Yesterday I was struck by my first trigeminal neuralgia attack. It was awful. I'm only 19 years old. I'm on an anticonvulsant and some mild pain medicine which is so far helping somewhat but I'm still terrified that I'll trigger a big attack. The only time I can surely find relief is when I'm sitting still or sleeping. Sitting still gets boring so I find myself sleeping a lot. Any advice about if/when the medicine will really kick in or how to avoid triggers while still having a normal life? I'm feeling very pessimistic about my future. I also hope to get surgery asap but I know that's not a realistic expectation. If you've had surgery how soon could you schedule it upon discussing it with your doctor?
My first attack was in 2010 and I recently had another after a bout of TMJ - it struck so bad it brought me to my knees and crying in pain. I got zero sleep with it coming in waves. It felt like I was giving child birth in my face/head. (I did find some relief by sitting in a chair and lowering the top half of my body, including my head down at a 90* angle from the floor. It's like doing that takes away the pressure of the nerve against your face. Maybe you can give it a try and see if that works very temporarily) The very next day I went to the doctor and told them I needed Gabapentin to control the pain. The doctor prescribed it and I took it. 300mg @ 3 times.
I had to call my boss and let her know I wasn't coming to work because the pills were making me pass out. Your body needs to adjust to the meds(if you take Gabapentin or something else that knocks you out) - but all I needed was a day and a half to adjust. Now I can take pretty much double my dose without feeling tired.
Avoiding triggers is difficult...because we need to eat, sleep, brush our hair...the triggers for me is touching my head, or drinking hot/cold liquids and touching my face or the wind brushing over it. So, figure out what triggers it and try to change your routine so it doesn't affect you as much.
Surgery depends on if you know exactly how it's being caused.
Ty for sharing. Today has not been a good day, so I increased the Gabapentin which I do not like to do.
I don't like to up the dose either, but I'd rather feel like a zombie, then be in pain. :/
Stephanie said:
Ty for sharing. Today has not been a good day, so I increased the Gabapentin which I do not like to do.
I find that during an attack, I really can't sleep. I just lay in the bed with heat around my neck and an icepack on my face. I take Percocet and Imitrex when bad -- usually the two together are too much to get behind the wheel. When it finally breaks, it's like the huge relief and then I can sleep. Otherwise, I just lay there. It's freakin' miserable.
Stephanie said:
Ty for sharing. Today has not been a good day, so I increased the Gabapentin which I do not like to do.
Question - I doubled my dosage a couple weeks ago and have been taking a muscle relaxer before bed with them, but my body still wakes me up in the middle of the night in pain and I have to take more. Should I get up a few hours after I've taken them and take more to prevent myself from waking up in pain? I try to hold off till around 7-9am to take more.
I also found relief with sleep when I had my TN symptoms. It does take the meds a little time to work well and usually they do work well but not 100% (I frequently had breakthrough pain - not as intense though) and the side effects from the meds, especially as you up your dose, really affect the quality of life. That's my experience. I had MVD surgery 9 months after my first symptoms and would have done so sooner but I need to schedule the timing around my kids and family schedule, the help I needed after surgery, etc. I made the decision to have the surgery in about 6 months after extensive research on my part and many doctor visits/consultations. I'd recommend looking into MVD surgery since you are young and also going to a top-notch TN surgeon who has extensive experience with MVD. Dr. Ken Casey did my surgery (I had to travel out of state). It's been 2 years and 2 months since my surgery and I've been 100% pain free and med free since. I published my story a short time ago that you are welcome to read. Hopefully it will give you some good info or at least explain how I came to my surgery decision. Here it is . . . Trigeminal Neuralgia: How I Survived the Worse Pain Ever.