(TN) What Is Trigeminal Neuralgia

Trigeminal neuralgia is a sudden, severe facial pain, described as sharp, shooting or like an electric shock. – NHS Website 

Last year i got very ill with shingles, during the winter months. I was under a lot of stress from a toxic friendship, which made me sustepible to the virus. I work with children, and it’s guessed that one of them, may have had chicken pox and not known about it at the time.

At the time i just thought i had really bad flu. I was so tired and achy all over, with sharp pain in some of my mucsles. And running a very high fever.

This seemed to die down, but then the TN came and it grew worse and worse. TN normally attacks just one side of the face, part of your forehead, cheek, jaw (upper and lower and it feels like you’ve got an tooth infection in our your teeth), your sinuses on one side, and sometimes it can also affect your throat and neck.

TN is also dubbed the ‘suicide disease’ as many people cannot handle to pain 24/7 with no respite, no end to it in sight at all – end up commiting suicide.

I actually experienced this first hand, but due to the person i am, deep down, i managed to hold on. And fortuently for me, it did stop.

But it did take months for it to end. I struggled to eat and sleep, and lost weight due to it. I also distanced myself away from the toxic friend, which helped. I was also on very strong painkillers, which had some funky side effects. One being euphoria. Another being stomach problems… and developing tics in some of my limbs and muscles. I was completely drugged up and out of it. I have very limited memory of that time, which has been filled in with what i wrote at the time, and things people have told me.

In short, trigeminal neuralgia happens when something irritates the central nerve of one of side your face. And then any tiny sensation can trigger waves of intense pain.

Such as a light tickle of a feather, lying down – even if you’re not lying on your side, a breeze, hair resting on your face, eating, talking, smiling, etc.

It’s a horrible and horrific thing, and it took all that i am, to refuse to let it beat me. I smiled and laughed even though it felt like my face was being burned away by acid. I went out and went to work, even though i had to use every bit of will-power not to scream the place down. Fortuently, i was working in a job that only required me to come in one day a week for 2 a bit hours.

Most of my time i spent alone. I couldn’t watch tv as i became light sensitive. Couldn’t listen to music for long – though binaural beats did help me sleep. I just spent most of my time sitting, alone, in a dark room, doing nothing. Because that’s all i could do. 24 hours a day, i slept only out of exhaustion.

There are people out there who have lived like this for years. And there’s no end. This disease isn’t designed to end your life, but instead it forces you to take it. This isn’t cancer where there’s eventual release – either life of death. This eats away at you, in an invisible way – because there’s no marks, till the very end. Year and years.

 

So the next time you try to say to someone with TN, you know how they feel because you get bad migraines, had severe tooth or sinus infections. Think again. Next time you say to someone with TN, that things could be worse, they could have cancer… think again.

 

 

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(N24) Personal History

When i was born, my mum noticed i was unusually sleepy. When she mentioned this to the doctors, they simply told her i was a sleepy baby, and that i would grow out of it. Except i didn’t. I had to be woken, to be fed – which normally, should’ve been the opposite!

My mum just thought she was fortunate though, that she had such a quiet baby.

School was very difficult – not just for the bullying, for being different. But also it was difficult to form and keep friendships, because i wasn’t there for half of the time. Me and my parents got in a lot of trouble for my absence. Which of course just made things worse, and it created a lot of trouble at home, in the form of physical abuse from my mum. She vented all her fear, frustration and stress out on me, which has created a long term emotional effect on me, sadly.

I did manage to pass all my GCSE’s, by revising like mad! But unfortunately i wasn’t able to complete college, till i was much later.

I was officially diagnosed with Non-24 Circadian Rhythm Sleep disorder when i was 19. It was first picked up when i was sent for a psychiatric assessment for severe depression. The nurse felt my problems with depression were caused by my poor sleep pattern, than vice versa. I had to go to a special clinic in London where i had an overnight observation – and i didn’t sleep very well at all!

I was very isolated in my late teens and early 20s, till my sleep pattern stabilised in a better way. During this time, i got engaged to my first love – but it fell through partly due to our age, it being a long distance relationship, but mostly to do with the strain N24 put on our relationship. I was very depressed, and regretfully took it out on him without being aware of it. I felt completely emotionally removed from him, but i knew deep down that i still very much loved him.

I had a hard time forgiving myself for the things that i had done, and the way i had treated him. After the relationship ended, it had a negative effect on him and how he treated women and gay people afterwards.

I got a new and more local set of friends, and got involved with a youth group – which did the world of good for me. I had a string of relationships afterwards, that never amounted to anything, until 2010.

Where i met a guy who would turn into being my fiancee one day. With him i had my longest relationship too, and the first time living with someone.

I had been on long term welfare benefits, and with the change in the benefit reform i was passed over to be assessed for employment and support allowance (ESA), which i failed. I failed because the assessment criteria doesn’t cover complex neurological conditions, such as N24, so couldn’t be properly scored. It’s actually more ridiculous than it sounds.

I was stripped of all my benefits, and was facing losing my home. I had no where to go, and no money to fall back on. Fortunately my boyfriend had a good job, and saw the situation i was in, and stepped in. He took on my flat and all the bills, and i attempted to get back into work.

The jobs i found were horrid, and i experienced assault and discrimination. By the time 2013 came round, we were in considerable amount of debt and were looking at moving. Fortunately, a new position came up in a branch of the company he worked with, in Cornwall – where he had always been wanting to move back to ( he originally came from Cornwall). He was successful in getting the job and we started looking for places. I stayed in our flat, while he moved back to his parents – this was a temporary measure. In the time being, i started my claim for JSA. Our relationship fell apart, and i stayed where i was.

I continued on JSA, and in 2014 started back at college, in a part time basis. I did advanced IT and book-keeping. I very much enjoyed it there, and eventually found a job as a classroom assistant. I enjoyed that job immensely and have been there for nearly a year. With it, i have found a very good employer. And during the time i volunteered with a local disability advice service.

My sleep pattern has gotten better and better over the year and i’m just starting to be able to get up before noon every day.

Recently I’ve accepted a job offer to be an after-school play worker with a local school. The hours are perfect for what i’m looking for. I’ve also got a driving test coming up too, the ability to be able to drive has always been a long time dream and goal of mine, which i seem be fulfilling.

All those years ago, when i first got my diagnosis. I thought and felt like my life had ended. All i could see in my future was an black, never-ending abyss of nothingness.

Well, i guess it goes to show – life is full of surprises.

(N24) Caffiene

Oh you heavenly devil, caffeine!

Around the time i received my diagnosis of N24, i was told by a ‘sleep specialist’, that i should try drinking caffienated drinks in the morning, to help me wake up.

The only problem was that, upon following this piece of ‘advice’, i found out that i have an allergy to caffeine. I’m okay with small quantities, but..more than a glass of coca-cola, and it’s all over.

It mucks up my tummy and leaves my sleep pattern shot to pieces as my body just can’t process the drug very well, so it takes AGES for it to leave my system.

It’s taken some time for me to figure out that i can’t drink drinks that have high quantities of caffeine in it. And the drinks that have a small amount, i can’t drink after 3pm.

 

(N24) Melatonin

In 2005 i was put on Melatonin 3mg, to help regulate the body clock disoder. At first it wasn’t really helpful at all, and i had to twiddle with the timing of it.

In 2006, it managed to ‘root’ my sleep pattern, where i could get up consistently at one part of the day, every day.

It took till about 2010 for me to get it to the point where i could get up between 12noon and 3pm. Then another year or two to get it to just 12noon – no later.

I’m still aiming to get up earlier and earlier, but it’s a process.

Sometimes the Melatonin works, and i’m able to get to sleep earlier than i would’ve. But sometimes it doesn’t work.

It has meant that i’ve had to make a few changes in my life, that took many years to accept. For example, i can no longer drink alcohol in the evening (except on special occasions), and i can’t have caffeine of any quality after 3pm. The caffeine part, has been the hardest part.

Melatonin itself, is actual a chemical that your brain naturally produces, to help you to sleep. People with body clock disorder, the release of this chemical can go wrong. Either it releases are inconsistent times, or there isn’t enough of it. Which is where the synthetic version of this in tablet form comes in, as it helps to correct it.

Little is still none about circadian disorders, and what causes them or even how to treat them.

 

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Repercussions Of Pushing Myself Too Far

To get where i am today, in terms of my disorders, i have had to push myself.

With the sleep disorder, I’ve had to set myself limits on when i allow myself to sleep in till, what time i go to bed, what time i limit my caffeine intake, etc.

With autism, it’s been, testing my social boundaries. In the past, it’s been things like allowing people to hug me, going to pubs/bars/restaurants, or even just eating out somewhere.

All these things are good and positive. But sometimes i get frustrated with myself, or i get impatient and try to push myself a bit too far.

With the body clock disorder, I’ve tried making myself get up far, far too early. Taken jobs that start in the morning, over and over again. With autism, it’s been forcing myself to be okay with crowds – which was way beyond what i could handle at that time, seeing my friends every day – i love my friends so dearly, but i just can’t handle that, working in busy, noisy, high-pressured jobs (retail). All these things, fail. They result in me breaking in some way or form, either physically by becoming really sick, or mentally. It’s not pretty when it happens either, but it’s something i can’t hide.

