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.

Well, not much doubt about what you have. 

We always emphasize here that it is important to get a proper diagnosis before moving on to treatment, because there are potentially dangerous conditions that can mimic CH.  Sounds as if those possibilities have been eliminated.

You're going to get a lot of responses from people who are far more knowledgeable about treatment options than I am, so I will just suggest, at this point, that you take a look at the "oxygen info" link on the left side of your screen.  Oxygen, delivered at 15 lpm (preferably higher) via a non-rebreather mask (or better) is the gold standard for aborting single attacks. 

I'll defer to others who will no doubt be providing you with more specific information about abortives and preventives. 

I know you're scared and disoriented right now, but your diagnosis is actually good news in one respect.  CH won't kill you, and--although it cannot be cured outright--it can be treated effectively.

Believe me--it's possible to have a fruitful, productive life even if you are a clusterhead.   ;)

Welcome, and best wishes,

George

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: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (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.

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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

Hi DCH,

Wooboy you need some relief pronto!!

There are some potentially powerful ways to find relief which although they are well known here, it is still unlikely to hear about them from the often clueless medical establishment.

Here are some choice ones selected by a 30 year CH'er (me)  8-) :

- High liter flow 100% O2 as outlined in the oxygen info link that George mentioned. Tthis method of administering the O2 is more effective than what a doctor would ordinarily prescribe.

- High doses of vitamin D3. This is something that has been adopted much more recently by members here as a preventative, and the initial positive results being reported are causing a stir. A pretty harmless thing to try. Here's the topic: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

- Clusterbusters. CH'ers over at the clusterbusters.com message board have reported success with this approach, including the prevention of entire cycles. And this after conventional meds had failed them. Here's a Newsweek article on the subject: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

A couple of additional  tips:

Alcohol is a huge trigger for most of us - try drinking some at your own peril!

Uninformed doctors will prescribe sumatriptan (imigran/imitrex) pills to a CH patient. That's so dumb. the pill form is too slow. The injectible form tends to be very effective, but some of us experience side effects (I don't), which is why O2 makes such a good first choice abortive, and why many of us reserve imigran as a back up.

OK there's your tip of the CH treatments ice berg, but a beefy iceberg tip it is.  :)

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.

Sadly a perfect description of clusters. However, as has been said: It's not all bad. My neurologist knew the minute I described it to him what it was. That was very unusual but what a relief.... well....

Lots of good links on this thread and all over the place. Let us know how you're doing.

Charlie

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

Just damn, Damn! You have every reason to be scared. The pain of a CH attack is worth being ascairt of...but if you listen to those above there is a way to manage it.  After almost 25 years myself, the last 4 as a chronic, I can tell you I still get that feeling of panic when an attack is coming (11:30am-1pm; 4-6pm, 11pm-2am that kind of thing) but I take great comfort in knowing my O2 tank and mask are just sittin' in the corner waitin' for me, and my trex is nearby, and I will fight the beast with everything I can throw at it. Become your own best advocate. If Joe were here, he'd say, knowledgable people hurt less! Indeed. God bless. lance

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 :)