Advocating for Self - Basics
The biggest question I answer and see on the various boards after
“What caused this?”
“What should I know before I see the Dr?”
Trigeminal neuralgia, also known as tic douloureux, sometimes is described as the most excruciating pain known to humanity. The pain typically involves the lower face and jaw, although sometimes it affects the area around the nose and above the eye. This intense, stabbing, electric shock-like pain is caused by irritation of the trigeminal nerve, which sends branches to the forehead, cheek and lower jaw.
What Should I know BEFORE I See the Doctor
Although trigeminal neuralgia cannot always be cured, there are treatments available to alleviate the debilitating pain.
Normally, anticonvulsive medications are the first treatment choice.
Surgery can be an effective option for those who become unresponsive to medications or for those who suffer serious side effects from the medications.
Advocating for Self
You Are Your Best Advocate
Your know your body, you are the one in pain, and you know what effects – good and bad – the medication is having on your body.
- Keep a Journal: Online or hand written. These notes are really handy for you to reference later.
- Note Key Details:
- Pain Levels.
- Meds Taken that day and What Times
- Side Effects: Hard to swallow, hives, dizzy spells etc.
- Use times as often as possible. Though exact is best approximate is ok – after 11am but before lunch at noon – for instance.
- Note Key Details:
- Keep Copies: ShelleyRae keeps copies of the letters she sends to the Drs. with dates and responses. Sometimes glitches happen.
- Research: Frequently on the bottom of pages and posts there are links to experts like the American Association of Neurosurgeons. Note the link and take notes on what you may want to discuss with your Drs.
- Be consistent. We’ve seen clients switch from talking pain as 1-10 and pain as McGill at 0-75. Choose one way to speak and stay with it.
- Research the Meds: There are standard meds that Trigeminal Neuralgia patients are prescribed. And everyone wants to know what the side effects are. Below a few are listed with links to tan overview and side effects.
What if I’m Not Believed?
It is not uncommon for Drs to not really focus on their patients. This is obviously rude but more importantly – it’s dangerous.
Your GP is your primary care physician. They should be focused on your care. They are there to support your holistic self. They are also your primary resource and referral partner.
If they choose to not fulfill this agreement – which by being your primary care physician, GP or family doctor, they have agreed to – then look into finding a doctor with values that closer align with your own.
What if my Family Doesn’t Believe Me?
As trigeminal neuralgia patients we are overwhelmed. Our families and friends are in the horrible position of suffering the pain with us and also being helpless to stop it or even really be of comfort.
Education is the answer. We’ve put 3 major info-graphics on our page that we want you to share and hope will help you explain TN. One is above on this page and the other 2 are linked below. The “What Should I Know BEFORE I see a Doctor list is also below and a great resource for family & friends as well as yourself.
Links to the information the summary was derived from are also often listed. We believe personal due diligence is important. If you are speaking from AANS, AFP, NINDS, AANS and medical white papers and you have the links –
You ARE Your Best Self Advocate!
There are several effective ways to alleviate the pain, including a variety of medications. Below are the most common referenced by the AANS.
The links of the medication name go to an overview where you can explore side effects.
- Carbamazepine, an anticonvulsant drug, is the most common medication that doctors use to treat trigeminal neuralgia.
- Baclofen is a muscle relaxant. Its effectiveness may increase when it is used with either carbamazepine or phenytoin.
- Phenytoin, an anticonvulsant medication, was the first medication used to treat trigeminal neuralgia.
- Oxcarbazepine, a newer medication, has been used more recently as the first line of treatment.
Talk to your Dr about what medication is right for you.
Advocating for Self - Basics
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