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.
2 Likes
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.
1 Like
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.
2 Likes
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.
1 Like
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.
1 Like
I always recommend speaking with your physician when recommending anything related to medicine, but I’m pretty sure that most meds that are prescribed for TN can be stopped (some may need to be titrated down versus stopping immediately) without any problem other than that your symptoms may return. It isn’t like an antibiotic where stopping treatment mid-course will likely only cause whatever the antibiotic was prescribed to treat to come back stronger and more resistant to treatment. Early on my in TN journey, my doctor basically told me I could wean myself off meds any time I wanted to see if I still needed them. I did have a few weeks here and there without symptoms while not taking anything, but inevitably my symptoms returned and so I resumed taking Gabapentin. I’d like to stop taking it, but if anything I’ve had to increase my dose over the past decade when it becomes clear that the dosage isn’t sufficiently eliminating my pain. I consider myself fortunate that I’ve responded well to Gabapentin and still, nearly a decade after being diagnosed, I only need 300 mg per day to make me virtually TN pain free.
1 Like
Goodness me. Thank you for taking the time to respond. I am so glad that the 2nd procedure worked and I hope this is still the case. I have had 2 recent flairs though settling again now. All very difficult to manage. Sending love xxx
Hi jimmy thank you for your response. That sounds quite successful. I haven’t taken lyricia for years but have just had amitriptyline increased due to a few recent flairs ups. Sending love xxx
1 Like
Hi Karen. My atypical face pain started with Bell’s palsy 15 years ago. Changes in season make it worse and extreme temperatures. Iv only been paralysed once but the face pain came as I now realise I started to heal. I don’t think my facial nerves ever wired back up correctly and this has a knock on effect to the pain nerve. It’s a complex case. It’s a day at a time xxx
It’s horrible isn’t it. All these years on and I still don’t deal with the flair ups well. And it takes days to recover once it’s past. Sending love xxx
Hi Nancy. I’m in the UK! My pain has originated from full right side paralysis from Bells palsy. The pain is a-typical and because it’s not linked to a compressed pain nerve but more to do with a faulty rewrite whilst recovering all those years ago solutions are sparse. I have a new referral to the pain clinic after a discussion with my doctor yesterday. Sending love xxx
Hi Jeff thats lucky. Yes I weaned myself off a huge cocktail 10 years ago. My doctor has increased my amitriptyline yesterday I am not keen to try any more anti seizure meds to be honest it was a dreadful time when I took them. Sending u love xxx
Helen, I just re-read your post. Worry and stress is in my opinion an activator. I don’t know if there is any scientific evidence of that, but for me I noticed flareups would happen when I was stressed due to things out of my control. So, I destressed my life as much as I could. We eventually moved away from a high stress environment (wife’s nutty family) to the Birmingham, AL area. That helped, but it was still there. You mentioned the “cocktail” of meds. I went through that too. After the Cyberknife treatment I was on Trileptal, Amitriptylene, Lyrica and two others I can’t recall the names of. Every 3 months I went for my quarterly checkup and the neurologist would add on another drug because of the continued symptoms. I was not getting better and this neurologist I was under at the time seemed to be just throwing darts at a dartboard - so to speak. I became less and less confident with him over time. Then a lady at my church had had TN also and her surgeon did the MVD for her with 100% success. But it does not always work. {My Nsurgeon had previously advised me not to do that and opted for the Cyberknife instead }. The friend encouraged me to go see her neurologist for evaluation. So I did. That lady sat down right in front of me and listened as I gave her the full story from the beginning. She was very observant. Now to the cocktails part of the story. At the end of our discussion she told me she would like to try to get me off some of these 5 meds. When I heard that I was terrified. But I agreed to try. So, I picked one of the lesser drugs to start with - I think it was Amitriptylene - and reduced the dosage over a 2 or 3 week period till I was down to just 4 drugs and let her know I felt no increase in symptoms. So….one down and 4 to go. I did the same with another till I was down to the Lyrica alone – which I had more confidence in. Eventually, she got me down to 3 Lyricas a day. The other 4 drugs of the “cocktail” were gone. I still take Lyrica but now only 2/day. So, I’m telling you all this in case you are still on a “cocktail”. No guarantee that what I’ve said will work for you but it sure helped me. Part of that was too was , in my opinion, to give the Cyberknife treatment time to work its thing. Its not a thing thats instant. It takes time. If you are still on a cocktail you might mentioned this to your neurologist. AND, if you aren’t satisfied with your neuro consider getting a 2nd opinion from another one. If you do, pick someone who has years of experience with this. When I am considering a new doctor for a field of medicine I go to the Blue Cross website and search under Find A Doctor. You can specify what field, such as neurologist. Scroll through those and see who has the MOST reviews. Generally, but not always, thats how I picked my opthamologist and more importantly my neurosurgeon for my spine. 100% success rate researching this way.
Good morning Jimmy thank you for taking the time to write I really appreciate that.
I hope you are on a good day today and well done for tapering your meds it’s a tough thing to do. I was able to get down to just one a day some years back as I couldn’t function and left my profession 10 years ago as a result. I do much better now but it still controls my life I am aware of it most days. At the moment I am suffering with my teeth and cheek but it can still be in my forehead and eye. It just is what it is I think.
I hadn’t tried any surgical options. When it first came 16 years ago I was a young single mum and the consultant felt anything surgical carries too much risk but I’m nearing 50 now and my children are grown so I have asked for another referral to pain clinic at least and see if there are any options open to me now.
It is exhausting, best of luck, I hope life is less stressy- you can’t chose your family can you?!!!
Helen
No you can’t choose your family. But you can move. And that I did ! I moved 400 miles away. You can’t outrun the telephone but the phone rings far far less than being there in the mix of it every single day. It was like, as one former family member said, a fishbowl.
Hey Helen. I understand fully. If you can get by and function with meds that may be the best. The Gamma Knife and Cyber Knife are not “surgeries” as such. No incision is made. Its all done with radiation. If you decide to look into these options I HIGHLY recommend looking into a neurosurgeon in one of the bigger cities , even if you have to drive there. I don’t know where you are but the neurosurgeons in the bigger cities are more aware of this issue. In my case, that is Birmingham, 25 miles from me. And pick a neurosurgeon that has high ratings with BCBS website and has been doing this for years ! The Cyberknife is a robotic treatment — so all the movements are very precise, with a thin beam of radiation focused in the same spot on the TN nerve and shot from many different angles . And very accurate. Much more so than a human trying to do it. There is no anesthesia needed. Treatment is painless, effortless . Nothing to it from the patient’s stand point. If you have any questions later feel free to contact me.
Hi Oo ok not considered those options. Im based in south wales.