| |
We are in a different category of TN sufferers. We are younger than most TN sufferers but old enough that we need to take care of ourselves, and more likely other people too. We try to find persons who can relate to our individual suffering. We would rather hear from someone our age then generations older about our pain and how you dealt it while balancing life. There is no stage of life that makes having TN easier. We have our own set of problems, worries and struggles. TN chips away at you emotionally, mentally and physically with every jolt of pain while dealing with college life or caring for a very young family and balancing adult life. When you have TN, you are on a journey to not just manage pain but to find an end to it so you can get back to your life and enjoy it.
These are things I learned being a “younger” TN sufferer. This is a quick summary to help a younger TN sufferer become assertive as they start their journey.
Take Control of Your Healthcare
TN affects mostly people over 50, so just the thought of a younger person having it may prevent a doctor from making an accurate diagnosis. You have to be your strongest advocate.
-
Analyze your attacks. Learn to really describe your pain and duration. Use descriptive words.
-
Log your pain attacks, durations, surrounding circumstances and description.
-
Contact TNA for doctor recommendations in your area.
-
You need to see a NEUROLOGIST knowledgeable in the area of TN.
-
The anticonvulsant, Tegrotal, is usually the first line of treatment and sometimes used to finish he diagnosis.
-
Don’t be afraid to ask how many TN patients he has treated and what outcomes when making your doctor appointment.
-
You have the right to an impartial medical assessment. Do not allow the doctor to categorize you into a general group of people with mysterious pains. This shows lack of knowledge in the area of TN.
-
Do not be afraid to ask questions. There are no dumb questions.
-
Do not be rushed when explaining your symptoms and situation with the doctor.
-
Do not allow a doctor attitude or approach demean or disrespect you because you are younger or a woman.
-
Make sure you can summarize the doctor’s thoughts so you fully understand.
-
Get copies of all your medical records and films, including phone logs and doctor’s notes.
-
Log and keep track of appointments and changes in medications.
-
Do not be afraid to call the doctor too much if they don’t return your calls. You have to make them take notice that this is painful.
-
Do not be afraid to change doctors. You are now on a quest to find a doctor that is knowledgeable in TN and there are not many out there.
-
Do not wait around for other people to make decisions for you. This will just prolong your pain. You take action to find help.
-
Be confident. Be confident in your doctor and treatment you choose. You are the one that has to deal with the pain. No one wants the pain gone more than you!
-
Write letters. Whether to thank a good doctor that has helped you or hold a doctor accountable for their actions. All doctors have to meet a standard in care.
Research
Research if you suspect TN or have already been diagnosed. My first neurologist told me my pain was caused by subconscious stress. In my heart, I knew stress couldn’t cause this triggered pain.
-
Do not allow the doctor to be your only source for answers. You will more likely become more educated in TN then him/her.
-
Buy the “Striking Back” book and read immediately. You will find yourself in tears because finally you will have understanding.
-
Read all you can about TN. Use the TNA resources, Internet and library.
-
Through the “under 30 willing-to-network” list, contact past sufferers. Find out their experiences and suggestions.
-
Do not be afraid to share your research with your doctor and discuss it.
Dealing with TN and Life
-
Accept it and take action. Sometimes in your pain-free moments you may minimize it or deny you have symptoms. Everyone wants the old pain-free “you” back as soon as possible.
-
Stay positive. It is extremely hard. This disorder can bring you down fast with thoughts of no relief. Be proud of what you did accomplish despite being in pain. You are a stronger person for it.
-
Be kind to yourself. Don’t set high expectations of accomplishments when in pain.
-
Talk to past-sufferers. Realizing what you are feeling is normal is a relief.
-
Have faith that you will find relief or end of pain. Hang in there.
-
Do not expect people to automatically understand. Many times you can explain your problem and they come out thinking you have a bad toothache or migraine. Realize the ones that truly understand are past sufferers.
-
Do not minimize your disorder. You have every right to make it sound the way it is. It is a serious cranial nerve disorder and brain surgery is one of the options!
-
Don’t worry about what people think. You need to focus on yourself right now to get through the pain.
-
Educate. Whatever stage you are at, educate everyone you know. Educate your family doctor, your chiropractor, dentist, family and friends. Maybe someday they will remember something you said and it could help someone else beginning the journey.
-
Be selective in what opinions to listen to. If choose brain surgery, be prepared for people to voice their opinion and suggest other alternatives. They may have good intentions but you are more educated in the area of options.
|