I'm new here and I'm not sure if this warrants a new topic but I really wanted to share my experience with the way the National Health Service treated me. (BTW...I'm in no way bashing the NHS as you will see)

I was first diagnosed when I was 18 (I'm now 20) by my GP. I was informed that it was rare for the people of my age to have the condition; although I'm not sure how true this is. I do not however have a bad word to say about my GP, as he was sympathetic and informed me that there was always an appointment open for me if ever I needed it. He was helpful, understanding and pointed me to such resources as this site to which I have been a lurker for the past two years.

The horror story starts when he routinely referred me to the hospital a while later. The neurologist I saw called me a liar in not so many words and preceded to take me off the medication (injections) I had been prescribed. He also said that if i wasn't willing to go on the TRIAL medication he proposed, I would no longer be eligible for any treatment. I never returned.

Afterwards, I returned to my GP and made it clear my disdain the way I was treated. My GP told me there and then that the said neurologist had completely botched my notes, and even though it wasn't his field, his piers evaluation was contradictory and generally sloppy. He luckily re-prescribed my meds which saw me through to the middle of last year... However he's now however retired from the practice and I feel a bit lost as to where to go now and have now been dealing with my attacks without the injections that felt like a lifeline beforehand. I feel as though if I return, the fact I never continued consultancy the the neurologist will work against my favour and I'd hate to be treated like that again regardless. I'm sure all my fellow sufferers will understand that having a condition like CH dismissed as a joke from a medical professional would be heart wrenching.

This has been a condition that effects my life on a day to day basis and has completely changed the way I perceive the world around me; I've faced exclusion and misunderstanding from even the people I am closest to because they don't understand how it can effect a person and it's 9/10 written off as a ''bad migraine'' by others

Regardless of all of this, I will make it my life's work to somehow raise awareness, as I work in the media, for all of you out there who may have been treated the same and for everyone who are also sufferers of this dreadful condition.

Sorry about the long message, but all my thank you's go to this site and the invaluable advice contained within it's people and pages because without you all I would of felt like no-one was willing to give advice or empathy.

Stephen

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Sadly, your experience is too often reported to us. Two responses: work with your excellent support group on dealing with your system.

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

Second, I understand that you have a legal right to be referred to a headache clinic, by-passing local health providers. The OUCHUK folks can guide you.
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While you are taking these steps, start educating yourself by exploring the buttons, left, starting with the OUCH site; ditto for your UK group. If you have specific questions about Cluster, post them and we can send some basic medical material.

Fortunately for you, you are coming along at a time when there are some helpful treatments available and a growing sophistication in knowledge. But patience!
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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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Print the PDF file, below. These are the standard meds used to treat Cluster.

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It is such a tragic story we have all lived and we do understand. However, having said that, you need to get a firm grasp on your own treatment. You wrote:


Quote:

He also said that if i wasn't willing to go on the TRIAL medication he proposed, I would no longer be eligible for any treatment. I never returned.

What was the "trial" med? You describe injections, which are probably a triptan. As such, they are abortives and only part of what we need to combat the beast. Let us know what you've used and the plan you have. Maybe we also can help with some advice on what has worked for us and perhaps it can help you, too. God bless. lance

Welcome to the board, and yes, sadly, your tale is a bit too common on your side of the pond, as well as on ours!

Lance and Bob have started you out with great advice. Knowledge is your most powerful tool against the beast, use these boards to educate yourself, and then work with your doc to form a long term treatment plan. Great to have more media on board to help get the word out.

Joe

Hi both of you. My injections were indeed triptan. He described the trial drugs as a more aggressive form of steroids, which he wanted me to go on long term. I'll try to see if I have any paperwork with the name. Having already been on a lot milder sterioids for three months prior to this, I knew how delapadating they could be. I understand his intention was to help, but being 18 and told that I was goin to be put on long term prescription medication that would ravage my body was never going to be an option for me. I may not be a medical professional, but even I know that it isn't healthy to constantly be on steroids. I felt that through
way I was treated, I didn't then want to act as a test guinea pig because regardless of him dismissing cluster headaches as a whole, I was to have no further tests before this medication was meant to be administered. I hope this makes some sence?

I'm also not a fan of prescription medicine as it is, but being only young this is likely to change.

I just wanted to share my story because if it hadn't been for my wonderful GP, I hate to think how things would of panned out for me.

Get in contact with the OUCHUK group, at once. Really need some guidance both re. meds and working with your healthcare system.

For some good basic learning this manual  worth printing:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

In a PDF file.

Hi Stephen,

Sorry you have to be here.

That's quite a story. The Neuro you saw - was he one who specialises in headache  disorders? Be nice to know who it was.

There are so many questions to ask and advice to give on what you can do it would be to your advantage to call the OUCH(UK) helpline (number below) and speak to somebody. Leave your number - preferably a landline number - and somebody will call  you back.

Rod

Thank you for your reply, Stephen. Now things may be making a bit more sense. To begin with, the triptans are a great abortive. O2 is better, in high flow with a good nonrebreather mask. High flow begins minimally at 15lpm, but is much more effective at 25lpm or more.

The steroids (maybe prednisone, or methylprednisone) are a solid intermediate Rx. Generally given in a two or three week taper, starting rather high, and gradually tapering down. They can, and have, interrupted some cycles successfully, but often become less effective as you move toward the lower doses. They tend to be used to provide relief while a longer term preventative builds up in your system. Things like lithium, verapamil, topamax, etc. They may have different names in the UK, but are the same meds.

There are no diagnostic tests for CHs, just tests to rule out other diseases that mimic CHs in symptoms. I understand your reluctance to get on meds long term, but you have to weigh that reluctance against the pain and disruption these things cause. Hope this helps you determine a good course of action. God bless. lance