Possible cluster headache?
Possible cluster headache?
Hi,
I have previously been diagnosed with migraine but my symptoms have changed and I feel they fit more with CH. I completed the questionnaire here and that suggests possible CH.
I have started to be woken up by excruciating pain on the left side of my head and eye around 4.30am for a few days each month. It makes me rock back and forth, I feel violently sick and I become panicked that I might die because the pain is so bad. It lasts a couple of hours and then stops almost as suddenly as it started. I then have a couple of hours of feeling ok before it suddenly starts again. This goes on usual for 3 days or so and then it stops for about a month. My left eye is blood shot and weepy and I get a dripping left nostril too. I take a triptan (naratriptan) which was prescribed for migraine but I'm not sure if it helps because of the sudden way in which the pain stops.
My husband is an ITU doctor and I have called him several times at work panicking that I am dying. I always feel ridiculous after the pain has stopped but whilst it's happening, it's hard to believe that the intensity of the pain couldn't kill me. I feel like such a drama queen saying that!
I am a dentist and have to regularly take time off because I physically can't work through that level of pain. It causes so much stress at work because it makes the manager and patients angry that I have to cancel at short notice.
I am sorry this is such a long message, I just feel at my wit's end with it. Is it worth speaking to my GP about possible different diagnosis or is it a migraine that I'm not managing appropriately?
Thanks
Kate
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Hi Kate. Sorry to hear about the awful time you are having. You should certainly speak to your GP and ask to be referred to a neurologist to confirm a diagnosis of cluster headache. Your description sounds exactly like classic cluster headache, though you need to be diagnosed properly by a specialist to rule out other possible causes of the pain. The effective treatments for cluster headache are a bit different to those for migraine. For example, you need to use an injectable triptan, which begins to work in minutes, rather than an oral triptan, which can take over an hour to have an effect. High flow oxygen is also effective for many sufferers.
Cluster headache is often described as one of the most painful medical conditions known, and you should not in any way feel that you are being overly dramatic. It can seriously affect quality of life, and so you should try and find an effective treatment regimen as soon as possible. The rescources on this website have a lot of information on which treatments are available and how to access them.
Daniel - Episodic CH
Hello. That does sound like Cluster Headaches but, as Daniel suggests, do get it diagnosed - I'm not really sure how I managed before I was prescribed Sumatriptan and Oxygen.
It's definitely worth putting some thought into what you need in terms of work, perhaps with the advice of your union or governing body. I'd imagine that there should be some sort of risk assessment in place around appointments. For example, I'm not allowed to make important work decisions while in pain or for a couple of hours after using Sumatriptan.
Good luck.
Hi Daniel,
Thank you for your reply.
I think it is possible that I will lose my job because of how much time I have off work with the pain.
I called my GP this morning after another sleepless night and they are sending me to the hospital. Is that normal?
Kate
I opt to take time off when I am struggling with pain because I know my decision making isn't great and I lose my patience quickly. I think of it as a safety issue. Unfortunately that is not how the managers see it as they think it is just a headache and I should take a paracetamol and crack on. It's very frustrating because I am only really thinking about the safety of my patients and even my nurse to a degree. Hopefully if I get a formal diagnosis, they may take it a bit more seriously!
It is usual for GPs to refer patients with suspected cluster headache to a hospital neurologist. Although in theory GPs should be able to treat cluster headache themselves, they are often very reluctant to prescribe the recommended treatments without a diagnosis from a neurologist.
Sorry to hear how much it has been affecting your ability to work. This is an issue that a lot of cluster headache sufferers face, especially because people hear 'headache' and think you just need a glass of water. David makes a good suggestion to get some independent advice on your work situation. Cluster headache is recognised as a disability in the UK, and employers are required to make reasonable adjustments. Of course the first step is to get an official diagnosis. There is a dedicated email address at OUCH (rights@ouchuk.org) to get advice on employment issues.
Do not lose hope though. There are a range of treatments which can be extremely effective at stopping or preventing a cluster attack. However it can sometimes take a bit of time to find out what works for you. I tried sumatriptan injections, high-flow oxygen and ketamine therapy, none of which worked well for me. Then last year I started with verapamil, and I have not had a headache since. Each of us is different, and it's therefore important to get the process started as soon as possible. If you are able to afford it, you could consider making a one-off private appointment with a neurologist that specialises in cluster headache. They can make an official diagnosis and write a letter to your GP to prescribe some first line treatments whilst you wait to see an NHS neurologist, the waiting times for which are currently very long.
Daniel - Episodic CH