Wednesday, 11 June 2014

Trigeminal Neuralgia : More To It Than Pain

Trigeminal Neuralgia is a horrendous, painful condition. There can be no arguing about that. However, there is so much more to living with a condition like this than just the pain.

Dealing with any chronic illness can be soul destroying. Life can change so much. Relationships change, and sometimes sadly fall apart. People often can't continue to work, which can bring financial problems, which then bring on more worries.

So many aspects of life can become affected by chronic illness.

Emotionally, living with chronic pain can be overwhelming. People often say they feel sick and tired of feeling sick and tired. How true that saying is. Pain from a condition like Trigeminal Neuralgia can also be incredibly isolating. People often feel so very alone with their pain feeling that nobody understands, and often, that people who should care, don't. That in itself can bring about problems within relationships and lead to serious insecurities.

Then there's the fatigue. It's not just a tiredness which can be shaken off after a good night's rest. People living with pain can become tired, physically and mentally. It can be emotionally draining.

People can become frustrated and exasperated by what their illness does to them. They want to be able to lead the life they had before, but the pain just will not allow them to do so. They can feel despair and hopelessness when treatments don't work, and they can begin to lose hope that anything can help.

Panic, anxiety and fear are three emotions which nearly every chronic pain sufferer lives with. These emotions could stem from worrying about their job or how to pay bills. Could be worrying in case the pain will get in the way of a family celebration. Or it could simply be worrying about what the future holds. Sometimes, living in fear of pain can be as bad, and controlling, as the pain itself. Even people who have pain remissions probably worry every day in case their pain returns.

People can get impatient, snappy, and often  irritated about things which would never have mattered before. Possibly even over-sensitive. A joke, or a funny comment may not seem so funny to someone living with pain.

They can feel bitter and resentful at the changes in their lives. They may feel like a failure, feel worthless, feel they are a bad parent, spouse, son, daughter, sibling etc. They often feel that they just can't cope with this new situation they are in. Life can seem so unfair at times…….

Depression can easily take hold.
This drawing has been used with kind permission from the artist Michel EL Hachem
More of his art can be viewed on his Facebook Page or his Devian Art page


Probably everyone, whether living with pain or not, has experienced some of those emotions from time to time. But when living with chronic pain, these emotions can sometimes take over. It becomes an effort to do anything. It can become easier just to disappear into their own world, because the pain is too much. Too much to deal with and too much to explain.

All of those emotions are completely normal. But, we do have to try to change what we can so that those negative emotions are not allowed to drown us. We need to learn to ask for help and support. We need to be 100% truthful, especially with our doctors. They need to know how we are emotionally so they can try to treat us as a whole person, not just to try to treat the pain.

Nobody should ever be ashamed or embarrassed to admit how they are feeling. Admitting it is very often the way to move forward. There is help out there and there are people who understand. Everyone needs a good support network. But sadly, not everyone has that. Sometimes online support groups are a person's only real support. These are often run by people in the very same situation, so they do understand, and often, together, they can find a way to help one another.

If you are feeling like this, please reach out for support and help. Don't let depression eat away. The further you go down, the harder it can be to climb back up, so it is important to reach out for help sooner, rather than later.

Living with chronic pain can mean a lot of learning. 'Learn to accept' are three very easy words to say, but accepting this pain is far from easy. However, accepting doesn't mean that we have to like the change, but by accepting it, it can be a bit easier to find ways of coping with it. Learning to realise what we are capable of, so we don't set goals that are too high. Learning to realise when we need to rest. Learning to relax. Learning to make the best choices. Learning to make priorities. Learning what is right for ourselves. And possibly most importantly, learning to ask for help when we need it.

11 comments:

  1. Fighting to bring awareness of trigeminal neuralgia has been so beneficial to me. I have been fighting trigeminal neuralgia, since January 2007. I've had gamma knife, rhizotomy, and MVD. The nerve was injured worse by the rhizotomy, leading to anethesia dolorosa. The neurosurgeon didn't mention this incurable condition as a possiblity from a rhizotomy, probably did't know. Each day, I try to explain the condition to someone. We have a lot of education to do. Join us if possible for The Race To Save Race on July 11th in Dover, Ohio. Like Race To Save Face on facebook for more information.

