Anyone with small fiber neuropathy and constant headaches?
 

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

Welcome to NeuroTalk:

Can you explain this corneal scan for us? I am only finding corneal scanning being done on animals so far.

I did find this very new study, from 2015, but the study group is small:
http://journals.lww.com/corneajrnl/A...orneal.22.aspx

I cannot recall anyone else coming here who had this corneal scan yet.

When you had your colonoscopy done, did you get spinal anesthesia? Spinals can sometimes cause headaches or leaks.
But a leak is less likely is you did not have a spinal.

A leak can come anytime though, but those are not very common.

Patients with neuropathies can be low in magnesium. This is very common in just the general population. Magnesium therapies have been used in treating migraines successfully, too.
So you could take a good supplement (not oxide forms), like SlowMag twice a day. This is about 1/2 the RDA and may move you up if you are mildly low due to poor food choices.

Here is the SlowMag website, it is OTC:
http://www.slowmag.com/
If you feel better on this (should be a few days only to see improvements) you could cancel the invasive myelogram.

Thanks for replying so quickly!

I went to the hospital here in Boston, MEEI, where Dr. Pedram Hamrah has been doing corneal confocal microscopy scans for a number of years on patients, and has published some studies. The only advantage is that it avoids having to do a biopsy. In any event, I should have mentioned that I'm already taking lots of magnesium, and have tried adding more, and also adding slo-mag, with no effect.

I did not have a spinal anesthesia. My present theory is that the oral sedation drugs, have the ability to lower the brain's pressure, and that I had a rebound effect that caused the leak. Or perhaps dehydration was a factor. However, I've read of people who simply wake up with the condition, without any specific trauma! I've read that many doctors believe that the condition occurs much more frequently, but that it resolves itself on it's own, for most people. Not for me, at least so far! We'll see. - Mark

I had the cornea scan done here in Boston at the Massachusetts eye and ear hospital. The only advantage is that it's less invasive.

I didn't have a spinal anesthia. But a lot of doctors believe that spontaneous leaks can occur with very minor trauma, and that it goes undiagnosed in a lot of people, because the problem resolves on it's own.

I tried adding magnesium and also slomag, without any effect.

Hopefully, I simply have a small tear, that the scan will show.

Thanks.
 

Thanks for replying so quickly.

I had the cornea scan done here in Boston at the Massachusetts eye and ear hospital. The only advantage is that it's less invasive.

I didn't have a spinal anesthia. But a lot of doctors believe that spontaneous leaks can occur with very minor trauma, and that it goes undiagnosed in a lot of people, because the problem resolves on it's own.

I tried adding magnesium and also slomag, without any effect.

Hopefully, I simply have a small tear, that the scan will show.

Hi. It can still be the sedative that was used. The medicines we take are processed through enzymes found primarily in our liver called cytochrome p450. We are not all created equal in how these enzymes function. If medications are combined on possibly an already strained enzyme there could be a fall out.

This article explains about headaches

http://www.achenet.org/resources/dru...h_for_and_why/

This article explains the p450 and lists drugs you may have taken and which enzyme would be used to metabolize

http://www.drugguide.com/ddo/view/Da..._Should_I_Care