Taking it as it comes

It's new years eve and as always, I have been reading messages, statuses and tweets all day about how awesome 2016 is going to be. I am not a pessimist,  but I am definitely  a realist. This means that if I am to be honest with myself, I will say it's been quite a hard year. In fact, if I am really honest, it's been a difficult year every year for a while now. Yes, there have been good times, successes and happy moments, but in reality, they have been in spite of all the other crap. Some may say I am too negative. That just by thinking this way, I am being ungrateful. I beg to differ, and since it is my life, I have a right to.

So what does this have to do with TN? Well, everything, actually.  If I wasn't a realist, I don't think I could have survived the journey that TN has taken me on thus far. I don't think I would have been able to avoid the depression that often comes with chronic pain, go to work when my pain levels were bearable or be the wife and mother that I am. If I didn't take things as they come, use my low pain moments to accomplish  things I couldn't the rest of the time, I would be in bed permanently,  in a mental health clinic, or dead. That, my friends, is the truth. I had to be realistic this year about what I could and couldn't  do.... even if it was something  as simple as opening the door on a breezy day. It is truly, in my opinion, the only way to live with TN.

So for 2016, I am not going to post a status that says it is MY year, I won't be telling the world that I will conquer it.... I will take each day as it comes. TN has taught  me that, if nothing else, and for that, I am grateful.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Post-surgical silence syndrome

Yes, I made that syndrome in the title up.....but if it was a real one, I think I could have it. This is something that I have been mulling over lately and, although I would have posted much earlier about it in the past to actually process these thoughts, have become quite convinced  that it is real.
In my previous post, Supporters Unite, I provided a reason, albeit brief, as to my blog-silence, as being a result of the guilt I feel at constantly  complaining. I was feeling guilty for really bringing the lives of those around me to a virtual halt due to my health needs. While I still feel that, some days more than others, I seem to have done what quite a few of my fellow TN warriors online seem to do after surgery. I have developed  Post-surgical silence syndrome (PSSS).
From what I can deduce, looking at posts by others and talking with them in support groups, talking with my surgeon, and quite often talking to myself, MVD surgery (endoscopic skull Base in my case) has many unexpected and seemingly benign results. The first one I experienced is fatigue like you would not believe possible, a tiredness that actually makes you feel like you're physically  walking at the bottom of a pool ALL the time, like everything is in slow motion and no matter how hard you try, you just can't come up for air. After 3 months, I still feel that fatigue all the time, and it's driving me crazy. My surgeon assured  me that part of the reason for this was the psychological toll that major surgery takes on you, especially when you have been warned of the fatal risks attached to that surgery.  Then, the skin changes, this I am basing on my own experience as well as that of my TN friends. I have developed acne for the first time in my life since having surgery, while not particularly traumatic, it is quite irritating to suddenly have a complexion that I didn't even have as a teenager. Finally, the emotional roller coaster, linked to the fatigue, I guess, seems to be the worst. I can go from being completely apathetic to almost biblical rage in a matter of minutes...that is by far the most difficult adjustment I have had to make; controlling my actions so that those emotions don't show outwardly.

Now, the PSSS, the actual reason for my post. I have become somewhat silent regarding my TN in comparison to the pre-op advocacy warrior that I was. Whether it is due to the fatigue, difficulty  with emotional control, guilt, pure  and unadulterated despair at the fact that a lot of the TN attacks have returned so soon after surgery....I don't know. What  I do know, and have seen from other very vocal advocates for awareness online, is that after surgery it seems that there are a lot more things going on in our lives than we care to share or know how to deal with, that the crushing despair at not having a miraculous healing  ( even though we went in to theatre knowing it was unlikely), the need to clarify that the surgery was a pain management  option  and not a cure 100000000 times.......
I don't know? What I do know is that I am still passionate about TN awareness, I still enjoy discussing every day things with friends and family, I am still passionate about my work; BUT somehow, my inner introvert was unlocked during surgery and I just feel like I am able to whisper but no longer shout out loud, figuratively speaking. So, like TN, I guess I have another hard-to-explain issue to deal with now, I have Post-surgical Silence Syndrome. Any expert advice is welcome..... then again, perhaps the elephant has shifted position and now plants itself firmly on my mouth?

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Supporters UNITE!!!

I have been VERY quiet on this blog for the past month and I wish I could say it is because I have been so busy enjoying every second pain-free since my surgery in August. Unfortunately, most of that time has been spent trying to explain to those I have come into contact with, especially at work, that the surgery was a pain management intervention and was not, and never could be, a cure.

I have also become almost completely riddled with guilt this past month. Not the guilt that I spoke of a while back "May the guilt be with you" in another post, that guilt that prevents you from giving in to the temptation to live up to the "suicide disease" nickname. No, this guilt is about me feeling that I'm always complaining, that I've completely destroyed so many good relationships and family activities because others have to consider my ability to function through the pain. This guilt is one where I almost feel like I would rather just keep my head down, be quiet and try not to make everyone miserable because I am in pain.

It is something I am really struggling with, especially after surgery. I have relief in the 2nd branch of the nerve, and it is wonderful. I am grateful for it. BUT. I still have the same pain I had before, only now it almost feels more amplified in the the 3rd branch of the nerve and in the ear. So yes, my silence has been a difficult one, and I suspect, one I will struggle to push past for a while.

This has also brought me to the title for todays' post. It is October 5, 2015, the 3rd international TN Awareness day and my Facebook timeline is almost completely teal!!! Granted, it is because most of my timeline is full of posts from fellow TN warriors, from TN support groups, etc. But there is also the odd post and shared post from personal friends and family, and this warms my heart. The awareness day this year is dedicated to the children who have to live with TN, contrary to what most of the literature says is the case. Children with TN, who are not believed, because they do not fit the criteria for TN patients with regard to age. The support from all the online posts and buildings lighting up teal in the US, Australia, UK and Canada are awesome, but I want to make special mention of those who support me.

I want to thank my family, immediate and extended, for believing me and supporting me with calls, hugs and lots and lots of understanding. I want to thank the friends, the true friends, who have not decided I am too high maintenance and still invite me over or come visit or call to chat. I want to thank colleagues and management who have taken the time to try to understand more about TN and who have provided me with the opportunity to work from home on a more regular basis so that I can function at a better level than when I was expected to work in the office every day. I want to thank my TN family, the ones who I can literally call on day or night when it all gets too much. I cannot and would not want to go on without all this support.

