I have had cancer & while i did recover, I’d go through that over & over again rather than deal with TN. it’s not even in the same ballpark. so don’t let ppl tell you otherwise. pls hang in there. we’re all with you
Hello Shelli,
Thank you for your frankness in expressing yourself. I'm new to this forum and sought out support after a sudden relapse yesterday of my TN.
What I appreciate about sites like this is not feeling isolated with your symptoms and having feedback from others in what they are doing to try to manage their symptoms as well as resources for learning and understanding it. I think it empowers one to cope.
The challenge with this illness, like many others, is that it is invisible, so people often have no idea what you are dealing with. Yesterday, as I struggled with the sudden pain in my face and sitting polarized with pressure on jaw, made my husband realize something was wrong. I took ibuprofen to dull it but it began building up again as I worked through my hour and a half massage appointment last night (I'm a massage therapist, too) so resigned myself to take a half a pill to ease it and heat pack my face so I could sleep.
I'm grateful my pain comes and goes...the first round I took meds for several months. Since then brief episodes.
My husband has dealt with chronic illness and has been on disability for several years so we've learned not to waste emotional energy on people who wish to draw their own conclusions about his situation and sadly that can sometimes include people close to us and sometimes, even doctors, who have their varied opinions.
So, again, we found additional resources from our online searching that gave us guidance. I hope you will continue to reach out for appropriate support where you can find it.
Hang in there!
Laura
Red, they are too cute, my Honey loves cats, she likes them better then dogs oddly enough.
Windy,Min, KC I hug her more then she wants some days.. The breed isn't the cuddle type but wouldn't trade her anything.
Tkal- Thank You! Most of my family never really had to deal with my bouts of depression. They figured I was just wanting to be alone, which is true but I know now that it isn't the best thing to do. Many days I agree that the meds put you in such a left field that the depression kinda slips away. It's just those days that you feel like the world is crashing down.... Today thankfully is a better day, I have some clearaty of what my agenda for the day is.
mrl- thank you!!!
Laura-How do you make it through the day?? Even on the meds I'm on, it took me all of those plus two percacets to make it through the last day that I worked. I'm due to go back tomorrow and I'm hoping that I will be able to make it through the week. I'm due to have a nerve block later this week to see if that will help...
Hugs to everyone!!!!! =-)
Shelli,
I think you are dealing with a more intense episode than I am...mine comes and goes. At present I can manage with low doses of Tegretol and ibuprofen. I have my own home clinic so I also have the luxury of spacing out appointments so I can rest if I need it.
I had to hibernate and lay low yesterday and did one appointment toward evening. Going back on meds always throws my system into a little tail spin but had trouble getting to sleep because of the pain, too. I choose not to stay on them when I'm doing better because I'm concerned they won't help after a while...it's been months since I"ve had an episode. This one is affecting my vision in the left eye...a little blurry and pain in my face and left ear. I took less medicine so I could drive to an out appointment this morning.
I hope the nerve block brings some relief.
You should also know that studies show that people with depression also feel pain more. On WebMD,
"Depression can make any kind of chronic pain worse." It's so true. Depression is such an organic disease that messes with all kinds of things in your brain. I have to take a vicodin just to have my teeth cleaned and that was before TN. My first attack, I thought it was a tooth infection but the more percocet I took only made me vomit, it didn't relieve the pain. DUH! It was TN and pain pills don't relieve the pain that much, for me, not at all. I think my endodontist thought I was drug seeking because I kept going back because of the pain. That's when I made an appt with a neurologist and she gave me Trileptil. I am not yet up to the right dosage but 90% of the pain is gone. I am in the early stages.
I might suggest Klonopin from your doc. It helps sleeping AND it's a drug used for TN, in conjunction with other TN meds. It can become habit forming but that's probably better than ending it all. I think it actually kept my TN in check for a year before I was actually diagnosed when I had my first attack. I used if for pelvic pain and have never had any pelvic pain after being on it.
Shelli,
As I read other replies, you see that most of us have been on the same page you have been on. I too, went through months of depression. I told my neurologist 'I am very depressed' he said, well, go see your primary care Dr. Whatever. What I do know, is if you can get on the right medication, your life will still be different, but better than what you are experiencing now. I hope you are reading, I hope you are seeing that their is hope. It's just a matter of really working with your Drs. to find what can work. First, try to get help for depression. Then continue to work on your pain management. I know how your body might feel, I have chronic fatique, tendonitis, hair falling out, blah blah blah. Please don't give up on yourself. It's doable.....
Hey Im new to this. I feel the same. Im ready to just cut my face off and show that nerve and its three branches that this is MY house and Im in charge. But, trying self surgery at home is generally discouraged by most folks. I dont know what to do either. If you come up with a good solution, lemme know. Some people I chatted with here are pretty understanding and helpful. Good Luck.