Due to having struggled with painful bouts of pain from trigeminal neuralgia, my brain has taken a path of even slight pain avoidance. I hate pain so much that I watch television most days for hours on end just to avoid feeling pain. I have been afflicted with TN for five years now and have had an MVD, and currently am on a pill cocktail that really makes me tired and unmotivated. I still feel pain. I cannot enjoy any activity without it, and never know what severity I will face for undertaking a normal day of out of the house activities. I’m so sick of this situation. My secret wish is that someone would come to my house and be my buddy all day long for days until I could overcome this laziness and avoidance of even slight pain. I’m physically trim (good gene pool) and smart (good gene pool). So sitting around is weird and driving me crazy. Another five years and I will be in the looney bin. Any serious suggestions for how to get out of a cycle of this type of behavior? By the way, I regularly see an excellent counselor, am on antidepressants, have some great hobbies (if I felt motivated to do them more often), and regularly see both my doctor and neurologist. Getting ready to try a nerve block on the back of my head to help with pain from the MVD operation which I had five years ago after the TN diagnosis. This is such a crazy way to live.
I want to know if any of these things have been tried or helped with pain:
http://www.livingwithtn.org/forum/topics/taking-a-poll-here-please-…
Do you need a puppy or kitty?
Im out of other ideas for the moment!
Oh… I had neuro give me low dose ritalin as needed for focus and energy!
Well first I totally understand your couch potatoness to try to get away from pain. For me I’d rather sleep then deal with the relentless pain any more. But sleeping my life away is not too good to do. I try to do some things such as reading, video games, doing so kind of craft. I’m home all day now a days and well between that and the damn pain I’ve got cabin fever big time. If I’m having a low pain day I’ll brave the out doors for abot and go do some gradening.
On the other hand my medications at this point make me into the sleep zombie at some points. It’s rather frustrating to my poor husband. Now I’m rambling. Anyhow; hope this helps, if not letting you know you’re not the only one.
I was never a tv watcher. After getting tn, it seems that and the computer is all I do. I can't say that I enjoy tv. Most of the stuff on is so stupid, but it is a diversion. I am restless so seldom get to see a whole show. I get up and vacuum, or some other type of work or cooking, then back to the tv because activity makes my pain worse. I am unmotivated to do anything or for that matter to care about much. Pain is always with me. Sleep is almost non existent. Acouple of hours a night and then 15 min mini naps the rest of time.
Oh, big time! It really helps to know I’m not alone.
Kari said:
Well first I totally understand your couch potatoness to try to get away from pain. For me I’d rather sleep then deal with the relentless pain any more. But sleeping my life away is not too good to do. I try to do some things such as reading, video games, doing so kind of craft. I’m home all day now a days and well between that and the damn pain I’ve got cabin fever big time. If I’m having a low pain day I’ll brave the out doors for abot and go do some gradening.
On the other hand my medications at this point make me into the sleep zombie at some points. It’s rather frustrating to my poor husband. Now I’m rambling. Anyhow; hope this helps, if not letting you know you’re not the only one.
I watch shows on Netflix or Amazon. I feel for you, because your pain is so relentless and it won’t let you sleep. Currently, I take gabapenton, topiramate, citalipram, lorazapam, in varying amounts as my pain changes. I can only tolerate small dosages of most drugs, but gabapenton and I mix well, so I take an extra one of those as needed. One drug, tramadol, the wicked one, works for me, but has awful side affects. I use that only for one day when I know I will need help with headache and pain in the back of my head. My mom used to use it to help her sleep. I get sick after using it; kind of like a hangover, only in some ways worse. Oh, yeah, and there is Zolpediem. I’m usually so drugged, that I fall asleep for good at night. Occassionally pain wakes me up. You have it a lot worse than me. I wish I could come over to your house just to give you a hug and sit with a cup of coffee or tea for a visit. Imagine it done, because in my heart, my wish is sincere.
kath jaco said:
I was never a tv watcher. After getting tn, it seems that and the computer is all I do. I can’t say that I enjoy tv. Most of the stuff on is so stupid, but it is a diversion. I am restless so seldom get to see a whole show. I get up and vacuum, or some other type of work or cooking, then back to the tv because activity makes my pain worse. I am unmotivated to do anything or for that matter to care about much. Pain is always with me. Sleep is almost non existent. Acouple of hours a night and then 15 min mini naps the rest of time.
I have two small dogs who provide endless comfort and entertainment. Seems they are attached at my hip. Went to your discussion/Poll and now wonder about Lidocaine for the back of my head. It might help. I’m going to ask my neurologist about it. Oh, and the ritalin - that too. Wouldn’t that be great! Only, not if I get pain as a result of the extra energy. I’m all out of tolerance for pain. If a nerve block causes unexpectantly, unavoidantly more permanent pain, then what is to be will be. I hope that doesn’t happen. It shouldn’t, because the doctors are taking great precautions to avoid that. I 100% trust my neurologist. He’s a top notch neurologist, and really has my best interests. He has proven this over and over since the beginning of my diagnosis.
Kc Dancer Kc said:
I want to know if any of these things have been tried or helped with pain:
http://www.livingwithtn.org/forum/topics/taking-a-poll-here-please-…
Do you need a puppy or kitty?
Im out of other ideas for the moment!
Oh… I had neuro give me low dose ritalin as needed for focus and energy!
Let us know how it goes!