Fact or fiction?

I often struggle with the dilemma of sharing my personal journey versus sharing facts. Facts are good, they inform others in a way that promotes awareness and can be seen as educational. Feelings/personal journey are useful for trying to create an understanding of what it means to be living with TN but can be seen as complaining or negativity. I know I have "lost" friends who are "tired" of my social media posts or the way in which I have changed....but I will continue to share as I know that those people were never true friends to begin with. I do think though that I have neglected to personally share facts about living with TN, though I have posted on social media various links and posters to share the information, here are some of the facts I have discovered through research (actual scientific studies and not yahoo answer websites), personal experience and the sharing through support groups I've been lucky enough to find on line.

1. Trigeminal Neuralgia (TN) is a chronic, progressive condition in which the person experiences severe facial pain. The pain is most often triggered by light touch, vibration or a breeze on the face.
2. TN is generally classified in two distinct groups, TN 1 = sharp, electric shock pain that comes and goes. This pain can last seconds or minutes with some people experiencing up to 100 attacks per day. TN 2 = also known as Atypical Trigeminal Neuralgia is almost always a constant, deep, burning pain that "flares" in intensity but almost never goes away. 
3. The literature says that TN is generally a condition that affects those with an average age of 50 or older - The support groups tell a different story with the majority being in the 20-40 range. This year the international awareness day for TN is aimed at raising awareness of the children and teens with TN, that should say enough about how outdated the stats are.
4. Those with TN have to go through a long process to receive a diagnosis, often having teeth extracted and diagnosed with migraines or Temporal-Mandibular Joint pain before finding a diagnosis. There are very few of us who have this diagnosis who have not been ignored, called liars/drug seekers/hypochondriacs in the process. The health care system, regardless of country, is not equipped sufficiently to deal with conditions without clear, curative, protocols for treatment, that is a very sad, very true, fact.
5. Treatment usually begins with anti-seizure medication (Tegretol is the first line of treatment for most) through a trial and error approach for finding the dosage and type of medication that provides the most relief. If and when it is not enough, certain anti-depressant medications are added as they are often used in nerve pain conditions. Narcotics may or may not be added for pain relief but does not work on its' own for most of us. Surgical options are Micro-vascular decompression (where surgical Teflon padding or a similar material is placed between the nerve and any blood vessels causing the pain), Steriotatic Radiosurgery (concentrated, directed radiation to damage the nerve), Glycerol rhizotomy (a glycerol solution injected into the nerve ganglion to damage the nerve), Balloon compression (a procedure where compression of the ganglion of the nerve for destructive purposes is done).
6. None of the treatments can guarantee 100% pain relief or relief that is lasting. 
7. Trigeminal Neuralgia has no cure; it varies in intensity for each person; it is real; it is debilitating; it is not fully understood by MANY health care professionals; it requires research to enable those who are able to help, to know what to do.
8. People with TN have and do lose their jobs as a result of the pain and or side-effects caused my medication. We are almost ALL dealing with family, friends or colleagues who choose not to accept that the pain is real or that it is affecting every aspect of our lives and as a result lose those friendships or support in the workplace. It's a difficult disability to defend in applications for disability cover due to the lack of knowledge and understanding regarding the true impact on functioning.
9. We are determined to find a cure and raise awareness, this is evident in the efforts by many to work on various events for 7 October, the international awareness day for TN.

Finally.... 10. we miss our lives that we once had. Once the progression has reached a point where no remission is in sight, we miss our work, our family events, our exercise opportunities, our simple pleasures such as taking a walk without fear of a breeze knocking us to the ground.

For those interested in more information, visit The Facial Pain Association website. This website provides updated research and support links. For those who are looking for support on Facebook, a good place to start is End Trigeminal Neuralgia a page with detailed information and testimonials regarding treatment.

  There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

The cost of chronic pain diseases

I am writing in extreme pain right now and because of the pain I cannot rest/sleep. Laying down has become a trigger for my pain and as the pain on the right side has started increasing, so have the severity of the attacks and horribly, the bilateral simultaneous attacks. When I lay down to sleep/rest, it just gets worse. It is really a horrible cycle where fatigue increases pain and pain causes fatigue. But this is not what is on my mind right now. I have posted and spoken of the emotional and physical cost that we pay when we have this disease. However, there is another cost that is frighteningly real and results in stress that many can't understand. In order to diagnose someone with something that is not that common, the result is usually that we visit doctor after doctor, specialist after specialist and have many, many, many tests. These are all incredibly expensive. Even if you live in a country where there is health care available for those who cannot afford health insurance, the costs of travelling for all of these is enormous. Once we finally receive a diagnosis, the medication cycle begins. For Trigeminal Neuralgia, there is no known pharmaceutical treatment that fully controls or halts the process of the disease. Currently, the first line of treatment is Tegretol. This is an anti-convulsant medication that is used primarily for diseases such as epilepsy but also for pain that is neuropathic in origin. For those of us who are not able to tolerate this particular medication, like me, or if it is not successful in controlling the pain, a wide range of anti-convulsant medications and anti-depressants are the next step. Then they start adding narcotic medication.The next step, not an option for me right now, is surgery, which obviously has cost implications as well.

I am like many of those who suffer from TN, in that NONE of the options available to us are doing anything for the pain. It is horrific and incredibly frustrating at the same time to fork out thousands (and I am not exaggerating) of Rands (our South African currency) every month for something that doesn't work.

The loss of income from not being able to work is something that I, thankfully, have not yet been burdened with....but I know it's coming. I have already had to cut down on work hours. Problem is, that because I am no longer able to drive safely, I am dependent on colleagues or my husband to take me everywhere I need to go, including work. With petrol at its current price, the extra driving that everyone has to do adds to that financial burden.

A word of advice, if you are fortunate enough to be relatively healthy right now. Don't rely completely on your medical aid or health insurance. Save up a little every month. When you get to the point where all your medical aid funds are depleted in the first month of the year and you have to continue to find answers and help, any extra money is valuable. When you have to pay over R1000 for just one of the 5 + medications you are prescribed, just to function or at least to be able to get up and go to the bathroom, you learn how quickly we have become accustomed to having money for basic necessities.

I can't end of this post without thanking my family and friends again for their support. The support from those who love you, even if they can't fully understand what you are going through, is the ONLY way to deal with this.




There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Awareness

Today is the second international trigeminal neuralgia awareness day and I've been posting on Facebook to raise awareness. The response has been amazing from friends and acquaintances but I doubt that those who have not felt this pain can ever truly understand it. For the past few days I've had shocks without any trigger. I think I'd be able to handle it if it was still just on the left side, but no, I now have pain on both sides and last night had the torture of a bilateral attack. It hurts more to think that I can't do something as simple as go for a picnic with my family without becoming anxious that I'll have excruciating pain. It hurts inside to know that my family has to deal with this and that just a kiss on the cheek from my girls can feel like a knife cutting in to me.

And so, with the awareness day alerting those around me to this horrible disease, I come to the realisation that I'll be aware of it 24/7 for the rest of my life.... And that hurts, hurts deep in my soul. It's a hurt I can't fully describe without screaming and crying. But I can't, because a tear is the equivalent of an electric shock.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader