drugs

Dear Diary,

Sorry I didn’t write yesterday. I upped my Baclofen (I’m up to 50mg now; I can only go to 60) and in a desperate magical thinking kind of way I added Gabapentin. It only took me 2 weeks of this pain to cave into Gaba. I HATED it last summer. I swore it off. I wrote my future self a letter for the next time my TN came, telling myself to not give in and take it. But two nights ago I was mid-attack and even though Gaba wouldn’t have helped with it (it takes an hour to kick in) my brain was like, “You’ve never taken Gaba with Baclo , what if that’s the magic combo? You won’t know until you try it.” So I did. And I spent yesterday in a fog. I can’t say if it helped the pain, but any kind of mind-alteration is welcome, for the most part.

Today I am still in a fog but fighting it. Because it’s the weekend and because Matthew and I don’t really see each other Mon-Fri I wanted to do something normal with him so we agreed to drive to our old neighborhood on Lake Merritt and do some writing at Room 389, our favorite spot in Oakland. I drove, as I normally do, and as we got close an attack attacked. I was able to get us to a parking spot but couldn’t leave the car. I told him to go in and that I would join him when I could. I thought it might be a half and hour. It was over an hour. I just sat there in my car, trying to distract myself on my phone (NYT’s Spelling Bee puzzle is the best for this), and feeling grateful that I have no responsibilities. I can just sit in my car for an hour if I have to. This is a privilege that very few chronic pain sufferers have and I don’t take it for granted at all.

After an attack I’m always exhausted, even though I haven’t expended any physical energy. And I’m on drugs, so I don’t have anything smart to say right now.

I’m going to start writing a FAQ page so if you have any leave them here or write me at sarah at smallvictoriesdesign dot com.

psych

Dear Diary,

(The SPG block I tried yesterday didn’t work)

I’m going to be straight and blunt with you: I think about killing myself everyday. Every day I will have an attack that goes beyond incredibly painful and it simply becomes untenable to live. In those attacks I become physically paralyzed, like a stone version of myself, and tears stream out of my face. I couldn’t talk if I tried; I can barely breath. If you saw me you wouldn’t necessarily think that I was in a ton of pain. We associate extreme pain with lots of screaming and rocking back and forth and moaning; most of us have done those things at some point in our lives, and we’ve seen plenty of scenes on TV depicting this kind of explosive outbound energy. But this pain is so severe that it acts as a black hole. All my physical energy is sucked into this black hole and along with it every single reason I have for living except for my son, Zane.

I think about how I would do it in graphic detail, because I am a perfectionist and I wouldn’t want to not practice the steps in my mind, and I wouldn’t want to get it wrong and remain alive. I try to maintain a mantra of “This will end” to run along side the unconquerable thought “I should die.” I try.

So there are suicidal thoughts when I’m in pain and then there are the (different) ones when I’m not. Like this morning, I was meeting a wonderful LCSW about my psychiatric care options and 1/2 an hour into the appointment I thought, “Why are we doing this, pouring so much energy into saving me? This is all so burdensome, for everyone in my life, it would be better if I weren’t alive.” Now, I was there because I DO NOT WANT TO DIE. Two weeks ago I was euphoric, ecstatic, excited, and basically permanently high because my life is so great. I mean, my kid is awesome and no longer lives in my house, my husband is truly my best friend and we can get through anything together, my housing is secure and amazeballs, my cat is the handsomest cat that ever lived, my clients can’t wait to work with me again, and it is 72 degrees most days. I mean, nothing to complain about. I know I want to live. And yet.

So I was there, having got myself there without the suggestion from my medical doctors, because having had this condition for 11 years I know what’s coming. I can feel it coming already. Depression is creeping in and asking me to stay in my pajamas all day. And I don’t want to. I really fucking don’t want to. I want to live and I want to LIVE, like the euphoric, ecstatic, excited kind of living I was doing two weeks ago. I don’t even remember that person. There is only this and only now.

I had Googled the LCSWorker beforehand because her bio wasn’t available on Kaiser and all I learned was that her husband died a year ago of a rare cancer and that she has two teenagers. Oops. So I went in feeling tender about her. She was really great, very caring, straight to the point about what she needed from me in order to figure out what care she could offer me while giving me space to talk and cry. We decided I need:

1. a therapist and none are available until Dec. 2. Like most things Kaiser: how wonderful that so many services are available! How infuriating that most of them aren’t available when you need them to be! I could go out of network, and I might.

2. a psychiatrist because while an anti-depressant isn’t going to work during the worst attacks it could help in the in-between times when I’m feeling like a burden, and I had a successful experience on Prozac in the past.

3. to join the 8 week long Wellness and Meditation class that is specifically for chronic pain sufferers.

4. to join a chronic pain support group where I might meet other TN peeps

The most remarkable thing about the visit is how SEEN I felt, unlike with my medical doctors. Man, I wish Western Medicine could get its shit together and give doctors what they need to consider a person’s WHOLE being. I left feeling validated and reassured and good about myself. I’m being very proactive on the outset and kudos for me. As a bonus, the Psych Dept. is in a Julia Morgan designed building, easily the best looking building in the dozens of Kaiser buildings that dot Oakland.

Thanks Julia Morgan!

Amazingly I was in no pain when I left so I decided to go to Urban Ore because I pretty much want to go to Urban Ore every day. I have decided that anything that releases endorphins is good for me and thrift shopping definitely qualifies. As do pedicures and new puzzles, both of which I also indulged in. I am always worried about going out into public though. I once had an attack in a grocery store and it was all I could do to get out the front doors. I sat on a curb in front of the store and frozen like a sobbing statue. People didn’t know what to do and I couldn’t tell them. I’ve thought about having cards printed up that say, “I have a nerve condition and am experiencing a flare up. I know it is scary to see a person in pain and crying in public but I will be okay. I just need to sit here and let it end. Thank you for your concern.” Maybe I will do that.

So to reiterate: I am not suicidal but I do think about killing myself. I feel like there is a major difference between the two and I’m doing everything in my power to keep them different. I shared everything with Matthew tonight and we agreed that I should not die ;)

Love you, mean it.

xoS

oh what fun!

Dear Diary,

Today I went to a hospital in Richmond, CA for something called an SPG block. In 11 years of having TN I had never heard of this procedure, which is unsurprising given how long it took to get a diagnosis (4 years) and the many failures of doctors to adequately treat me (my first neurologist prescribed me, despite sobbing in his office while chronicling my 4 years of suffering, what I found out later was a pediatric amount of Gabapentin, the first drug we try when diagnosed with TN). It was like being in a hospital, not going to your doctor’s office, also unsurprising given that I was in a hospital.

I had to undress and have a wrist band ID and all that jazz. I was brought into a big room with a skinny table in the middle of it, surrounded by a futuristic looking x-ray scanner and 6 monitors. The doctor was very nice and explained everything very well and was unreasonably good looking. First he numbed my nostrils with a thick gel of Lidocaine and then he put a catheter up my nose, past the point where you think you should put anything up your nose, and it felt like when you get chlorine water up your nose, that sharp jolt of chemical-y pain close to your brain. Next he sent down a rush of liquid Lidocaine to flood my sphenopalatine ganglion nerves. It lasted a couple seconds and most of it went down my throat. And then I waited for 15 minutes, which is the worst part actually because your head is bent waaaaaay back, propped by a pillow to be angled as far back as possible. I was more worried about the chiropractic implications then the tube in my face!

The hope is that the Lidocaine will seep through the thin membrane that lives back there and coat the ganglion nerves, who have an awesome name, no? The doctor was emphatic about how imprecise the procedure is, and did it in both nostrils even though only the right side of my face has TN. The procedure is just hoping that the Lidocaine reaches them, and then it’s just hoping that it helps. It’s not the trigeminal nerve we’re anesthetizing (WHY CAN’T WE DO THAT?!) so the chances are 50/50 it works. Actually, I have no idea what the chances are. I am trying not to get my hopes up. If I have learned anything about this condition it is that today is today and only today and there is no predicting even the simplest thing about this clusterfuck of misery living in my face.

(My friends and I used to call it my “Lady Pain” because TN effects more women than men. I blame men somehow.)

I said I’d talk about medication, so here is what I know. You can’t prescribe pain killers for this condition, not really. It comes and goes. If you took a pill when an attack started it would kick in just as your nerves were naturally letting go. This, more than any other medication fact, is the source of the most frustration for me. I am incredulous that there is not immediate help when an attack starts. Incredulous I tell you! So the first line of drugs are things like Gabapentin which are actually epilepsy drugs. They tell your nerves to stop being so dumb and crazy and firing when they’re not supposed to. So you take it over the course of the day, not as needed. It’s like an anti-depressant in that you are building up it’s presence in your body and your body ideally chills out.

