Trigeminal Neuralgia is such a cruel condition. It needs more awareness and we believe that together, with your help, we can achieve that.
Please help by sharing our blog, and following and sharing posts from our Facebook page. Every little helps. If one more person understands about TN, then you have made a difference.
Every now and then in life, we meet people who amaze us. Sometimes we are in awe of their strength, courage and sheer determination. One person we are lucky enough to know within the world of facial pain, is a very inspirational young lady called Karla Gudgeon, or Athena, to her friends. In her own words, here is Athena's story…..
My name is Karla Gudgeon, though my friends call me Athena. I am 22 and have had atypical and typical trigeminal neuralgia for nearly five years now. I also have recently been diagnosed with muscular pain on the left hand side (due to eating and using my jaw lopsided for so long) and allodynia, or hypersensitivity. The latter means that even a tear or a brush of wind on the affected area can trigger immense pain.
I am a student at Lancaster University in England - this means the world to me as, for the first two years after I gained the TN, I couldn't do much and had to defer my university place. Many of my hobbies were very active - archery, sword fighting and dancing to name a few, which obviously became more painful and less feasible to do when the pain level was high.
After six months of moping around I discovered something I could do - card making. This hobby really took my mind off the pain and allowed me to do something worthwhile.
I work for a charity called the World Owl Trust in Cumbria, England as a volunteer and I started selling the cards to raise money for them. This quickly escalated into a bit of a cottage industry making not just cards, but notelets, bookmarks, magnets, coasters, pens and lots of other merchandise.
Over time this has raised thousands of pounds for the charity and made me feel that I wasn't letting trigeminal neuralgia ruin my life - in other words I could still do something worthwhile.
I used to do regular craft fairs where I had a stall selling all my merchandise and raising awareness. The vintage themed fairs were especially fun!
After two years I managed to get back to university and have thoroughly enjoyed it, although I must admit the pain has made things extremely difficult. My friends have been wonderful though, recording lectures I could not attend and helping me get around campus in my wheelchair when needed (I also have the medical condition Ehlers Danlos Type 3, or hypermobility syndrome.)They have been remarkably adaptable at coping when the pain level is so high it sends me unconscious, a distinctly irritating and debilitating survival mechanism which has caused a fair few separate injuries not to mention the loss of my driving license.
My TN is unusual in that it seemed to be caused by trauma, not the usual blood vessel being too near the nerve. When I was 18 I had an operation called a lower jaw osteotomy, which aimed to bring my lower jaw forward so my teeth could meet up and I could bite properly (I really struggled to eat before.) I was assured that no-one had ever regretted the operation and there was a one in a million chance of other side effects besides numbness to the lips. Unfortunately, I turned out to be that one in a million - well someone has to be I guess. Either way, possibly due to the Ehlers Danlos, the left hand side of my jaw failed to heal properly and to this day bleeds and bruises sporadically which, as you can guess, annoys the neuralgia no end. My neuralgia centres quite low down on my face, in the centre of my cheek and radiates out in a sort of star shaped pattern when the lightning bolt pains come. I'm sure many of you know exactly what I mean! The atypical pain is constant, 24/7 and usually takes the form of a very sharp ache.
When I discovered the charity The Facial Pain Research Foundation I decided to combine my hobby and my problems. I will be making cards and other merchandise for the Foundation to sell and raise funds which will hopefully help us conquer this terrible condition.
Another TN sufferer, Jordan Riggs, has kindly allowed me to use some of her beautiful photographs for new designs and I have managed to receive permission from an excellent storm photographer to make lightning themed merchandise (very appropriate I'm sure you will agree!) I hope to sell some of these products online by the end of the summer via ebay and/or etsy - look out for them - all profits will go to the FPRF.
On another positive note, against all odds, I have now finished my degree and have attained a first (despite my appalling attendance) which was a great shock! It hasn't sunk in yet. I am now going to have a year off to recover as the degree has left me pretty exhausted. I also may have to have some sort of operation to control the TN pain. I am going to see a doctor in London and I am hoping she may be able to give me some advice! I am a bit more hopeful than I have been anyway.I am also currently undergoing physio to help the muscular aspect and the allodynia. It's painful in the short term but will hopefully help in the long run. Then I will see what I am left with! I had a wonderful graduation last Friday.
I am also doing a sponsored abseil (a slightly strange graduation present from my father) for the Facial Pain Research Foundation to try and raise more money to find a cure. We have reached over £200 already! I hope the pain is low enough to do the abseil some time in August. It would have been Monday 21st July but I sort of sprained by wrist last week so it has been delayed a bit! If you wish to sponsor me you can contact the FPRF directly at their website or donate direct to the FPRF with paypal via ebay.com here. You can also use my gofundme page gofundme page but be aware there are some fees involved (to the charity not you) on that, whereas there aren't on the other two options.
Together lets try and combat this terrible disease!!
Good luck to all of you and best wishes always.
Hope you can enjoy a less painful year out of your studies.
Thank you so much for your fundraising efforts and for letting us share your story.