Finding Inspiration in 17+ Years of Neuralgia
Diseases
Chronic Pain, Neurological Disease, Rare Disease
Issues and Challenges
Christy has encountered: Access to Expert Providers
My Story
In 2012 I had been in the hospital a week for severe head pain. No one could figure it out and doctors were about to give up. My husband kept suggesting things, trying to get help. One suggestion finally made the doctor think "nerve damage", and he tried a nerve block on the occipital nerves. We could tell a difference, so that led to the diagnosis of Occipital Neuralgia. I was pain free for 2 glorious weeks, and finally had a name for what plagued me for years. About 5 months later, I got another diagnosis, Trigeminal neuralgia.
I was put on anti-seizure medication to try to help the nerve pain. None of them would help and actually gave me terrible side effects. Antidepressants and headache medications were all tried to no avail. I went from doctor to doctor trying to find answers, desperate for relief. Many did not want to treat something they could not see or believe was there. Others wanted to repeat the same tests that had been done.
The impact of having an invisible illness is hard. So a lot of research goes into finding a good doctor. There are now many support groups online that can be helpful. And more people speaking out, raising awareness helps a lot too. More education for doctors would help here. They spend very little time in medical school on conditions like this.
Finding a knowledgeable neurologist has been difficult. Especially one who knows the proper treatments, which are not many. Opioids do not work for nerve pain (for most people) because of the receptors they use so most doctors will not use them. They want to use anti-seizure medications, antidepressants and some will use headache/sleep medication like Elavil. Nerve blocks can help, if done correctly. The second nerve block I had actually made the pain worse. Same with Botox. There are some who have Ketamine infusions for nerve pain. I have had a ketamine shot once in the ER...I didn't feel any pain. For the first time in more than a decade my pain was below a 5!
There are a few surgery options available but not many doctors will even discuss it. MVD and gamma knife are the ones I checked into. The surgeon said I would not be a good candidate sadly.
I am unable to work due to this and other conditions. I have been lucky enough to find some things I can do from home and at my own pace.
As an ON vet (17+ years with this), the best advice I can offer would be to research a lot, join support groups, learn your triggers and avoid them as much as possible, and definitely most important - speak up. With invisible conditions, being your own advocate is a must do. Don't let doctors take the lead in your care. You have options and they don't always know the most up-to-date treatment/ care options. (Sorry if that sounds harsh. It's just a big thing I've learned over the years).
My Motivation and Inspiration
I want a better life for people like myself that have these conditions. I want us to be able to actually live and not just survive. My kids are my daily inspiration to keep fighting.
Someone has to stand up and be a voice for us. If just one person speaks up, tells their story, my hope is that more will.
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