Sadly, there are many of the TN warriors out there who have NO support. Who have lost their spouse/partner because they can't handle the all-encompassing way this pain affects us; who have had their children pull away from them; who spend all day alone at home without a single person wondering how they are; who are physically, financially and emotionally abused by so-called loved ones.

My awareness day post is a plea. A plea for those who know someone with TN to support them. My awareness day post is a heartfelt thank you. A thank you that cannot be fully expressed for those who have shown support for me and many others.

My goal is to work towards an awareness day next year where more public awareness in South Africa is a reality, but for now, I will continue to #TurnTheWorldTeal, one post at a time.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Are you better yet?

As children, we went on many road trips with our parents and I am sure that, just as my kids do now, my sisters and I often asked the dreaded four-word question: "Are we there yet?" *insert nagging voice here*...... As much as my parents, and now us as parents, dreaded that question, it was and is a natural question to ask. I am going from point A to point B, so naturally, I want to know how long will it be to get to point B, even if this means that I literally left point A, 2 minutes ago.

In the same way, human nature and society tells us that if someone is ill, there are two outcomes. Point B, in the case of illness, is either return to full health or death. It may sound callous, but that is just what we have always known and have come to expect.  Chronic illness messes with that concept though. I can definitely say that TN has completely screwed up that premise for me. I did understand the concept of chronic illness prior to this, however, I don't think I ever truly grasped the complete frustration of the person living with that illness and knowing that no matter how many times we ask "Are you better yet?"....the nature of their illness is that they are not going to get better. So to use the roadtrip analogy here....I think I've begun to experience the dreaded four word question now as, "Are you better yet" with the same frustration and, at times, annoyance.

I've stated the following in an abridged version on Facebook this week and have had a lot of time to contemplate how to write this post since I've had my surgery. I know I'm running the risk of offending someone, or maybe a few people with my opinion in this post. However, I will continue to remain true to myself and style of blogging about TN and present you with my reality, the truth with which I live daily.

It's now been 3 weeks since I had brain surgery. A few facts about it, in simple terms:

1. It was endoscopic transphenoidal surgery i.e. they went in through my nose to the skull base, drilled through the skull and then used GPS navigation, cameras and other tools to perform the surgery.
2. Surgery lasted 6 hours and the doctors removed quite a large portion of the tumor growing in a very delicate part of my skull. 
3. It is still benign, i.e. has not spread to other tissue other than the skull bones themselves, but is growing.
4. Scans on the morning of the surgery proved that the tumor was growing much faster than they thought, and putting pressure on the brain itself, regardless of previous treatment and that it was a good thing they went in when they did. 
5. They did not remove everything, there is still a portion of the tumor growing on the side of my head, the part they removed was in the middle.
6. The portion they removed was attached to major arteries and compressing at least 4 of the cranial nerves. With each pulse of the artery, pressure was being placed on the nerves, hence the random electrical shocks I was getting in my face and eye.
7. It will take up to 6 weeks for all the swelling to subside and full healing to occur after surgery, that is, healing of the tissue they cut through or on.
8. I will be needing more treatment to try and manage pain and hopefully the rest of the tumor (medication and possibly more surgery).

Now, getting to the point of my post.
In the past, I was jealous, insanely jealous, of those who were able to have surgery for TN. Because of this, I couldn't wait to have mine done, if only to be able to know that I had tried everything possible to manage my pain. This is not to say that brain surgery is to be taken lightly. It is one of the treatment options available to some TN patients, and has a good chance in many of them to provide up to 80% relief from pain for as long as 10 years. Note, it is not a cure. I was told by the doctors that I had a 50% chance of having relief from pain if surgery was to be successful, especially considering the location and size of the tumor. Not having it provide complete relief is not proof that the condition doesn't exist, neither is it proof that its' all "in our heads - figuratively speaking", as many TN warriors have had to hear post-surgery.

My emotional and psychological state right now, three weeks post op, is one of anger and frustration at the fatigue and pain I have been experiencing. Neither of which is helped by what seems to be the daily "are you better yet" questions I hear. The only way I can begin to answer that is to say that I still have pain. I have moments, like I did before, where it feels as if an elephant is head-butting me in the face, where I can literally feel a knife stabbing me in the jaw, where a fire-poker is stuck in my ear and being jabbed in and out over, and over, and over again.
I don't have electricity randomly striking me in the face, and for this I am grateful. I am able to tolerate, and therefore enjoy, kisses from my girls and husband on my cheek. That is about it.

I am struggling to understand how my honest response to people has been met with statements like "don't worry, I'm sure it is going to all go away soon", "oh, but I'm sure it isn't as bad anymore", "we continue to pray because we know it is going to go away" or " I"m sure once you recover fully from surgery you will be cured."  Perhaps it's that "Are we there yet" mentality. Don't get me wrong. I appreciate the support I get and the prayers offered up on my behalf. I love so many of the people who are truly caring and concerned for me. I do not doubt for one minute that most, if not all, of the comments are made with the utmost sincere belief that they are true to the person offering them. I am however feeling as if I am expected to say that I'm better. I feel that there is an expectation of the surgery having been a cure and this expectation is confirmed especially when I see the expression of confusion or disbelief on someones' face as I tell them that I still have pain.

Trigeminal Neuralgia, when caused by a compression on the nerve, leads to damage of the protective sheath around the trigeminal nerve. This is what causes the pain (think of an electrical cord with constant rubbing or pressure on the outer covering until the wires are exposed). Removing the compression is not guaranteed to remove the pain. That nerve has suffered years of pressure and as a result, damage. Medication may minimise pain by decreasing the random firing of the nerve (already proven not to work for me). Again though, all treatments, including brain surgery, are there to manage the symptoms of pain in TN patients, but it can't cure the condition. This is what incurable means. I am not being negative, I am not being ungrateful, I am not suffering from a lack of faith.....I am being a realist. Incurable, that is currently the label attached to TN as an illness. This means that I have had to change my understanding of what the outcome of surgery or treatment may be for me. It means I have to re-conceptualise what Point B is.

Point B may be coming to terms with adaptations in my life and then living in the moment. Point B is likely to change as the years go on. Perhaps I will try to take the trip as it comes. Move from Point A and just keep on moving, forwards, backwards, sideways....who knows.  At the end of it all, my TN Point B is not death or full recovery. I know that. I just wish, so desperately wish, that the chorus from the back seat was not constantly "Are you better yet?" I hope, beyond reason, that those not driving on my journey will try to appreciate that it is my journey and right now, there is no destination. You're welcome to join me for that journey, I love company, please just remember, no four word questions allowed.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

FAR from normal

I've been avoiding this particular post only because I am trying to figure out a way to write in as positive a manner as possible, while staying true to my realistic approach to life.