Sometimes, when people don’t understand my limitations and try and dismiss them by saying ‘you’re holding yourself back’, ‘you’re limiting your own potential’, etc. It means that they then can be quite pressurising, and in all honesty i know, i don’t really know how to deal with that. It is something i am slowly figuring out how to handle, but it’s a process. Even with the best intentions, it’s extremely unhelpful. I think with some people they’ve seen it as ‘showing their support’, when in reality, they’ve just made things harder.

Sometimes i do need a bit of a push, and can be quite stubborn. But what i would say in that situation is, don’t rush to push. Give me time and patience. Take a step back, and see if you’re pushing me into doing something i really can’t or don’t want to do, or if you’re supporting me in something that i’m a little unsure or unconfident in doing.

Ultimately what happens when i have pushed myself, or been pushed too far, is that i feel like a failure, which then has a knock on effort on my self-confidence and self-esteem. I’m trying to combat this by being more gentle on myself, i still push myself, but i’m trying to temper it with acceptance.

(N24) Sickness & When Things Go Awry

Sickness

Like with anyone else, sickness can play havoc with my day to day life. The number one thing that suffers the most, is my sleep pattern.

This will be displayed in one of two ways

  1. Lots of sleep: Meaning, the amount of time i’ll spend sleeping, will increase. This is actually one of the worst things, because it means my day could be considerably much longer than the 24 hours. Which means that i may not be well enough, sleep wise, to go to work. I might not be able to keep any appointments i’m due to attend around that time.
  2. Not much sleep: The better of the two, technically. As it means i may be more liable to be able to go to work, and get stuff done, with a bit of assistance and patience.

The best thing to do in this situation, is to just leave me to it. Give me oodles of sympathy, cuddles….gifts…whatever. But in terms of helping with my sleep pattern, let me deal with it myself – i have more experience 😉

Things that happen

Sometimes incidents or events may emerge, that may mean i’m having to stay up longer, or i’m upset and stressed out. It’s mostly the latter. But occasionally, my body will throw a ‘tantrum’, and for no reason at all, will just throw my sleep pattern out the window.

Sometimes talking helps, to figure out what it is. But i’m so used to this happening by now, i know what i need to do. Please don’t interfere, even after reading this. I know you may think you’re helping, but it can make it more difficult.

Basically what i do, is keep the timing of my sleep medication the same, keep my sleep routine the same. But also i will look at, what is causing it, and ways around or resolving it. Mostly it’s being patient, and let things work out for themselves.

Sometimes it may mean i have to take some time off work. But i try not to with that, because it can cause problems in work. I like routine, which I’ve mentioned before in a older blog entry, and so if i have too much time off in a short space of time…it may start off another ‘internal’ routine which can be hard to break. My mind will be compulsed to stay at home, and i will get a little voice in my head encouraging me with this. It’s not good.

So i try and keep time off, as short as possible.

On the flipside though, having a break from a job, and coming back a few months later can be excellent. I can have a bit of a reset, energy wise. Instead of having to take a day or two off, regularly. But the cause behind this, needs to be resolved. So it may be the hours i’m working, the time of day, the duties i’m doing, the journey to work might be very tiring – adding to what would be an already tiring day.

These things need to be addressed. In the past, i tried various different jobs. Most of them started in the morning, and i felt that i could do them, because it was only one day, or it was only a few hours, it was nearby, etc. Every time, though, i was deluding myself to what i could actually cope with. Consequently what would happen is, the tiredness would roll on from one day to the next, and the next. Never really getting the rest i needed before the next day i worked. After a couple of months, i would find it struggle to function, on any day – whether i was working or not. And everything would suffer, i would get ill, my mental health would suffer and the challenges that autism brings on a daily basis – becomes harder to deal with.

Ultimately i had to leave these jobs. So on my CV, I’ve been left with a patchy work history. Some employers see it as a commendable thing, because it shows me trying. But most, just see it as me being an unreliable employee.

There’s being tired, and there’s being Tired.

A lot of people when i try and tell them about this, tend not to understand so well. I think, they see it as me being a bit of a whiner and/or lazy. Everyone gets tired, of course we do. But the type of tired i get, where i can’t work or struggle to function, goes beyond that.

The type of tired i get, i wouldn’t be able to go out after work to let my hair down. I wouldn’t even be able to stand, without falling over or throwing up. And this doesn’t go away as the day goes on. I don’t ‘wake up’ from it. It continues all day, and can pass on to consecutive days.

