I have been suffering for 14 years now. Though way more under control and on minimal meds I do wonder if I will ever not need them. I have whittled the cocktail down to low dose amitriptyline for about 6 years now. Iv had a review gp couldn’t really be bothered to discuss it and signed me up for another prescription.
I worry getting older. I am different now after all the years of treatments and what these meds may have done to my brain. I’m 48 now and perimenopausal and wondering if anyone else is at this stage?
Hi, your concern is valid. My story is long so I’ll try to reduce it. I got TN1 when I was 37. I’m 64 now. During that time, I had a radio frequency ablation that gave me 6 years of no pain then it came back. I did this procedure again however it did not work. I had two MVD’s that were not successful. I was taking carbamazepine at doses from 500mg per day to 1200mg per day. However, all those years of taking this medication I ended up with osteoporosis even though I have been a runner all of my life and lifted weights but not consistently. I also had a lot of brain fog and my word recall was terrible. I also had to add sea salt to my water to keep my sodium levels just under normal.
Last year I had an awful flair that I needed to go to the ER for an infusion. At that time, I was taking 1600mg and it did nothing for me. I needed to add 900mg of gabapentin to the mix. I was so wonky from the meds it effected my quality of life so I consulted three neurosurgeons for my options. Two said rhizotomies as I wasn’t a candidate for another surgery. One of them was the TN expert at Stanford. The last one, Dr. Mark Linskey at UC Irvine who is well known in the TN world of taking on difficult cases took me as a patient. I had a 2nd re-do in August and I am off all the meds and have no pain. My surgeon was trained by Dr. Petter Janetta who pioneered the MVD surgery.
I sufferd from TN1 all those years because of surgeons that were not qualified to do the surgery.
I wish you all the best and never give up. If you have questions, feel free to msg me.
Helen, I know its bad, we all do. But its not the end of the world. I wouldn’t be concerned about getting older with it. A lot more is known today than 20-30 years ago. As for myself ---- I’ll be brief as these stories can go on and on. I am 78. I got TN back in '99, 26 years ago. After going through multiple dentists, endodoniists, etc. an oral surgeon told me what it was. I took Tegretol and eventually moved here to Birmingham area. A neurosurgeon I was referred to recommended the GammaKnife (which I’d already been reading up on). I asked for him about MVD. He emphaticaly said No. He told me too often they’d go in (brain surgery) and find the blood vessel touching the T nerve and sometimes they found nothing. The GammaKnife was non-invasive. So, I agreed and did it. I went for 9 years with 0 pain. Then it came back ferociously 9 years later. I went back to him. He recommended the CyberKnife. I took it. I still had problems afterwards but eventually went to another neurologist. She got me weened off slowly of all the meds the prior neurologist had me on. I eventually got rid of all of them except I take two Lyricas a day to control the residual TN I have. I handle life very well now. Just two Lyricas/day. No strung out, no groggy days, nothing. Lots of people don’t care for those treatments. I can attest they both did wonders for me. It might be something you want to consider.
Helen,
I had the same concern a year ago. I was diagnosed with TN1 when I was 29 and I’m 61. I went to pain management forever and tried every medicine available. I ended up on pain killers, methadone and oxycodone and took them for a very long time. Last year, I realized that they really didn’t help the pain anymore, because the doses hadn’t been raised in years. I asked my doctor if I could wean myself off of them and he said I could, but I probably wouldn’t be able to. I did it very slowly and haven’t taken a pain killer in over a year. It was the best thing I ever did. The pain killers were definitely affecting my memory. Now I take Advil and it doesn’t help much, but neither did the pain killers, but at least I can think straight. I wish you luck figuring out what you’re going to do.
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Helen, there are so many days I think about this. I’ve only been going through this for just over a year (it feels like a decade)…every single day I have pain except for one whole day last month. At first, my PCP threw mainstream SSRI antidepressants at me though I’ve no history with depression and I did not take any prescriptions beside birth control before this mess. I was desperate enough to try different ones since ENT, dentists, eye docs, neurologists (also one neurosurgeon that informed me that I’m not eligible for any surgery for my type) no one was much help. The antidepressants gave me horrible insomnia and anxiety, then they prescribed benzos (which I had to take to sleep after the SSRI mess but off of them now) and pain meds (that I didn’t take). I finally started reading the stories on here and found out about a combination of low dose Nortriptyline and Gabapentin. This is what has made things manageable for me though I should be taking higher doses, I need to function for my job, family and lifestyle. It’s a hard balance to keep just enough meds on board to not be in mind numbing pain but the cost is to have to deal with some pain to have a functional life. I really hope that I won’t have to switch or increase over time . I know it’s not much help, but completely understand what you are going through! I will definitely share if I have any success with something new.
I was diagnosed with trigeminal neuralgia (TN) approximately 16 years ago at the age of 50.
Approximately 7 years ago, I decided to have microvascular decompression (MVD) surgery. Nothing was working anymore and I did not want to go on disability, but performing my stressful healthcare job was getting very difficult. I did a lot of research to find a center of excellence for cranial surgery. I chose Dr. Raymond Sekula, UPMC, Pittsburgh, PA. I traveled to PA from IL.
My MVD surgery was very successful. Approximately 10 weeks after surgery, I was pain and medication free and I still am today. My only regret was that I did not pursue surgery years earlier. The surgery gave me back my life. I am forever grateful to Dr. Sekula and his team.
I wish you well and hope you find the therapies, medications or procedures to assist you with TN.
Please Note: Dr. Raymond Sekula is now in New York at Columbia, Neurological Institute of New York.