Bizarre symptom #53. For a few days in 2008, I had the most intense pain I have ever experienced. I have smashed my elbow on a pothole, been driven into when on my bike by a car going at 30+mph, broken both bones in my forearm, been smashed up on rugby pitches in several countries, but nothing compared to this. It came on when I ate and would subside between meals. It was so painful I was running round the room hitting myself. From googling I think it was 'trigeminal neuralgia'. It started one morning, lasted a few days (as I say, only when I ate) and then stopped. I felt flu-ey for a couple of days after and that was it. I have had periods when it has simmered away but only to the level of discomfort, not to that of the intense pain. A couple of days ago when I was eating I got a very painful tongue as if I had bitten down hard on the right side of it, though I hadn't and there was no apparent damage. The tongue has ached since but again it's when I eat that it all gets very painful. I think it's the hypoglossal nerve. It has been at the level of running round the room and curling up in a ball and rocking back and forth. It does subside slightly after the initial mouthfuls so I can finish the meal, though as it's the tongue that is painful, it's not comfortable. I am getting pains in some of the nerve-endings in my teeth as well, though again that's tolerable. It is definitely linked to the illness as I'm experiencing other symptoms, which I do sometimes, such as sharp intense headaches. Apart from making things unpleasant, it doesn't really affect my physical functioning. (ETA: though it is draining so I am tired and my cognitive functioning is even less.) Usually when I go through a phase where symptoms rage like this I see some improvement afterwards, so I hope...
Sounds bloody awful @JohnTheJack ive heard trigeminal neuralgia described as terrible I hope you have/can get some pain relief to at least reduce it virtual hugs
The hypoglossal nerve is said to be purely motor and I think tongue pain sensation comes from the mandibular branch of trigeminal (lingual). Maybe this is the trigeminal giving trouble again? But I have not done neurology for forty years so get it checked out if it does not settle.
Thanks, Jo. I do often get discomfort in my mouth which seems linked to nerves and so this didn't seem completely unusual, sort of on the spectrum of what sometimes happens if at one end of it. Happily it has now largely passed. I often find these symptoms flare up and then subside. The illness goes through phases, so there are times when these symptoms erupt and then subside.
I think this is connected to ME. I get nerve pain down my face a lot though it is not often as terrible as trigeminal neuralgia. It goes to my teeth and I have had them x rayed an investigated but I now realise it is the nerve not the teeth that is the problem. It goes across my nose like sinus pain and gives me earache. It happens on both sides but not at the same time. For a while in my thirties every time I spoke for a while my tongue would go thick, sort of like after a filling making my speech sound as if my mouth was full. I read somewhere an early description of ME and they spoke about problems with these nerves being found but the emphasis on fatigue has pulled attention away from the neurological problems we have. Of course FND now makes it impossible to have it investigated, I will never go back to a neurologist.
This is my most harrowing and debilitating symptom. It destroys all quality of life and precludes so much activity. It’s haunting, and I lament for anyone who shares in this nightmare. Moreover, this symptom is low hanging fruit for FND cabal.
I just wanted to mention, and sorry if people already know this, but I don’t like the idea of people suffering with severe pain because they didn’t know - you wouldn’t go see a general neurologist (and definitely wouldn’t go down the path of FND!) to get help for facial pain. Your best bet would be to see a headache specialist, or even better, a Facial Pain clinic within a Headache clinic (pain management). There are many treatments available. I just wanted to give an example of how facial pain clinics sit within headache clinics - there’s more in other areas of the country: https://www.guysandstthomas.nhs.uk/our-services/headache-pain/clinics
+1 Not sure if or how this connect with ME though. Have had periods where out of the blue I got sudden extreme pain like being lashed with a cat o' 9 tails across one side of the face. Luckily it wasn't all that frequent and the pain was very brief, by the time I had managed to think WTF?!!! it was fading rapidly. It was put down to trigeminal neuralgia at the time. Hasn't happened for years. Fingers crossed. Also, I get frequent cold sores in pretty much all the areas where the various branches of the trigeminal nerve end (one area at a time) and occasional nasty ear pain that I suspect is due to a cold sore inside the ear canal, plus I have constant paresthesia in the cheekbone foramen area where the trigeminal nerve exits, on the same side that used to get the cat o' 9 tails lashes. So some clear issues with the trigeminal nerve and some sort of herpes virus. But I haven't noticed any correlation between trigeminal/herpes and ME flares except that since my ME turned severe I get a couple of days very ramped up flu-like malaise (without having PEM at the time) prior to the blisters appearing. But the frequency of blisters and the severity of the paresthesia seem to have no correlation with better or worse ME periods, nor with PEM. Another puzzle.
