Hi There,

I’m Danny, 25 from the UK. I’ve recently stumbled upon this website after doing some reading into Cluster Headaches.

I’ve been suffering from really severe headaches since my early teens (at least from what I remember), I’ve always dismissed them as being due to a mixture of things like Dehydration, caffeine, smoking (as I’ve got older), I even started to think it was the air pressure changing. I’ve pretty much thought of EVERYTHING that could kick-start one of my severe headaches but nothing really adds up. All I know is:

-      They f***** hurt! It’s like a throbbing pain behind my eyes, like someone has a vice and is clamping down on the nerves behind my eyes. If I stand up quickly, it POUNDS to the point where my eyes close and I need to hold myself up.
-      They seem to happen on weekends, I went to see an optician about it as maybe it is my eyes being so accustomed to being on a computer screen for 10+ hours a day. My eyes are fine. I thought it may be the transition between natural light / false lighting. Again, it’s viable, but not consistent.

Now, I really hate hypercondriacts. I’ve dismissed Migraine over and over (friends and family all tell me it’s Migraine) but the symptoms don’t fit. I don’t feel sick or have any nausea. Dark light is soothing, but I don’t get the feeling that I need to turn all the lights off. I’ve just dismissed the headaches throughout my life, hoping that I’ll one day figure it out. Here I am, 25 years old and still none the wiser.

I went to see my GP two weeks ago about quitting smoking. While I was there I mentioned the headaches. This was the first point in my life that I heard the term ‘cluster headache’, he didn’t directly say that this was what I had but he also mentioned stress, which I do have a fast paced job, but  I don’t feel stressed, at all. I told him that I’ve tried all over the counter pain relief but none have any effect at all. Co-Codamol makes me feel a little better, but I’m not sure if this is a placebo effect from when I was younger and took them for an unrelated problem.

I was pretty annoyed when he prescribed ‘Paramax’. This contains Paracetamol and metoclopramide hydrochloride, used to treat sickness. I specifically remember telling my GP that I didn’t suffer from any kind of sickness or nausea. I went again today only to be told that I should wait until I’ve quit smoking and I’ve been smoke free for a while. I explained that I had the headaches in my teens before I smoked and that smoking wasn’t the cause, but she wasn’t interested. I’m considering just bypassing my general practitioner and going direct to the hospital?

We recently had a family holiday to Florida, we scrimped and saved to go. I spent 3 seperate days at home while the rest of the family went to Disney land and the likes due to my headaches. I’m getting married in September, I don’t want a headache on my wedding day. I need a way to prevent it; or to help the pain. I need to know that this is what I have.

Your views?

Danny

You have an excellent support group: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
They can give you all the medical information you need plus guide you thru your health care system.

Our experience with UK folks strongly suggests that your local docs are often often lacking in understanding of Cluster and, therefore, give poor treatment.

I understand that, by law, you can ask for a direct referral to a headache clinic. (OUCH can speak to this issue.)

While you are working on these steps, here is some background reading to help you understand the nature of Cluster.
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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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When you get to a headache specialist, the types of meds you may expect to be given are outlined in the PDF file, below. It's a good tool to print out and use to discuss your options with any doc you see.

The picture for successful control of Cluster (there is no cure) is really quite good. But you must get to the right doctor.

Keep us informed!

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Danny,

Welcome aboard...  You've come to the right place...  Having said that, we don't have all the answers...  You need to contact the folks at OUCH-UK and ask about the best way to get to a neurologist for a proper diagnosis...  The OUCH-UK site is at the following link: 

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

Call their Hot Line at 0 1646 651 979

Check your PM InBox at the top of this page.

Take care and again...  Welcome aboard

V/R, Batch

Jaffa wrote on Jan 25^th, 2012 at 10:27am:

-      I was pretty annoyed when he prescribed ‘Paramax’. This contains Paracetamol and metoclopramide hydrochloride, used to treat sickness. I specifically remember telling my GP that I didn’t suffer from any kind of sickness or nausea.

Hi Danny,

your Dr may be more on the ball than you realise. Firstly they did pick up on the possibility of cluster headache, which is a good start (from the stories of others many doctors miss this as a possible diagnosis). This may be an important first step in getting a definitive diagnosis.

Secondly the prescription of metoclopramide is not unreasonable since it does have pain relieving properties in migraine headache. There would be many doctors who may not be aware of this. Whether or not it will be beneficial in your case is another matter, but not unreasonable for the Dr to give it a try when the diagnosis is somewhat uncertain.
See: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Also try a Google search for "metoclopramide headache"

Cheers,

Dave.

Well I'm still no closer to knowing what is wrong. I still don't even know if it is CH that I have.

I went back to the doctors and explained that the Paramax tablets didn't really do anything for the pain, infact, nothing I take does. The strongest painkiller I can buy 'over the counter' is Co-Codamol (8mg Codeine and 500mg Paracetamol) and taking two barely has an effect. At the time I was quitting smoking and the doctor told me that I would have to wait until I've given up smoking before going any further with the headaches.

I explained that I have been having the headaches since my early teens and I only started smoking at 19 (I'm 26 now) but she just wasn't really interested. Frustrating.

I had another attack 2 days ago whilst visiting my dad. It was staggering pain. I felt the headache coming on around 11AM and took some co-codamol that I had in my car straight away. An hour later and the pain was absolutely crippling. I just wanted to curl up and die.

He gave me two of his Tramadol (he has arthritis) which suprisingly took the edge off the pain, but I was still hurting. I get married in September and I do not want our special day to be ruined by a headache.

I will be going back to the doctors next week and won't be leaving without a prescription for the pain and a referral to somebody who can help me.

Oh, and thanks for the link to Ouch UK. Unfortunately you need to pay to become a member before you can post on the forum?

The referral to someone who is a headache specialist, and even better one who is a CH specialist, is the right way to go. Your pursuit of a pain alleviator seems limited to a narcotic intervention. If you have CHs, these will be of little value. Why not try some of the more common abortives? Things like O2, imitrex and migranal? Not pill form but inectable or nasal spray. Under a dr's care, these can go a long way in helping to establish not only what works to abort the attack, or doesn't, but also provides clinical data from which to make a diagnosis. Blessings. lance