I was diagnosed with Cluster headaches last year after my attacks had finished by my neurologist. The previous two years I'd had 2 week long episodes around late August early September time. At the time I didn't know what the pain was or what was happening, I just put it down as dehydration or being over tired from work. These attacks lasted around 1.5 hours and whilst the pain was intense I was able to handle it.
This year my attacks started at the beginning of September and haven't stopped. I'm getting around 8 a day and I haven't had a day off. It's always on the left side of my head, starting behind my eye. My eye waters and my left nostril gets stuffy so I know it's coming. The pain then spreads to around my ear area and the pain is indescribable, I'm pretty much incapacitated. It's like nothing I've ever experienced.
My GP put me on Verapamil 3 weeks ago, 240mg daily. Whilst it's helped, I'm still getting pain coming through. Normally around 6 - 8 on the pain scale, which I can Normally handle but sometimes I need to get on the oxygen.
I have Sumatriptan injections but I tend to save these for when I can't handle the pain anymore or just need a break. This and oxygen is the only thing that stops the pain for me.
I'm on a course of Prednisolone steroids which don't seem to have done anything. In fact since starting taken them I've started to have neck pain/stiffness during an attacks on my left side.
I guess I wrote this because no-one I speak to really understands what I'm going through or how it feels. Calling them headaches isn't right, this is something more. I've realised I need to learn to live with this. I have 2 young children which need caring for and I need to work to support them.
So I guess my questions are.... Would it be better for me to be under the care of a neurologist consultant rather than my GP? I never see the same GP twice so I find myself having to explain everything repeatedly.
Is there anything I can do? I've cut out alcohol and have stopped exercising. I'm trying to get good sleep but it's pretty much impossible when I'm woken up in agony after being asleep for a bit and every morning at 0430.
Is it normal to have neck pain/stiffness? It doesn't happen that often but when it does, its another level of pain I didn't know existed.
What are shadows? I've come across the phrase but I'm not sure what they are. Is it the dull ache/throbbing I feel behind my eye but doesn't develop into an attack?
Can lighting, head position and looking at screens trigger an attack? I feel that if I'm sat down with my head to the left or looking down it can bring an attack on, although I could be imagining this!
Thanks for taking the time reading through all this. I'm trying to understand Cluster headaches and there isn't too much information out there!
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