Monday, July 23, 2012

Symptom or Side Effect?

I’ve been wanting to write this post for a while. It is something which I am sure most people like myself will recognize. We take so many strong drugs that it becomes more and more difficult to distinguish between the two - symptom or side effect.

We develop symptoms and nobody knows if it is something wrong with us, or if they are simply side effects of the drugs.

I think we all get used to side effects like a bit of weight gain, maybe some nausea, constipation, etc.....but if the drugs are helping the pain, it’s maybe worth putting up with those.

But there are also other side effects like constant tiredness, ringing in the ears, heart palpitations, that feeling of fuzziness in the brain, losing balance, the bad memory........the list could go on and on. Again, if the pain is being helped, sometimes we would rather put up with those too.

Those are some of my side effects......most people on these drugs suffer them too.

The strange thing for me is that if I am going through a better spell, I don’t suffer from the side effects as much as I do when my face is really bad. But when my face is playing up, so do the side effects. Strange?? I think it is.

This past week, I wasn’t having a good week with my face, and as usual, all those side effects seemed to flare up too. But my knees were also painful, along with my legs, ankles and even feet. Some mornings I have got up out of bed and felt that my feet couldn’t take my weight. (Maybe they don’t like the extra weight I have put on!)

Throughout my life, I have suffered from painful knees and other joint pains every so often. No cause found for it, but very painful. They eventually settle down again. But I think on top of everything else, it got me down a bit last week. Joint pains could possibly be yet another side-effect? The tablets get the blame for everything. But who knows....possibly I am just falling to pieces.

Actually, falling to pieces wouldn’t really surprise me as I have fallen so often recently.  I just seem to fall for no reason. Trip over my own feet! I think Ian is thinking about wrapping me in bubble-wrap before I get out of bed in the morning. I try to laugh it off and blame the tablets making me unsteady.

But it gets more and more difficult to laugh it off some days.

Wednesday, July 11, 2012

TN....The Suicide Disease

Something I have always hated about Trigeminal Neuralgia (other than the pain) is the nickname it has acquired over the years of “The Suicide Disease”.

I always think that it is such a horrible thing for a patient to read when they are newly diagnosed and trying to find more information. It also must be awful for relatives or friends to read. It gives a feeling of hopelessness, a feeling of living the rest of their lives in fear.

It sounds so over-dramatic. But is it?

People do become dragged down by the pain, by the meds and by the life they have to lead due to Trigeminal Neuralgia.

The pain from Trigeminal Neuralgia is supposedly the “worst pain known to mankind”. Many years ago, there were no treatments available, therefore, I am sure that suicide did seem like the only option to sufferers. But nowadays, we do have medications and other treatments, although there is still no perfect solution. The meds are very much trial and error,  and very often, do not give 100% pain relief. And of course, the meds bring a whole bunch of side effects, some of which can be very serious. There are surgical options, but unfortunately, they don’t work for everybody either.

I see it day in and day out on forums - people say that they feel they can’t carry on living like this. They feel so alone with their problem. Some people have no support, no family or friends who are prepared to even try to understand. Many people cannot cope with how the pain alters their lifestyle. Many people become so depressed as they feel that they will never find a way out of this pain filled life. 

I really wish the nickname didn't exist. I think it does nothing but bring fear and place a bigger burden on the shoulders of sufferers and their families.

Still so few people know about trigeminal neuralgia and I think that’s where the problem lies. Even most doctors struggle to understand the condition. Patients with TN are desperate for a time when people do not screw up their face wondering why on earth we complain so much about “a bit of toothache”, why we don’t just go to the dentist, or suggest we take some paracetamol for the headache we “always seem to have”, or even suggest we just get out for some fresh air.

If more people know about the disease, there will be more understanding. And hopefully more understanding means more funding into research. More research hopefully means a cure for this horrible condition.

The TNA,  the Trigeminal Neuralgia Association in the UK, tries to ensure patients get the correct information about meds and treatment, and tries to offer some kind of hope. It tries to raise awareness and it has a support network for patients. There are many forums and websites online doing similar. Through my blog, I am trying to raise awareness of the condition. Other people I know, also write blogs about TN. Some of them are patients, some are the carers. I have listed a few below :

  • Gilly's blog - Gilly's husband developed TN and went through surgery to try to help. I think this is such an important blog, as it shows the side of a loved one, looking on, trying to help, sometimes feeling helpless.
  • Lena's blog - Lena, not only has TN, but other painful conditions which, like TN, have little understanding. 
  • Carol's blog - a lady who has endured TN for over thirty years of suffering, including surgery which has gone wrong. 

In our own small way, we are trying to raise awareness and make people understand, not just about trigeminal neuralgia, but about what it is like to live with the condition.

Maybe one day, there will be more understanding about trigeminal neuralgia.

Maybe one day there will be something better out there which can help this pain.

As sufferers, we need to live in hope of there being something better.

