Hi all,

Sorry this might be a bit long, I’ve have been round the houses for the last six months with no proper diagnosis as yet.

I started having a pain in my right eye in Dec 2010 every few days. I thought it was eye strain (I’m in front of a computer all day) and went to the opticians who confirmed this and recommended glasses. I couldn’t afford them at the time as I was about to go on holiday for five weeks (lucky me!) so left it until I came back (I live in the UK). Throughout the trip I had this annoying, reoccurring, pain in my eye which puzzled me as I was nowhere near a computer.

I went to a second (different) optician in Feb, who said there was nothing wrong with my eyes and to go the doctors. By this time the pain was daily, several times a day, in the same eye. One of the GPs at the practice just suggested I go back to another opticians as she didn’t know what it was (I was taking ibuprofen to no effect). Instead I went to an eye hospital who again confirmed there was nothing wrong with my eyes.

At this point the pain in my eye was accompanied by a headache on the same side of my head at regular points during the day, and worse during the evening. I went back to the GP (saw a different one), who suggested cluster headaches or a type of migraine and I was referred to a neurologist on a five week waiting list. He prescribed my cocodamol and a higher dose of ibuprofen.

My headaches got progressively worse. I thought I had an aneurism – my cousin died from one at my age (31). In April I went to A&E only for them to tell me to continue the wait for the neurologist and take some tramadol. The headaches got worse.

I have since seen the neurologist who sent me to have a scan (yesterday), and took me off the tramadol and cocodamol and prescribed me naproxen. She was meant write to my GP to tell them to prescribe me triptans. The GP hasn’t had the letter but has prescribed me sumartriptan 50mg.

I thought that after stopping the tramadol and cocodamol it seemed to calm down to some light head and eye pain (which was a relief!), but the last three days have been hell.

I won’t get my scan results or see the neurologist again until 28 July, unless there is something serious. I can’t afford to go private so have to wait out the NHS lists.

I have taken two days off work this week. I sit in the office poking my eye and holding my head, then go home and do the same thing. It is getting me down.

Some of the headaches are really nasty. The nasty ones last from anything from a couple of minutes to fifteen minutes and tend to be towards the end of the day, especially in the evening, then I’m completely ok again – no pain.

I sometimes have low level headaches and eye pain on the same side that last for hours (today’s has so far lasted seven hours!). I don’t get them during my sleep, I don’t get a runny nose, headaches sometimes start upon waking, I get hot during a nasty one and my eyelid droops a little. I found a small lump behind my right ear lobe a few days ago (it’s not a spot – hope this doesn’t sound silly!).

I have not had a pain free day since early Feb. I am in pain now.

Can anyone help?
Angela

Suggest you contact your excellent support group:
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You are fortunately to have access excellent speciality hospitals re. headache. (Following are bits and pieces of messages but convey names of import.)

Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

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and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
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City of London Migraine Clinic [and other types]  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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We have too many complaints from the UK about poor quality of care for headache. I'd work hard to get with a specialist  vs. a general neurologist/family doctor.

See the PDF file, below, for an overview of treatments. This information will give you some tools with which to talk to any doc you see.

By way of learning basics about Cluster:




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 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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Thank you! I have an appointment with the London Migraine Clinic next fri...heres hoping!

Hi Angela!

So glad Bob hooked you up with the London migraine clinic. With any luck they oughta be able to give you a definitive diagnosis alright.

I'm afraid your symptoms sure do sound like they could be CH to me  :o  (I'm not a medical professional though). Meantime I figure no use getting all worked up about aneurysms, lumps behind the ear etc.

There are a variety of very effective treatments for CH now, several of which are outside the incredibly slow moving medical mainstream. And they are mainly found through info and advice here, so you must stick around if you get that CH diagnosis!

Meantime, a high dose vitamin D3 regimen is a very recent hot topic here since many CH'ers are reporting it prevents their attacks. Here's that thread: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I'm afraid the sumatriptan pill prescription you may get is too slow acting for most CH'ers, as we tend to benefit from use of injectible or nasal spray form of sumatriptan for aborting attacks, but some CH'ers report the pill can prevent attacks that would've otherwise occurred 1/2 to 1 hour or so after taking the pill.

[Edit:] In honor of Giusseppi, an energy drink enthusiast and a regular around here who is away right now, I'll go ahead and mention that some find an energy drink with lots of caffeine and taurine (like Red Bull) guzzled right at onset of attack can abort it or lessen the severity

Thanks - lot of learning today. I've got some magnesium and vit B, so I'll buy some vit D tomorrow and see what happens whilst I wait for the clinic.
Thanks again!