Scheduled tomorrow for TN ablation. This process has helped me get off Baclaphen and Carbamazapine. Still on Gabapentin. This is the 4th time I will be going in for the ‘needle’. Makes me extremely ill for a day but the relief it gives can be months. The actual extreme pain from the TN stops with this process but the process itself causes some weird sensations. It’s a blessing to not have to set a timer multiple times a day to make sure I don’t miss a dose of Gabapentin. The longest relief I’ve received has been 8 months. Shortest, 5 months.
Be well and smile often. (imagine!)
Redbekia
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Best of luck to you . Hope for a year or more !!!
omieke
Praying for you. No I can’t imagine smiling without pain. I go back in 2 weeks for decision on what to do. 6 months after gamma knife and very little relief. Repeat gamma knife, surgery, who knows?
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Thank you everyone for your well wishes. I made it through and today am experiencing blissful pain relief even in my arthritic hips so must still be blessed by pain meds from yesterday. Wish it would last forever.
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Redbekia, hope your ablation went well. When I read your post and you mentioned the needle I looked it up but I couldn’t find an answer to that procedure. I had a rhizotomy 2 years ago and it is a procedure with a needle. I was wondering if it’s the same procedure. Again, I hope your procedure went well. Be blessed. Gloria37
Hi Gloria. I get a glycerol injection into a pocket that the trigeminal nerve goes through. They call it a nerve ablation. The whole side of my face and part of my tongue becomes numb. A blessing. Lasts 4 to 8 months for me so far. This is my fourth time. I struggle with their anesthesia methods that make me horribly ill for 24 hours. This time they simply put me into deep sleep but when I came up I was in deep pain and it took them a bit to balance it. Once they got that under control I have been awesomely wonderful. Numb is so much better than electrocution over and over again. I pray that next time, since I know there will be one, they will have that post anesthesia pain under control also. It all seems to be a learning experience. I like the team and feel like they are really on my side.
Redbekia, thanks for clearing that up for me. I have not had a chance to chat with a lot of people with that procedure. It does sound like just The rhizotomy that I had in 2016 I have not had to repeat but I will definitely do that if the need arises. My procedure was done at John Hopkins Hospital in Maryland , by Dr Lim. I have a brain tumor that is inoperable, it pushes on the Trigeminal nerve. I hope yours will last beyond 8 months this time. Good luck. Let’s keep in touch. Gloria37
Hi Gloria,
How are you doing? Have you had success? A few days/weeks/months of pain reduced? What’s been happening in your life?
I’m sitting in a different spot for myself. I’m scheduled for a repeat injection in a few weeks (it takes months to get an appointment) but my pain (was extreme when I made the apt.) has mostly diminished. Do I do it or do I give my time up to someone who may really need it and put myself on the end of the line again and maybe tomorrow it will come back in extreme again? A lot of fear wrapped around giving up the appointment.
I’ve been using Energy Healing on my body and feel it is really helping. I guess I figured the pain feels like electrocution which is energy so maybe clearing energy blocks in my body could help. I found a book called “Heal your Body A - Z” by Louise L Hay. She wrote another one called “You Can Heal Yourself” or something like that. I used what I pulled out of that book related to the different symptoms I was experiencing and applied Energy EFT to it. I like to repeat this once a day. I’m not sure that it is exactly what is helping but it’s the only thing different I’m doing right now.
Sorry for such a long delay on response. I guess I tend to be a bit of a recluse with myself. Working on pulling out of that and hoping that by helping others I’ll help myself.
I hope to hear from you again.
Redbekia
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Dear Redbekia, I’m pleased to hear your pain has diminished and hate you have to make that decision. Perhaps by the time of your actual appointment you may not have to have second thoughts. So glad the reading you’re doing has given you some results. Thanks for the topics of the healing books. I will certainly look into them.
I am still on the 2 tegretol a day and when the need arises I take the third one. There are still some discomforts associated with the rhizotomy, facial etching and trouble with brushing my teeth. There are occasional zingers which can be uncomfortable but as long as the electric shocks are not there I can live with it. But I think at anytime they return, I will call John Hopkins for an appointment.
I hope by the time your appointment rolls around you’ll have the right answer. Sorry you have that dilemma. Let me know what happens. Good luck and God bless.
Gloria37
Well, I gave my spot up and did not schedule another. About 8 days ago, I started treating myself with homeopathic Hypericum Perf 30X. My face pain went completely away. When I had several small flairs a few days later, I took another dose and have been pain free since.
Redbekia
Redbekia, I was glad to hear of your recent success you had with the hypericum. That seems to be just what it’s described to do, shooting pain relief. What a wonder it is when we can find something to do just what we need. I will certainly keep this information handy for future use. From a person who knows what it’s like,I’m over joyed for you. We’ll keep in touch. And hopefully pain free. Gloria37
Keep us posted. Good luck.
Where do you get this procedure done?
Procedure has been done at Meriter Hospital in Madison WI.
Just want to tell you that I did some research into Homeopathic remedies and found one that is for “pain like electric shock” which is a perfect description for my pain. I found that Hypericum perforatum is used for that so tried it. My Trigeminal Neuralgia has been gone ever since. No painful procedures, no side effects, just pain free. It’s been a month now and it was inexpensive. ~$10.00 for 80 pellets. I used 3.
Where do you get this product?
I have atypical TN
Be aware that Hypericum is actually St. John’s Wort and St. John’s Wort is the herbal basis for Prozac.
Since herbal remedies and supplements are not regulated (at least in the USA and Canada) you may want to speak to your doctor about a trial of prozac, that way you’ll be assured of getting exactly the same dose every time.
Homeopathic medicine does not interfere with pharmaceuticals or react with them. The actual plant itself is so far removed from the actual remedies. The energy of the plant remains. It’s an interesting subject. Google it.
Oh, Karen7, I found it on Amazon. I don’t think I’m suppose to mention brand names here.
Also, it’s now 5-26 and my pain returned about 3 weeks ago so I got a good deal of extra time there with no pain. Tried Hyp. again and it hasn’t worked. Asked my Nturopathic Dr about that and he said it probably has been overpowered by the very powerful single dose of another remedy he had me take for a constitutional remedy. Remedies can be overpowered easily.
It may begin to work again in time.
I’m back on Gabapentin (grrrr…) I don’t like taking it but need it right now til I get thru my next treatment in 6 weeks or so, or til my homeopathic remedy works again. Sent request for more info to my ND. For now I’m just sitting back and doing what I can to control the pain. Maybe that is my issue here. Control. Anyone who does energy work might understand that. The electric shock I get from this neuralgia is certainly energetic. I’d love to get into a group of TN folks who do energy work.
Homeopathic remedies are an energetic and awesome way to recover/maintain your health in a completely safe and often immediately effective manner. It’s just one of those things I’ve discovered in my constant search for a better way to heal myself and not just medicate myself. I use it in many other places than just TN.
Relentless!
Be Well and Smile Often!Becky
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My coworker’s aunt tried " holistic doctor" for her knee pain. It worked. Something like diet change and mud bath…It is mysterious to me. It is on my list to explore sometime, not only for my TN , but also for my knees pain. I think at certain point, we need improve overall health, not just one part.
I have tried acupuncture for various reasons. Mostly it works. But for TN, mostly it does not work. Another my coworker has migraine. Acupuncture works for her. I had chiropractor multiple times. It provides a little help to my knee pain, but the massage from the chiropractor office did make me fell better.
When hipericum doesn’t work, try Chamomilia.
Hello Redbekia, It’s been a long time here, since I’ve been in the cite. Hope it finds you doing well. I was knocked out of communications somehow. I’ve reread your messages and I hope you’re in a good place with your pain now. It has been almost 6 years now since my rhyzotomy ,with little problems. I’ve been on the tegretol. But now the electric shocks are wanting to come back. I’ve had a couple of new Neurologist and several MRIs. My new neurologist wants to add Cymbalta to my tegretol. Since I’ve just started I don’t know how it will do. But I remember you told me you had a second rhyzotomy. And if this continues I will certainly go to John Hopkins to get another. At my age no one wants to risk a meneginoma operation on the brain stem.
I hope you are ok at this time. Take care, Gloria
Ps oh, have you ever hear of taking Cymbalta?