Hi - I would like to know if anyone has SFN and has experienced constantly headaches. If so, what helped your headaches, and what were your symptoms, and what helped you? I've had fibromyalgia for 30 years.
2 years ago, I was diagnosed with likely small fiber neuropathy, via a neuron cornea scan. I was experiencing cornea pain at the time, and tried both neurontin and lyrica. I unfortunately experienced a rare side effect from both drugs, so I couldn't take them. Two months ago I had a routine colonoscopy. I was not totally sedated. I experienced significant pain, which I complained about several times. Afterwards, I felt fine. No pain or sedation.

But while being driven home, I developed a very bad headache, that lasted the rest of the day. I couldn't get out of bed, as movement made it much worse, but lying down made me feel much better.
I was better the next day, but the symptoms persisted. I was prescribed flexeril by a doctor that thought I had a tension headache. Initially it helped, but then I woke one day and the headache was much worse, and constant. Neither advil or tylenol helped at all. I was given Fioricet, which also did nothing. I went to the ER, where they pumped me with 6 different pills and intravenous remedies. That helped for about 24 hours. I saw a neurologist, who suspects that I might have a CSF leakage headache, where spinal fluid is leaking, causing low pressure in the brain. The classic symptoms of this headache are that movement makes it much worse, but that lying down makes the headache go away.
I've not found any other condition which matches. Normal MRI scans are not good enough to diagnose this problem. So I need to have a spinal CT myelogram scan, which I will have next week, to try and see if spinal fluid is leaking. My experience is that tests for my neurological conditions never show any problem. The cornea scan was an exception! Small fiber neuropathy has explained many symptoms that I've developed in the last 10 years, so I'm wondering if it could explain the headaches also. Thanks for any help or suggestions. - Mark