what I consider mild is actually the case.  My husband had his first migrane last week and all I could think was 'man we're going to the hospital for a little headache'.  When the doctor talked with me he made it seem like it was pretty serious. So now I'm wondering if maybe I should re-evaluate how bad my headaches are. 

My questions are:  with cluster headaches is there a way to be pain free? Is there anything non-drug related that I can do for prevention? Are there triggers with CH like migranes (the doctor said no, but I'd like to hear real suffers on the issue)? Besides the typical CH stuff, I get some speech problems too, anyone else?

Man that was long. Thanks for reading my babblings.
PS it felt good to get it out, I've actually talked to anyone besides a doctor about it.    
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Bob Johnson
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Re: So now I have cluster headaches? Seriously?
Reply #1 - Oct 25th, 2012 at 8:19am
 
I can't recall anyone writing from Germany re. the quality of health care/skill of docs. Assume that you are in a sophisticated society where you can locate a headache specialist, should you feel that's necessary.

Since you have 2 brief cycles each year, the response in the U.S. would be to treat the active attacks with an abortive and not bother using a preventive medication.

If you want to explore using a preventive, see the PDF file, below.

As a preventive, verapamil is very effective and has along history of safety.

Question of triggers is not a big concern with Cluster, compared to migraine. When you are in an activer perioid, alcohol is a trigger for most of us. Solvents are a close second but, unlike with migraine, foods are not widely seen as a problem. Individual variation rules, of course.
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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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Bob Johnson
 
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ttnolan
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Re: So now I have cluster headaches? Seriously?
Reply #2 - Oct 26th, 2012 at 2:56am
 
Yes there is a way to kill the pain, easy and drug free like you want. Read up on the oxygen info link on the left. I agree with Bob, your headache period is realitively brief, so this good abortive may satisfy your needs.
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« Last Edit: Oct 26th, 2012 at 2:58am by ttnolan »  
 
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