Welcome to the absolute worst pain that “YOU” can ever imagine. If “YOU” get unlucky enough to contract this problem, steel yourself for some very hard times. Initially it is not so bad, more of an annoyance than anything but as time progresses watch out. At first it felt like something was stuck in my teeth but floss, brush, scrub and I have good dental care I could not make it go away. I went to a GP (primary care doctor) who by chance had a sister with ms. She got a swab, made me close my eyes then poked me in the side of the face with the swab. I could not tell the sharp end from the soft end. So off for my first of many MRIs. Needless to say guess what I had? Then off to a Neurologist who ordered another MRI and confirmed ms. I have never been told what type so I assume Relapsing-Remitting.
At first it calmed down the years progressed. Wether it woke up or the damage really started to accumulate I am not sure. I found myself on a very long list of powerful medicines none of which stopped the pain, perhaps deadened it a little, but not stopped it.
I tried all sorts of drugs even cannabis (CBD Marijuana) I was very stoned, I knew it hurt but I was to stoned to care. The drugs did not stop it so I had to find something else. I disliked going to sleep because then it would wreak havoc on me I could not sleep anyway but on my back with my face off the pillow. I would put a cooling pack then mask across my face to cool and calm the nerves. I studied the Trigeminal Nerve, (Amazon Nerve chart). Found where it started, followed and saw where it was hurting. My Neuro was very happy that I could point to where the pain was, it made his job much easier. I did not expect him to solve anything. I was not sure where it started but I learned how I could make an effort to help myself.
I developed patterns,I mostly controlled my drug intake. I overdosed several times trying to stop the pain, she who must be obeyed new what I had taken and, I had a long list on my desk so paramedics could tell right away that I had taken and when. Keeping good records keep “YOU” alive and make life easier for others.
I used to lay in bed with my cool packs on my face and visualize lying on a beach with waves crashing on me. I took my pain made it something I could manage and dealt with it. Other times I visualized waves hitting a cliff face. this was not so good because “YOU” know cliff faces eventually crumble and become sand.
This went on night after night for years. I was not keen on having blocks put in my nerves and having my face cut. Eventually I could take no more and I went to a Cyber Knife company. With this procedure they use a series of lasers, to I believe shave the nerve and disrupt them. As I had issues all over my face they shaved the nerve before it split into three. A painless procedures. I merely had to be still so the lasers would be most accurate. Once again thank you Valium you are a life saver. Three procedures later and I am very good for 5 or so years.
I was very hesitant at first because my body has a memory of repairing nerves. As a child I had an accident and badly damaged the nerve in my elbow. My arm works and my fingers are fine, so I knew it could fix itself with a little help. This procedure only lasts around 5 years ad there is a limit on how many times it could be done. Eventually the pain will come back. I will see how I cope then. Until that time comes, I will ,eventually learn to meditate and learn all that I can about Trigeminal Neuralgia. I will make myself as strong physically and mentally as possible. A doctor once said they call this the suicide disease. I disagree. It is a challenge, a HUGE one, but one that “YOU” and I will overcome. If “YOU” have any good ideas please share them. Take the drugs for as long as “YOU” can. Do not expect to be fixed as “YOU” won’t be. Neither will I. Wait as long as “YOU” can for the surgery, “YOU” only have a few shots and “YOU” have many ears of life. Learn meditation techniques, calm yourself and make yourself as fit as “YOU” can. Even with CyberKnife surgery there are still some twinges but they are very bearable. There are some slight, so far, sideffects (sp). The left side of my mouth dribbles and I expect that to get worse. I use a bib and those who know me, know why. Add that to my protective underwear, gee ms is fun. With everything ms it can be coped with,t just requires effort and we are up far that. Aren’t we?
Royce (the ms writer)
RULE 1 YOU CAN NEVER DELIBERATELY CAUSE OURSELVES HARM
Potassium’s use and Trigeminal Neuralgia Events
