I’ve run the gamut. I’ve had 2 Failed MVD this year. I am 2 plus years in constant pain. I take gabapentin muscle relaxants and am on a fentanyl patch after trying pretty much everything. I still have little relief and the drs have no plan in place. My family drs only concern is to get me off of my pain patch as he figured the mvd should have cured me. He refused my request to put a referral into a pain management dr instead wants me to do suboxone therapy. I have no quality of life left. I do not function and my husband wants to throw me out but I have no friends or family to go to and couldn’t drive in this condition. I am just so sad and in pain and am tired of being a burden. I can barely eat and get most of my calories from ice-cream. In BC its legal for terminal patients to seek assisted suicide so why should I not be able to have the same right. There is no real support out there for people like me.
Suboxone therapy as a suggestion speaks volumes as to what is going on. I would encourage you to start it and stick with it. It is a way out of the pain you are experiencing. In any event a good PM doc would start there anyway as obviously the Patch is not helping
Hi Cangirl, I’m deeply sorry to hear of the pain and distress you are in but please do not give up hope. I’m guessing you may be in the US? Here in the UK we have people who will act as your advocate if you are too sick to manage on your own. They go to doctors and hospitals with you, write letters for you, apply for grants and aid - things like that. A spokesperson in other words. If you are in a lot of pain and on a lot of meds I’m sure you might be able to qualify for something similar there, perhaps from a charity even if the state doesn’t provide such help? I’m saying this because you sound as if you are severely depressed and you really need someone to fight your corner rather than struggle through this alone.
I cannot really comment on your relationship with your husband, but the one thing I will say is you should really leave (or throw him out!) if he considers you a burden. Although you may feel you have nowhere to go and it may be hard for you to find somewhere new (this is where an advocate could help), you would be a lot better off without the deadweight of someone who is not only not helping but actively dismissing you.
Lastly, I know where you are coming from with the ice cream, but that is a seriously bad idea. It will be damaging your teeth (something you don’t need with TN) making your body and hormones struggle, and the sugar in it will be seriously messing with your brain. Remember sugar is implicated in a staggering amount of neurological conditions, you really want to avoid it just to help your depression if nothing else. When my TN was at its worst, before I was on medication, I lived off Ready Brek. I’m pretty sure you have this in the US? If not, it’s ultra fine-milled porridge. You can get it unsweetened and while it’s not exactly the most nutritious thing on earth, it beats ice cream. You can also eat very soft mashed potato, drink protein smoothies and eat soup - all of which beat ice cream, health-wise.
Please try and find someone to help you through this and get rid of the people in your life who are dragging you down - and bin that ice cream! The very best of luck to you. X
Cangirl is on the west coast of Canada. Our system is somewhat different from yours, and very different from the US system of health care delivery.
Thank you for reaching out to her!
Seenie from ModSupport
Thanks, Seenie. Hopefully, you have a similar system to the patient advocacy service we have here and Cangirl can get someone on her team.
Hello! The patient advocate sounds like an amazing thing to have, but sadly, I don’t recall ever hearing of anything like that here. I could be wrong.
I sent Cangirl a private message with some resources local to her that I know of. Facial pain can be overwhelmingly difficult to deal with, as you no doubt know.
Best wishes, Wwte, for a happy holiday season!
And the same to you, Seenie. Christmas can be a very hard time for anyone ill or depressed or lonely; they sell us happy smiling people along with all the goodies and it can make your life feel as if it falls very far short. If Cangirl can just get through this time into Spring she can pull through. I know when I was in the depths of my TN I felt suicidal on a regular basis and I was far more supported (and meds worked for me), so I had far less cause, but I did make it through, so if you’re reading this Cangirl keep your chin up; things can turn around on a dime, honestly. I’m in remission currently and I never expected that to happen. X
Cangirl, you see, people do understand and care. It’s a difficult time of the year: let yourself reach out for as much help and support as you can find. You deserve that.
We’re thinking of you.
Hugs and more hugs.
Listen to the moderators.There is a way out of this hell.
Reach out to some of the resources they mention.
I have brought the same thing up with my doctor.
You are not alone.
Hi Cangirl.The following is a piece from Recumbent Riders international.It is about birthdays-but is good for many other times.I sit and read it and cry.
My son was crippled by a hit and run driver.many people on recumbent bikes have been in horrible accidents and are in terrible pain.I hope they don;t mind my pasting it to you.
Wherever you are, what ever you’re doing, we only hope you’re in the best possible health, state, and situation. We wish you all the success, happiness, and joy in life – for life’s too short, too cruel, and too difficult not to stop and simply take delight on the day of your birth.
Whether you realize it or not, you’ve touched the lives of many people during your lifetime so far. So just because you don’t hear from all of them today, please know you are a meaningful asset to many. In short, Thanxx for being WHO you are!
If your TN is not bilateral. And only on one side of face, The surgeon (with your prior permission) should have cut off the nerve at ganglion to give you permanent lasting relief. But this would also make your affected side of the face permanently NUMB. This is the lesser of the two evils. And with time you will get used to numbness. Discuss this with your surgeon rather than thinking of ending life.