I am FAR from normal. Yes, I know that normal is relative and honestly, normal can be boring for many people. I'm FAR from normal because right now I am filled with Fear, Anticipation and dreading the Risk of what I'm about to do to achieve a sense of normality. Normal in the sense that I want to be able to open my front door when someone knocks without first having to cover myself up like a mummy and literally hide behind the door when I open it. Normal in the sense that I would like to work Monday to Friday without a second thought and definitely without the pain and fatigue that results from doing so. Normal in the sense that intimacy with your spouse isn't a complex series of avoidance of touching while all you want to do is hold each other. Normal, normal, normal.......

In a few days time I will be going under anaesthetic for a surgical procedure called Transphenoidal Endoscopic Skull Base Surgery.  

In this procedure, the skull base surgeon (an ENT who has specialised in skull base surgery) and the neurosurgeon will go into my nasal pasages and cut through to the base of my skull. Using a GPS navigation system, they will carefully work on removing the tumor piece by piece over a minimum of 6-8 hours which has slowly been taking over my skull base and is thought to be the reason for my TN and other cranial nerve pain. The tumor is full of blood vessels and located adjacent to my brainstem and carotid artery, not to mention the other nerves. So, according to the doctor, they will literally have to move a maximum of a millimeter at a time and remove a piece of tissue, stop the bleeding, and then move on and repeat.  This particular surgical technique boasts impressive recovery times and minimal risks when used for removal of pituitary tumors. Obviously, mine is not a pituitary tumor, or in fact, one which any of these surgeons have removed before. I guess there always has to be a first time for everything.

I have a 50% (optimistically) chance that it will work in terms of helping with my pain. There is also the risk of complications. Honestly though, I am accepting this risk with the support of my family because there really is no other option. 

This got me thinking, for all the TN warriors out there who consent to surgery, we are all plagued by the fear, anticipate the potential relief and acknowledge the risks involved. Brain surgery is not something to laugh at, as with any surgery. However, when you are in this much pain, you honestly would pay a guy on the street corner to cut off your face with a chainsaw in the midst of a severe attack. I for one am grateful that technology has advanced to allow for this endoscopic surgical technique, as, in the past, skull base surgery would require literally removing a part of my face and lifting the brain up in order to get to where this particular bony tumor now sits.

Funny how TN patients can talk about brain surgery as if it is a trip to the dentist and vice versa. Strange how many around us do not realise the magnitude of the actual decision to do this and the utter devastation we feel when we are denied surgery by so many doctors. 

I don't know if it will work. I don't know if this is the last time I'll go under the knife, though I know that if it doesn't result in any relief, I will most probably be willing to go for any other procedure available. And that, my dear friends, is how desperate this disease can make you. How absolutely ridiculous it can sound to us to hear someone say that we should learn to make the best of it for the rest of our lives and NOT go for risky surgery. 

An so, I sign off today while reminding every single one of my fellow warriors.....Do Not take no for an answer. Keep searching for a doctor or team of professionals who realise the importance of achieving a sense of normality, a team who will walk down the path with you to the point where you are happy to be able to say you have done everything possible to deal with the hell TN has put you through. It may be surgery, it may not be. Whatever the case, keep fighting until the Elephant on your face becomes an addendum to your story and not the introduction and conclusion.





There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Struggling to remain visible

I studied to be a physiotherapist and after working in clinical practice for a short while, I began lecturing at a local University. As a physiotherapist, the primary function of my job and those of my students and future colleagues, was to ensure that we enable patients to reach their highest level of function in their daily lives. To do this, it was imperative for me to understand what physiological and anatomical issues were going on in their lives that could result in having an influence on their ability to perform daily activities of living. So my job was to understand ability and disability on a very literal level in order to work with patients in achieving the most they could out of their lives.

Generally, we all see a disabled person as someone who physically shows signs of not being "normal" or not looking like what the world considers an able bodied individual. Someone who is in a wheelchair, has visible signs of downs syndrome...that is commonly accepted as a disabled person; someone who needs special accommodation to be a part of society, right? Are you sure?

The world health organisation implemented the international classification of functioning, disability and health in 2001. Since then, all health professionals have a standardised framework for measuring a person's level of functional ability. This framework takes into account the interaction of environment, society and the body, or physiological impariments. It stands to reason then that it should not be difficult for a health professional to determine whether or not someone is disabled, right? It's been 14 years, and yet, this is not the case. Those, like me, who have an invisible disability are not easily accepted as having any disability at all. We fight for accommodation in the workplace, government or insurance support offered to disabled individuals, and generally, acceptance of the fact that we do in fact have a physiological impairment that has severely impacted on our lives.
I wonder about this and about why we sit with this problem. Is it because we, as a society, cannot move past the fact that normal is determined by outward appearances? Is it because chronic pain isn't recognised as something that a person can't control? Could it be that we, as those who have these invisible disabilities, are hindering our own cause by hiding the difficulty we have in performing basic tasks? If I were walking around with outward signs of what I live with daily, a gaping, open, festering wound on my my face, would I be treated differently from what I am now? The short answer, yes. If I were walking around with my arm in a sling, would you expect me to carry heavy boxes? No. But if I had a chronic pain condition, like the millions who have Fibromyalgia, where the pain could be the same or worse than that of one with a broken arm, would you expect them to carry heavy boxes and be irritated if they said they could not? More often than not, Yes.

So maybe we need to stop hiding behind the facade of normality. Stop hiding the realities of our invisible disabilities for the sake of our colleagues and acquaintances' comfort levels.

I have difficulty doing what I was able to in the past, before TN. I can't open my front door when someone knocks because the wind generated by that action causes ridiculous levels of pain. There are many days where I cannot shower because doing so is akin to standing under a live electrical wire in a puddle of water while someone holds those wires to my face. There are times when I am unable to answer the phone because just saying hello is too painful. There are weeks where I am unable to go to work because I can't even keep water down, or walk because the action of swallowing is so painful that I throw up and walking causes a vibration in the body that sends me into screaming fits of excruciating pain. I am no longer able to work two consecutive days without knowing that it will take at least 4 days to recover. I am unable to speak continuously for more than an hour (which is required by my job) without becoming severely fatigued or experiencing a lot of pain. There is no medication that eases this pain for me (for many other TN warriors, some medication works, but only for a while). There is no cure for TN. It is not terminal, but it it has a lifelong influence on your life and a huge impact that only worsens as the disease progresses.

