Trigeminal neuralgia, brief, very painful, electric shock-like episodes in the distribution of the trigeminal nerve is common in people with MS. This newsletter describes its management.
My Trigeminal Neuralgia was the second MS relapse I suffered in 1987. (The first was sensory deprivation in my hand in 1986). There was an extremely sharp pain in my right cheek, and my speech became slurred.
Tegretol calmed both symptoms down very effectively within minutes of taking it. After 3 months I was able to wean off the medication completely.
34 years later I still haven't had a recurrence, and hope I never will.
Yes, TN can be exquisitely sensitive to Tegretol, which is the original branded version of carbamazepine. Please note this is one situation in my experience where the cheaper generics are not as good as the innovator formulation, in particular with the slow-release formulation.
Your trajectory seems similar to mine. i.e., weird stuff in '88. Little since. In your case, do you mean no TM since or no MS flares since? I have had optic neuritis a few times but otherwise I'm very fit and well. I have TMJ ,as mentioned in Gavin's slefie, but don't know if that is MS. My neuros in2 countries always said that any symptoms of anything I ever had is categorically NOT MS? No reasons given for what they say so don't think they're correct. I do my own thing and tend to ignore them.
Thank you so much for the information, It has given me some hope and I will print it off Although I doubt anyone in the NHS would even take the time to read it! I was having up to 50 shocks in my upper lip cheek and mouth I was unable to eat, drink or talk My MS nurse has put in an urgent request for me to see the Neurologist Unfortunately I believe I am in for a long wait. At first I was prescribed carbamazepine which was like a wonder drug but unfortunately landed me in A&E with severe hyponatraemia So next it was gabapentin which is partly working and for the moment makes the pain quite mild One of the worse things for me is the total lack of understanding by certain medical professionals who dismiss it as nothing and consider it no more than a bad case of hypochondria Also whilst researching the condition online the general opinion seemed to be that if it was primary TN (involving compression of the nerve by the blood vessel) there was hope, surgical options when the medication would inevitably become ineffective However if was secondary TN a plaque caused by MS It would be far more difficult to treat I read that surgery would be ineffective The plaque related to this nerve was unlikely to be of the relapsing remitting nature of other MS plaques and in time all drugs would become ineffective resulting in the pain becoming untreatable and permanent the only option would be CBT and counselling on how to deal with the pain and of course it quotes " This doesn't mean we don't consider your pain to be real" ( thank you NHS) I'm afraid that just exemplifies the utter derogatory and patronising behaviour I have to deal with I fear I I have made the decision that if this were to happen to me and the pain returned I'm afraid I would most definitely end my life as there would be no life possible with that level of pain
Hi Jane, so sorry to read your experiences with TN and some healthcare professionals. Neither are a happy occasion but thankfully there are experienced neurologists out there who can be trusted. Like you my TN is part of my MS and was diagnosed with both at the same time. TN was my first symptom and of such nature that I walked into the ED and said I wouldn't leave until I knew what was wrong with me. My brother had been diagnosed with a brain tumour shortly before and I thought I was just imagining my pain as a way of dealing with his. Sadly, it was not so and was on Neurontin first until the highest dose allowed stopped working, and then moved on to Lyrica, with added Amitriptyline and Trileptal. Nerve pain sucks but I hope that at least you will find some answers soon. Walking into ED was one of the best decisions I ever made, as was retiring early as it gives me time to take care of my health. Stay strong X
Hi just having a read about this drug I fear my GP my feel a little out of her depth with this one and I may have to wait to discuss it with the Neurologist or alternatively with Professor D'cruz ( I plan to go up and see him in the new year) as to whether I could take it with warfarin and Antiphospholipid syndrome but thank you so much for replying and it's good to know there are other options and your article was very enlightening
I had about a month of TN before my MS diagnosis. Unilateral, headache, jaw pain , and cheek pain. It hurt even to touch the side of my face. I thought It was a sinus infection. The GP put me on antibiotics… no resolve. So, I was sent to ENT who did a scope of my sinus… nothing, but he recommended a neurologist. Unfortunately, they ordered a brain MRI and said it was fine and gave me some sleeping pills so I could rest. No one ever mentioned that I was suffering from TN!
Eventually it resolved and it wasn’t until 5 years later after after having walking difficulties, and more tests that I received my MS diagnosis. I currently take Gabapentin and Baclafan.
