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.
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
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!
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.
TN was my first sensory symptom and I assume lesion related as it was unrelenting for approx 3mo, gradually fading away into a long lasting unilateral facial hypersensitivity. It’s triggered now only by the faintest of draughts - the worst being warm air rising from a washing up sink or a hot pan whilst cooking.
I tolerated amitryptiline for about a week (immensely sedating and as I know now NOT a good choice for pwMS).
Fingers crossed it remains one of my milder issues.
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.
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.
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
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!
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.
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
TN was my first sensory symptom and I assume lesion related as it was unrelenting for approx 3mo, gradually fading away into a long lasting unilateral facial hypersensitivity. It’s triggered now only by the faintest of draughts - the worst being warm air rising from a washing up sink or a hot pan whilst cooking.
I tolerated amitryptiline for about a week (immensely sedating and as I know now NOT a good choice for pwMS).
Fingers crossed it remains one of my milder issues.
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 🤷🏼♀️