Trigeminal Neuralgia Meds: Pain Gone, Life Gone Too? (Patient Story)

What's the worst thing people have said to you about this pain? >> Well, probably how your face can be so incredibly sore and painful that you can't even eat or talk, for example. Belittling is honestly maybe the very worst thing that comes out of people's mouths. Or then now that you're on sick leave, you can do all sorts of fun things.

When in reality, I'm basically just lying on the couch just trying to breathe. >> Today, my guest is Murvy Nepa. Murvy is an expert by experience in pain and an occupational health professional with over 15 years of experience with chronic pain conditions including trigeminal neuralgia. She knows pain from both the patients and the caregivers's perspective and does important work to ensure that pain is better understood.

Murvy, what was it like the first time you realized that this pain wasn't just ordinary pain? >> Back then, 12 years when I fell ill with this, I first thought I had an ear infection. So, I went to the doctor because my ear was sore. They didn't find anything.

I went home with some ibuprofen and just wondered what kind of ear ache this was. A few days passed and my throat started to hurt. My throat was so sore that I couldn't swallow properly anymore. I thought I'd probably caught strep throat as well.

And I went to the doctor again and there was nothing wrong with my throat. Then I also got a toothache and I went to the dentist and they didn't find anything there either. At that point for the first time I felt like this isn't normal. There's something strange about this.

What is this? Especially when all those pains were happening at once and they can't find anything wrong with me. Am I going crazy or what's going on? Nothing can be found.

That was probably the first time I realized that something was really wrong. How would you describe triminal neuralgia to people who have never experienced nerve pain? >> It's quite agonizing. I have I have many kinds of pain.

Uh it depends a bit on where the pain hits. Uh it's different. For example, in the ear I have this stabbing sensation and in the jaws there are these electric shocks than I might have on my scalp or the skin of my face like being pricricked with pins all the time. I've sometimes described it as actual torture, like someone's trying to forcibly rip your eye out of your head.

It's really quite horrific. Then I also have this feeling a bit like having a large burn on my face. A burning, stinging pain, which is a truly terrible feeling when you have to suffer through it month after month. >> Have you ever had feelings like there's a flowing sensation here on your face like trickling water or something similar?

>> Not like that, but it does change its location. For example, if I comb my hair, the stinging sensation might move along with wherever the comb has passed. Sometimes as I keep combing, I notice that the feeling shifts a little to follow the path of the comb. >> Is there a particular comparison or analogy that you think comes closest to expressing the truth in your view?

Or something similar that comes to mind describing the situation when the acute symptom is present? Well, it's so allconsuming and grueling that you really can't think of anything else but surviving the pain from one second to the next. When it lasts for months in the very worst cases, it's truly terrible. I not even being able to sleep.

>> What's the worst part? The pain itself or the fact that others don't understand? is definitely the pain that's the absolute worst because when those peak intense pains are hitting you really don't even think about whether anyone understands or not. You become so completely focused on the pain itself that your surroundings just no longer matter at that point.

>> How long did it take before you received a diagnosis for your symptoms after you first noticed them? >> Probably it took about 2 or 3 months for the final diagnosis to be made. During that time, I kept experiencing all the symptoms and I went back to the doctor one more time bringing up everything I was feeling. Fortunately, I happened to have a really good occupational health doctor, someone who was very attentive and thorough, who realized that it might actually be triinal neuralgia.

He was bold enough and confident enough to go ahead and start me on a trial medication specifically for that condition just to see if it would help. >> Well, what um were you prescribed epilepsy medication? The dosage was gradually increased and during that time I was also referred to the neurology clinic, a neurologist for head scans and everything. Confirming the diagnosis probably took about 2 or 3 months before all the tests and everything were done.

And by then I'd already gotten rid of some of the pain. So >> the epilepsy medication helped with the symptoms you were experiencing. >> Yes, it helps, but it takes time. If the medication is increased so slowly, there's a delay.

You just have to be persistent. If >> you think about taking that first pill, how long does it take before the medicine starts kicking in so that you notice it's having an effect on the symptoms? >> Probably about a month, maybe a little more. That's really about the minimum amount of time it takes for me to start noticing that the doses are actually large enough to start providing relief.

>> When you first went to the doctor with your symptoms, what were some of the things they suspected might be causing them? uh sus issues or something like that. What kind of guesses did they make? >> I feel like everyone was just as confused as I was.

They just kind of threw up their hands. They said they couldn't help because they couldn't find anything wrong. I really felt for those those poor souls at that point. Honestly, I didn't really know what it was and the doctors couldn't say what it was either.

So, I'm pretty sure the doctors were starting to wonder if my mental health was actually okay. like she's probably been googling symptoms again and now she's coming here to complain about them. But honestly, that's just how it is sometimes, >> right? So, they're basically playing a game of probabilities.