Is it pretty? NO. Do I want others to feel uncomfortable? NO. Do I want others to feel sorry for me? NO. Do I receive the same acceptance of those with visible disabilities? NO. Will I every get better? NO. Does that matter to others? Well....... I guess that is up to us.

It is up to those of us with invisible disabilities to break the silence. We need to stop tip-toeing around issues that have these severe influences on our basic ability to function in the world we live in simply so that we do not make others uncomfortable. Once we move out of that zone of comfort, that is when change will begin to take place. That is when we can start affecting enough change for organisations to be held accountable for passive aggressive management of employees with invisible illnesses. Change in social benefits and insurance companies policies for who deserves compensation and who doesn't cannot begin before we move out of that zone of comfort.

Perhaps I'm living in a dream world, perhaps I'm not. What I do know is that I will start shouting from the rooftops if I must, I will break MY silence. I refuse to be invisible. I am not invisible and neither is my struggle. I deserve to be heard. I deserve to be seen. My family deserves the support that any family who take on the role of carer should get.

It may be a struggle, but I will struggle to be visible for as long as it takes.

May the (invisible) elephant on your face be gentle today.



There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Just between me and you

Hi New TN warrior, I thought I would welcome you to this world with some advice based on what I have learned on this journey so far. So just between me and you...

Firstly, education is key. Make sure you have educated yourself about TN. There are lots of web posts about it, but the more reputable sites are those covering scientific journals and sites dedicated to facial pain research, like The Facial Pain Association or tnnme.com . It's important for your own sanity and for sharing information with family friends and colleagues. More importantly though, it's possible you will come into contact with health professionals who haven't yet heard of this rare disease, believe it or not, and this means you need to be sure of your facts going into a consultation. It's also very important, and I mean EXTREMELY important, to learn that all TN patients may be similar in how they describe and experience the pain. However, for some reason, we all react differently to treatment. What works for some to put them in remission, may not work for others.
Secondly, TN is unpredictable. One day/minute you will feel okay and the next you will feel like you are the source of an electrical storm or that a knife has been jammed into your face...or however you choose to describe your symptoms. It's scary, I know, but something that I am starting to accept.
Next, remembering the first two I have mentioned, it is understandable that you need to be your own best advocate. Your own best weapon as a TN warrior. You are likely to come across a doctor, specialist, emergency room nurse or manager at work that tries to dismiss your pain because either they aren't aware of TN or they see you as "ok" at that moment. This is when your self-education around the disease comes in handy. Your knowledge of TN and the possible treatment out there is how you can know what to ask in a consultation. Your level of understanding about your capabilities in your current pain levels or going in to a possible scenario where you will encounter a trigger, is what you need as a weapon in any discussion with your manager. Do not let someone who doesn't have TN try to dismiss your pain. Don't let anyone force you into a situation where triggers will be inevitable, e.g. having to sit outside in the wind for any reason if wind is your trigger.
That said, something that I really hate to have learnt is that this disease is an unrelenting beast. It doesn't care if you don't have plans for the day or if it's the day of your child's athletic event. It doesn't care of you have just started a new  career and need to be in important meetings. It will attack when it wants to. It's unrelenting, yes, but only you can decide how you respond. If you choose to push through the pain for an important event, you have to know how you will react later (for me pushing through in pain for something I don't want to miss, means days of being incapable of functioning afterwards). It kind of links to the education side of what I have shared. You need to educate yourself about your own limits and be sure that those in your life understand them. I have read many blogs and articles where people with various chronic conditions say that you should remember that 'you are not your disease' or 'don't let your disease define you.' I'm sorry, I honestly don't think that applies to TN. Someone walking past me causes enough disturbance in the air to cause pain...it IS my life! I think I'll leave that sentiment for another day.

Two points I think should be made together, is what I will end my conversation with you on. Find support, either from a family member/members, friends or online in one of the support groups. Your personal, physical support is so important to help you cope on a daily basis. When it comes to the online groups, there are many, find one you feel comfortable in. The value of having others, even virtually, know what you're going through is hard for me to explain. It truly does help. Once you know who really does accept, believe and support you, hold on to them. Your family and friends will often feel helpless because they can't make it better, they can't say 'get well soon' and they can't relieve your anguish in the midst of an attack. You need to acknowledge their helplessness but more importantly, hold on tight to the support you have. You are not alone in this, your acceptance of this last fact is what can keep you going even on the hardest days.
My dear fellow warrior, welcome to the battle, and may the elephant on your face truly be gentle on you today.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Atypically typical

Trigeminal Neuralgia is often categorised as either, typical (type 1) or atypical (type 2). Type 1 is  where someone experiences intermittent stabbing/shocking/burning sensation in the path of the nerve. It is debilitating and comes without warning or as a result of a trigger. Type 2 is a more constant burning, pressure or stabbing pain in the area of the nerve. I have the unpleasant experience of having both.
On most days, I have an average of the type 1 attacks 5-20 times but always have a constant level of 7/10 type 2 pain. I have been trying to understand the severity of the disease in a way that I am able to explain it to doctors and those around me but often the words just do not come close to providing a true account of what it is I feel.
Most people with TN will speak of flares as a period of time when pain is at a maximum and can't seem to be relieved by medication or any other methods. Attacks are the more sudden, short-lived pain that brings you to your knees.
I have come out of an atypical TN (aTN) flare of 36 hours now and thought it best to just explain it as it is....perhaps someone out there will understand and it will hopefully help them to understand their friend, loved one, or colleague with this horrid disease.
For the past 36 hours I have been unable to eat or keep even liquids down. My husband has made sure that I have at least tried to. The pain has been mostly a sensation of some demon pushing out my eyeball with a knife from the inside, coupled with a knife or ice pick stuck in my ear and a blowtorch focused squarely on my jaw. I struggled to speak, move or focus on anything with my eyes. Vomiting was all I could do, but that just intensified the pain. I honestly didn't care if I wet myself as walking to the bathroom meant I would feel the vibration that comes with moving, so getting to the bathroom was not a priority. What could bring about such pain? This time... Unintentionally turning to face my husband in bed while he was sleeping and having him breathe onto me. It's not his fault,not mine either...I'm just an atypically typical TN sufferer.

During a flare of 10/10 pain my family begs me to allow them to take me to the emergency room. I know that there are people out there who believe that because I don't go to the hospital, it really can't be that bad. However, being on high doses of schedule 6 narcotics on a daily basis, and hearing the accusations from doctors or pharmacists about being a drug seeker already, it seems quite pointless to go to a place for help when there isn't help available. It's a chronic, progressive condition, so a short term knockout by meds in the ER with a dose of irritation from staff is honestly not worth it. In this case, based on the feedback from fellow support group members, I am again, atypically typical.