I have what I call a sizzling of pain that is always low grade on my more affected side, by my hip, and also on my forehead. I’m always worried that it will come back full force.
I have had a few bouts of TN since a shingles infection over Christmas. The worst was last weekend, starting on the Friday evening after eating a few jelly snakes. Intense pain if I ate anything slightly warm. It seems to be controlled with b1/B12 injections (pet vitamins).
Wow! I had TN two years before my diagnosis (2002 for the TN). The GP said, "Yes, this is a thing that should go away eventually." And it did thank heavens but I never thought of it as being related until reading this.
Thanks Prof G. Very helpful to have this info. So far TN for me has been triggered by cool or cold wind. Fortunately it doesn’t last long enough for me to seek treatment. It is indeed excruciatingly painful but by the time I think I need to do something about it, it stops.
TN was my first hint of MS, I didn't think anything of MS ,I was too busy dealing with the lightning bolts in my face ,my primary care diagnosed it, I had a combo of TN and a nonstop migraine for several weeks the severely impacted my work even on gabapentin and imitrex and zofran to combat the symptoms. It caused one visible lesion that was missed but a nuero later caught when reviewing the MRI.
It was pretty brutal dealing with pain in your face, it takes a different mentally to get over when compared with pain elsewhere on your body. I consider myself lucky to have had the type that caused intermittent pain giving me a minute to five between electric zaps when others experience it nonstop . I hope anyone who experiences it gets the help they need immediately and that they have good Drs on their side , it makes a world of difference having that support!
Seems we were in the same boat TN being the first hint of MS. I completely agree with you when you say it takes a different mentality to get over its pain. To this day, I still remember the looks on people's faces when I said that sitting next to a cold window on a bus or train caused stabbing pain in and around my eye and ear, and in a small spot behind and above my ear. Or that the same stabbing pain could be set off by slamming doors, etc. Like you say, having the right medical team and treatment makes all the difference. In addition, I retired from work aged before I was 40, but it's made all the difference. Life is lived on my own terms and I avoid environmental triggers like crowds, loud music, etc. but again, it is what makes life that much easier and happier. Hope you can enjoy life, and for everyone else with TN and/or MS, to be able to see the positive side of life.
(I write about it all so feel free to get some sunshine there, although life with a puppy has cut into being able to write but Ill be soon enough). Stay safe!
Thank you Prof G for raising awareness of this invisible and unbelievably painful symptom; a pain so extreme it strikes the core of your very being. I am a Pw secondary progressive MS, I have suffered TN episodes over several years. As you describe, it strikes in clusters, up to 20+ times a day and night, each hit can last for up to 5 minutes ot longer over a two week or so period. My pain episodes have been less frequent of late, perhaps reflecting my continued taking of a low dosage of carbamazepine and amitriptyline for 3-4 years; increasing the dosage (as prescribed) when I have 'hits' but wary of staying at the higher level given the potential interaction with the various other drugs (including trial drug simvastatin) I am taking. My MS Nurses are sympathetic but there is not much more they can offer when an episode hits. The last one was triggered by a visit to the dentist which makes me wary now of seeking any dental treatment at all. I experience still the fizzing in my upper right teeth, a bit like a mosquito hitting an electric bar. Not extreme but just enough to remind me it's there, lurking beneath the surface and ready to roar if ever I go 'off guard'.
Prof G - Is it possible to experience this type of neuralia in a different part of the body? I experience the symptoms that you describe for TN in my hip area with a very intense, shock-like pain. Often the pain is so intense that it buckles my knees. Although it can happen at totally random times, it is very often brought on by a change in position, like standing up after sitting or bending at the waist in a certain direction. I am currently on a pretty sizeable daily dose of gabapentin and it does seem to be doing much.
Yes, you can get neuralgia at any level. When it involves the spinal cord it is often referred to as radicular pain. Because yours is mechanical you will need to be examined and possibly have investigations done to find out what is causing the pain. Again we should not assume that it is MS-related just because you have MS.
