Winter is once again proving to be horrendous for me. I am getting shooting pains and spasms on the left side of my tongue. Way at the back in the crook of my jaw or where I think my tonsils is. Sometimes it shoots across to the middle. These spasms last about 10 to 30 seconds and are very, very intense. Every time I have new symptoms it really freaks me out. Does anyone else have this. The only thing that remains the same about my ATN or GPN is that it is always changing. I am back on nortriptyline but it isn’t doing the trick right now.
Yes, same here. Luckily at the moment in the UK we are having a warm winter which means the TN isn't playing up as well.
Hi Jane,
Do you have an idea of what the trigger may be? If it’s the cold, have you got a big fluffy scarf you can breath through? Find that sometimes helps with cold t rigger.
I get spasms that feel like my tonsils and tongue are being pulled down my throat. I have atypical GPN. I have been living with this constantly for the past few weeks. Its been treacherous. I have painful speaking by the end of the day and now feel a lump in my throat. I feel like Im being strangled. I hear you about freaking out with new symptoms. I have a hard time believing something tragic is not going on. Ive freaked myself out by telling myself my throat isn't working, i.e, food stuck sensation. Going to ENT (again) tomorrow. Every six months I go to him to get scoped and he just looks at me like sorry, nothing wrong and nothing I can do. I have a cranial neurologist appointment at UPenn next week. Im hoping something can take away this intense and never ending throat pain. Its ruining my life. I can't even read a book to my kids. I had a pulling spasm last night into my jaw, ear, throat, tongue. My roof of mouth gets tingly and lips get tingly and I know its coming on. Sorry you are in pain. Im on gabapentin and its not doing the trick either.
Hi Smiley,
Thanks for your reply. I think winter in general is a trigger for me. This will be my third winter in a row with a severe flare up. Other then that it does what it wants when it wants!
Smiley said:
Hi Jane,
Do you have an idea of what the trigger may be? If it's the cold, have you got a big fluffy scarf you can breath through? Find that sometimes helps with cold t rigger.
:)
Hi Pyr2
Thanks for your reply. Yeah the throat symptoms are scarey. When I get these “spasms” it feels like my throat is tightening. All I can do is close my mouth and concentrate on breathing in through my nose until it passes. I have bilateral atn in all three branches and each new set of symptoms I experience are worse then the last. First it was my teeth, then my ear, then my tongue, then my eye and now this. It really is worse then a form of torture.
I hope u gain some good insight and advise with your upcoming appointment. And most importantly–some relief from your pain.
Jane
Pyr2 said:
I get spasms that feel like my tonsils and tongue are being pulled down my throat. I have atypical GPN. I have been living with this constantly for the past few weeks. Its been treacherous. I have painful speaking by the end of the day and now feel a lump in my throat. I feel like Im being strangled. I hear you about freaking out with new symptoms. I have a hard time believing something tragic is not going on. Ive freaked myself out by telling myself my throat isn’t working, i.e, food stuck sensation. Going to ENT (again) tomorrow. Every six months I go to him to get scoped and he just looks at me like sorry, nothing wrong and nothing I can do. I have a cranial neurologist appointment at UPenn next week. Im hoping something can take away this intense and never ending throat pain. Its ruining my life. I can’t even read a book to my kids. I had a pulling spasm last night into my jaw, ear, throat, tongue. My roof of mouth gets tingly and lips get tingly and I know its coming on. Sorry you are in pain. Im on gabapentin and its not doing the trick either.
I have had no luck with ENT’s understanding GPN trauma — Neurology can confirm it — name it — offer medication for pain. This really is a brick wall to keep running into with every recurrence of trauma. When GPN is active I take taro-carbamazepine 200ml (can take up to 1200ml/day). It dulls the spasms but I’m very groggy.
My name is chuck. I’ve had an oppration to put a spacer between the artery and the nerve. It took place in 2009. I’ve been without pain since then. Now ,about a week ago, it’s back. Not as bad, but I know it’s there. Has anyone else experienced this reoccurrence.
I also had a theory regarding low air temperatures (sub 10Celsius/50Farenfeit) causing dilation of the arteries, which in turn caused pressure on the adjoining Glossopharyngeal (and possibly Trigeminal) cranial nerve(s). It really did seem to be the only common thread during my period of pain attacks, and was taken on board by my Neurologist at the time. A diary was kept noting everything around the pain attacks such as time, location, diet, emotional state, and any stimulus that may point to an external cause, and the only common thread I noticed was air temperature. It was always cold. Winter was the common time for these attacks and wearing scarfs, woollen hats and sitting by the fire didn't seem to work because at some point, I had to brave the elements. I soon became aware of this after my MVD, moved to Western Australia, where the winter falls to around 17C(62.6F) just to be on the safe side. Of course, those who have read my story will know, I have been pain free ever since (10 years) :-)
Feel free to write me if you any questions.
Michael - Kiwisurvivor
Hi Chuckie, may be best to start a discussion with your question. Message me if you need a hand.
Smiley.
Chuckie said:
My name is chuck. I've had an oppration to put a spacer between the artery and the nerve. It took place in 2009. I've been without pain since then. Now ,about a week ago, it's back. Not as bad, but I know it's there. Has anyone else experienced this reoccurrence.
I also find that winter is terrible. This was my third winter with TN and GPN symptoms and yet again it was horrible. I often find that impending storms equal high pain days. As well as wind and cold air. Last summer I actually had a remission for about three months.
I am looking very forward to spring and hoping for pain free days.
Jane
Sadly, I know exactly what you're talking about. I get my spasms right along the left corner of my skull, pretty much where my surgery scar is. Thankfully with the weather warming up, I'm not getting them as often when I go outside. Muscle relaxers can help somewhat for me, same with a heating pad or hot shower. Since you have the spasms near your tongue, what you might want to look into is a numbing agent that you gargle & then spit out. I tried one a couple years ago when I first started having pain while chewing & swallowing food. It tastes pretty nasty, but if it can help reduce the pain of those spasms or even kill the sensation entirely, it just might be worth considering. I hate myself for this, but I can't recall what that numbing drink was called. That's so helpful of me, isn't it?
I only finally got diagnosed correctly with GPN (stupid neuro never even thought to ask my why I thought his dx was wrong a year after he made it when I commented on it), and it does feel like a moving target at times. Last summer, I was so happy, singing the praises of Lyrica (nortriptyline never worked for me), winter came, and I heard others say that winter things got worse, so when mine did, I just tried to soldier on and brave it until spring. Spring is here, and in the last month or so, it has started to get much worse. Yesterday is when I got the official confirmation of the dx from the neurosurgeon (I had seen him for something else, and asked for a second opinion - so glad I did!) after the MRI confirmed it, and he upped my Lyrica to the max, so now I wait and see if that helps. If not - surgery. Gulp. But the kind of gulp that has a "well, maybe that will get rid of the nearly constant pain punctuated by extra fun now and then.)