Hello,
I am 25 years old and live in the UK.

I was diagnosed with Cluster Headache last week but have had it for about a month now. I have spent 6 days in hospital (Frenchay Nuerology Ward) where they did a CT and MRI scan and they both came back perfectly clear. They constantly did my blood pressure and heart rate and they were perfectly fine.

But these headaches I get are somethig else................the pain is sooooo sharp and always in my left eye. I do not get a droppy eyelid or red eye and only had runny nose once. But the pain I get is so hard to cope with and it literally has me rolling around of the floor banging my fists on the floor and swearing at those trying to talk to me. The dizziness is horrible too and literally makes me feel sick, although I have never been sick. The one yesterday lasted for 2 hours, it felt like 5 hours. Light really hurts my left eye during an attack and the only thing I can do is press a towel into the left side of my face. I also smack myself on the left side of my head and temple as the pain is so severe. I sway my head from side to side vigourously and rock backwards and forth.

I am so scared all the time now as I can't stand the thought of going though that crap yet again. Every minute just consist of me wondering when it will return and it's a horrible feeling, wondering if it's going to happen in the next 10 or 5 minutes.

Is this normal for a Cluster Headache? For the tests to come back ok? My doctor diagnosed me on Wednesday but left me unclear as to what CH is.

Thanks for listening and please respond.

Explore your excellent support group:
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After such a long hospitalization were you discharged with a treatment plan?, with meds to abort the attacks and other med to reduce frequency/severity of attacks?

If not, why not? Were you given any instructions re. self-care, future contact with you docs?
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Yes, the first contact with Cluster is scary and shocking. There are several thousand members of this group who will bear witness to the reality that there is much good help, both medical and support to be had.

It's tempting to throw a lot of medical material at you re. Cluster but, at this stage, I expect it would add to the confusion.

First, get back with answers to my questions so that we have some idea of what has been planned for you. Start reading the material on the buttons (left) starting with the OUCH site; read the messages here. This is by way of getting some basic grounding in what is happending to you.

One basic article and a couple of good sites to explore for more basic information:




Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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A new (for me) site which is 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 or
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"

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The immediate MEDICAL goal is to beat on your doc to get relief from the pain/attacks. Until some control is established it's going to be a strain to get focused on the long term learning that will follow.

DCH,    please listen to those above.  Don't be scared.  We've all been where you are right now.  There is light at the end of the tunnel and believe me....you are in the exact right place to be for information as to how to treat this, get relief and get on with your life.  I promise.    

Read the links to the left, stick around here and read what everyone has to say in the various threads and take some notes.   Ask questions.   We're here to help.

Hey DCH,
I am also new to cluster headaches, been experiencing CH since the first of April this year. I am not an expert. Hell, I think I'm below a novice as I don't speak medical and am still in my first cycle.
But this site and others linked from it are extremely helpful. This board especially is crammed with useful posts full of information. So trust me when I say look at and read everything you can on this site.
I know it's scary, truth be told I'm still scared when I get an attack, but I'm hopeful that there will come a time soon when I can get back to my life and work.
Bests,
oltwitchy

HI i am new here too, and feel just like you! i pace around crying waiting for the next one to come and find it difficult to think about anything else. i am trying to figure out the best way to get a handle on this and just wanted to offer you emotional support and let you know your feelings are normal. you are not alone and there is great power in knowing that. hang in there.. we'll all get through this together