My TN is also secondary to RRMS (a late diagnosis at 58, 5 years ago). I started Tecfidera for the MS and carbamazepine for the TN (I became allergic). I weaned off the carbamazepine and found I had no attacks. I went a couple of years with nothing thinking I’d never get it again - ha! It started to insinuate back, low level, and generally following a virus (but often remitting completely. With every virus I got, it became worse. Gabapentin, noratriptyline, pregabalin - ineffective. Lamotrigine - allergic. Amytriptiline not tolerated. I eventually went to a private neurologist who prescribed oxcarbazepine which was almost immediately effective. He also passed me to his NHS list as my own GP had many knock backs from different trusts in his efforts to do this. I had a virus last Christmas and the TN has increased this year without much remission. Covid set it off again in October and I’m now on the maximum dose of oxcarbazine. The TN has been explosive, many times a day, often continuous, sometimes abated long enough for a window to clean my teeth and eat something. The NHS clinic have been really good, I had the Botox treatment 6 days ago (no better yet but I know it takes time) and I have a lidocaine infusion booked for 10 days time. I remain optimistic I have a pain pathway and am grateful for that as many may not be so fortunate. All this time I’ve had 6 brain MRI’s and my MS remains ‘stable and unchanged’. It doesn’t feel like it. And it all takes time, which when you have nuclear TN is not something you need… Sorry this is long. But it feels good to write it down and share 😊
I have RRMS and developed TN in January when I had Covid-19 and had another bout in July. Been put on carbamazepine which seems to be keeping it at bay but I’m terrified of having another bad flare up. Felt like someone was stabbing my head, pain increased by bright light and movement. I can totally understand why it’s called suicide syndrome
My poor MIL has this, she doesn't have MS. It's been going on for the best part of 2 years. Her GP has prescribed Amatryptlin (sp) and she pops Nurofen like Smarties. Awaiting op for it. I am dreading getting something like this
My Trigeminal Neuralgia was the second MS relapse I suffered in 1987. (The first was sensory deprivation in my hand in 1986). There was an extremely sharp pain in my right cheek, and my speech became slurred.
Tegretol calmed both symptoms down very effectively within minutes of taking it. After 3 months I was able to wean off the medication completely.
34 years later I still haven't had a recurrence, and hope I never will.
AndrewC.
Yes, TN can be exquisitely sensitive to Tegretol, which is the original branded version of carbamazepine. Please note this is one situation in my experience where the cheaper generics are not as good as the innovator formulation, in particular with the slow-release formulation.
I'm so relieved to hear that The thought that it may go away is very reassuring and again gives me some hope
Your trajectory seems similar to mine. i.e., weird stuff in '88. Little since. In your case, do you mean no TM since or no MS flares since? I have had optic neuritis a few times but otherwise I'm very fit and well. I have TMJ ,as mentioned in Gavin's slefie, but don't know if that is MS. My neuros in2 countries always said that any symptoms of anything I ever had is categorically NOT MS? No reasons given for what they say so don't think they're correct. I do my own thing and tend to ignore them.
No Trigeminal Neuralgia, unfortunately the MS is slowly getting worse.
Perhaps I should try Tegretol again but it made me as sick as a dog and on Trileptal since. So glad it worked for you!
I am suffering from TN as you write. On 150mgs twice a day of pregabalin. MS nurse and Gp say they will review next week.
Importantly, did you find the newsletter helpful in managing your condition?
Thank you the newsletter was immensely helpful. Thank you.
Pregabalin is a calcium channel blocker and its effect is nowhere as good as a sodium channel blocker.
Thank you so much for the information, It has given me some hope and I will print it off Although I doubt anyone in the NHS would even take the time to read it! I was having up to 50 shocks in my upper lip cheek and mouth I was unable to eat, drink or talk My MS nurse has put in an urgent request for me to see the Neurologist Unfortunately I believe I am in for a long wait. At first I was prescribed carbamazepine which was like a wonder drug but unfortunately landed me in A&E with severe hyponatraemia So next it was gabapentin which is partly working and for the moment makes the pain quite mild One of the worse things for me is the total lack of understanding by certain medical professionals who dismiss it as nothing and consider it no more than a bad case of hypochondria Also whilst researching the condition online the general opinion seemed to be that if it was primary TN (involving compression of the nerve by the blood vessel) there was hope, surgical options when the medication would inevitably become ineffective However if was secondary TN a plaque caused by MS It would be far more difficult to treat I read that surgery would be ineffective The plaque related to this nerve was unlikely to be of the relapsing remitting nature of other MS plaques and in time all drugs would become ineffective resulting in the pain becoming untreatable and permanent the only option would be CBT and counselling on how to deal with the pain and of course it quotes " This doesn't mean we don't consider your pain to be real" ( thank you NHS) I'm afraid that just exemplifies the utter derogatory and patronising behaviour I have to deal with I fear I I have made the decision that if this were to happen to me and the pain returned I'm afraid I would most definitely end my life as there would be no life possible with that level of pain
Hi Jane, so sorry to read your experiences with TN and some healthcare professionals. Neither are a happy occasion but thankfully there are experienced neurologists out there who can be trusted. Like you my TN is part of my MS and was diagnosed with both at the same time. TN was my first symptom and of such nature that I walked into the ED and said I wouldn't leave until I knew what was wrong with me. My brother had been diagnosed with a brain tumour shortly before and I thought I was just imagining my pain as a way of dealing with his. Sadly, it was not so and was on Neurontin first until the highest dose allowed stopped working, and then moved on to Lyrica, with added Amitriptyline and Trileptal. Nerve pain sucks but I hope that at least you will find some answers soon. Walking into ED was one of the best decisions I ever made, as was retiring early as it gives me time to take care of my health. Stay strong X
If you can't tolerate carbamazepine another option would be another sodium channel blocker such as lamotrigine.
