The Rare Pain Chronicles

I think that’s a question anyone with BMS often asks themselves. It is either quietly in the back of their mind or it weighs heavily on their mind and penetrates their thoughts awfully. We never have an answer and we may never get one. 

I briefly went over this in my first post I think, about the cause and/or etiologies of this CRAP, but nobody really knows for sure. Hence, why I call it a true medical X-file.

I guess, I’ll briefly go over what I think might have caused mine. Again, this is me connecting obscure dots that to my brain might not be obscure. I have to remember that I am an individual and comparing myself to “everyone else that does this and doesn’t get this” doesn’t mean that my body is the same. We aren’t clones.

In February 2014 I had an endoscopy because I was having mild acid reflux. The test didn’t show anything remarkable. What made me absolutely afraid though was the anesthesia. This woman with big dull blue eyes sunken into her skull had a smile that seemed sincere saying “Sweet dreams” and I passed out. I felt like I experienced death.  I sound so dramatic, right? I probably am.

In June 2014 I had an emergency appendectomy. You can imagine the post traumatic stress I got with that. (Nothing was wrong with my appendix in the end, which I guess was good.)

Since then I had severe health anxiety. That in the past few months have gotten SO MUCH BETTER...YAY ME! I always thought I was dying. I always thought my bowels weren’t functioning properly. I thought my scars weren’t healing and I had adhesions and my organs were sticking together. I thought I had cancer. I’d stay up all night googling. I didn’t sleep. 

I basically thought I had everything to put it mildly.

That’s not including other events going on in my life, good and bad - equally as stressful both horrific and joyful.

That accumulates to March 2015 when my tongue started to tingle. The very tip of my tongue. Imagine if the VERY tip of your pinky finger, even just a little part of it fell asleep ever so slightly.  I fixated and obsessed.

Obsessed and fixated.

Fixated and obsessed.

Obsessed and fixated.

You get what I’m saying?

It just become worse.

By the summer of 2015 is when it went full blown. Super nova. 

Treatment and diagnosis didn’t begin until January 2016.

I’ll be honest, I don’t really have the time or energy to write the WHOLE story of my dark bullshit journey with this monster and I think that’s more appropriate in segments.

So for me I think my brain literally short circuited….I guess in the Trigeminal nerve into my tongue and lips.

The only other neurological cause I know of is Herpes Zoster Virus. There’s a lot of speculation on hormones and how much of a role they actually play.

The health anxiety side of me doesn’t want to admit or say it, but there seems to be some correlation with Parkinson’s and BMS. But it could be that people with Parkinson’s happen to get BMS. I don’t know. I’m not a scientist. I’m just a ghost.

I’m the first to admit I have poor sleep hygiene. I experienced it my entire life that I’m aware of...since my memories that I decided to recall formed.  I remember as a child being scared of the clock hanging on our bedroom wall and the tick-tock noise it would make. I would make up stories about where my skeleton would go if it made it to a different galaxy and what color my bones would be.

At the age of 8?

I’m weird.

Anyway… However, I do not like using that word insomniac.  Almost as much as I don’t like using the term migraine. However, in the right communities the terminologies are used appropriately -It’s fine.  In mainstream culture it’s used to talk about very fixable issues which are truly just tension headaches, or you can’t sleep because you were drinking coffee too late at night. You know, fixable issues.

While I have had  sleep issues throughout my childhood, teenage, early and now…creeping on just plain good old adult life, I know would say i have sleep anxiety.

Why?

MY FUCKING TONGUE.

For some reason, most people who have the type of BMS I have (and I’ll be straight with you there aren’t that many types. There’s questions you can submit if you care THAT much and I’d happily answer,) it just happens to get worse as the day progresses and especially at night. Mine truthfully is 24/7. I can feel it all the time, but once the sun goes down and the night progresses..it’s worse. Sorta like people with Alzheimer’s, when the sun goes down they become distraught and agitated. I guess that’s the best way I can compare it.

Going to sleep IS THE WORST. I mean, thank goodness I have medicine that makes the pain more tolerable…

Think about it though.

The transition from laying in bed to actual sleep is the worst if your pain is subdued by stimuli.

While I do sleep with the TV on and have my iPad and phone on (screens dimmed to oblivion,) it’s still…darkness in your own head and darkness in your own thoughts.

It’s a transition and it’s a dreadful one.

I know I can’t be the only person with it. Right? 

I think since I started having BMS I have learned to coped with it better, but I won’t deny that every night when it’s time to actually go to sleep I subconsciously try to avoid it.

Playing restaurant management games, puzzle games, Reddit, you name it.

However, what I have noticed is that the more sleep the more repair, the better I feel. I would say 7-8 hours is minimum needed to feel good. Well to function…I’d say 5 hours. I’ts 1:30ish AM right now and if you noticed that’s the time I end up writing on here. Hmm…maybe writing to avoid slumber.

So, I’m two days out of this flare. HOORAY! I think 48 hours is safe to say that, right? I don’t know what the “rules” are. I guess it boils down to what impacts your quality of life and how painful it is to be a flare. Ugh, I don’t like that word. Sounds gross.  Anyway...I think it’s important to not forget how bad a flare-up is. That shit sucks. For real. It’s easy to just tuck that vulgar vicious spawn of darkness into a box and cast it off into oblivion, but I think it’s important to somewhat remember it. A hint. A ...ugh, shall I say it. Should I? A TASTE. 

So that brings us to ..why. Well, because I feel I need to accept it will happen again. I need to be prepared. I know this time going forward what to do and what not to do. I guess I see it akin to going on a trip somewhere and packing what you might need just in case. You know, those extra shoes you NEVER use. That 5th pair of pants that you never even wear at while at  home that you bring. You know what I’m talking about, I don’t care how light of a packer you are. You’re guilty somehow!

Anyway, *cue the French accent* the tongue has been “behaving” as I like to call it. It’s had it’s moments today where it pissed me off, but I wandered off somewhere else or distracted myself. Distraction is key, really.*  There’s a catch-22 with that though.  It’s really annoying, borderline insulting (I’m sure others with invisible illnesses can relate,) when someone says how they feel you should deal with it. They know best right? Oh just chew gum! Take a walk Read a book A bubble bath then do a puzzle with fuzzy slippers!  Sorry. I’m really sorry. What am I? I don’t know - just someone who grew up fixated around fucking screens my entire life - computers, doing graphic design/art, film watching, film making, music, music programming, video games (I have my undergrad in Film & media arts)…you name it. I relax in different ways. My mind is distracted in different ways. CLEARLY, it’s programmed and wired in fucked up different ways. However, that isn’t to say I don’t love walking I am a 10k-holic (if that is a term??) and try my best to do at least 10k steps a day with my handy dandy fitbit by my side! That isn’t to say I don’t love the outdoors (I love hiking.) However, it’s not a shove a stick of diarrhea-inducing sorbitol-sugar-infested- --gum-in-my-mouth-walk-down-the yellow-brick-road type of pain that goes away. Nope. Here’s some advice: It’s sometimes better NOT to solicit suggestions, or advice…just be there. I think the BEST thing you could ever be, to me, and to many …is a person for someone to listen to. It’s more valuable than you know.

Ugh, I know people have good intentions. It’s just hard sometimes.

It’s hard because you’re trying to barely hang on, and you never get credit for the barely hanging on that you do.  Speaking of which, my eyelids are closing, it’s 1:30 AM and I need to get up sorta early. 

Okay, I feel like writing a little bit more about what’s going on and the timeline. I don’t know or think anyone will read it, but at least I know it will be forever in internet eternity.

October 17th is when this current flare started. There are certian variables that could have triggered it, but I can’t identify it completely.

During this time I was experiencing pain on the right side of my face which I was having prior to starting up the Topamax. I was taking 50mg just fine so I never increased the dosage to 100mg. I did decide to do just that on Thursday, the 20th. The Topamax didn’t really make a difference for my mouth, but it did help my facial pain. (Atypical migraine)

October 21st or so I decided to try Nortriptyline 10mg again. My doctor told me to take this as needed since last time I tried this it worked for a week. It was like a vacation from my own body. After that it stopped working completely. Therefore, I discontinued using it. He told me since it worked, even for a little bit of time, it’s worth trying to use if my tongue acts up. So, I gave it a shot.

First day was pretty good. Minimal pain. Second day as well. Into the third day and I’m getting pretty bad dry mouth. Each day the dry mouth gets worse. I tried everything. I just so happened to have my cleaning at the dentist and got wierd samples of stuff and it didn’t help, just made it worse.

October 26th I get two dosages of Valtrex for what looked like a cold sore, doctor wasn't sure. Who knows if it made my mouth hurt more or not.

Tonight, October 28th I decided to discontinue the Nortriptyline. I do believe it is helping me, but the side effects are counteracting it. I think by having such a dry mouth it’s irritating my tongue so bad it’s almost worse.

This is most likely since I’ve had this (March 2015) the worst flare I have EVER had.

I feel depressed. Like, legit depressed. I don’t feel like eating. I feel angry. I feel lost. I feel trapped. I feel like a prisoner. I can’t talk to anyone about this. I have three or four people I can rotate out to talk about this. It’s not like I can walk into a support group and hug a big group of people who can be helpful and understanding…no no no. This is an isolation pain. This shows you a lot about the world. A lot about who and what you can handle.

I just don’t know what other steps I can take. I think I need something stronger until this is over. By over, I mean to regular good old tongue pain not sharp knifes EVERY second with fire on the tips.

KLONOPIN. SOUND THE ALARMS. 

I’m not sure how the other communities react to medication, but there seems to be, in the small BMS community I know about, a very strong misconception about the drug Clonazepam - klonopin in the US.  In a previous post I wrote about that I take this medication.

It INFURIATES me to no other end when I tell people I take Klonopin that either A. I will get alzheimers  B. I will “become” addicted...lol. Become addicted. That just sounds wrong.

First off, let’s get the record straight.

I AM A CHRONIC PAIN PATIENT/SUFFERER. Yes, I have to admit that to myself. I don’t walk around waving a flag and use it as a surname, but yes. I am. When someone is a chronic (not short-term like a tooth ache or you sprained your ankle,) pain patient/sufferer they use medication to survive. Obviously, over time you learn other vices to cope - I for one use video games and crochet. Anyway we use it to you know, to be able to smile for real during the day and heal our nerves…to be able to function, above minimal expectations, if at all.

Anyway, the point I’m trying to make is I rather trade in a fake study about getting alzheimer’s from a benzodiazepine and fake addiction (as my doctor said you get “addicted” (DIFFERENT THAN DEPENDENT)  to klonopin if you enjoy your sleeping parties or have to come down from a high off of another drug, which I don’t do.) for a pain free life.

Do I enjoy being on medication for something I have absolutely no control over? Hell no. You just do what you have to do to survive. Survival is key. What else is there to say? If someone needed heart medication to prevent heart attacks, but there was a fake or poorly conducted study saying it may cause you to go senile, I guarantee you people wouldn’t ridicule you, at least the same way as people who are pain sufferers, even moreso the invisible kind like good ol’ BMS.

Anyway, an update on me.

There are a lot of illnesses, disorders, syndromes that are invisible. You walk down the street and don’t notice it. Fibromyalgia, Rheumatoid Arthritis, Lupus, back pain(that’s a generalized statement of many problems of the back,) …you know, I could go on and I’m sure I missed your ailment. However, you know what sucks? People seem to sympathize A LITTLE more with something that has a label. Something that has commercials for drugs or drug trials...that has a littler ribbon you can place on your car...

I am not belittling or saying your pain is less than mine. Never.

However, Burning Mouth Syndrome? Nada. Nothing. Zip. We have nothing. There are no drugs in development specifically for this. A lot of doctors think it is ALL in your head.  There are no fancy commercials or money, or trials (save for one scientist I know of that gets funding for her research and trials, but it is for a very specific type of BMS caused by the Herpes Zoster Virus) being poured into research for a cure. It’s just invisible. Nobody can relate to it. I’m sure you know at least someone or know someone that knows someone with what I mentioned above.

I’m allowed to bitch right?

You sound like a fucking idiot when and if you decide to bring it up to someone close to you or not close to you.

It becomes a test to see who you feel comfortable with, sorta. It also makes you all, but a bit more isolated in how you want to express yourself.

Hey, my tongue hurts. Just try saying that to people or yourself, it sounds awkward. My lips are on fire. AWKWARD.

So what is glossodynia/Burning Mouth Syndrome?*

I guess, that is a good place to start. My guess is that, you the reader, have no clue what it is. I sure as hell wouldn’t expect you to. If you do, I feel bad.  According to our good friend Google less than 20,000 cases are diagnosed each year in the United States.

Anyway, glossodynia is the fancy scientific term for what is better known as Burning Mouth Syndrome or BMS for short on the “streets.” I sorta think that term sounds like an STD so I’m trying to be a little bit more profesh here. You know what I mean? Anyway, I may refer to it as that sometimes or BMS interchangeably. However, how embarrassing and how unreal does BURNING MOUTH SYNDROME sound. It sounds like a made up disease or something you caught in Las Vegas.  Let me tell you my friends, it is anything but that.

So, back to the main topic at hand. What is this monster?

Essentially, the kind I have and I will only be focusing on is Primary 1. The other causes can be cured and are caused by either vitamin deficiencies, thrush, or other secondary causes. Primary causes are neurological and/or viral.  It truly cannot be explained. It’s an X-file. It’s a House episode with no ending or conclusion. It’s shelved and collects dust because it’s invisible and cannot be seen. Thankfully there are all but a few doctors (I can only name two off the top of my head in the US that I know whom are extremely passionate about helping us sufferers.) They understand and treat this syndrome/disease/fucked up thing. 

What does it feel like?

On both my tongue and lips at any given time it feels like: wasabi sauce all over, pop rocks, crab pinches, needlework, sandpaper, an electric eel rubbing its body in my mouth, fireworks….Eh, that’s the best I could come up with right now.

Why does mine suck more than others?

It doesn’t. I just feel more isolated because most people, in the literature that have this are either going through menopause or are post menopausal. Old n’crusty. I am 29. This started when I was 27. The highlight of my career blossoming. My life beginning to prosper. All crashed down because of this.

I plan to discuss in further posts how I personally treat it, my triggers, my day to day struggles and how I cope. I hope that it helps at least one person. Just one.

Welcome to my hell.