So today, I am back down to a bearable 7/10 aTN pain and have had a few 8/10 TN shocks.... But I can walk today, I can talk and I can finally focus enough to read and write.
just another atypical typical day for me. Wishing the same for those I know living with an elephant on their face.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Hard work... For what?

I have been "quiet" thanks to quite bad and continuous attacks lately....it basically sucks the life out of you and I have had to prioritise.

I had a conversation with my husband a few days ago that has inspired this post.

One of the common themes in posts on the support groups for TN is that of "I never thought this is how my life would be..." I can relate and add another commonly used part to that sentence "...at this age."

The conversation I spoke of above followed a similar path. I began saying that I never dreamed this life up for me and my family and then stopped. You know what? I didn't dream my life up. I worked hard, damn hard, to get to where I was before TN reared its ugly head. I put in effort, tears, determination, late nights, worked up to 5 jobs at a time..... And for what? To live one minute to the next, not knowing if I would be able to continue a conversation or if I may embarrass myself by screaming like an incensed banshee in the middle of a meeting? Did I do all I have in my young life for me to become a relative prisoner in my own home only to leave when I really have to? Did I work to prove the naysayers wrong so that I would have to deal with many people not even believing the basic premise of who I am and what I deal with every day?  I worked hard to try and achieve ambitions in a relatively young career and in studies...FOR WHAT????

I think this, not the pain, is probably one of the most difficult parts of coming to terms with TN for me. 

So, for today can I ask you to do me a favour? If you come across someone in your life struggling with a chronic pain condition.... Don't underestimate the effect or impact it has had on, not just their dreams but, their hard work in this crazy thing we call life.

To my fellow warriors, May the elephant on your face be gentle with you today.

Carry on

I have realised that many posts I make on Facebook lately end with, "that is all, carry on." I mean it, I really do. What do I mean?
Well, I know everyone has their own life, their own joys, struggles, hardships and victories. I know all too well, as described in previous posts here, that my personal battles are not necessarily high on the list of things to worry about for many people around me. So I post a thought or rant and appreciate you reading it, but understand that your life needs to go on, thus the conclusion to my post, "carry on."

For me right now, to be able to do that in my own life is nearly impossible. I started experiencing pain, the stabbing, electric shocks of pain deep in my ear, mostly triggered by swallowing. This is not usually a symptom of TN. I recently saw my doctor and have now received the confirmation that it's a different type of neuralgia. This is genticulate neuralgia. Rare, as TN is and the fibrous dysplasia (bone tumor) that I have, but even more difficult to treat. Psychologically, this is a major blow. Any new symptoms when you're already fighting to find help for the old ones, just seems to be another slap in the face. You find yourself screaming at the universe, begging for a break.
With new symptoms, comes new meds or trying old meds again. This brings with it the dreaded side effects and horrible brain fog. I'm trying desperately to "carry on" right now with my family, my job, my hobby-turned-small business.... I'm trying.

To my fellow warriors, may the elephant on your face be gentle with you today and allow you to carry on.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Out of control

Generally, we all like to have some control over our lives. One thing that TN doesn't allow me to have, just like any other illness, is to have control over how I feel physically. It doesn't allow me to have control over how severe an attack is, though I can try to avoid triggers, I still can't decide when I'll have an attack and when not.

I do not have control over how I will feel in the morning, even if I did go to sleep with low pain levels. I do not have control over how much pain I will have by the time I get to work, even if I was able to wash, brush my teeth and get dressed without attacks. 

I think you get my drift.

Having a diagnosis of a progressive condition, one without a curative treatment, means that I have had to learn that there is a lot that I can no longer control. I have no control over how much it has progressed in the last 5 months.
It has been, and continues to be, a very difficult thing to deal with. As a result, I have found that I try to hold onto as much control as possible in areas of my life where I still have it. Certain aspects of work, being able to choose not to take medication that isn't working, selecting a procedure after I have researched it and discussed it at length with the specialists.... these are all things that I have control over. 

In a way, this is why it is so irritating and at times, infuriating, for someone to say something like, "but you were fine yesterday/earlier." It is extremely frustrating to have simple things that I should and can still do, being taken away from me because others feel that they are either more capable or are fed up with waiting for me to deliver on a promise where in the past I would have done it much quicker. I am not saying that I still expect to, or want to do everything I could before. I am however, finding that I am asking those in my life more and more to at least talk to me about their ideas of issues that affect me. To take away my decision making ability when I still have it, is by far, the most hurtful thing that has happened since my diagnosis and the progression of this disease. 

So, for those, who like me, are struggling to hold on to the seemingly simple matters in life.....carry on. Keep that control, even if your body has decided to take so much away from you. For those who have to live with, and interact with us, remember, this physical condition, though it has its' psychological effects, does not take away my ability to think and reason as I did before. I can still have a reasonable, logical conversation with you (assuming I am able to talk on that day) or email discussion. My disease might reside in my head, physically, but it has not taken full control of it and/or its' contents.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Randomly musing and missing being part of your life

A good friend recently said something to me that makes perfect sense, but yet, is something I have struggled to accept since becoming ill. People generally stay away from someone with an invisible illness, not because they don't care, but because they feel helpless to help the person they care about.

This makes sense. I know it does. On a purely logical level, I do understand. This is something that I have heard so many in the support groups cry and vent about. Family members who no longer invite you to gatherings, friends who don't invite your kids out to play with theirs, friends/family who no longer visit.

It is so extremely difficult to deal with. I have always been a home-body. Not necessarily someone to go out and party. What I have always done though, is enjoy spending time just being with family and close friends. I miss that. I have had to adjust to being a hermit for most of the week with a maximum of 2 days out of the week where I have to be in the office. Even that has become difficult, with more sick leave these days than before.

I have had colleagues, friends and family all say the words "I wish there was something I could do" to me recently. I do too. I wish there was something I could tell you to do. I wish I knew what would help. BUT, because I don't know what will work, and neither do the very qualified, highly specialised doctors, I do not have a straight answer to that statement. What I do know though, is that 'something' you may wish to do for the chronic pain warrior in your life, is just to be there. Coming to visit, even if it's just sitting and watching tv with me would be awesome. Sending a short message just to say hi, making sure meetings are not unnecessarily long.....those are 'somethings' in my book.