Since you are reading this, then I know that are either a sufferer, or you do already try to understand what it is like to have trigeminal neuralgia. Perhaps you could share what you know with someone who doesn’t, or point them in the direction of the TNA, or even share the links to our blogs. Click the logos below the post to share it, then you will be helping to raise awareness too. Thank you.....

Saturday, July 07, 2012


The 8th of July would have been my Papa's birthday. Had he still been alive, he would have reached the ripe old age of 101, and I could guarantee that he would still have had us all chuckling with laughter.

My Papa, was a fantastic man. A gentleman, but boy, could he make us all laugh with his antics. He used to do things like handstands and yodel and make funny noises just because he could, and of course, because it made all of his grandchildren laugh. He even used to go to the swimming baths and dive of the top dale and he was so proud of himself for doing so. When he was in his eighties, his GP saw him doing that and asked him to stop!

I could tell many a story about my Papa......all of his grandchildren could. When I was a little girl,  my Gran and Papa used to come to our house for dinner every Wednesday night. When my Papa was still working, I was allowed to walk down to meet him coming off the bus. On our way home, my Papa used to stop and buy me a bar of Fry's chocolate cream, a huge treat for me. I ate it on the way home, and he kept telling me "not to tell my Mammy!", which of course I didn't. Of course, then I could never finish my dinner, but my Mum was never the wiser about that bar of chocolate.

He played Santa Claus at Sunday school Christmas parties, and I was there, sitting on his knee as he asked me what I wanted for Christmas and I didn't even know it was him.  I think he had that "Ho-ho-ho" down to perfection. Just like the yodelling. And just like the Tarzan call. Yes, he used to beat his chest and pretend to be Tarzan. And he didn't mind where he was when he did it.......I'm sure he did it while he was jumping of the top dale at the swimming baths. I know he did it once while he was in hospital and had nurses running from all directions.

But there are three things I am sure we all associate with my Papa - Aromatics, Guinness and......the bookies. He always had a bag of aromatics in his pocket and dished them out to us all. Only one and we had to see how long we could make it last. For those who don't know, aromatics were little brown or pink hard cinnamon flavoured sweets. I always lost that competition. I always crunched. My Papa was not a drinker, but he did enjoy his Guinness and when I was wee, I learned how to pour the perfect pint of Guinness. Then........I was allowed some of that white frothy stuff from the top. And so, we come to the bookies. My Papa's regular haunt, which none of us were meant to know about. All he did was bet about five pence (yes, pence!) on a horse so there was absolutely no harm in it, but he liked to make excuses for where he'd been. However, his memory wasn't that great, so he often forgot something. Could have been the milk he was supposed to get from the shop. Or it could have been our dog. Yes, on more than one occasion, my Papa tied our dog up outside the bookies while he went in to put his wee fly bet on the horses, then forgot to untie him when he was going home. Poor Patch.....but he did love my Papa for all of those walks.

My Gran and Papa used to travel to California to visit my Aunt, Uncle and my two cousins. They used to love going over there, then after my Gran passed away my Papa went almost every winter for several weeks. He became known to all the locals, and I am quite sure he became known to many quite simply as 'Papa'.  Everyone just loved him.....and I can understand why.

When Ian and I got our first computer years ago, we brought my Papa up to our house so we could do an MSN video call (old fashioned Skype) with the family in California. He was no longer able to fly over there, so this was a big thing for him to be able to chat to them and see them. Ian and I had a lump in our throats at the end, when my Papa actually thanked the computer screen for letting him see them. I think it made us realise how special that had been for him.

Like I said at the start, he was a man who could make anyone laugh, but he was gentleman too. We all loved him so much, and to this day, we all still miss him.

On his ninetieth birthday, I wrote him a poem.


A lot of memories come back to me
Of what you were like when I was wee
With your funny sayings and conundrums galore
You could certainly never be called a bore

With a pint of Guinness, you were a happy man
You’d even let me pour it from the can
You’d let me sup the froth from the top
But when I got to the black stuff, I had to stop

You were always trying to get us to do acrobatics
And holding competitions for sucking aromatics
You taught us how to yodel....yodel-eh-hee-hee
But it never did sound the same coming from me

You made us all laugh with your Tarzan call
But when you did it in hospital, they thought you’d had a fall
They thought you’d maybe had a cardiac arrest
Until they found you beating your chest

Remember when you used to take wee Patch for a walk
You’d say you were just going around the block
Then the heavens opened and it started to pour
And two hours later you’d walk through our door

But you were bone dry, not soaked to the skin
Then you’d explain, giving me a grin
“I stayed out of the rain, I stood under a tree”
That was the explanation you’d give to me

Stood under a tree!!
My foot! Hee-hee
I know how you never got wet
You were in the bookies having a wee fly bet!

I’ve so many memories - too many to tell
It just goes to show you’ve done your job well
You’ve given us love and laughter too
And that’s why everyone would like a Papa like you!