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    1. Weabsolutely need more awareness of this terrible disease. When I tell people what I'm suffering from, their eyes glaze over. No one, including me, ever heard of TN. I sure know what it is now. I look at people on TV and am envious that they are able to talk. When I get a flare up, I can't even talk and have to put pressure on my face just to be able to function. I just had Gamma Knife. Did your surgery not work??? Janice

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  2. Great blog and fantastic picture. One look at this picture says it all. I also think a great image is The Scream by Edvard Munch of pain we can suffer. When people have difficulty understanding the level of pain we can be in I always refer them to that image.


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  3. please help to bring awareness to this horrific disease that can destroy a person in no time at all !!! there needs to be more awareness to maybe find a cure someday!! My goddaughter is fighting this & it's literally killing her. Please repost !!!

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  4. kimberly marin12 June 2014 at 13:35

    I have been suffering from this for almost 7 years now ...it is a living hell.

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  5. I have been experiencing this horrific pain for the past twelve months, presumably as a result of having three aneurysms in my brain treated. Apparently it is very easy for the trigeminal nerve to be damaged during surgery. My life has been saved by this surgery but the result has been difficult to live with. I am now on a trial of epilepsy medication to control the pain, which is working to a great extent. My theory is that to get full relief, you need to pursue all avenues and to ask as many questions as possible before you have any surgical intervention.

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  6. Dear Fellow TN Sufferers: I had Gamma Knife Surgery on June 13, 2014. It was quite an experience. I was at Smilow Cancer Hospital in New Haven, CT. Everyone was amazing, and I can't say enough about the doctors and staff. I will tell you that the worse part was probably the injections of numbing agents to 4 sites in my head (2 front, 2 back) in order to have the head frame put on with screws. Trust me though, it was bearable, much more bearable than TN pain. I then received an MRI so that the team could plan the direction of the radiation. I was probably in the machine for one hour, and the staff had put jazz on for me. A nice touch. When I was done, the screws were removed with a Black & Decker (really!), and the head frame was removed. My head felt like a bowling ball from all the numbing agents, but I was assured that the numbness would dissapate over time. The top of my head is still number after almost a week of waiting. The doctor's office said that I must have gotten a good dose in one of my nerves. I hope this goes away soon. I'm getting a little nervous about it. My head was wrapped in gauze and I was sent on my way. I've been back at work for almost a week, and I feel great (except for the numbness!). I've had a couple of shocks, but nothing that will make me tear my hair out (and if I did, I couldn't feel it anyway!). No side effects other than the numbness and soreness around the pin sites. I won't know the bottom line of this surgery for 5 weeks when I will return to the doctor and have a follow-up MRI. I'll report back the results at that time. I consider myself very fortunate to have had this surgery, and feel for so many others who cannot. If this lasts me 10-15 years, I will be thrilled! Please take care, everyone. With warm regards, Janice

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  7. I really hope this campaign is a success. I've seen so many GPs who don't know what it is or what to prescribe, one of which was newly qualified. I wonder if this even gets a mention in med school. Until a cure is found I shall continue the search for something better than the medication I'm currently having to put up with!

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  8. 1975, 1984, 1987 to date. Thank goodness for the TN sites. Until several months ago there's a friend who suffered for 2 1/2 years and me. The relief of discovering others are hounded by this disease.

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  9. What do you do when you are surgically untreatable? The medicines keep the pain to an almost managable level but, two kids and being a single mother is getting more and more difficult to accomplish. If my parents were not around we would be in really bad shape. What do you do?

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  10. Michael Cox, Ph.D,c,2 March 2017 at 01:56

    I have been suffering with this for 14 years and feel love in my heart for each of you. I am a research and higher education Psychologist and am looking for some sort of relief for us. Hang in there, my friends. We will find a cure...I promise!

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Thank you for your comments.