Whatever might be causing the symptom, they just have to find a diagnostic method to confirm it. And only after that can they reach a diagnosis. >> Yeah. And I guess you know for that occupational health doctor where he actually got the idea from maybe I was able to describe my symptoms to him in a way that made him realize it could be trigeminal neuralgia.

So what kind of emotions did it stir up when you finally got well actually >> at that point it was maybe a relief even though I knew from the start that uh a diagnosis like this is a lifelong one but it definitely brought more relief to know there was a reason for it that I wasn't crazy but then of course there was anxiety even panic at that stage when I didn't yet know where this would lead if I'd ever be able to compete again be painfree that First period of pain was probably the most distressing and frightening because you didn't know what was happening. >> Was there a fear of a serious illness? >> There certainly was. Yeah, that too.

But somehow I've always been the kind of person who just deals with things like, okay, this is how it is. We just have to live with it. Even if normal life might not be the same kind of normal life it's been up until now. >> What would you have hoped for from the health care system at an earlier stage?

probably perhaps >> empathy and a genuine understanding of the symptoms I was experiencing would have made a real difference. I felt quite alone with them and I really wish they had shown in some way that they were interested in my symptoms. Maybe just by asking how it felt for me or what it was actually like. That would have been the very least I would have expected even in those early stages when everything was still new and uncertain.

What kind of things cause pain episodes in your everyday life? >> Well, basically almost anything can cause it, but some clear examples are, for example, touching the skin on your face, wearing glasses, brushing your teeth, talking, eating, or drinking. Even simple everyday actions like these can sometimes trigger it. Swallowing in general, even just the simple act of swallowing can be difficult.

Washing your hair or combing your hair or really any kind of contact with your head or face can trigger discomfort. Then of course things like cold temperatures, a chilly breeze or strong wind. Those things can immediately make the symptoms much worse. You really should not go outside during a pain episode or at least not without some kind of protection like a scarf or a hat to shield yourself.

It is very important to take all of these things into account and be mindful of them in your daily life. >> How does warm water help in the acute phase? If you say wet your face or try to does it relieve the symptom? No.

Instead >> it causes more symptoms. So >> cold intensifies it and heat intensifies it in that >> face everything. Yes. And water if even water gets on your face you wash your face.

That also causes those burning sensations there. You can't go to the sauna either. >> Well, is the pain predictable or does it come like a bolt from the blue like now we're in trouble and here we go. Yeah.

>> Yeah. Uh it comes quite unpredictably. Uh basically you have to be on guard all the time with it. When there are pain episodes, I have these pain episodes where there's a lot of pain and then I have these pain-free periods.

But it can be triggered by just about anything. I don't even always know what triggers it. Last time it seemed to come from standing in the freezing cold. After that, the worst episodes are almost always triggered by things like brushing your teeth, washing your hair, drinking, and other everyday activities like that.

You really cannot predict it at all. You always have to be prepared for it to start at any time. >> How do your symptoms affect your sleep at night? Can you usually sleep normally when you have them or do they make it harder to rest?

>> Symptoms? No. When the painkillers haven't yet? I can't sleep either.

I just lie still and try to survive from one second to the next without moving. That's when there are the fewest stimuli of all kinds. But I can't sleep either. But I'm in a lucky position in the sense that when the pain starts to ease, the nighttime pains are the first to go.

Then I do sleep. The medications are tiring anyway. So then you do sleep well. >> If you think about and symptom days, how many days do you basically spend with symptoms in a month?

Is there an average >> when a pain episode is on? I mean, honestly, I have those pains all the time. I mean, I get those pain attacks and there might be anywhere from 50 to 100 of them in a single day. So >> it's quite constant recurring from one minute to the next.

But then I have those pain-free periods when the medication is high enough and I'm painfree. Even now I've gone 3 years without having any >> symptoms. >> But there might be a short stretch in between or then a longer stretch. You can't predict that either.

I always have to have medication on hand so I can always start the treatment. >> What kind of effects does that constant pain have on the mind? >> Well, it certainly does. During the very worst pain, well, there's a kind of panic.

There's really no way out of that pain. That pain is just the only thing you can even think about. Absolutely nothing else comes to mind. You're just surviving from one second to the next.

It certainly weighs on the mind, but you don't worry about tomorrow. It's just that moment getting through it. But yes, you could say it's panic at that time. I notice it myself, you know, when I'm painfree like this and then some twinge suddenly comes to my face for some reason.

Then immediately my heart starts pounding like is it starting now? You're kind of in a constant state of waiting with it. Always anticipating, always on edge. >> Does it bring along any anxiety, depression, or fear when you notice those >> first symptoms?

Well, fear especially about how long this will last again, how I'll endure it in the first place. And of course, all the everyday thoughts come to mind like how to cope again, who takes care of what, and how work gets done, and so on. >> Well, how do you handle the thought that this could be a long-term illness? >> As I said, I'm a bit of a straightforward, get it done person, so I can't help that it's come to me.

You just have to learn to live with it and be prepared. I don't dwell on it or worry. I've never been the kind of person to stay worrying about things like this. I move forward and build a different kind of new daily normal.

>> What have your experiences been with epilepsy medications? Have they been a total gamecher for you regarding the symptoms? Yes, >> I would gladly choose the medication over those pains. Although usually you almost always have to start it so late that the pains just explode on you before the medicine even begins to work.

But I'm ready to accept all the side effects. The price for them is that the pain finally goes away. I'm ready to suffer through that then. So, how exactly do those affect your daily life and ability to function?

>> Yeah, the pain probably affects my functioning the most, more than anything else, honestly. But then when I finally start to be painfree, which is a huge relief, my medication dose is so high that I end up experiencing a lot of side effects. And I'm really really tired all the time. I mean, I could honestly sleep around the clock just non-stop and I have these memory lapses where I forget words or lose my train of thought.

So it really does have a big impact on my daily life on everything I do and it makes things a lot harder than they should be on my daily life but I've still managed my professional work with a little support and also with those medications as long as I've been able to become painfree when >> all sorts of medications were tried. Was it mentally taxing when they kept changing and changing and changing? I >> I actually got lucky. I haven't had to change medications very much.

I actually found the right one right away, the right medication. Among fellow patients, there's a lot of that switching of meds and it's really, really, really tough and depressing to hear about it. When a medication is always tapered off and another is tried and again, you wait for the effect to kick in and so on. It's certainly very hard in the midst of all that pain to realize that now this is being taken away.

It's your only hope being taken away from you in a way you know in that sense I'm actually in a really lucky position because I was fortunate enough to find it right from the very first one I tried. It does make a difference honestly. >> How has the pain affected your relationship and family? >> It has certainly affected them a lot.

At that time I had primary school age children and a spouse. Looking back now I've thought that a spouse also ends up in quite a difficult spot. a wife suddenly turns into this crying lump in the corner of the sofa who just sleeps day after day and can't participate in any way in running the household. There must have been confusion and fear and everything on that side too about how to cope and where this is leading since no one knew at that point yet whether this was permanent or if it would get better and what this even is.

Which means there must have been a really desperate and helpless feeling just standing by, not really being able to do anything but just take over the daily routine. >> Well, did you ever feel even a little bit guilty about not always having enough energy? >> When I was in pain, I didn't. I just didn't have the strength to even think about that.

But then when it started to ease up and you were terribly tired and slept a lot, then it was this feeling that when you can't and don't have the energy to participate as much as usual in running the daily life, then a lot of it falls on the other person's responsibility. >> Did you ever experience in any context that you really had to prove that you were actually sick? >> I did. Yes, definitely.

Especially in the beginning when we didn't know what this was yet back then, I definitely had to And surely quite a few people really didn't believe me. But uh yeah, I've had to prove it and I don't know if everyone believes it even now. >> Well, as a sort of preliminary question on this topic, what in people's comments do you feel hurt the most? >> Well, exactly that.

Probably the downplaying of the pain I was experiencing. Like how can your face be so sore that you can't eat or that now you have time on your sick leave, a long sick leave to do all sorts of nice things and then you're lying on the sofa with your eyes closed trying to swallow occasionally. So those felt quite unreasonable. >> What kind of encounter in healthcare?

Perhaps one that really stuck in your mind. Can you recall? >> What particularly stuck in my mind was that clever occupational health doctor who figured out what this could be about. He was someone who truly listened and always asked thoughtful, detailed questions, showing that he genuinely wanted to know more and was sincerely interested in the matter at hand.

Even though it certainly was not an easy thing for him to deal with either, it has remained in my mind as a very good and memorable experience from that time. >> Well, what kind of encounter stuck in your mind as a very bad experience? Or what kind? >> The quick visits to the acute clinic.

those times when I come in to get medication or to ask for help with sick leave for my situation and I'm not really understood by the staff or the doctors there and then on the other hand there were also those people the health care professionals who honestly had absolutely no clue at all what I was talking about when I say that I have trigeminal neuralgia and I explain that I need these specific medications right now they don't even have a rough idea uh not even a basic understanding of what is being discussed or what my condition actually is at that stage when you are in terrible pain yourself, it honestly feels absolutely awful to have to state the diagnosis, tell them exactly what medication I need, what my dosage is, and how much sick leave I require. Those are not things I should be telling the doctor. It really should be the other way around. At that point, they could have taken a small time out and said, "Wait a moment.

I'll look into this matter. I don't have enough information about it. What would you like doctors, physios, and nurses to understand much better about this program? >> Probably that every patient's pain is likely different and it has its own features and only I know what it's like for me and I'd hope that would be heard and that they'd be interested in how it affects daily life and living.

That kind of encounter and compassion is in my opinion even more important than whether you can offer assistance or do anything else in that situation. I always know that there is really no help to be given. Not truly. You can't do anything but throw your hands up in resignation.

But that kind of cold, dismissive encounter doesn't help things move forward. >> How should a pain patient be met when there aren't any answers yet? If the diagnosis hasn't been confirmed, is that individual encounter the only way to tackle it best? >> It probably is a compassionate encounter and showing that you understand that they're in real pain and it affects many things.

There's not much else you can do. How >> has peer support affected your own ability to cope? >> A lot. Facebook peer groups have definitely been something I joined right when I got the diagnosis.

Actually, probably already at the stage when it was still a suspicion. From there, I've gotten the best tips, the best advice, the best instructions, and I've somehow stayed on top of things with the hospitals. Through the groups, no, you learn what to consider in your daily life, what it can affect, and how someone has managed to solve something. These are truly invaluable tips at that stage.

You simply do not get them from any physiotherapist or doctor or nurse in healthcare. >> Was it in your opinion more important to get advice or was it more important to be understood? >> To be understood because no one else can understand your pain in the same way as someone else who suffers from the same illness. >> Well, what kind of methods do you use for pain management besides medication?

Well, during the very worst pain, I honestly just try to stay as still and calm as possible without moving at all, if I can help it. But as for how I try to prevent having those pain episodes from happening in the first place, I really do my best to live as stress-free a life as I possibly can. Maybe try to avoid any unnecessary stress about anything at all. I try to do as many different things as possible that I really enjoy.

I do crafts, exercise, go to the cottage, and do other nice things. Somehow, it's important not to let your stress levels get too high because that too can trigger those situations. >> If you think about stress, generally speaking, and if it affects your sleep and through that poor sleep, you're more at risk of a new pain episode starting. >> Most likely, yes, indeed.

>> What would you like to say to someone who has just been diagnosed? Probably what you should do first is simply try to survive those very worst moments just one second at a time. Try not to worry too much about the future. Time will eventually tell what that means.

Normal is you shouldn't dwell on the old normal either because it might never come back. Look forward when the time is right, but seek help, peers. A psychologist can also help with other pain management methods besides medication. Seek peer support wherever you can find it.

Don't stay alone. >> Where did you originally first come across or find a peer support group or community? >> Facebook was where it was. There's a really good group there, a Facebook group where there's quite a lot of active discussion happening.

There are many patients at different stages who are sharing their experiences and helpful tips for others. People often take the time to pose questions, offer advice, and provide support to one another. It's a good channel. Yes.

>> Is there active discussion there? >> There's something every single day messages are flying around. >> What hope carried you through the worst phases? >> Probably during that first period of illness, there wasn't much hope because I didn't know what this would be.

But then when that first pain episode was over and you realized you'd found a medicine that helps, but it takes time. Then the next pain and when the episode finally came, I already knew that I had a way out. It just takes time. So I told myself I would fight through this month, maybe a bit more than a month, for the pain to ease and for the meds to be adjusted.

That was probably the hope, knowing I can always get back to being painfree. What do you never want anyone to say again to someone suffering from trigeminal neuralgia? >> How can you be in that much pain? No one can be in so much pain that they can't eat or speak.

>> What has changed in you as a result of this? Or what kind of values have been strengthened? >> Probably I think having a more relaxed attitude towards life and looking at the future with a bit more ease. It's just more relaxed that way.

Not so performanceoriented. I always feel like I have to anticipate when thinking about what if. I have to consider work situations and my daily life. Like what if a pain episode happens right now?

There always has to be a plan. >> If you could change one thing about the treatment of trigeminal neuralgia, what would it be? >> In my case, it went quite quickly in the end compared to the experiences of my peers. So I would wish for everyone that the diagnosis would be found faster and that this option would also be suspected as the cause of the pain.

For many, it takes years to find the cause. >> Why is that? >> I can't really say for sure why that is. Is the pain just so vague?

Or is it also that perhaps the disease simply isn't as well known there as it should be? After all, there really are not a huge number of us in the world, let alone in Finland. It's actually quite rare, after all, for someone like that to come to a doctor's office or even to come specifically to me. >> What was the factor for you then uh that triggered that first episode of pain?

Where did it all start from? >> I don't know. Nothing explanatory has been found. I've never found anything.

I have thought about what nothing happened then. Absolutely nothing at all happened at that time. It was simply the week before midsummer, right in the middle of June. Everything was completely ordinary, just normal, everyday life as usual.

Nothing out of the ordinary, nothing special. >> And then suddenly the symptoms just flared up. >> Yes, sure. >> Was there a stressful period going on in your life then?

>> Well, you know, it was probably not a particularly stressful period. It was just normal really, the same kind of everyday life.