Chronic Headache? Please read.
 

hi, I wanted to share a bit about my experience with chronic headache. I see a lot of posts on here with similar symptoms I have suffered and I wanted to suggest to some of you that a neurologist may not be able to help you with your symptoms. I am not saying anyone with chronic headache has the same disease as me - that would be unlikely. I just think for some of you it may suggest an area you could look at.

I have an autoimmune disorder of which there are many. They often have overlapping symptoms but essentially are different. The chances of anyone on here having the same disorder as me are pretty slim but may come from the same 'stable' of autoimmune related disorders. It takes a specialist in the area to work out specifically what disorder it may be.

The pain I get is very debilitating and can last for days to even weeks. I have ended up in casualty on a few occasions because of the pain and admitted once for 10 days. MRI is always clear and there is no neurological disease as such. Lumbar puncture clear. This is why a neurologist really has nothing to offer me. If there is something wrong with the structure of your brain, disease in the brain, they will find it.

My complaint, in the end, was diagnosed by an immunologist and I now see a vasculitis specialist for treatment and have been headache free for 3 glorious months now.

What you're experiencing may not always be headache or even migraine as such but rather 'head pain'. I always make the distinction because to me it's very important. Some docs just didn't understand what they were dealing with.

In my case I suffer from inflammation of the meninges and it produces mad, extreme pain and neuro symptoms. This inflammation will not show up on mri and most neuro tests will be unremarkable. There are also classic migraine type symptoms, pressure pain in my eyes, jaw and ear pain and pain and stiffness in the neck. If you are having chronic headache please consider this as a possible explanation. You will really not get any results going to a neurologist.