I wrote some information on my medications wows. Side effects, etc.. A lot of that came and does come from the place of the reactions I get from new Doctor's or Pharmacists. I have heard the shout of "controlled substances" so many times. I feel like I'm the druggy sometimes. Now that I've been on the Percocet for three months along with clonazepam, it's gotten worse. It doesn't help that I've moved from a place where my N. and my Pharmacist knew me and my pain situation. Then I've moved twice in the Sacramento area and as I mentioned in an earlier letter, I finally saw a new N. and he doesn't prescribe pills. He does migraine Botox injections. I had decided I was not going to see him again. I am afraid of side affects. Also, I read Doctor's studies on the outcome for T.N. patience and the prognosis doesn't seem to prove any benefits. Having said all that, I now have decided I need to give it a chance. much of my Type II pain is scalp related. If it were to help then maybe I can at least let go of the Percocet. Like the fire fighter I never even had head aches before this. I road my bike, hiked, and was always on the go. So I hate being that person. The one taking "those" medications. I realize how irrational that may sound. I'm 60. I think like thirty. Always younger at heart. My favorite new band is one republic. Counting stars. I'm a Christian with a progressive personality. Artsy, usually fun. I am living with my Sister who thinks that if I could get rid of the "shingle/herpes" related virus I'd get well. So I've been taking drops of "natural" hydrogen peroxide. She keeps saying it might cure that. All my paper work from Doctor's say I have T.N. but my two Sisters will ask now and then, are you sure it's really that. I can only learn how to not care so much about what everyone might be thinking of me. I hate drugs. I eat veggies, proteins, smoothies with greek yogurt, omegas, etc... and have done so for many active years. Why can't I have some sympathy for what is such a life altering mystery. I get defensive. Which is why I have started coming here. I just don't want to try and explain why I have to go to bed at 7pm sometimes. If Doctors, family, strangers at the pharmacy counter matter so much then maybe I need to have some compassion for myself. Why would anyone choose to live like this. I need to get my work out done today and I haven't even made my bed. So I will go to new N. I'll get the shot. And I will let you all know how it went. Keep taking a half a pill here, two for sleep, and pray for a miracle. Need time to Breathe.....
(((( hugs )))), Mimi
Hey, just popped in here after 3 years of not logging in, and for some reason clicked on your post. Background on me before launching into advice for you.
I am 45, a Christian, have had trigeminal neuralgia, which turned into Trigeminal neuropathy after a botched MVD in 2007, and have the severe lancinating and crushing pain, and Mayo Clinic says I have Anesthesia Dolorosa. N says it's all different names for the same symptoms. Have had MVD, gamma, many diff meds to get to the ones that help a smidgen, and now have a deep brain simulator that has a gazillion different programs, and so I have to go back to Mayo every few months when I max out the programs. i believe we have hit on a program that has helped my lancinating, but I have cut back on my lyrica so that I can actually feel if the stim is working.
I used to take 900mg/day of Lyrica (600mg more than any studies, or recommended doses of anyone), but now have cut to 400mg/day, and take 20mg Baclofen 3x/day, lamotrigine (to allow me to turn up the stim higher and have fewer seizures, dilaudid as needed, which turns out to be 2-4mg/day if I have little symptoms, and up to 32mg in a 10 hour period if I'm desperate, which doesn't even put me to sleep or cut the pain. At that point, I just deal with it.
I have often wanted to just cut the pain out of my forehead and damn the consequences. The LYRICA is the drug that helps cut the crushing pain, but again, have to lower it in order to tell if the stim is working, so I have a lot more pain in the last year or so, than I had when taking the 900mg.
Have been to the 3-week Mayo Clinic Pain Rehab Clinic. I learned a few techniques that help, mostly distraction, but I tell people... "If you can stick your finger in a light socket, or get struck by lightning for 4 hours, and you can do deep breathing, meditation, if you can breathe at all, or watch a movie or call a friend, then you are some sort of miracle."