I have slowly, but very surely, felt my friends pull away. Colleagues and friends may be frustrated at my limitations, and I understand that. Just imagine how frustrated I am? How frustrated I am to have to plan my day to make sure that I do not have to brush my teeth too close to having to be in a moving vehicle because the combination would cause too much pain? Imagine how frustrated I am to have to avoid work gatherings that are in a place with too many windows/air conditioning/outside?
I know it must be irritating at times for you too. Irritating to have to hear about my pain all the time. Just imagine how irritating it must be to have absolutely no control over how much pain I may be in, over when an attack will hit.

Think of it this way, if someone had to break their arm today. Would you give them all the manual labour that needs to be done around the office/in the home? Would you tell them to get over it, pray the fracture away, deal with it because it isn't a terminal illness? Tell them to stop wearing a cast/sling to show everyone that their arm was broken? Would you stop being their friend for something that they did not have control over? I have heard statements to my face and behind my back, all to this effect. I don't expect pity, I don't expect my friends and family to be constantly asking me if I'm in pain (I always am). What I do ask for, and I am sure others with TN ask for the same, is for you just to be there. Just understand that this is scary for me too. I feel helpless and without any hope most days, and it would be awesome if you you said the same to me too, because then we could figure it out together.  For now though, unless I make the effort to contact many friends/extended family members, I have had to accept that their absence from my life is something I will have to live with. I just sincerely hope that it is because they don't know how to not be able to fix me. I don't want to think of the alternative, because that is a whole other post. A post about those who no longer want to be in your life because you can no longer help/do for them what you did before.....


To my fellow TN warriors, may the elephant on your face be gentle today, if not, may he go to sleep really, really soon.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

I'm okay

There's a popular spoonie who goes by the name of Mrs Welches on social media. She regularly posts pictures and posters that resonate with me. Today I saw one that I am sharing here explaining what it means when we say, "I'm okay."

I would like to elaborate on what that means to me, since its invariably my response to a "how are you" these days.

I'm....
Overwhelmed
Killing myself
Angry

Yearning

I am Overwhelmed  by the effects that TN has had on my life. Overwhelmed by the pain, the constant, excruciating, ever increasing pain. I am overwhelmed by the decisions that I find myself needing to make regarding my life, my future, my identity. I'm often overwhelmed just at the thought of having to do simple tasks, taking a shower, brushing my teeth, opening the front door when I can see that the wind is blowing outside.

I am Killing myself daily. Not literally, but figuratively. I am killing myself just trying to work for more than one day at a time. I'm killing myself trying to push through the pain on days when the kids need me to be there for them, helping with homework, going to a performance, supporting them at an event. I'm killing myself emotionally, trying to be strong until the kids go to bed each night just to give them a sense of normalcy.  It may be hard to believe, but it is killing my soul just knowing that I'm losing my ability to fight through the pain as well as I may have done last week, because this week is just so much harder and I know that next week will be worse.

I am Angry! I am filled with rage at this body that I possess. I am no longer as angry as I was before with doctors or colleagues or people in my life for not understanding and believing me. I'm angry at this disease. I'm angry because of what it has taken from me. I'm angry because I can't sleep, I can't eat, I can't talk....when the pain is at a maximum. I'm angry that it takes from me simple and important pleasures, like physical intimacy with my husband, kisses from my kids or my parents, long conversations with good friends. I'm seriously, dangerously, angry right now. The anger obviously is the only thing that fuels me enough to go on some days, but anger of this intensity can't be good.

I am yearning for so many things. I'm yearning for the me that I was before all this started. I'm yearning for the dreams that I have had to give up on and for clarity in making new ones and having the courage to attempt to achieve. I'm yearning for a few minutes, seconds even, of relief. Most people with classic TN do not have constant pain, unfortunately, I am one of the many who do. I am yearning for a night of uninterrupted sleep. I'm yearning, and aching, for comfort for my husband and kids as every attack and flare breaks their hearts in so many visible ways. I'm yearning for a cure for all of us who suffer this horrible fate.

So if you ask me today, how I am doing. I can honestly say, I'm okay. I like Mrs Whelches description and explanation of what she means when she says it, this however is mine. My explanation can't fit onto a poster, and I believe that hers might not either. BUT, I am grateful for those like her who dare to say the things that resonate so well with all of us suffering with invisible, chronic, illnesses and pain. I'm proud to be a fellow spoonie with her and continue to make it my mission to educate and inform others about it through my own social media presence. Some days though, I'm just okay  and those are truly the days that I find it harder than most to fulfill that mission.

For my fellow TN fighters, warriors we may be, but remember, it's ok not to lie when asked how you are today, it really is ok for you to be  okay. 

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Dear Dr X - an open letter to health professionals dealing with chronic pain

Dear Doctor X (insert other health professional as it applies)

Today I feel that I need to let you know what is on my mind. I studied and worked as a health professional and still work in that field, albeit, in education now. So before I say what is on my mind, please know that it is done with respect and a certain level of understanding of your world.

As students, you are taught the physiology and anatomy of a disease. It is impossible for you to know everything about every illness, I know that. You did however, I hope, enter this field to help bring relief to those in pain or poor health. You do this, often under difficult circumstances and with a very tired mind and body. If I may be as bold as to offer you some advice, please let me do so:

1. A patient with a chronic, rare, incurable disease needs understanding. That is a fact and imperative if there is to be any success in treatment. You may not ever truly understand the pain that this person is experiencing, and I sincerely hope you never do. But please try and understand the frustration and despair that they enter your office with.
2. You are intelligent and well educated, but that does not mean that you can assume you know exactly what all the symptoms are of this disease. It does not mean that because you were taught that chronic pain conditions may be psychosomatic, that this case is that. It does not mean that because this patient does not fit into the textbook picture of the disease, that they do not have it. Do me a favour, use the technology available to do a quick search on the research going on out there on the disease. It will help your patient to know that you are interested in finding out how best to help them way more than if you say "I have been practicing for years and have not heard of that symptom," OR "Because you don't respond to the medication decided upon 20 years ago, there is NOTHING else I can prescribe."
3. On the subject of research. Please understand that thanks to technology, many of the patients you see with these conditions, have done a lot of research. Please refrain from being condescending by assuming I am using WebMD and Yahoo Answers to find out information about my illness. I am not an idiot. I am not gullible. I look for scientific studies on a daily basis, hoping that today will be the day that someone has published a new treatment option. I am not alone in this, MOST of us do this. You may find that your patient will come to you with those studies in their bag, but unless you seem open to finding out new scientific information, that research article that was printed out, will walk out the door with the patient.
4. We are, generally, NOT drug seekers. Asking you for a prescription for a medication that has helped in the past, or helped someone else that I have come across with the condition, does not make me a drug seeker. Yes, many of the drugs we can take do have addictive possiblities, but that doesn't mean you have the right to say to me : "No, that is very addictive and WILL NOT help for your pain" and walk away. It is hurtful to hear and adds to the despair. Perhaps you have another treatment option as a suggestion. If not, please read no. 2 in this letter.
5. Your comments about maintaining quality of life to a patient who has had the rug pulled out from under them in a heartbeat is appreciated. Please though, try to understand this. Just because I am still employed or am able to look after my family does not mean that I have the same quality of life that I had or that I believe I deserve. My visits to you and many others in your profession are part of my life. As a result, quality of life for me includes the quality of care I receive from you. If that is not at a high level, if I am not longer able to work with the same efficiency I once did, if my kids have had to grow up way before their time because I am not able to do what I did for them......then I feel that I do not have a good quality of life. So to those in your profession who say " I can't do anything more for you, let's try to maintain your quality of life", please understand exactly what that means.
6. Finally, it is unacceptable, completely and utterly, unacceptable, to expect that you know more than I do about my own symptoms. Symptoms, by definition, is a subjective thing. There are signs of an illness that are objective, but only I can tell you what I am feeling. So please, I am begging you (and I've actually used these words), when I say do not touch my face to 'check my sensation', don't do it. It is excruciating. If I was able to put up with it, I would rather have my daughters kiss me on the cheek....that is worth it. I would rather have my husband stroke my face, but when you decide that you're not sure if what I am telling you about my body, my symptoms is true and you then decide to elicit the exact symptom that I have just described to you as being unbearable, don't act all surprised when I scream, cry and attempt to inflict pain on you with a slap or a kick.

Dr X, I sincerely hope that you take this in the light with which it is written. I appreciate your compassion and care for all your patients, including me. I understand your frustration at not being able to provide a quick fix for me. If you are still around and willing to be my physician even after you're out of ideas and are simply able to manage my care with follow-ups to ensure my records are up to date, I applaud you. Believe me, we go through so many of your colleagues because they simply show us the door when we are too complex for them. 

There is much more I would like to say, and I am sure that I will find the words and courage to do so one day, but for now, Dr X, thank you for your time in reading this. I sincerely hope that if there are other doctors reading it, that they are some of those who DON'T need to read these words and that one day you will also say, 'that used to be me.' Also know that it is my goal to spread awareness about what chronic pain, specifically, Trigeminal Neuralgia does to a person, so I will stand by what I have said here. I will also be working hard to change the minds of the medical insurance companies and my colleagues in the way we educate your future colleagues - So, I am not only targeting you.

Sincerely

Lianne

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

HOPE, No ... Give me TIME

It has been a few days since I wrote anything, and with good reason. I have spent the past few days dealing with pain and disappointment of yet another treatment option not working by trying not to think about it at all, finding distraction where I can. This has me thinking about the word HOPE. I hear it on a daily basis now, " I hope you are feeling better today", "We hope that the new treatment or surgical procedure works", "All you can do is have hope and faith that it will work out."

Early on in the process of trying to find support online from others with Trigeminal Neuralgia, I found out that chronic pain sufferers use the word HOPE as an acronym, Hold On, Pain Ends.

Really? How?

How is this pain going to end? How can this pain end when there is no known cure or long term treatment, yet? When healthcare professionals question our symptoms? When we are treated as drug seekers just because we go from one doctor to the next to try and get relief? When trying to find help requires time and finances that we don't have anymore?

How am I supposed to be positive in the way I think about how my life has changed when those changes have forced me to give up on dreams and aspirations for my career, friendships and relationships? How can I hold onto HOPE when I keep on being shown the door as yet another surgeon or specialist says, ' sorry, there's nothing else I can do?'

Every time I have asked myself these questions in the last week, I think about something I heard. A short while ago, I watched an episode of "Grey's Anatomy" in which one of the characters has been diagnosed with a supposed inoperable brain tumor. Now I know that the medicine on the show is not exactly science and don't watch it for that, but rather as a show I really love. What hit home in the episode was a monologue by that character after being told that a colleague felt that she could successfully remove the tumor: "Can you name the single worst most malignant symptom of terminal cancer? It's hope. It's recurrent, and it keeps creeping back in no matter how many times it gets ripped apart … And every time the hope goes, it takes chunks of you with it, until you can only find comfort in the one thing that you know you can count on: that this thing is going to kill you."

Please DO NOT think that I am equating Trigeminal Neuralgia to terminal cancer.  The point I am trying to make is that HOPE, for me, is like that. It's the worst possible thing I could have right now. 

Do you know why? 

I have spent thousands of Rands seeing specialists, taking medication, having tests, having two surgicial procedures in the past year. With each Rand spent, with each doctors visit, with each test or procedure or new medication prescribed....do you know what came with that? Yes, HOPE. Now, after both surgical procedures have failed to relieve my symptoms, even for a single day, I can tell you that I do not have HOPE. I cannot Hold On until this Pain Ends. If I did, I would probably allow myself to sink into a serious state of depression that would allow me to reach the point of submission to my pain and ignore my guilt about wanting to end it all. If I continue to hold on to the HOPE that the post-op visit to the surgeon tomorrow will bring me anything more than a " well, I told you there was a chance it wouldn't work" coming from across the table...then I am an idiot. I would be an idiot to think that being HOPEful that this pain will end is going to be around the corner.

So now what? How can I get up every day and go about my life? Well, I don't know. I don't know how I get up and how I will go back to work next week. I don't know how I will find the strength to make it through the next bad attack. What I do know is, I'm still here. Even if the rest of the world (i.e. my friends/acquaintances/colleagues) has become tired of me sharing my story, of raising awareness, of 'complaining' about my pain....my family is still here. We have adjusted to a different way of living. We are pushing through the difficult times and emotions this causes for our daughters and for our marriage. I'm still here. I don't know how, but I am. 

One day, I know, I will again find the courage to fight and look for another option in my treatment. Today though, that is not going to happen. I need time to adjust to this new level of pain. I need time to deal with the fact that my HOPES have been shattered yet again. 

So with this I say, give me time. This Is Momentarily Excruciating, but those moments are coming in thick and fast right now. So give me TIME to deal with it. I may not respond to messages or calls, because it is hard for me to respond to a "how are you" with an " I'm fine/ok".  I just need TIME. 



 There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Before you throw in the towel...

Before you throw in the towel
Before you give in to the pain
Before you decide to end it all
I have a few things I'd like to say

Have you shared your love with someone today?
Did you share your story today with another who needed to hear it?
Were the last moments you had with a child/spouse/loved one spent doing something special?
Do you have an idea of exactly what contribution you have made to the lives of those around you?