Curious as to why you think suboxone therapy is going to help this woman out of the pain she is experiencing. And would appreciate your interpretations of what those “volumes” are.
Hi Cangirl - I am so sorry you are having such a difficult time. But do not give up! I had my second recurrence 9 months after my second MVD and have been in intractable pain for almost 8 years now. It has taken many, many trials of many different meds to finally find something that gives me enough pain relief without godawful side effects to have a life I felt was still worth living. But I found it. Don’t give up! The pain is never 100% gone, but it is low enough that I can ignore it most of the time. I also have breakthrough meds that work most of the time…and when they don’t I have turned to medical MJ for relief. It is especially hard when you don’t have a support system. I finally got rid of my alcoholic husband who was useless to me for support or understanding. It was difficult to make that decision, but things are actually better without him making me feel like a burden. I wish you strength and peace and hope you find someone to help you. Please keep us posted on how you are doing.
One thing to consider; if you have had two failed MVD’s, it is possible your TN is not related to vascular compression. Any condition that irritates that Trigeminal nerve can cause TN; this can be viruses, spinal damage, etc etc. You don’t need to accept the status quo. It is difficult and takes a tremendous amount of patience and persistence, but it can be very helpful to try other solutions. My wife is a 6-7 yr TN sufferer, but recently she has come increasingly to believe that hers is related to bacteria’s and viruses “settling” in the nerve. By getting tested for viruses and bacteria’s, then following procedures to reduce or eliminate them, she seems to be able to reduce TN symptoms greatly, or even put it into remission (she also had a failed MVD).
Regarding food, she is also incredibly disciplined. Sugar is a neurotoxin, I would really encourage you to stay away. For my wife, she noticed that eating some foods, even just putting them in her mouth, would cause a pain flare up. She has learned to immediately stop eating anything that causes pain. This means that she sometimes spends days eating very bland, plain food, but it makes an enormous difference.
She has also found that stress reduction helps enormously. This can be challenging. We cannot eliminate stressful events in our lives. She has had to learn to let go of fear and apprehension, breathe deep, and retreat to her ‘inner place’ when necessary.
One other thing; almost two months ago she tried scrambler therapy. This therapy has zero negative side effects (other than it can be costly, and disappointing if it is not effective for you). It can be pretty hit and miss for TN; for some folks it seems to work, for other not so much. For my wife it was very, very helpful.
Lastly, faith is very important to us. It has given us tremendous sense of peace and strength when we wondered how we would keep going on. Right now she is back in remission. We are grateful for it. We don’t know how long it will last, but when/if the pain comes back, we’ll do the same we always have, and keep looking for answers. If something doesn’t work, we look for something else. And some point we’ll find an answer or answers that have a lasting impact.
Cangirl, I’m worried about you. Please check in or just give us a wave.
My heart breaks for you as my Mother is a TN patient. Have you heard of/ tried Rhizotomy?
Hi Cangirl, I feel so sad for you and really hope you can find some relief. I am expecting to have an op in January, I’m told it is the fourth and most difficult of the 4 options and may not succeed. Nevertheless, after 8 years of severe, at times unbearable, pain, I am going for it. The meds I’ve been on offer only limited pain relief, I have to brace myself before I take the pills,because it is so painful. I realise this is all about me, but what I want to say is, please don’t give up. If the patient advocate service is not available, is there anyone else who can support you when you see the doctors. Sometimes they simply don’t appreciate just how horrendous the pain is. Please don’t give up.
I know, you are right, there is nothing out there that addresses the real issues of TN, its such a bloody tragic
disease and there isnt one thing that fixes everyone, it seems everyone finds there own niche. Its a matter of trying different things, but opiates are known NOT to help TN. I gave mum rescue remedy to take the tension out of her to prevent the pain from getting too much. Ask your Dr to try Epilim, that worked for Mum for 9 yrs then it stopped working so now she is on Tegretol. Your family might not understand that continuous pain wears you down and they have to be understanding of this disease and love you without conditions. Did your husband not understand his vows when they said, “In good times and bad?” I feel for you. Im the one thats been doing all the foot work for Mum, but get a Dr who understands TN and isnt just going through his prescription pad cause he doesnt know what the hell he is doing. All the best my darling,
I hope that you are in a safe place and just cocooning.I have found ice cream to be one of the few things that tastes OK.
Keep yourself going-you know what it takes.
If you have not tried anti-depressants -maybe that is another way to go.
My doctor threatened to cut me off the pain meds last week ,too.
His feeling is that opioids are not helpful for TN pain.My story is-then how come they help?
Maybe there are multi problems.
I know that we should all keep things simple-but I did have a dentist who could not find an actual gum problem.You tend to get categorized and then no one wants to look further.
Maybe time to go back to square one,consider some of the resources the moderators have sent you and go to a TN meeting (or make contact with) a group in your area.
Individual people can be very helpful.
Wishing you a peaceful holiday.
I don’t know how to upload here the page from the Face Pain book by Joanna Zakrzevska, who is an international expert on trigeminal neuralgia, which says that opioids DO HELP with TN type 2 pain! And to end up this argument once and forever.