Hi just having a read about this drug I fear my GP my feel a little out of her depth with this one and I may have to wait to discuss it with the Neurologist or alternatively with Professor D'cruz ( I plan to go up and see him in the new year) as to whether I could take it with warfarin and Antiphospholipid syndrome but thank you so much for replying and it's good to know there are other options and your article was very enlightening
I had about a month of TN before my MS diagnosis. Unilateral, headache, jaw pain , and cheek pain. It hurt even to touch the side of my face. I thought It was a sinus infection. The GP put me on antibiotics… no resolve. So, I was sent to ENT who did a scope of my sinus… nothing, but he recommended a neurologist. Unfortunately, they ordered a brain MRI and said it was fine and gave me some sleeping pills so I could rest. No one ever mentioned that I was suffering from TN!
Eventually it resolved and it wasn’t until 5 years later after after having walking difficulties, and more tests that I received my MS diagnosis. I currently take Gabapentin and Baclafan.
I have what I call a sizzling of pain that is always low grade on my more affected side, by my hip, and also on my forehead. I’m always worried that it will come back full force.
I have had a few bouts of TN since a shingles infection over Christmas. The worst was last weekend, starting on the Friday evening after eating a few jelly snakes. Intense pain if I ate anything slightly warm. It seems to be controlled with b1/B12 injections (pet vitamins).
Wow! I had TN two years before my diagnosis (2002 for the TN). The GP said, "Yes, this is a thing that should go away eventually." And it did thank heavens but I never thought of it as being related until reading this.
Thanks Prof G. Very helpful to have this info. So far TN for me has been triggered by cool or cold wind. Fortunately it doesn’t last long enough for me to seek treatment. It is indeed excruciatingly painful but by the time I think I need to do something about it, it stops.
TN was my first hint of MS, I didn't think anything of MS ,I was too busy dealing with the lightning bolts in my face ,my primary care diagnosed it, I had a combo of TN and a nonstop migraine for several weeks the severely impacted my work even on gabapentin and imitrex and zofran to combat the symptoms. It caused one visible lesion that was missed but a nuero later caught when reviewing the MRI.
It was pretty brutal dealing with pain in your face, it takes a different mentally to get over when compared with pain elsewhere on your body. I consider myself lucky to have had the type that caused intermittent pain giving me a minute to five between electric zaps when others experience it nonstop . I hope anyone who experiences it gets the help they need immediately and that they have good Drs on their side , it makes a world of difference having that support!
Seems we were in the same boat TN being the first hint of MS. I completely agree with you when you say it takes a different mentality to get over its pain. To this day, I still remember the looks on people's faces when I said that sitting next to a cold window on a bus or train caused stabbing pain in and around my eye and ear, and in a small spot behind and above my ear. Or that the same stabbing pain could be set off by slamming doors, etc. Like you say, having the right medical team and treatment makes all the difference. In addition, I retired from work aged before I was 40, but it's made all the difference. Life is lived on my own terms and I avoid environmental triggers like crowds, loud music, etc. but again, it is what makes life that much easier and happier. Hope you can enjoy life, and for everyone else with TN and/or MS, to be able to see the positive side of life.
(I write about it all so feel free to get some sunshine there, although life with a puppy has cut into being able to write but Ill be soon enough). Stay safe!