I never had much luck on it, though it’s been my main medication for the past 11 years. Once I figured out that I could take hella amounts of it I did and I just can’t say for sure it helped. I was certainly in pain for months on end but maybe I had less severe attacks less frequently than I would have? Who knows. What I do know is that last summer I was on it for so long that it started to effect my mental state and eventually, when I went off it, I lost my mind. I did a dumb thing, admittedly, and went off it cold turkey (which, oops, I read later you should never do). Withdrawal was no joke and I became a anxiety monster. Luckily we were in NH at the aframe and I just did jigsaw puzzles non-stop. No joke, I did 7 1000 piece puzzles in 11 days.

I tried some other medication but was allergic to it and here we are now, trying new things. As I write this, 5 hours after the procedure, I am pretty sure it hasn’t worked, but I also haven’t had a bad attack. My lower back molar feels like it is deeply infected and the surrounding tissue feels inflamed and angry. Ho hum.

explaining a condition no one has heard of and cannot see

Dear Diary,

It's kind of fascinating to be afflicted with a condition that renders you in some of the worst pain known to humankind when it's so rare and so physically invisible that you want to stick an icepick in your jaw just to make it real for people. When it's not being fascinating, it's a brutally lonely condition.

Which is not to say there isn't sympathy, there is, but I imagine that if I could sit in the presence of a TN sufferer I would feel seen in a way not possible with healthy people. Sadly, 11 years in, I’ve still not met anyone with TN. Before you ask, yes, I've done tons of research into online communities (I don't find them helpful) and meet ups (there are none). My neurologist assures me (terrible word) that she has plenty of patients. Our paths do not cross.

Last night was really really bad. I had an attack that lasted for over 30 minutes and here is the best I can do: have you ever be woken from sleep with an urgent charlie horse in your leg or foot, the kind that makes you sit straight up and gasp for breath? Take that feeling and pick one side of your face. Wrap it around your lower jaw bone, your cheekbone, and all the tendons around them. Turn it up to 12. Then imagine a frozen ice pick is running through your bottom back teeth while canker sores erupt along the edge of your tongue. Then put a pallet of bricks on your temple. It is so painful that you can’t move. Tears stream out of your eyes but you cannot move, you cannot vocalize, you cannot sit up straight or gasp. It is every torture scene in Game of Thrones happening all at once in your face.

I don’t know the artist but I found this here. Googling Trigeminal Neuralgia Pain Art is a trip!

My attacks can be mild (4-5 on the pain scale) to extreme, like last night, which was a 10, and I have them 5-6 times a day. Those of you who have given birth vaginally without medication might think you know great pain (7-8), and I don’t want to take that away from you, you know pain, but I have given birth to a 9.2 lb baby after 36 hours of brutal labor and can say unequivocally that I would rather do that every. single. day. than go through one of my worst TN attacks. I almost asked Matthew to take me to the ER last night but knew, somewhere in the deep recesses of the part of my brain that could still function through the pain, that the attack would be over by the time anyone saw me.

You are wondering, there must be medication? Stayed tuned! Short answer: nope.

damsel

Dear Diary,

Today I made an appointment with the Life Planning Department at Kaiser. I had been referred by my new neurologist after I mentioned my frequent suicidal thoughts that accompany my worst face attacks.

1. I appreciate this gesture. She was being realistic about this condition. It is not fatal or terminal as a condition in and of itself. It is fatal because it is so painful that a significant number of patients chose to kill themselves (most sites say around 26%). She wants to make sure my shit is in order in case “something happens”. Smart. Pragmatic. I like it. The fact that Kaiser has a department like this was not known to me, but I suppose a lot of people do know about it — terminal people. It’s like I’ve reached a new level of a video game: my primary care didn’t mention this department, I had to mention suicide to a specialist and voila, I unlocked a new level!

2. The fact that my primary and my neurologist did NOT mention the Psychiatric Department, a department covered by my insurance that doesn’t even need a referral, is BONKERS. Bonkers bonkers bonkers. It doesn’t take a medical genius to know that having a chronic illness can be depressing or to know that when a person is saying they are having suicidal thoughts they might need help with their thoughts. The idea that one’s mental health is not considered JUST AS IMPORTANT as one’s bodily health, as if they do not inhabit the same organism, is ludicrous and maddening. End rant.

