For 25 years I have gone to doctors and described pains on one side of my head; like the dentist hitting a nerve and not stopping, but more painful, drooping and watering eye and a nostril on the same side as the pain and the watery eye, that feels like it's running but it's not. This is the way I have described it since my first attack, one bright, sunny, spring morning in 1984.

I described this to doctors whenever I was unable to continue working through the pain of the attacks, I had no idea what was wrong with me and suffered the full effect of every single attack the condition through at me.

Many doctors tried to find out what was wrong with me at first but after a few years they started refusing to give me any more sick notes after six weeks, saying they didn't know what to put down on their paperwork, so I kind of assumed that I was just soft. So, I got into a life of working until the attacks came, claiming sick benefit as long as I could, living off savings until the cycle ended and then find another job because without a sick certificate no-one was prepared to keep my job open.

All the while the standard of job and life declined, not to mention pride; no-one in my family even suffers migraines but hey, we gotta keep going each day and it didn't seem like the headaches were actually gonna kill me.

Now, I have not only been diagnosed but thanks to CH Forum I have found coffee prevents my attacks, (coffee was the first on the list of things doctors told me to avoid but hey...) I can get a job now I'm certain I won't have to let anyone down any more, so I decided that the best way to construct an honest CV was to include my medical record to explain why I have changed job so often.

The doctor first left a very indiscreet; open, slip of paper, torn off the top of a larger document, at reception. This was a summary of the illnesses and injuries I have had through my life, which had one entry for cluster headache (not even plural), diagnosed 2009. This summary stapled to my corpse would probably get the doctor a job but wasn't much use to me, so I wrote to the doctor asking for a full medical record which includes the times I was signed off work with headaches, explained what I intended to do with the information and even offered to pay for it.

He responded with a letter; not the record I asked for; in which he listed the periods I was signed off work for since 1995, stating in all cases that it was due to stress and depression; no mention of the symptoms I have described year after year and added that no other records are available.

I was in the RAF and then job to job in various cities prior to 1995 and doctors investigated many possible causes of the headaches. By 1995 I had run out of ideas and employers my dad lined up for me so I moved back to the rural estate I started from, with my mother lining up work for me. Until he told me otherwise I always assumed the doctor here had my previous records which would have included notes from the other doctors who examined me. So what were his decisions based on if he hadn't seen these records?

What do you think about this situation? I'm too upset to think straight. Can't he just bring up my record and click print? What's going on? I didn't think he'd done anything wrong until now, the fact that groups exist to raise awareness about CH was enough to make me realise that a rural doctor would have been a lot less likely to diagnose this condition than most; bad luck me but se la vie.

It is bad enough this condition is only called a headache without my doctor erasing twenty three of the years I suffered with it. Why is he denying any knowledge of my symptoms prior to his diagnosis in 2009?

Hi RasIbo
I dont know if this will be of any help... I am a nurse in the UK and on the odd occassion when the patients I am involved with have requested access to their medical records there is a proceedure to follow, it involves a written request explaining why they want their records and there is a cost.
The records are then assessed by the Dr and can have information removed if the doc thinks it necessary.

Sad to comment that your story of years being unable to obtrain appropriate Dx/treatment is one of the worst we have ever seen.

But to the response: 1. you have a legal right (I understand) to request treatment by any headache clinic which you wish to use.
2. I suggest you immediately contact your excellent support group to seek information on how to pursue this right for care.
            START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

3. Over the years we have seen the development of several meds effective in reducing the # of attacks and treatments to abort the attacks. So, there is much for you to learn about how to care for yourself and guidance in seeking the excellent headache clinics which are available.
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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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See the PDF file, below, for an overview of the commonly used treatments.

These two articles are just to get you started. Would strongly suggest that you--first step--take action to get lined up with a headache clinic. A solid diagnosis and treatment plans is essential.

Stay in touch!

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Hi,
It's really good to hear from you, my family were so happy to put CH behind us that I didn't want to say anything to them and they also want me to complete a project I started preparing before I was diagnosed.

My phone request to reception for my records was probably a bad move because it seemed like the doctor retaliated by laying the open summary of my record on a table at the back of reception. That, for me, could have only been worse if he nailed it the notice board at my son's school in the village.

I wrote to him next but he just wrote back and altered the facts in his letter; diagnosing me as stressed and depressed; I would have certainly appeared stressed and depressed during a CH cycle but I'm sure the symptoms I have repeated so many times in my life must be on the proper record.

How does it make you and your colleagues feel when a patient asks for their records? I suppose, potentially it could mean trouble.

After all that, this is the guy who saved my son's life and if he helps could vastly improve our lives by getting me back into society. Do you feel he may help me if I assured him that I would not then use the information I need, to harm his reputation or try to claim all the back dated sick pay he saved the government by not helping through my CH cycles.

You can do any or all of those things BUT it tastes like getting divorced from a miserable marriage and then writing letters for months trying to convince your ex- why you are the good guy.

And I only imagine with despair trying to convince some govenment panel that you deserve XX money for XX lost jobs or XX jobs you avoided taking because you knew you could not perform......etc.....

Holding onto wounds is holding onto pain.

There is much to be done to help yourself: finding a good clinic; working towards an effective treatment program; learning to to live with a chronic problem without becoming a victim of the disorder. Being good to yourself will fill your plate.

Just to clarify my long post: I just wanted medical records to help me explain why I was forced to leave so many jobs over the last twenty five years. Because awareness of CH is increasing and treatment is so effective it is hard for me to make people realise that the condition has ruined my life; not even knowing what was wrong with me; leaving me at the mercy of every session the torturer had to throw at me.

When I first came on this site I was actually trying to tell people how to live with the torture; giving up aspects of life, agency work, trying to hide the pain to relieve stress on family members, our increasing tolerance to pain... Was shocked and embarrassed when people said hey what the hell are you talking about and told me of a simple remedy which worked instantly and keeps on working.

Cannot allow myself to believe the torture has gone forever; I have to be prepared for its return but I want to make the most of its absence, as always and now I have been diagnosed, employers can no longer let my job go if it does return, so back to the grindstone is my plan, despite surprising opposition from my partner.

Since your questions involve issues of law and local medical practice, I'd be reluctant to let U.S. based judgments guide you. Again, suggest you outline these problems with your (UK) support group.