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.
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