Back to making this appointment. The nurse on the phone was very nice. The edge of her voice belied empathy and patience. She explained that they have Saturday appointments, they can have a nurse come to my home, my husband should be there. Oh wait what? I got off the phone and immediately burst into tears. I had been indignant at the absence of an offering for therapy, which I saw as a failure to see my condition as real and impactful, and now I was indignant that my condition was being treated as real and impactful. I felt that cognitive dissonance for a bit and then sorted it out: I am indignant that one route of acknowledging the reality of my condition was recommended to me and not the other and ultimately I am indignant about this fucking disorder. I don’t want to be playing this video game, I am not a damsel in distress.

PS - I made myself an appointment with a Psych intake nurse and we talk later today because, fuck suicide.

PPS - Just got off the phone, have an appointment for Friday morning. “Have your doctors told you about Kaiser’s Chronic Pain Program?” “No.” “Oh, well, I don’t know enough about it to set you on your way but you should ask them about it.” Eyeroll emoji. Mind blown emoji.

that day I paid a woman to throw rice on me

Dear Diary,

Those in chronic pain are well aware of this point, the point at which you find yourself doing and paying for things you never ever ever thought you would consider in your pain-free past. For some it's getting MRIs and taking big-pharma medication, for others it's acupuncture and herbs. For me, having tried both ends of that spectrum, it was paying a woman $250 to chant in Tibetan into rice grains and throw them on my prone body, which is so far down on the new-age end of the spectrum I didn't even know it existed.

(Let me acknowledge my privilege here: I have health insurance and $250 to pay women to throw rice at me in addition to the leg up I have being a white person receiving care within the western medicine complex. Pretty sure being a woman does not help me out though.)

When my TN pain first started (about 11 years ago) it was on the heels of a 6 hour sedated dental procedure which had been on the heels of a wisdom tooth extraction that was particularly gruesome. My hunch is that the novocaine injections of the second procedure re-injured the extraction site, but no one knows for sure. Dentists DO NOT LIKE it when I talk about it. Neurologists are agnostic as to the cause. All I knew was that I woke up out of my Ambien “waking sedation” coma and was immediately in indescribable pain that rendered me a sobbing mess at times and a paralyzed zombie at others. It lasted about 3 months and in that time I saw many types of dental specialists (6!) but X-rays and many many exams revealed nothing diagnosable. It took me 4 years to get a diagnosis and in that time I tried any and everything I could to find relief. At the time I just figured it was a rare and hard to diagnose condition and that all of my care providers did the best they could. I no longer feel that way. More on that later?

So, this point. The point at which you believe in witches, in crystals, in god (actually, I haven’t got there yet), in aromatherapy, in rice. I try not to get too upset about getting to this point, although I’m STILL pretty upset about paying a woman $250 to throw rice at me (if you couldn’t tell). I like to think of this point as the point in the pain when your brain is digging so hard for hope that it unlocks otherwise rigid and calcified hallways in your thinking, and unlocking rigid and calcified hallways in your thinking is always good. It is a searchlight, flooding your brain crevasses with a stark and focused beam of light, looking for hope, and it’s doing that because all else is failing. It is the brain’s last attempt at not giving up. And it does find hope in there, in the idea of magic. And yes, magic can be disappointing, like when rice doesn’t heal you, but it can also be connective and beautiful, like when you are touched by someone like Kenda at Awaken Chiropractic, who makes you feel better for 6 hours and best of all, SEEN. Like when you meet a woman like Elena at Five Seasons Health who’s needles open your body up to itself so that it can do the work of healing faster and stronger than without them. Like when you have massage work done on your body that you never knew could be done by someone like Haley at Strategic Bodywork and even though you haven’t gone back to him because it didn’t help with your TN your husband is a devotee and his body is better for it. These people are a part of my Superhero Team of Care and I am so glad I was open to finding them.

This point is a hard and confusing, disorienting time. Looking for magic is surreal; we spend most of our lives in a pretty solid science-driven reality. Spending the day hoping that rice will heal your nervous system is just….wild, really. But when you get to it, and you will if you are in chronic pain, it can be transcendent and life-changing, which is all we chronic pain-ers are looking for in the first place. So go get rice thrown at your body; maybe it’ll work. If it doesn’t there’s value in knowing that too!

PS Sorry if I offended you by implying that god is as real as the healing power of crystals, both of which I clearly do not believe in. You’re the one reading my diary ;)