Thank you Prof G for raising awareness of this invisible and unbelievably painful symptom; a pain so extreme it strikes the core of your very being. I am a Pw secondary progressive MS, I have suffered TN episodes over several years. As you describe, it strikes in clusters, up to 20+ times a day and night, each hit can last for up to 5 minutes ot longer over a two week or so period. My pain episodes have been less frequent of late, perhaps reflecting my continued taking of a low dosage of carbamazepine and amitriptyline for 3-4 years; increasing the dosage (as prescribed) when I have 'hits' but wary of staying at the higher level given the potential interaction with the various other drugs (including trial drug simvastatin) I am taking. My MS Nurses are sympathetic but there is not much more they can offer when an episode hits. The last one was triggered by a visit to the dentist which makes me wary now of seeking any dental treatment at all. I experience still the fizzing in my upper right teeth, a bit like a mosquito hitting an electric bar. Not extreme but just enough to remind me it's there, lurking beneath the surface and ready to roar if ever I go 'off guard'.
Prof G - Is it possible to experience this type of neuralia in a different part of the body? I experience the symptoms that you describe for TN in my hip area with a very intense, shock-like pain. Often the pain is so intense that it buckles my knees. Although it can happen at totally random times, it is very often brought on by a change in position, like standing up after sitting or bending at the waist in a certain direction. I am currently on a pretty sizeable daily dose of gabapentin and it does seem to be doing much.
Yes, you can get neuralgia at any level. When it involves the spinal cord it is often referred to as radicular pain. Because yours is mechanical you will need to be examined and possibly have investigations done to find out what is causing the pain. Again we should not assume that it is MS-related just because you have MS.
the gabapentin DOESN'T seem to be doing much...
In my first week starting Ozanimod, I had severe facial pain and shocks on the left side of my face.
Then neck pain and then I got numbness all over my left side, from the armpit to under my foot in combination with nerve pain
I did an mri for this last week and today the results
A solid progression of new lesions:
Right frontal
In the Corpus callosum
Lateral ventricles especially on the right many new spots
Large band-shaped lesion in midline brainstem
Lots of progression along the rear horns
Multiple fireplaces C2 and C3
Conus medullaris, several small myelopathy foci have arisen
Progression of white matter abnormalities supratentorial, in the brainstem and newly arising lesions in the cervical and low thoracic myelum
I suspect it is the brainstem lesions that have triggered your pain.
was already afraid of it, thank you for answering
My TN is also secondary to RRMS (a late diagnosis at 58, 5 years ago). I started Tecfidera for the MS and carbamazepine for the TN (I became allergic). I weaned off the carbamazepine and found I had no attacks. I went a couple of years with nothing thinking I’d never get it again - ha! It started to insinuate back, low level, and generally following a virus (but often remitting completely. With every virus I got, it became worse. Gabapentin, noratriptyline, pregabalin - ineffective. Lamotrigine - allergic. Amytriptiline not tolerated. I eventually went to a private neurologist who prescribed oxcarbazepine which was almost immediately effective. He also passed me to his NHS list as my own GP had many knock backs from different trusts in his efforts to do this. I had a virus last Christmas and the TN has increased this year without much remission. Covid set it off again in October and I’m now on the maximum dose of oxcarbazine. The TN has been explosive, many times a day, often continuous, sometimes abated long enough for a window to clean my teeth and eat something. The NHS clinic have been really good, I had the Botox treatment 6 days ago (no better yet but I know it takes time) and I have a lidocaine infusion booked for 10 days time. I remain optimistic I have a pain pathway and am grateful for that as many may not be so fortunate. All this time I’ve had 6 brain MRI’s and my MS remains ‘stable and unchanged’. It doesn’t feel like it. And it all takes time, which when you have nuclear TN is not something you need… Sorry this is long. But it feels good to write it down and share 😊
I have RRMS and developed TN in January when I had Covid-19 and had another bout in July. Been put on carbamazepine which seems to be keeping it at bay but I’m terrified of having another bad flare up. Felt like someone was stabbing my head, pain increased by bright light and movement. I can totally understand why it’s called suicide syndrome
My poor MIL has this, she doesn't have MS. It's been going on for the best part of 2 years. Her GP has prescribed Amatryptlin (sp) and she pops Nurofen like Smarties. Awaiting op for it. I am dreading getting something like this
I’ve had this so many times. The last time was so severe I contacted my MS nurse who told me to go to the GP surgery and get my ears checked 🤷🏼♀️
Tricyclics, such as amitriptyline, are not effective for neuralgic-type pain. They work better for background central pain syndromes.