A common symptom of N24 is chronic fatigue. Even simple tasks, such as taking a bus journey to work, can really tire us out! How you feel at the end of a long day, is how we would feel at the beginning of it.

(N24) Nighttime Communication

When i was younger, i was awake mainly during the night. Consequently i made a lot of friends who were also awake at night, and even those who weren’t normally, still knew i’d most likely still be awake.

This is something that a lot of people have gotten used to. I frequently get texts or calls late at night.

This didn’t used to be a problem until recent years when my body clock disorder has improved. As i said in my previous post, i try to go to bed at 9pm, but 12am is lights off.

I don’t mind people texting or calling me for a quick chat between 9 and 12, that’s fine. Depending on what it’s about. Light and fluffy = good. Deep and Heavy = bad!

But after 12am, i’m still finding that people are trying to text or call me. These people know about my disorder and they i have told them to refrain from contacting me after midnight. Yet they still try to contact me.

Yes, i know i don’t need to reply. But the flashing notification light and/or the notification sound, can wake me up or distract me from falling asleep.

It’s been put to me that i could download an app that shuts off some of my phone functions until a set time, but i shouldn’t have to do that.

Instead i expect people to respect my request to be left alone after midnight. It’s a simple, common courtesy! Why people feel it acceptable to go against that, i have no idea!

I know some people have said to me, ‘well, sometimes you’re still awake at this time’. Yes, but don’t take that as a green light for the rest of the time. I get insomnia. If it says i’m online, and i’ve messaged you, then fine. But for the majority of the time, i won’t be awake at that time. Which is why i ask not to be contacted after midnight.

I know i’m repeating myself at this point, but that’s only because it doesn’t seem to be sinking in with some people!

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(N24) Sleep/Wake Times

My sleep pattern isn’t all over the place like it was when i was younger. I have a routine when it comes to bedtime and waking up. These are pretty strict, because my body would love nothing more than to revert back to doing what the hell it likes. Which would mean i suffer in my life’s quality of living.

Bedtime!

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I resign myself to my bedroom at about 9pm. I can be listening to music, reading, watching stuff on my phone or tablet, anything, aslong as it’s confined to the bedroom. I take my sleep medication at 9pm too. At about 12am, the lights go off and i must try to get some sleep. No checking the phone, no looking at stuff on my tablet pc, no reading, etc. I can have music on low, for a little while if i find its helping. The only time i’m allowed to use my phone is if i’m experiencing a bit of anxiety and need to make a note of something.

insomnia

If i can’t sleep before 3am, i get up a little. Have something to eat, and potter around the bedroom again till i feel ready to try to sleep again.

Wakey Wakey!!

My first alarm goes off at about 8am. This will be turned off 9/10! Very rarely will i feel ready to get up at that time. The next alarm is at 9am, and then consequetive alarms at 10am, 11am and a last one at 12pm. At 12pm, i have to get up, no matter what (unless i’m ill) and try to get on with the day. 12pm is my cut off point for sleep! On average i will wake up about 10 or 11ish.

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I’m not quite up and raring to go when i wake up. It takes me a little while to come to. Basically, i can’t see. Everything is blurry, it’s like trying to see through clingfilm.

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And i feel like i’m experiencing intense G force on my body. So i will feel like my head is in a vice and my stomach will be whirling around before plummeting.

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It’s not a nice experience basically, but aslong as i’ve had a good number of hours sleep, it does wear off.

During this time, the allure to fall back asleep is strong in its game! So this is the time where i start looking at stuff on my phone. I will look at buzzfeed, facebook, livejournal and lastly my emails. I might even engage in messaging people on whatsapp (for the record, theres nothing i love more than waking up to morning texts from someone, wishing me good morning and to have a good day!).

Once this is complete, then i am ready to get up, get washed and dressed, something to eat and to get on with the day at hand!

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(N24) What is N24?

Next disorder up, is the elusive and incredible rare

Non-24 Circadian Rhythm Sleep Disorder!! 

 

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What Is It? 

That is the big billion dollar on so many peoples lips, when they ask me. I will answer this in two ways. I will give you the in-depth answer, and then the lamen answer which i fall back on, just to answer the question quickly when it’s asked.

The In-depth answer is: We all have a circadian rhythm which regulates not just our sleep/wake pattern, but also regulates out appetites, hormones, body temperature, etc, when they’re supposed to be released. Which is why you get start to get hungry around certain times of the day, and why women and even men, can get grumpy at certain times of the month.

My circadian rhythm is off. It works on a 27 – 33 hour day, naturally. Which means that when i don’t force myself to wake up at a specific time – using an alarm clock for example – i will sleep for about 12 – 15 hours, and be awake for 15 – 18 hours.

