Hi I'm Lisa, I live in Kent, UK. (I suffer from an underlying condition called ehlers danlos syndrome hypermobility type (EDS). this causes the ligaments and tendons to be lax, subluxations and joint pain)

I used to get migraines, but they changed into cluster headaches ( I think). i havent noticed a pattern in frequency or figured out an initial cause, (my neck is getting an MRI soon to see if there is a problem caused by the EDS.) They always are the same though. About lunch time/early afternoon I get pain in my neck radiating up the right side of my head on and off, getting worse each time. by about 6pm it matches the pain level of a migraine and keeps getting worse.  usually kicking in properly at about 8pm-ish,  i have no interest in eating dinner, my vision starts to blur and i can't tolerate wearing my glasses anymore, during his time i usually end up grabbing my neck, tilting my head to the right, pulling my hair, squishing various bits of my head including temples and across eyebrows to relieve the pain. I cant bear any light source, and somewhere between 9pm-3am I'm usually curled up in the foetal position with one hand on my neck and one on the right side of the head , the pain is excrutiating. My right eye swells a bit and waters ( i noticed the swelling in the mirror last night, mostly i'm walking around the flat with my eyes closed). My memory of the day is usually patchy - not remembering saying things to people etc, i can't concentrate on anything, just thinking about moving hurts. I get that for one day, when i wake in the morning they are usually gone but i feel wierd all day. i think i've triggered them before when i've tweaked my neck.

I went to dodctor the day after one where i was contemplating calling them to knock me out at 3am. I've now been prescibed ocycodone for them (i think i was told it was cluster headaches then) which work if taken early enough, when it kicks in my pain changes to a burning/stinging sensation behind my nose, eyes and forehead region. Because my doctors are throwing the word migraine around still, i get wierd looks from pain specialists when they see i'm on ocycodon for 'migraines'. I am going to see doctor for definative diagnosis.
I don't understand what people mean by cycle, and have never been told about oxygen helping, stupidly i've not been to see a doctor when i have one, as usually worst bit is 1-3am ish and i don;t want to cause a fuss, also transport to anywhere is an issue.
Thank you for reading my rambling, i feel a bit lost with them at the moment, so it nice to find a place to seek understanding of whats going on.

I'd encouage you to explore your excellent support group for basic information and, especially, to learn how to use your health care system to obtain skilled care for Cluster.
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Your present treatment of pain meds only signals a doc who has no experience treating  the complexity of headache. Too many of the folks writing from the UK convey this problem with their local docs and you would benefit from learning how to access the excellent treatment centers which are available to you.
===To start some basic learning:




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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Also explore:


A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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You will be offered a variety of treatments for Clusters but it would not be useful, even safe, to use them until you have had a good diagnostic work-up by a headache specialist. I worked for some years with a lady who also had ehlers d... and it was a disorder which required skilled attention for it often confused both diagnosis and treatment of her whole health profile.

Glad you found us....Keep us informed.

Hi Lisa,

Sorry to hear about how severely this is affecting you.  :(

It does sound to me as if seeing a genuine headache specialist for a definitive diagnosis would be the way to go for you - we've seen others in the UK be able to insist on this. I bet it would be worth figuring out a way to arrange for transport.

It's certainly true that a doctor knowledgeable about CH would be unlikely to prescribe oxycodone.

When you see talk of cycles around here, it's because the majority of us, the "lucky" ones, are episodic as opposed to chronic. We experience CH in episodes that last for part of the year, then go into remission, then start back up.

Welcome to the board Lisa. I'd encourage you to make contact with the OUCH UK board also, as Bob suggested, it's generally the quickest way to get on the right track. Then start reading everything on this board. We find a knowledgeable patient tends to hurt a lot less. Glad you found us, I hope we can help you a bit.

Joe

thank you all for your advice, i will be looking at all the links you made available to me :)