I’m after 4.5 years of pain (no surgery option) !!! Just came back from 10 days at hospital.
24 Phanergan Injections for relax and one lidocaine block to Greater oracular nerve (I have trigger point there.) After that I had so many pain! The block did not work at all and just made me suffer more.
I already tried so many of our list.
I really don’t have any wish to live with all those pain.
Please encourage me.
Dalit (mrs)
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Oh Sweetie, hang in there please. This is my third attempt at writing this, trying to figure out what to tell you. We all have pain but it is different for all of us and yours sounds absolutely horribly horrible. What else I have noticed that many people on this site have suffered terribly and have found relief. No med combos seem to help any two people the same but some have found relief. Some have no pain at all, some have reduced pain or symptoms. Some havent found that right combo yet. You definitely seem to fit in that last category. You never know when it will happen for you. It may be next week, next month, or even next year but at some point it will happen. I understand the dispair of constant pain ruling your life. I am going to request med and pain killer changes at my next neuro appt. If your current mix isnt working then change it up. Just think of all the people on this site that have found relief from this terrible condition. Just hang in there and take care of you. Good things may be right around the corner.
Dalit, (Mrs) It may be that you will need to be medicated with a narcotic for a while, to break the pain cycle. There is a group here for people who take prescription opioids. A good many of the members are doing better now than when they first joined us. If you aren't seeing a pain management specialist, then I think it's time to find one.
It’s a tough road we must walk Mrs. Dalit, and I’m so very sorry to read of your struggle. Believe me when I say, I really do understand.
It’s difficult to keep trying new things to find the elusive relief we so desperately crave…and deserve.
But we must dig deep, to find the strength and resolve and truly believe something will help, it’s exhausting and such a struggle but we must.
I hope you will find rest in the coming days from your recent hospital stay to continue searching for something that works.
I agree with Red, perhaps pain management specialist or an urgent call to your neurologist to discuss your pain crisis and find /try something else!
I’m in a similar boat, it’s very difficult, but together one foot on front of the other and HOPE that we’ll both find something to make life more manageable and increase our quality of life!
Huge ((((( hugs ))))) and positive thoughts from me to you… Mimi
This journey we walk is not an easy one. I want you to know I care and that you are not alone. I will pray for you. We must cling to HOPE as Mimi has said. Hugs
After a year of having pain was diagnosed with TN. I'm on my second kind of medication. I rarely took Tylenol, aspirin, etc. The pills make me a zombie and I still have pain. It seems like I'm fighting evil with evil which causes more evil. Ugh. I'm a single mom and was in school and had almost completed my degree. In January I had to withdraw from class and not sure when I will return. Money is running out, constant pain, facial twitching and zaps and missing 5 front teeth. I'm a fighter and you are too. We will beat this evil pain! I've been advised not to have surgery because it wouldn't work and could make it worse. I sure don't need that. Hang in there, they will find a cure, I'm sure.
Mrs. DALIT,
Could marijuana help? I hope you are doing OK - I really feel for you and have had horrible pain to the point of wanting to end it too. Please go to your spiritual source whatever it might be or here. You might also try mind body pain blocking techniques, like EFT and hypnosis with only a qualified person who specializes in this area.
I have been where you are at. What kept me going through the dark days were my kids. I agree with what people are saying about pain medications. Often I find if I can break the pain cycle long enough to get some good rest, things do not seem as bleak.
i really do know how you feel when you say you don't want to live with all this pain. i've had this condition for about 6 yrs and for the lst 4.5 my pain has been been unrelenting/24-7.i agree with others, try opiods if you haven't done so already. sounds like you've tried almost everything. that's crazy 10 days at hospital and you're left with more pain. i'm sorry. it makes me mad that they didn't give you opiods for yr pain while you were in the hospital.
how i wish i had advice for you Dalit, for you and me alike. i feel like a freak a times because of the pain and what it does to me but also because i can't find anything that works. intractable pain - i understand that word intractable only too well.
please let us know how you're doing.
people get it here. i wish you all the best
Dear friends,
Thank u for your warm words and all the care and the hugs.
I am going every 2 weeks to my neurologist (he is pain management specialist) and he is really trying to help me find the right combo, he doesn’t like me having opioids and was trying take me off them (I use to take Oxicode sirop - 5mg every 3-4 hours, only by demand).
From last April I’m always in pain that became more and more refractory.
The problem is that even all the doctors at the hospital said I’m in a bad situation for a long long time (my TN). From one side they tried getting me off few medication but my body react like “addicted” so they stop after 2 pills. Unfortunately the block made me fill worst and together with my neurologist we ADD more medication. As we all know we can raise our med very slow and till we’ll find any relief we shall have horrible pains.
I can’t read a book because I can’t focus and I need to close one eye…
I fill If my upper teeth touching the lower I’m getting flash pain and the same with my tung. My right ear is painful and Everything is so sensitive.
Wish u all the best,
Dalit
Sorry for my mistakes
Fill - feel
Tung - tongue
My heart hurts for you. I am seeing a pain management specialist and a therapist. My husband is starting to break down because he feels so helpless. I take 900 mg a day of oxcarbazepine, 400 mg of Neurontin daily, Xanex 0.5 3times a day. I also use 20 mg of oxycodone 3 times a day during a relapse, which is now once a week. I also had a nerve block recently that provided relief for 2 days only. I think it adds extra pressure in the face. My face jumps now, my ear hurts and teeth ache. So the blocks are out now for me. It’s really a matter of finding the right mix of meds and the ability to change and accept when they don’t work. My symptoms are almost identical to yours, with the exception of complete numbness on the right side of my face and teeth from Gamma Knife. Best wishes.
I to am sorry to hear of your struggle with the severe pain...it is not an easy life, however there is an answer that just takes time to find. I too am still looking for the correct combination of meds to ease my pain. My MVD surgery was 95% effective, however it had some serious "complications"..........migraine strength headaches that are 24/7 and a 'mystery pain" where the titanium patch is behind my ear as well as sporadic pain along the incision. I am working closely with my neurologist and ENT doctor to find the answer and it has been 2 years. The doctor that did the surgery told me that this has never happened to him before and he sees no reason for my pain and wished me luck in finding relief.
Sometimes it is difficult to complete simple tasks -- but I do my best. I know that there is an answer and a combination of meds or a treatment that will eventually give me a little more relief than I get now -- we just have not found it. I pray for patience every morning -- I try to do something for someone else every day and focus on one thing at a time. I have been "crafting" -- working with beads to make jewelry as gifts and sea shells to make art and give as gifts also. These little things give me something to focus on, take my mind off the pain and let it wander -- I proudly call it my basket weaving because some of my meds make me a little "stupid in the head". But that's ok too.
My husband loves me for who I am and accepts that I am not who I use to be and cannot always do what I use to do as does the rest of my family and most of our friends.
I guess what I am trying to say -- is look for that tiny piece of joy each day and indulge in it........HUGS and feel better soon.
Please beg your doctor for lidocaine mouthwash
Makes pain lower
As soon as possible. : )