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Am I a clusterhead? I just had a click moment (Read 914 times)
Leef
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Am I a clusterhead? I just had a click moment
Nov 11th, 2009 at 9:13am
 
I randomly ran into this website and had a major aha moment.

I've always been headachy. It started in my teen years. At first I thought it was allergies. But I would get it VERY early in the Springtime. Before the normal hayfevers. No hayfever medicine helped. I had myself tested and they couldn't find anything I'm allergic too.

But one day I woke up around 2 AM with a KILLER migraine. I would have thrown myself out the window to stop the pain. It was like a spike through my eye into my brain. And someone was twisting it. Thank god I was visiting my mom and she had some major pain relievers that knocked me out because I don't think I would have survived the trip to the hospital.

So I went to a neurologist. I told him that I would get the headaches early when I woke up and that they would go away and come back. Normally during the day I would be fine. He said it was wierd to wake up with migraines but he gave me a few medications AND I HATED THEM. So I stopped taking them and the headaches went away...so alls well that ends well.

Well they still keep on coming back.

My symptoms? This last week I've had a runny nose off and on (no fever) and major headaches. My eyes burn and my sinus is runny.

The attacks last about 30 minutes and what I do is got to a dark room and put in earplugs and put a towel over my eyes. Eventually it goes away.

What's wierd is that I didn't connect my fantom allergies (that can't be explained) and fantom colds (that produce no fever) with my headaches.

Could I be a clusterhead?
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Bob Johnson
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Re: Am I a clusterhead? I just had a click moment
Reply #1 - Nov 11th, 2009 at 1:39pm
 
Buttons on left of this page: see traits and quiz.

If these pages suggest Cluster to you, read:

 
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]
==========

If all this says Cluster, then seek a HEADACHE specialist, not just any doc/neurologist.

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.




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Bob Johnson
 
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Joni
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Re: Am I a clusterhead? I just had a click moment
Reply #2 - Nov 11th, 2009 at 1:47pm
 
Could be...I thought mine were sinus headaches for the first few years before I was a true clusterhead.  Follow Bob's suggestions!  Good luck!

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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bejeeber
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Re: Am I a clusterhead? I just had a click moment
Reply #3 - Nov 11th, 2009 at 3:30pm
 
The suicide spike through the eye, and the waking up at 2 AM with 30 min. attacks sound like CH to me.

The lying down in a dark room (for light sensitivity?) maybe not so much, but apparently there are all kinds of headache types and variants, and there's this "cluster migraine" thing that I don't know much about.

I'm no medical professional, but if you go to one to get a good diagnosis, please make sure it's a reputable headache specialist, and even then you have to educate yourself plenty, because fat chance any doctor is going to prescribe (at least not without being prompted) what is for many the very most effective treatment for CH.

I'm talking about hi flow/non rebreather O2. More info at the "oxygen info" button on the left. Please reply here though if those left hand buttons aren't visible in your view.
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« Last Edit: Nov 11th, 2009 at 3:31pm by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Re: Am I a clusterhead? I just had a click moment
Reply #4 - Nov 12th, 2009 at 2:08pm
 
It sounds like it could be cluster's... but we're not doctors.

make an appointment and see an actual headache specialist neurologist.  There are so many things that can cause headaches, so rule out any seriously threatening disorders first.

If you suspect clusters, read the info on this site and bring it into the doctor's visit.  THey probably won't read it, but you can quote it in the dicussion you have with them.

good luck.
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Re: Am I a clusterhead? I just had a click moment
Reply #5 - Nov 12th, 2009 at 3:03pm
 
There are conditions that can cause headaches that can be very serious.

You didn't mention having had an MRI to rule out anything more serious.  You need to do that. 

It is very important that you get a correct diagnosis, because using the wrong meds for your condition can prove deadly in some cases.

Please demand to be seen by a Headache Specialist Neurologist.  You need to get to the heart of the matter.
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"The goal of life living in agreement with Nature."  ~Zeno
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Re: Am I a clusterhead? I just had a click moment
Reply #6 - Nov 13th, 2009 at 8:02am
 
Sounds like it could be,  same symptoms I had in my beginning years.  It also sounds like your neurologist is a loser.  He should have at least heard of clusters and what the symptoms are.   Get to a headache specialist pronto!!  Good luck
christine
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