I have type 2 and for about a year I’ve been able to keep the flare ups under control with Neurontin and Lyrica. I tried all other meds before finally getting some relief from these 2 meds. However, this past week has been the worst week of my life. I’ve been in constant and excruciating pain. About every 15 min I experience an attack that can last for an hour and nothing is helping…not even Percocet. I’ve never been in so much pain in my life. I can’t lay down, eat, or hardly talk. After talking to my neurologist she said that since we’ve tried all other meds the only thing she can do now is refer me to a pain specialist. So now I have absolutely nothing to help with this pain. I know if I go to the ER they’ll just give me a shot again that will knock me out and I’ve got to be awake to care for my son. All I can do is cry and if I didn’t have my son I’d seriously consider taking my life. Can someone please tell me you’ve been here before and please let me know there’s hope?
Hi Cara, sorry to hear you are in this state of suffering especially with a young child. I am a type 1 so not much help to you, but just wanted to check you know about the different groups on this website, see under Forums, there are a great number of groups for different issues, problems etc. there is one for type 2 sufferers. (Sort them alphabetically, on page 4). I hope you find some help there. My prayers are with you.
I’ve been there. I have trigeminal neuropathic pain and it has ripped a huge hole through my previously very happy life. I’ve had such bad pain that all I can do is cry and hold like 4 ice packs around my face. And I have 24/7 bad pain. All my doctors are at a loss, but I will not allow anyone to tell me that there’s nothing left to do. There is always something else to consider. I’ve been researching PRP therapy, anti inflammatory diet, cold laser therapy, to name a few. Because the most important thing is to maintain hope. And that means, for me, to keep trying things until something helps. I feel hopeless sometimes, too. But I feel as though I don’t have the option of being hopeless. I HAVE to carry on. It’s completely out if my control, so all I can do is keep rolling with the punches and praying for healing in whatever kind of form it may come in.
Liz, I am also SO sorry you are going through so much pain. I do understand I was hopeless last nov. I never thought a cream would save my life! Type in GALLIXA in the search bar. If you have any questions friend reguest me. Praying you find what helps you, dawn
Thank you, Liz and Duckie.
I have bilateral ATN, with both the shocking pains, and burning boring TN2. My right side was affected for close to ten years, while my left side was just a year. I had MVD on my right which resolved the shocks, but not the TN2 pain. According to my surgeon, this was most likely due to the length of time the nerve had been compressed. I had a peripheral nerve stimulator implanted 7 months after the MVDS, and I am very happy to say it controls my pain completely. I did have successful MVDS on the left side, with both the shocks and the burning boring pain resolved. I am now med free.
If I can answer any questions for you, I would be happy to.
Christine
Cara, there is always hope. You have a group of peers that you can suffer with here, and you can always come to us with your rants. However, until you find relief, you might want to consider seeing a mental practitioner. I think they are deeply underestimated in our situation. If you struggle to see the light in your life, that is exactly where they can help.
Many of us are in your situation. Somehow we do get through, and it is important for your son that you do. In the hardest times, if all else fails, make sure to have a list of distractions at the ready. Distraction is how I get through my days. The best ones are those you don't have to use your brain capacity to attend to, like movies, series, podcasts, or similar. My best distraction until it became a trigger for me, was always video games. May sound stupid that that is all I got, but it is the strategies that count. aAnd I am afraid to say, this forum makes me feel even more pain, due to the focus.
Othr elements of hope is the neurostimulator Christine just mentioned. I will be going to a pain clinic myself soon, and am definitely discussing that device with the neuro there. There is also a research programme out of Adelaide, South Australia, where they are currently training chronic pain patients brains to process pain signals differently, and they have reported successful case studies in high level journals.There is always hope!
You mentioned that you have tried many meds, have you tried amitriptyline or nortriptyline? Many of us with tn2 have found better relief with one of these in a combo.
I was on a forum about TN and I was offered a free sample of this cream, I was too warry to buy it after spending $1000 in the last year searching for anything that would ease this 24/7 deep pain. (I am also type 2, been in a constant state of pain or heavily drugged for 9 months.) There is a way to request a free sample. I have not gotten mine yet, but many people seem to have had positive responses. You are not alone, I have been were you are, and I know many people here have, we all have to keep fighting together. Give your little boy a hug for me. :)
Dawn Monarch said:
Liz, I am also SO sorry you are going through so much pain. I do understand I was hopeless last nov. I never thought a cream would save my life! Type in GALLIXA in the search bar. If you have any questions friend reguest me. Praying you find what helps you, dawn
I know when mine were like that lasting for what seemed like forever I took a small ice pack in a light rag and pushed as hard as I could on the nerve coming from my ear. It helped greatly and calmed it down a lot sooner. Try maybe it will help. It atleast numbed it too. Can you not have surgery? I take oxys and roxys and klonipne for my other back issues and it hardly took the pain away. I can’t imagine Percocet would do a ding dong thing. Prayers sweet girl
Yes I was going to ask that question too - are you not a surgery candidate for MVD? I would get into MVD surgery STAT in your situation if at all possible. You really sound a lot like how I was before my surgery. I had major electrocution coming for ten minutes at a time and yes the ER was utterly U.S.E.L.E.S.S. both in knowledge and ability to help me. I learned never to do that again. I was up to 1200mg of Tegretol plus Lyrica and not getting relief. Ten years of TN to the whole right side of my face including my eye by the time I said MERCY and got on the operating table. I am home now three weeks out of MVD surgery. I am totally numb on the right side of my head. My right eye is blurry. Hearing is fine. Mild to no pain managing well with Excedrine Migraine 1 tablet plus a muscle relaxer and I do that a few times a day. Stitches out last week looks fine. They did not put a screw cap over the hole they just sutured me up and said I would heal better that way and I agree. This numbness should get better with time but there are no guarantees. Every minute of the day I am thanking God and praying hard to never have another shock again. Right now I feel it was totally worth it. I am off all of the TN medications! I will be praying for you!! Nicole in VT
The treatment in the ER for TN is nothing short of barbaric. They can give you a shot in your hip and you can't feel yourself pushing out a baby. But they can't do the same for TN. It is total bullshit.
Geri said:
I know when mine were like that lasting for what seemed like forever I took a small ice pack in a light rag and pushed as hard as I could on the nerve coming from my ear. It helped greatly and calmed it down a lot sooner. Try maybe it will help. It atleast numbed it too. Can you not have surgery? I take oxys and roxys and klonipne for my other back issues and it hardly took the pain away. I can't imagine Percocet would do a ding dong thing. Prayers sweet girl
Cara,
I can only offer my sympathy. I am so sorry to hear that you are going through such pain. I can't imagine caring for a young child when hurting. I hide under the covers with the lights off myself when it gets really bad.
Don't give up, though. There's always something out there that might help. I agree with all who have suggested alternatives, including diet, psychotherapy (it saved my life, literally), and different meds.
I agree with whoever said that it is crazy that medicine has solutions for so many other conditions, but doctors are at a loss when meeting a TN patient.
Hang in there,
Rissmal
Hi Cara
So sorry to hear you are having such a terrible time.
I know the pain, I had TN for almost 15 years, sometimes the pain was typical type 1 , sometime more like typ 2.
I saw MANY neurologist, all of whom simply increased my meds (which never helped anyway) and all dissuaded me from pursuing surgery. Eventually the pain got so bad I decided to see a surgeon. I went to see Dr. Eskandar at Mass general
last November. I saw him on a Thursday , and I was in surgery on Saturday !!. I awoke after the surgery with No pain, no ill effects, nothing, I went home after two days, took two tylenol, and was back to work in four days. I know this is not typical of everyone's experience, but I had read so many discouraging reports, that I have to share my own miraculous experience just to show that there can be hope and relief. I would strongly advise you to consider this option, but if you do be sure to find a surgeon who does this a lot. Dr. Eskndar has performed hundreds of these ops and was 100% certain that he could cure me.
I sincerely hope you are able to find the relief that I am now enjoying.
Bob Mans field
Hi Cara, I believe I responded to you before but can't seem to find it so I will try to tell my story again and hope this helps. My TN started in 2004 and I had the balloon procedure done at Mayo Clinic in Florida. It only lasted one year and I was back on Tegretol. I regret that I didn't go in for the MVD procedure right after that. All of the reading I have done about TN indicates that 1. The more procedures you have prior to MVD the less likely the MVD will be successful and 2. TN always gets worse over time not better. My advice to anyone with TN is to just get on the Tegretol and go straight for MVD with the best neurosurgeon you can find. That said MVD surgeries can go a number of ways depending on factors such as these. I had the balloon procedure, it failed, I was on Tegretol up to 1200mg daily and after ten years it got so bad no medication was managing it. It was my right side. I came out of MVD surgery June 10 and like many others I have full paralysis in the right side its as if the whole right side of my head is numb including my eye, sinus, tongue and throat. Hearing is fine. Vision is a little blurry on right side. I have been told I am healing great and this paralysis will take several months to a year to get better. Oh yeah I also have vertigo, dizziness, nausea and I get tired very easy. All in all, the TN is gone, and I am getting some feeling in my lower face back now and I do not regret doing this at all, I just wish I would have done it sooner. Good luck to you!! Nicole in VT
Cara -
I am so very sorry for your pain and pray that you find relief. Have you tried any of the Triptans that are used for migraine relief? The only med that gets me through life is zomig (zomiltriptan) which for me aborts the excruciating, unmanageable pain for 18-36 hours.it works withun 20-40 minutes for me. I still have constant pain at a lower level each day and take Lyrica and Baclofen to try to manage it. I have had TN 2 for over 11 years and I have tried many, many things including a nerve stimulator trial that unfortunately did not work for me, but based on others it may be worth a try for you. The zomig has saved my life thus far. Wishing you better days. .