I used to be an avid cyclist, runner, Project Manager for a very busy marketing organization (my employer let me go when I first was diagnosed because suddenly my emails made no sense and I had direct contact with clients; they put me on long term disability), had a 120 IQ, and a great memory. Loved learning, reading, hanging with people, could get so much done in a day, etc.
So, that said, I had a very difficult time dealing with this new life because suddenly I could barely walk because I lose my balance so easily and get dizzy, so much that I have to use a cane, mostly so I don't fall, and/or look drunk all the time, I can't drive, or at least not very far or fast, can't turn my head quickly, can't walk in the dark or close my eyes without holding on to something (I just fall right over! It is funny, if you're not me), etc. No bike riding, walking the dog (tho i can now, with the cane), enjoying roller coasters (which I absolutely adore!), and another reason I can't drive far is because of the sleepiness factor.
I have fallen asleep just driving just over a mile away. If I hurt myself, that's one thing, but if I hurt someone else, I would never be able to forgive myself. I have to rely on friends and family to come pick me up before we can do anything together. Gets old, and annoying. AND, I have trouble sleeping at night sometimes (like right now), and then a lot of days, even if I get 10 hours of sleep at night, I sleep 4 hours in the day.
If I am not lying down, any time I sit down, or heck, pretty much all the time, I fall asleep over, and over, and over, for hours. Hubby finally said that I would get my work done faster if I just go lie down and sleep for 4 hours, and then do my tasks rather than wake up 75 times in 1 hour with my nose typing mmmmmmmmmmmmm on my emails. I have fallen asleep talking to people, making caramels over a hot stove at the boiling stage, painting a wall, of course, emails, tv, tatting, punchneedle, pretty much any time I sit down. It's so hard for me to even get on a computer anymore, as I know I'll be at it for hours, and getting pretty much nothing done. What I'm doing right now has been so rare, so I'm trying to go as fast as I can!!
I no longer have a memory to speak of, tho some strange memories from childhood will suddenly pop in, and I know my IQ has significantly dropped, but I have not tested myself.
I don't have any income from working, tho I do get long term disability, and I contributed all my life to my social security, so I do get SS disability income as well (60% of my former income, split btw Prudential, my company's LTD plan, and SSD). I enjoyed working, problem solving, creativity, etc.
However, over the years I have learned that I can mourn that person I was, but now I am no longer that person. I am a new person. Different. Not the one I cultivated, but the one that God has intended me to be. I am saved, and have a super strong relationship with Christ, which I am very grateful for, I have met some incredible people whom I never would have met if it hadn't been for my illness, whom I am incredibly grateful for, as well. I am blessed enough to be able to go to a top Neurologist in the US, according to US News and World Report... right in my neighborhood, I get to stay at home, and not have the stress of a daily commute, and work, pleasing ridiculous, frustrating clients, etc., and, best of all, I can now write music. I have been trying to write music since I was 7 years old. All my music sounded the same, so I gave up. I was always jealous of those who can write incredibly well, and wished it would be me. But nothing really came to me. I could write poetry that was decent, but didn't do much with it.
Side note: I grew up in the church as a kid, and went to a Christian college, but I never really knew what it meant to be one truly, until I became ill, and then lost my disability income for 1-1/2 years, and learned to truly trust God, for real. Not just saying it, and thinking I was doing that, but for once in my life, truly doing it, and feeling incredible relief, and knowing that there was not a thing I could do to change my situation in life other than pray and trust. One week later, my prayers were answered, and I received my disability, the company members' minds changed for no reason, and no explanation, and it was retroactive, so I received over $50K all at once. I was able to pay everyone back (family) all at once, and in total, for their generosity, and love.
Suddenly, when I trusted, the next day, all these songs, music and lyrics started coming to me, and they have not stopped. I have hundreds of tunes and 100+ ideas, along with about 40 full songs written in the last 3 years. No, nothing's published, but if God wants that to happen, it will. I was overjoyed.
Yes, things can get super frustrating, painful, annoying, distressing, stressful, sleep deprived, and sleep annoying, embarrassing, But, I have other things that I never had before, when I was the old me. I have learned to wave bye-bye to the old me that was able to do all those things I loved to do, and celebrate all the things I CAN do now.
I have learned patience, learned to have fewer fears and no worries, no fear of death, how to trust God, appreciate and gratitude for my caregivers, friends and family, how to live more in the moment, and use the time I have more wisely, such as loving friends and family. I can speak medical-ease, and love dealing with my docs and nurses, cultivating relationships with them that I treasure. I was not able to do these things when I was healthy.
I also have learned to not be embarrassed as much anymore. During the winter in Colorado, I have to wear a balaclava, and a shemaug covering half my face to block out the cold and wind. I look ridiculous, and scary when going into an establishment. I get stares of all kinds. I constantly am wobbly and look like I'm attempting balancing on a high wire, and failing miserably, I have noticeably lost hair because of my surgeries and medications, I look super drugged most of the time, with a saggy face and eyes half closed, I fall asleep doing all kinds of things in public, including walking, and fall over and run into things, and I lose contact with people sometimes because I sleep so much that when I'm not in horrible pain, and sleeping, I have to use the time to do groceries, clean, etc., Sometimes my stimulator causes me to have mini seizures where I cannot control my mouth properly, AND I cannot get the right words out, which is a cause of my stim and my meds, and I sound ridiculous, and look helpless at my husband, or at the clerk, or whoever, while everyone stares. I was always pretending around people that I wasn't falling asleep, and still do sometimes, thinking that hubby or someone didn't catch me falling asleep all the time. I refused to lie down and nap, because I didn't want to be judged as a lazy person (sound familiar?) by hubby. I felt such guilt at being so sleepy.
Finally, I had a frustrated talk about that to a friend on the phone saying all that, and hubby overheard (thank you, God!), and I knew he understood, so I lie down guilt free. He never said anything to me, it was me putting a guilt trip on myself, not him.
Once I accepted what was happening to myself, I learned to laugh at myself so much more. :) Cuz, it's hilarious sometimes, truly. I learned to not take it all so seriously, cuz I have enough trouble with the pain to get all upset about what people think of me anymore. If they judge me, that's their problem. I have documentation, and tests, and surgeries, and all that, to back me up. I don't need to explain myself to anyone if I don't want to. I do, sometimes, just to get rid of peoples' bewildered or fearful looks on their faces, but mostly just smile and laugh when that stuff happens to me.
It takes time to learn this, but Bible study, focusing on Jesus' words, and trusting in him, knowing that he has a plan for everything, really has changed my life. I never would have revealed any of my Christianity on a website before, let alone in person, but God has given me many opportunities to witness to people with TN, to encourage them, and help them, as it says in Hebrews.
Also, I have learned that Your Focus Determines Your Reality. If you keep your mind focused on your pain, your suffering, your problems, and trials, what people think of you, then you are going to suffer and constantly be thinking about that, and suffering from it.
But if you focus your mind on the good things you have, on love of family, or friends, or anything that you're grateful for, and most of all, on things above, on the end of all suffering, and being with Him forever and ever, your attitude, your outlook, your life, will change drastically. Drastically.
Hebrews really helped me. To know that since Jesus became a man and suffered in pain, and knows what it's like to do so, he can relate to me, and help me. We also learn that we are to do the same to others who are going through the same things, or similar things, as we have. That is why I love being able to do things like this. To help others figure out how to deal with TN, since I have learned so much. Not everyone listens right away, but if they had a younger sibling who didn't know about hot stoves, they would probably be negligent if they didn't warn them, teach them. The youngster might not listen, but at least they were instructed for later use. lol
In addition, Hebrews teaches us that we are to look forward to the time when there will be no pain and we are with Christ. How awesome it will be!!!!
Hebrews 12:1-2: 1 Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us. 2 We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith.[a] Because of the joy[b] awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honor beside God’s throne.
God bless you in your new life. The new you! I will pray for you. I can no longer keep my head off the computer keyboard, so I'd better go. God bless!!