Did you notice that your loving hug/touch made him smile?
Did they thank you for sharing your story and appreciate it sincerely?
The joy of that special moment, did you notice how it made the sun shine brighter?
Can you really not see that without you here, there are some people who will not be fully developed into their best selves?

So, do you still want to throw in the towel?
Are you going to give the pain the power over you?
Is the end really today, this hour, this minute?

Do you not realise that there may be one person who needs your
Love
Story
Special moment
Life contribution.......

Have I said enough?

I hope so...

  There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

May the guilt be with you

I saved this post and was ready to publish when I realised I should start with a disclaimer: I am not suicidal. I am not going to harm myself or others. I am safe, I am loved, I am in pain - but it's a pain I know and am dealing with. 

Now for the actual post:

There have been moments in my journey with TN where I have felt like I wanted to throw in the towel. Moments where I knew that I was teetering on the edge of joining the statistics that have resulted in TN being dubbed the suicide disease.

Those moments have been interwoven with an undeniable, excruciating sense of guilt. There is a guilt that comes with living through something that others don't understand or can't see. Feeling guilty because you're no longer functioning at the same level you did previously. No matter how illogical it seems or how much psychotherapy you go through, this guilt is there and is difficult to ignore.

The guilt at those moments of despair is different. Its guilt that eats at you for letting your supporters down. A feeling of guilt for being weak and not being able to push through. A feeling of guilt because you know there is going to be someone saying or thinking that "this isn't going to kill you" so you should be grateful and not desperate for a way out. Guilty feelings that fester because, surely you should have been able to push through this for your spouse, your kids, your loved ones, because it's selfish to think otherwise. Guilty feelings exacerbated by the constant advice about the healing that will come through prayer or exercise or lemon water (or any other natural remedy). Guilty feelings raised up on you because you should be thankful for the advice as it shows care and support from those who offer it.

Yes, the guilt that lurks daily is exponentially greater at those low moments. Sometimes, scarily, the guilt is all encompassing. Those moments when the pain is suffocating and the feelings of guilt are low, are the really scary ones.  More importantly though, in those really scary moments, I am grateful for my husband. His support and offer of a shoulder to cry on, an arm I can dig my nails into, or 'borrowing' me a spoon to at least shower, is invaluable. I can honestly say that without that support, without him helping me fight the demon, I would find it more difficult to embrace that guilt as a means of helping me keep it together to make it through the extreme pain.

I hope today that all those living with chronic pain, especially TN, have some guilt to keep them going. If you're lucky enough to have moved past that feeling of guilt, my wish for you is that you never feel it again or at least never have to rely on it to get you through a dark moment.

May the elephant on your face sleep tonight.

  There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Fact or fiction?

I often struggle with the dilemma of sharing my personal journey versus sharing facts. Facts are good, they inform others in a way that promotes awareness and can be seen as educational. Feelings/personal journey are useful for trying to create an understanding of what it means to be living with TN but can be seen as complaining or negativity. I know I have "lost" friends who are "tired" of my social media posts or the way in which I have changed....but I will continue to share as I know that those people were never true friends to begin with. I do think though that I have neglected to personally share facts about living with TN, though I have posted on social media various links and posters to share the information, here are some of the facts I have discovered through research (actual scientific studies and not yahoo answer websites), personal experience and the sharing through support groups I've been lucky enough to find on line.

1. Trigeminal Neuralgia (TN) is a chronic, progressive condition in which the person experiences severe facial pain. The pain is most often triggered by light touch, vibration or a breeze on the face.
2. TN is generally classified in two distinct groups, TN 1 = sharp, electric shock pain that comes and goes. This pain can last seconds or minutes with some people experiencing up to 100 attacks per day. TN 2 = also known as Atypical Trigeminal Neuralgia is almost always a constant, deep, burning pain that "flares" in intensity but almost never goes away. 
3. The literature says that TN is generally a condition that affects those with an average age of 50 or older - The support groups tell a different story with the majority being in the 20-40 range. This year the international awareness day for TN is aimed at raising awareness of the children and teens with TN, that should say enough about how outdated the stats are.
4. Those with TN have to go through a long process to receive a diagnosis, often having teeth extracted and diagnosed with migraines or Temporal-Mandibular Joint pain before finding a diagnosis. There are very few of us who have this diagnosis who have not been ignored, called liars/drug seekers/hypochondriacs in the process. The health care system, regardless of country, is not equipped sufficiently to deal with conditions without clear, curative, protocols for treatment, that is a very sad, very true, fact.
5. Treatment usually begins with anti-seizure medication (Tegretol is the first line of treatment for most) through a trial and error approach for finding the dosage and type of medication that provides the most relief. If and when it is not enough, certain anti-depressant medications are added as they are often used in nerve pain conditions. Narcotics may or may not be added for pain relief but does not work on its' own for most of us. Surgical options are Micro-vascular decompression (where surgical Teflon padding or a similar material is placed between the nerve and any blood vessels causing the pain), Steriotatic Radiosurgery (concentrated, directed radiation to damage the nerve), Glycerol rhizotomy (a glycerol solution injected into the nerve ganglion to damage the nerve), Balloon compression (a procedure where compression of the ganglion of the nerve for destructive purposes is done).
6. None of the treatments can guarantee 100% pain relief or relief that is lasting. 
7. Trigeminal Neuralgia has no cure; it varies in intensity for each person; it is real; it is debilitating; it is not fully understood by MANY health care professionals; it requires research to enable those who are able to help, to know what to do.
8. People with TN have and do lose their jobs as a result of the pain and or side-effects caused my medication. We are almost ALL dealing with family, friends or colleagues who choose not to accept that the pain is real or that it is affecting every aspect of our lives and as a result lose those friendships or support in the workplace. It's a difficult disability to defend in applications for disability cover due to the lack of knowledge and understanding regarding the true impact on functioning.
9. We are determined to find a cure and raise awareness, this is evident in the efforts by many to work on various events for 7 October, the international awareness day for TN.

Finally.... 10. we miss our lives that we once had. Once the progression has reached a point where no remission is in sight, we miss our work, our family events, our exercise opportunities, our simple pleasures such as taking a walk without fear of a breeze knocking us to the ground.

For those interested in more information, visit The Facial Pain Association website. This website provides updated research and support links. For those who are looking for support on Facebook, a good place to start is End Trigeminal Neuralgia a page with detailed information and testimonials regarding treatment.

  There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader