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.