I have been thinking about the best way for me to write this. It’s a hard tale to tell. I get overly emotional just thinking about it. I know I will leave lots of details out. There is so much to the story. So much….
Warning: this tale is peppered with f-bombs and other bad language
What if…. What if Friday, August 29, 2014 would’ve been my last day of life? It came down to that. My projected death.
Last I wrote things were getting better. Much, much better. The neurologist started me on oxcarbazepin (Trileptal) and it squashed most of the TN pain. I was so incredibly grateful! For those of you who suffer with TN, you know how that is… in the midst of an attack, you begin to believe the pain will NEVER end. NEVER. It is the most unbearable and devastating feeling ever.
I was so relieved in fact, that I did no research on this medication. None. Research is something I have always done whenever a new treatment is proposed. But this time, I was so consumed with pain. I was so desperate for help I just blindly accepted what was given. Bad choice. Bad Bad Bad
So, getting better. My prescription was ordered at 2 pills per day… one in the morning and one at night. The script was filled for 30 days with 3 refills. When the pharmacy filled it, there were no instructions other than to take the medication as prescribed. The medication guide included with the script said pretty much the same thing. There were some side-effects listed which you find on just about every medication out there. Nausea, vomiting, diarrhea, constipation, weight loss, weight gain, drowsiness, restlessness… and the biggies indicating anaphylaxis. There are contraindications for this medication … other drugs and physical conditions it doesn’t play nice with. In my case, blood pressure medication.
One thing to note about this medication – it is an anti-convulsant and is similar to anti-depressants in that it takes 7-14 days to reach therapeutic levels in the system. What this means is that a person can have difficulties tolerating the medication but not know until the therapeutic level is reached.
And that is what happened to me.
- Day 1 on Trileptal was fantastic! No pain. None.
- Day 2 was good. My facial swelling was increasing but shit… that was nothing compared to the pain that was gone. I took lots of pictures of my face and inside my mouth. I have dentists in my family and I was sharing the photos with them. I was worried about an abscessed tooth. Of course, I didn’t have an abscess. But it would make sense with the increasing swelling.
- Day 3. Still no pain but the swelling was incredible. My lower gums had swollen over my lower teeth. My eye was swollen. My ear canal and right nostril were close to being swollen shut. One of the dentists called to check on me. He said he read that Trileptal caused swelling. Hm. I did a minimal search on the interwebs but didn’t find anything that really caught my eye.
- Day 4 same as 3 but now the swelling was invading more areas – my neck, sternum, shoulder. Swollen. And my legs. Fuck. My ankles were the same size as my knees and thighs. And painful. I went to work for 1/2 day. It felt good to get out of the house.
- Day 5 more of the same. I was sleeping at a 45 degree angle because so much swelling was making it difficult to lay flat. I spent lots of time sitting up in my recliner sleeping. No work. Just that 1/2 day kicked my ass.
- Day 6 more and more swelling. 1/2 my tongue was swollen. My lip was fat. The right nostril was shut as was the right ear canal.
- Day 7 ditto
- Day 8 (Monday) I woke up to shower and get ready for work. I couldn’t breathe. I was able to take little short, rapid breaths. I had asthma like stridor. I stood in the hot steaming shower for a bit and finally the stridor let up. I began coughing. And what I was coughing up scared the beejesus out of me! Pink frothy sputum. I stood there in shock watching the bloody stuff run down the shower drain thinking “Fuck. Now I have lung cancer on top of everything else.” I was so frightened I didn’t tell anyone. (I know, I know. Dumb of me) I managed to make it to work and as the day progressed, the breathing came easier. I was short of breath on exertion but I could fill 1/2 my lungs with air. *Throughout all of this my skin color never changed. I never felt dizzy or tingly.
- Day 9 (Tuesday) The breathlessness was much worse than Monday. If that’s possible. I was using my neck muscles to breathe. My neck veins were distended. I was unable to get any air into my lungs… at least that’s how it felt. I have a nebulizer at home and used it. The stridor lightened up just enough to get a little air. After an hour or so, the coughing started. Bloody stuff again. I was doing everything I could to justify the blood. I was doing what I could to rationalize and talk myself out of something much scarier than MS and TN.
I went to work. I figured I work at a hospital so that is the best place to be. I made it through the day. My breathing was manageable but worse than Monday. And still, I was too scared to say anything to anyone. Even Coach.
The swelling continued to increase. I had such a feeling of pressure and heaviness in my head, neck, and chest.
When I got home from work, I called my daughter. I told her what was happening and how scared I was. She made some phone calls. She called the doctor she works for. She called some LifeFlight friends.
And what we figured out scared the shit out of me.
All that swelling? Yes it was caused by the Trileptal. My blood pressure was off the charts – because of the contraindication and because of the fluid (swelling). The pink bloody sputum? PULMONARY EDEMA. The distended neck veins? CONGESTIVE HEART FAILURE. Fuckity Fuck. I was staring death in the face. The grim reaper was knocking.
I was going to die. Within a few short days. They estimated by Friday. I didn’t cry. I didn’t break down. And amazingly, neither did my daughter. We are both the type of people who take this type of information in a very logical way. We digest it, research it, and figure out how to fix it.
Because I wasn’t taking Trileptal for seizures, I was able to stop taking it immediately without the weaning process. Thank God. My last dose was that Tuesday morning. And lucky for me, Trileptal is metabolized and out of the system in 13 hours or less. So by this time it was just about gone from my body.
The next morning I went to work and immediately called my PCP. I told them what was happening. I was put on hold for more than 5 minutes. When they came back to the phone I was told the doctor had an available appointment – ON FRIDAY! I was in CHF with pulmonary edema and they couldn’t see me for 3 days? Bullshit!
I called a neurologist – a different one of course. After relaying my story, I was told to come right over. Her office is in the building right next door to my office so I was there in minutes.
She wanted to admit me. I said no. LOL I’m so hard-headed. I work at the hospital. If I worsened I said I would go straight to the ER. She listened to my heart & lungs and already some of the fluid was decreasing, simply by stopping the drug. My blood pressure was so high that there wasn’t much I could take for fear of causing a stroke.
I took diuretics that day and into the next morning. My blood pressure came down and stabilized, and I was given steroids. By Friday about 70% of the fluid was gone. And today, I have 0 swelling. My ankles have never been so slender ha!
The first neurologist who prescribed the Trileptal has been my doc for just over 2 years. He has my complete medical records. And still he prescribed a medication that was contraindicated. The medication is appropriate for stopping the nerve pain – BUT should only be taken for 3-4 days and then stopped. It should not be taken daily forever.
He almost killed me.
So today, how are things?
Much better. The right side of my face is numb with burning. Mostly my lower lip feels as if it’s on fire… and supremely chapped. But it’s not. And 25 pounds of fluid is gone.
The inside of my mouth is almost healed. No more swelling. My blood pressure is stabilized and I’m done with the steroids. I’m scared though – I am feeling twinges of pain in the nerve again. I’m so terribly afraid the TN is going to attack again. I keep praying it won’t. Not again. Not so soon. I’ve been dealing with this for a month now. It’s not done. Surely it can’t flare up again?
Of course it can.
The new treatment plan – when the pain starts I go straight to the emergency room. I will be admitted and the TN will be managed by IV medications. I will be closely monitored and made comfortable, if not pain free.
I will never accept treatment again without asking lots of questions and doing research. I’m beyond flabbergasted the pharmacy didn’t catch the contraindication. I’m mad as hell my doctor didn’t correctly prescribe and instruct me how to take the Trileptal. I suspect he didn’t even crack open my chart before telling his nurse to phone in the medication.
Life grand. It is to be lived and treasured. I have a new lease on it.