I was recently directed to a blog called Ending Tn by someone here asking that we read the entry TN is NOT the suicide disease. Having spent the past 6 weeks reading two books about the early days of the surgery department at Johns Hopkins Hospital, where the MVD surgery was pioneered, I agree the term suicide disease is a historical one, that as more medications, and surgical interventions now exist, is very dated, and as such should be taken in it's historical context. I also agree not everyone who gets this disease will become suicidal.
As one, who has struggled greatly with TN pain driven depression, I personally feel the article, and the responses to it have greatly devalued me, and what I have been through the past 18 1/2 years. In the winter of 2005, if it were not for my kids, I would have gone over the rail at a local bridge near where I live. I now have a safety plan in place. The understanding is when the breakthrough pain goes past one day, I have a standing order in my chart, and I can walk in to my primary care clinic, and get a pain shot. When that does not work, I am to call my neurosurgeon's office, and then proceed to the ER at OHSU, which is a leading TN hospital here in the US.
In closing, I just want to say, we all respond differently to the TN we are forced to deal with. Does having TN automatically mean one will attempt suicide? Of course not. What it does mean is some of us will struggle, and we need your support, not your judgments.
I read on Wikipedia which I like to use as a great source of information googling, it profiles TN as the worst pain known to man and is sometimes called the "suicide disease". Wikipedia is a great site to learn anatomy and every single nerve and muscle that contributes to so many chronic pain diseases. When I first googled TN, the first site I went to was Wikipedia and that is where I first read this description.
Red just sent me something that explains the history and also as a moderator is trying to get this label diminished. Who can correct Wikipedia??
I must agree that this is not The suicide disease. I care for my daughter who is very new to this horrid condition. But I have been disabled for 6 years. There are several orphan diseases/disorders which are call the suicide disease. My main disorder has the life quality of late stage cancer or renal failure. That could lend one to question the purpose of their existence.
I would venture to say that the disease of depression that is not tended to is a suicide disease.
Thank you for posting this comment.
Peace of soul,
I cannot imagine your life or pain but I like your pain collaboration. I am a Johns Hopkins patient and recently had MVD. My pain is slightly around at week 4 but off and on and the surgery left me without any problems that did not end in 2 weeks. We all hate the meds and can’t believe we have this. Tonight I read an 11 year old has joined us. So unfair but progress is being made at Hopkins and most patients are pain free after lifting the artery off their TN and getting some glycerine injections at surgery. I have burning and intermittent sharp - especially talking, walking outside, eating. I am trying mild heat with meditations Nd still taking Tegretol (200mg) a day total. I broke my back several years ago and luckily my TN never felt that bad. Prayers for you.
I encourage people to have a safety plan in place. I have been blessed that since I wrote my safety plan, I have walked into the primary care office twice, and have not been to the ER in over ten months. I have also shared the plan with my partner, and my best friend. That way if I am in too much pain, they know what to do. Thankfully that has not happened.
I am severely disabled from 13 plus failed surgeries to correct a deformity of my lumbar spine. I have so many injuries from surgery to nerves and failed on implants that caused more damage. Now this ATN and I am going back in for more surgery for my lumbar spine again, a fractured bone that stabilizes my lumbar to my sacrum, need metal hardware and screws again and I am doing it. I am 58, have been suffering from chronic pain since tmj at 23. I do have a plan to exit....I do, what I found out is this facial pain is more tolerable than not being able to sit, stand or walk. I will never get stuck in assisted living or a nursing home. Have a Will written to clearly state what you do not want to have. Some of you who suffer horribly from TN and have tried it all and gotten no where I would not know that pain as mine is not stabbing electric shock like, constant 24/7. I do not pass judgement on anyone's desire on how they wish to be treated when the end game just gets too difficult. Not sure what this safety plan is Saraiderin is commenting on.
I think it depends on you and who you are deep down, I say I have a plan but I am a fighter and fight on I will. I have 3 grands, 3, 2, and 1 and another on the way...very involved with them and now I want to see them grow up. I am also approaching the 4th quarter of my life and I still need to paint. I think if you dangle the things in your life that give it quality and you get to see it time to time it is worth the struggle. Sharon
The safety plan I have in place is agreements with my doctors on what we will do as a team if my TN pain gets out of control. I wrote another blog called, "Reasoning behind a TN safety plan." that explains it in detail.
Thank-you Granny for sharing. You bring up some great points. One being, that as bad as TN is, there worse things to deal with. I think of this often when I start to lose my perspective. Also, I agree, "Dangling things in front of us, is a great piece of advice! I one can find that one thing that helps them hold on, it is for the best. First it was my kids, now it is my grand daughter.
I also agree that one should not pass judgment on how another deals with their pain. That was a major complaint I had with how people were responding to the article. We do not walk in each other's shoes. Until you do, do not pass judgments. I firmly believe even though we have TN, each case is unique to the individual, and we all respond differently.
Again, thank-you for your post.
Saraiderin, if I could stay up on my legs and be able to sit to drive I would be going to see my grandkids at least 2 times a week and amazingly the ATN sometimes diminishes if I just change my surroundings! I sometimes think of my grands as little natural endorphens, and thank you for your insight too, you also have made some very good points. We are all individuals and one's tolerance to pain is different from anothers. I feel so much for someone who enters a discussion or opens a discussion of pure panic with the onset of this disease. I was that someone and now that I am here with all of you I must say what I feel will help another because I receive so much empathy from this support group. I adore Red who comes on as the moderator and sends us in the right direction or gives a correction so we are not muttering fools. When I read someone's cry for help and their entry is full of misspells and rambling I feel their pain. I do reach a point where I can no longer type too. I hope you have some pain free time to spend with your grand!! Sharon