One of the lovely things that Guillian Barre Syndrome likes to leave patients with is parting gifts; these can range from continued buggy feelings in their legs, fibromyalgia to permanent nerve damage.
In my case it is something called Occipital Neuralgia.
I wanted to post about it on the blog in the off chance that other recovering GBS patients might be sharing some of the same headache pain that I have and hopefully I can help offer suggestions to stop misdiagnosis.
I was hit with GBS in May 2009 and during my recovery at the neuro rehab facility a headache began to develop and nothing we threw at it seemed to help. Eventually it got to the point where I would just take a percocet and hope it would knock me out enough to get some rest. The next step was to move on to morphine which I really did not want to do.
Now how to describe this pain... It is as if lightening shocks radiate out from the base of my skull around where it meets my spine and the lightening branches out across the back and top of my head. Pressure on the back of my skull seems to trigger the pain so it makes for weird sleeping positions in the attempt to keep pressure off my head. At the rehab I would lay my head on the pillow and the moment pressure came down on my ear the pain would start and just continually pulse.
Eventually while at the rehab the neurologist stopped by to see how I was doing and suggested a nerve block to see if it would alleviate the pain. I received the injection and immediately passed out for the day. It felt like I finally had relief from the pain for the first time in a couple weeks. Unfortunately this relief did not last long, I had about a 3-4 day grace period before the headache returned.
With occipital nerve blocks, you are only supposed to receive 1 every 3 months. I couldn’t wait for the chance to get another to try it out again and see if it would last longer. In the meantime my recovery continued and I met with other doctors and when I mentioned the headaches they constantly referred to it as a migraine and began prescribing medicines as such to tackle it.
Finally the 3 month mark came and I was able to get another nerve block. After getting it I felt drowsy and had my husband drive me. This time I had about 1 week of relative relief. By this I mean a level 6 constant headache got knocked down to maybe a 2.
What doctors did not seem to understand and I kept trying to stress was that this was a constant headache that would gradually increase or decrease, there was no time that I did not have the headache. The easiest way to cope with the pain was buying really good light blocking curtains for the bedroom (my eyes get light sensitive and noise drives the pain up even more) and I would rest in the dark bedroom for hours on end just waiting for the pain to stop. I also found that a heating pad targeting my shoulders and skull would help take the edge off the pain.
This process went on from August 2009 until about October 2011.
The constant headache had become much worse and I went in to receive another nerve block. After receiving it and driving home the pain then began to branch down through my shoulders and back and the pain was much worse. After downing who knows what all pain pills in an attempt to find any sort of relief I was able to get back in to see the neurologist after a few days and we discussed alternatives to relieve the pain. Among the options I was given a 30mg sample of Cymbalta which while normally given out for depression has been found to stop diabetic neuropathy. I went home and began trying the Cymbalta.
Within 3 days my 2 year long headache had finally stopped.
Now I can’t say it was a cure but it has really helped me get back to where I want to be as far as going out and doing things. I still get a headache at times when I push my body too far but it at least has offered me a potential solution. When I go out and put too much constant stress on my body I usually pay for it and end up spending a week of bed rest inside my dark bedroom with all the lights out, the air conditioning at 72F and the heating pad on my shoulders and neck.
When the neurologist saw the positive response from the treatment with Cymbalta it was determined my headache is attributed to occipital neuralgia rather than a migraine. If we had figured this out earlier, a lot of pain could probably have been avoided. I now use a combination of a daily 30mg Cymbalta dose and a nerve block once every three months to manage the pain.
I do hope that if anyone else comes into a situation with similar headaches during their GBS recovery that this can help them find relief faster.
Keep driving forward!
I am now being considered as a good candidate to try out Botox injections in my neck and shoulders. After I learn a little more about the process we may move forward on Oct 2.
Occipital Neuralgia Links: