I use to think so, but the last year and a half I have felt more often then not :I DO NOT WANT TO LIVE LIKE THIS ANYMORE! I have tried evevy medication possible, more then once and in different combinations over the last 20 years.To the point my longtime neurologists thinks it's useless to continue to take any of those meds. Phenobarbital has been a HONEST LIFESAVER FOR ME! When surgeries, alt.therapy and other things when finances allowed, have failed or for whatever reasons things had to stop and tn has progressively become worse. WHAT THEN? I know I need help, I just don't know what kind! I am drug seeking if I go to the ER,there are others in the medical profession, and I know a few family members and friends think it is a drug problem on top of tn also. Our community mental health says it's a pain problem so I don't meet their criteria for inpaitent help. I am scared to death of being stuck in a psych ward for even a few days and havingmy TN pain ignored! When the pain gets more then I am able to bare and the pain meds that I will no longer be receiveing after next week (I believe because I said these weren't working very well and would like to try something different) are gone. I am stretching them as far as possible my gp only gave me enough for a few days for next month instead of the whole script he's leaving the pratice before the 1st of the year and will not see me AT ALL!! HE KNOWS I WILL BE SICK ON TOP OF PAIN!! I can handle sick if need be but not with ALL THE PAIN! Not that would be any fun either but this pain and the drs. have me so afraid right now I have barely A glimmer of hope left. It does show up from time to time,especially when I have moments, sometimes even hours without pain. I REALLY DON'T WANT TO DIE,I AM SO SCARED FOR MYSELF RIGHT NOW IT IS MAKING ME PHYSICALLY SICK AND EMOTIONALLY SICK!! THIS IS JUST TOO MUCH!! AT SUCH A LOSS!!! n,
Dawn, my heart is weeeping for you. Please you must seek help. You don't say you are suicidal, but maybe someone you could chat to on one of the phonelines on the homepage could help. I appreciate there is a huge difference between not wanting to live in pain, and the wish to end your life. I am hoping that you feel the first.
Dawn, I have been where you are, so believe I have earned the right to say I understand, truly. My story had a bettter ending. A good neuro found the correct medicinal solution for me. I wish yours had,
I don't know where you live, but here in the UK we are able to find new GP's. Yours sounds a total waste of space. Whatever happened to do no harm?? You need to seek a new GP, explain your situation and throw yourself at his/her mercy. Whenever my pain is dire, I go to the GP and plead for help. They know I don't do this for minor ailments, so really do listen. I hope you can find such thoughtul care.
Take heart, we care. I wish I could do more for you Dawn. Please write and let me know how you are today. You mean a lot to us here.
Hi Dawn, Severe chronic pain is so devastating. It changes everything in our lives and the health care response to your life threatening disorder is a crime and I mean it. It is a violation your human rights. I have been an Aids Hospice Volunteer for over 17 years. I remember well the early days of the epidemic and the slow medical institutional response to the needs of the dying. Supporters of health rights for the sufferers took to the streets and shamed the medical world into action.
I suggest you think about contacting a local Reporter. and tell your story, I looked on the net and found The Battle Creek Enquirer. I
I don't know how to link up article to our site but here is the link to the staff directory http://archive.battlecreekenquirer.com/section/CUSTOMERSERVICE04/Staff-Directory.You can cut and paste, or go on the net, search for Battle Creek Inquirer. The home page will link you to the staff directory. The medical institutions have failed you and it is not your fault. Think about it. It is a difficult decision to go public . Most of the time, we just want to lead a private life.But I've thought and thought about what you can do and I suggest you think about this.
I have been out of the loop for a while but I try to take a look at the site and keep up.I have been traveling in Laos and now I am in Da Nang Viet Nam . I will try to to keep in touch daily to see how you are doing. You know there are thousands of TNers that are praying or what ever action we take into our spiritual worlds for you. We are hear for whatever you need.
I just noticed I misspelled "hear for here" in the above post. But when you think about it "hear" actually works.What is so wonderful and helps keep me sane (most of the time) Is that we share, we listen, we suggest. We care for each other. We HEAR each other. So, I don't think I'll change the spelling. I will keep hear, here.
Oh I see the link in blue,above.So click on it and check it out
Bye for now
I know you have tried everyyyything--- literally!
but
Has anyone ever given you fentyl patch?
Looking at that posting here today - gives me hope for the hopeless.
Keep posting!!!
I am so sorry that this part of your journey is proving so difficult. It's as if you're on the precipice of your journey that is a straight up hill climb. You are amazing in having managed for 20 years! It's been 13 years since I met the TN monster. I don't call it "my" TN, or "my" pain, etc. I see it as an intruder that needs to be managed—kept at arms' length. I believe one day that healing will come…for me, and for you and all those suffering with this painful problem.
There has to be a change in your care so that you're managing better. The pain specialist in town here is one that was trained under Jannetta. He understands how gamma knife 2x and MVD 1x has brought me to this place. Every 6-8 weeks he uses Botox to tend to the migraines and TN pain. It is logged as nerve destruction and migraine maintenance for our insurance purposes. As an anesthesiologist, he rotates 7 different meds to get the most relief possible for this anesthesia delorosa that's come due to the gamma knife. Lately I've added Hemp Oil from Dixie Botanicals to the mix. It contains CBDs, hardly any THC so there is no high involved—thank God—not interested in getting high, just interested in relief. It's help me cut down the 7 meds to 25% of what I used to take 90 days ago. 90 days is the magic bullet to see if a med works or not, this one is a keeper, but is expensive. It does allow me to work more, so I guess it's a trade off.
There is so much research and problem solvers on this particular problem right now that it is just a matter of time before we find our individual answer for our unique pain and body physiology. There is hope. We must realize we are warriors and set our minds and hearts to find our cure, our mixture of meds and treatments to bring relief so we can live for this moment.
I also get up on my elliptical or mini trampoline for 2 hours most days. Sometimes the gym gets a visit from me and there it's easy to use weights to bring my heart rate up to a nice steady burn that brings sweat and the lovely endorphins that follow. Without the exercise component I think it may feel hopeless. Sometimes when the workout begins and pain is so strong, I lie to myself and see if I can get through 20 minutes…just 20 minutes and the endorphins begin to cascade through my mind and the pain is lifted a little. I keep a book on the built in shelf on the machine and read, which takes a lot of mind power and helps me forget the pain from the exercising! Sounds goofy, right? But the mind can only concentrate on one thing at a time, so if reading is in the forefront, pain MUST take the back seat. I've been doing this for about a year now and it's a saving grace.
Speaking of grace…earlier today when the pain spiked for a time, my mind went to the basic idea of just having the mercy and grace for the moment. I needn't worry about more than just this very moment, and maybe a few minutes from now, but in thinking this way, kind of like one day at a time thinking, it's helpful to see the possibility of success. I incorporated very deep breathing for a time, put a heating pad on my face, and relaxed to allow my mind and body to ride the wave of pain until the nerve decided to rest again. Deep breathing apparently opens up the lungs so much that the air gets down to the bottom of the lungs where hormones that cause relaxation are released. It's a practice that is a keeper!
My heart goes out to you, and my prayers are surrounding you right now. I pray for angels to minister to you and that you'll rest like a baby this week. I hope you'll interview new docs, and find one in the area that WILL meet your needs adequately. It is your right to have relief from this monster. Do you have a family member or a friend that can help put your timeline down in writing so that you can be clear with the new doc on where you are currently in your care, how you're depleted from the pain, and how you need a plan to help you find relief?
Remember that we are here, and that we "hear" you as SF Bill said so well :-)
Please message me if you'd like, and please keep posting.
Take Care, Sweetie!
What is one thing that you can hold on to? I do not mean this in a literal sense. I too have been where you are at. For me, it was about hanging on for my kids. For another person it was their dogs. There are pain psychologists, who work with chronic pain patients. I know a lot of TN patients swear by them.
chronic pain is so debilitating. we all understand that here. i am sorry you feel so done in. please keep looking for the right doc. we all need you to feel better. hugs
A pain clinic or specialty doctor should be able to help you.Have you looked at the bilateral stim?Hang in there,you will find relief.
Dawn,
You said you did not want to take those meds because they were not working very well but sometimes if not very well is the best you can get at the present moment....take it!! It is better than not working at all....I have been at your point and it is now that you need to find any tiny thing that will keep you going. Anything positive will do to keep you going. Not very well is positvely better than not at all. I am sorry to say that but it is a positive thing. You have done so well with hanging in there....20 years is a long time!! You can do this...You can keep going...You are stronger than this and you have people out here that care about you.
You can get through this!
I am newly diagnosed, and have been feeling this sense of desperation as well. I am scared for what is to come. I can't imagine living with this for so long. As a person who actually tried to commit suicide in my youth, I truly understand where you are coming from. It does not feel fair. All I can say is that I am happy I didn't succeed, though am facing the same pain challenges you are. I wish there were easy answers, but know that you are cared about. I will keep you in my thoughts
Dawn,
i've been thinking about you. i know the desperation you describe. like you, i've tried surgeries, every medication, alternative therapies...you name it.
i hope you are ok. please let us know. you have many friends here. if you ever need to talk please let me know.
be well.
This makes me cry reading this I completely understand how hopeless this disease is. But you have to hang in there and believe there is a answer somehow. Have you tried traveling to one of the specialized Trigeminal Neuralgia doctors that everyone mentions on this website? Ken Casey or Peter Janetta They have both wrote books on this disease Maybe thats worth a shot if you feel at your ends.
jstagrl29 said:
This makes me cry reading this I completely understand how hopeless this disease is. But you have to hang in there and believe there is a answer somehow. Have you tried traveling to one of the specialized Trigeminal Neuralgia doctors that everyone mentions on this website? Ken Casey or Peter Janetta They have both wrote books on this disease Maybe thats worth a shot if you feel at your ends.