FPA’s Facial Pain Network is a free support site for patients and caregivers. Click here to visit the site now.
Pat Akerberg, Ambassador, Facial Pain Network
Does your diagnosis and some of what you’re reading on line scare and worry you? If so by joining the FP Network, you are already making your first wise decision. Most of us on the FP Network have shared the same fears, questions, and doubts. So we understand, are willing to be your support network, and share our experiences, hope, and strength. It’s important that you keep the faith and rely on the fact that relief is possible. Here are a few hard won lessons that I’ve learned and can share with you:
Don’t let fear run the show. If you let it, this will actually make the TN pain worse due to the stress involved and can undermine your judgment if you allow it to.
Have an advocate. Besides yourself, it’s so important to have an advocate helping you along the way (a friend, family member, partner, TN support network, etc.) Read more on this tip.
Slow down/take your time. Many of you may be working, have families to raise and support, live alone, etc., and the sense of urgency to get the pain under control quickly might lead you into making hasty decisions. Read more on this tip.
Become well informed. Do a solid amount of reading (Striking Back), research, networking, and physician interviewing before you make any surgical or treatment decisions. Read more on this tip.
Know how to describe your pain. It’s extremely important that you learn to describe your pain well to those working to treat you. Read more on this tip.
Seek a clear diagnosis before taking action. Different treatments and/or medications have varying degrees of success, depending upon your diagnosis. Read more on this tip.
Medications and CAM. If the first attempts at a medication don’t work, don’t give up and assume that you have no choice but surgery. Read more on this tip.
One size does not fit all. When you hear about or read of someone’s experience on the FP Network, it DOES NOT mean that you will have the same experience or reaction. Read more on this tip.
Get more than one opinion. It took seeing 5 neurologists in my area before I found one who was familiar with TN. Read more on this tip.
Trust your instincts. You know yourself the best. If in doubt, wait until you come to a place of your own internal peace with any treatment decision you may make because research suggests that a person’s mental and emotional state do matter. Read more on this tip.
Modify your expectations. TN changes things, for you and for others around you. Read more on this tip.
Express yourself/don’t hold it all in. As hard as it is, it ends up being very helpful to reach out, share your thoughts and feelings, and ask for help if/when you need it. Read more on this tip.
Hang in there! Remember, most people now free of TN pain are out there living their lives and aren’t posting on the FPNetwork. Read more on this tip.
The preceding content is an excerpt from the FPA Quarterly Winter 2013 edition. You can view the full edition here.