Here’s what it looks like:

Monday – Wake at 9am, Sleep at 12am Tuesday

Tuesday – Wake at 12pm, Sleep at 3am Wednesday

Wednesday – Wake at 3pm, Sleep at 6am Thursday

And so on, advancing by about 3 hours (based on the 27 hour day)

This is why the disorder is called Non-24, because it exceeds the 24 hour day. Most people, on average do have days that are slightly longer than 24 hours – but it’s still within the normal ranges that it won’t really have much of an effect on your day to day life. Mine does.

The lamen explanation?

I have a wonky body clock, which means i can’t get up in the morning.

Done.

This explanation works because it’s simple. We know what a body clock is, because so many women are battered by the phrase at some part in their life, when it comes to baby making. So we have some kinda of understanding of what it is, although very basic. Also, ‘can’t get up in morning’, very self explanatory.

And to answer the common questions. No it is not sleep apnea. No i do not have narcolepsy. No it isn’t insomnia. No i am not a night owl.

Thank you.

Talking About Autism

I was diagnosed with Autism when i was 29 years old. So less than 2 years ago. The first time it was brought up was from a discussion i had with a friend of mine. Her sister had just been diagnosed with Autism, and the reasoning for this was her parents caught her stimming, the same way i do.

This caught my attention, because i knew what i do, is not normal. So to hear of someone else doing the same thing, was intriguing. I started to do a bit of research into Autism, and point for point, i was starting to make a lot of sense, with the various quirks i have, or used to have from what i was younger, that set me apart from all my peers. Not just some…all!

I had already been picked up by a youth worker that i was behind in my social skills, for my age. So was allowed to join a youth group, and as predicted, i had no problems fitting and settling in. I felt it easier to relate to these people who were younger than me. It helped greatly in learning and improving my social skills, and helped me expand my boundaries.

When i first broached the topic of Autism with people, for the most part it was met by a lot of negativity. Because i’m seem to function very well, people then tell me they don’t see it. They don’t notice it.

The thing with Autism though, is that it effects everyone differently. You can’t compare one autistic person with enough and expect them to be the same. Such is the case with a friend of mine, who is also on the spectrum. In some ways we are very alike, but then in some other ways we’re the polar opposites, by how Autism effects us.

But because i come across as ‘normal’, it does make it exceedingly difficult in telling or talking to people about it, and the challenges it poses in my daily life.

When i do tell people, its either met by people saying they don’t notice it in me. That i seem normal, and then proceed to ask me the worst question to ask an autistic person

‘So how does it effect you?’ 

How can i answer this, when i have no way of knowing what it is like to – not be me?! Autism isn’t something that people contract. It’s not like they go from being a normal, regular person, to then something else. We’re born this way. We have nothing to compare it to.

It’s a bit like saying to a woman, what’s it like being female?

Encourage discussion, but think about what you’re saying or asking. Don’t grill us.

Another common reaction is people changing how they treat me. They start to be overly cautious, or start treating with kid gloves or like a child.

Firstly, research Autism yourself. If there’s some parts that you’re curious on, then do ask. Secondly, don’t treat us as any less of a person than we are. If we seem unsure or hesitant with something, stressed out or upset, talk to us. Don’t just assume that we’re going to have trouble with something, because it’s seen as being stereo-typically autistic.

Stereotypes

The most damaging part, is the media, the way it stereotypes autistic people. We’re either seen as being child like, dumb, unable to take care of ourselves, can’t look at people, rocking back and forth, non-verbal and/or screaming and having tantrums, especially if they get touched by someone.

Or, we get seen as someone rude, eccentric and somewhat of a mad genius. Really good at math, and a walking encyclopedia of facts. We’re depicted as being loners, outcasts, unpopular, constantly bullied and anti-social.

Both stereotypes are very damaging. Pretty much due to that most people will form an opinion on what autism and an autistic person is like, based on these stereotypes from the media.

The spectrum is actually more broader and varied, in how autism affects people and what we are like as people. What i hope to see one day, is for this to be portrayed more in films, books and on television.

In Fashion

Another annoying attitude is that, people read/hear that the rate of autistic diagnosis is on the increase, and this is because more people think they’re on the spectrum. That it’s some ‘in thing’, fashionable and ‘kool’.

The real reason the rate of diagnosis is on the up, is actually better awareness and detection of it. The varied ways it can display itself.

I’m not ashamed about being autistic, but i do find it challenging. Mostly due to the above mentioned reactions i and others have receive and do receive on a regular basis. If this could change, then perhaps life can get a little bit better for autistic people like myself.