Hello,
My TN pain recently changed causing:
perceived deafness
ice pick in ear
throat pokey feeling same side as TN
triggering nausea from the poky throat feeling
Does anyone have any of those symptoms?
(sorry that is not as technical as I usually write, I am in pain and gagging.... oh a long night ahead )
hugs
All the time except the nausea is from tegretol. The tegretol helps so it not as bad.
yes. I have had three of the four, not the perceived deafness... Teg hasn't made me sick in a long while though...I absolutely hate this!
I just joined this group less then a week ago. I can't take any anti-seizurer drugs. Just on oxy and digesic.
I have it in three branches. Now its in my ear. Driving me nuts. So loud like someone has tuning fork to my ear. I also get sick but mainly when affecting my eye. Get migraine from eye pain and light etc.
Have stemetil to take for nausea. Take two and seems to help. Feel alot better an hour after I take them. Sometimes when I take them I get sick. Catch22.
With the ear pain i noticed I have pin and needles along side of my tongue. Weird feeling but dont have throat feeling.Wish I could help you.
Takecare
Hi . I believe that the symptoms that you describe match up to some of my own .The neuralgia which originated in the area in my jaw , just above my back teeth , has , over the years , 'spread' to the nerve running from within the area of the inner ear , and down my throat ,very close to the line of the Eustachian Tube ( as well as establishing itself in the roof of my mouth and across the top of my head . I don't know whether T.N. can be 'progressive' , but it has certainly become more obvious in all these branches . At the moment , my concern is the numbness which 'shadows' these areas , and which now seems permanent ... a numbness deepened by a very unpleasant 'pressure' and nausea ... my headache appears to be a permanent fixture now .
I wonder if other sufferers experience the intense 'sleepiness' that I often feel ... on days that it is really bad , I have to stop whatever I am doing , and find somewhere for a nap ... otherwise , I find myself falling asleep (straight in , no slow drifting!! ) , even if somebody happens to be talking to me ... sometimes I step right over the line into dreamlife in the blink of an eye ... this has made some interesting incidents of rather embarrasing hallucinations . At my age (67) , I also am concerned about how much the pain affects my short term memory and general mental activity ... the TN has been with me in varying degrees and forms , over the last 17 years .
I feel that I need to find a specialist who deals with both ENT and TN ... at the moment I have still another 4 months before I can see the Oral and Maxillo-Facial specialist ... such is the waiting list in my part of the UK ( North Wales ) . ) .
Hi again .... I forgot the affect on my eye ... sometimes the pain is rather like having a pin stuck into my eye .
Perhaps they should take me out and shoot me ! LOL
MY MEDICATION AT PRESENT IS PREGABALIN AND MATRIFEN ( FENTANYL ) PATCHES .
I believe he original posting of this thread is describing a mixture of trigeminal neuralgia, geniculate (nervus intermedius) neuralgia in the ear and glossopharyngeal neuralgia in the throat. The instantaneous falling asleep is more likely a drug side effect, and a fairly unusual one. I've only heard of two other cases in the 17 years I've been talking with patients, and I'm not sure exactly what causes this outcome.
And yes, TN is often progressive, may switch sides or become bilateral, and may be associated with other emergent neuralgias such as you describe. For Bhamilton, I'd suggest a call to your neurologist for prescription of an anti-nausea agent, until you can get a better medication regime in place to deal with the glossopharyngeal neuralgia.
Regards, Red
Thanks Red,
I posted in the thread that I am on phenegren round the clock- have been for years due to complex migraines, and I can no longer tolerate zofran. So if nausea persists I am out of luck- compazine causes akathisia in me.
I am going to see an ENT tomorrow to have my ears fully scoped and discuss the pattern of my throat pain, due to the neuro being hesitant to dx gloss, even though my previous neuro dx'd it a few months ago. Funny how docs can try to un-diagnose a patient. Anyways, today the pain is transient at best- worse in wind and water. Back to Sprix nasal spray and baclofen, since I cannot take the other meds commonly prescribed for TN. I am one of those people that suffers from paradoxical reactions so almost every med is off limits to me- an even bigger reason to find out if I am a candidate for surgery in the future.
Thanks for everyone's inputs- I can at least see that though rare, I am not alone... Hugs to all :)
I do have these yes. But with my throat its kinda weird. I will see if I can describe it too you. Like if i pull my head back my throat will gag up and make me cough and sometimes it will just do it when I am eating stuff.. I suppose if I weren't on the heavy dose of Trileptal it would be worse and I would probly throw up. Who knows ..it might get worse this problem only recently started. But I've had issues before with my throat and they've gone away... but they were like swallowing issues. This is different and it's kinda like what u are saying... I think??? This stuff is sooooo craZZy. and NOT FUN!!!!!!!!!!!!!
:(
I figured out what that throat feeling is that i have. You know when you stick a q-tip in your ear to clean it?? and you may stick to far and it makes your ear hurt a little you gag and cough??? .....THAT is what my throat is doing but it is because my ear is hurting on its own causing my throat do do the gagging stuff which in turn is making me cough off and on...
Does that make sense????? ~~~~~Blah!!!!! I am going to the neuro today.. I sure hope he can shed some light on this.
YESSSS!! That is exactly what I have going on- the q-tip thing you described! I have an apt with an ENT tomorrow, I printed out my pain diary, etc... I hope I can get some sort of answer to clearly define this ear pain throat tickle. These neurlagia messes are driving me bananas! Please share what your neuro said!
Thanks everyone for input... Has anyone had better luck with an ENT than a neuro regarding the ear pain? I have seen several neuros and they don't mind the dx of TN but getting them to acknowledge glosso. or geniculate is impossible, except fr neuro that was a head/face specialist and his answer was expensive botox...
Min said:
I figured out what that throat feeling is that i have. You know when you stick a q-tip in your ear to clean it?? and you may stick to far and it makes your ear hurt a little you gag and cough??? .....THAT is what my throat is doing but it is because my ear is hurting on its own causing my throat do do the gagging stuff which in turn is making me cough off and on...
Does that make sense????? ~~~~~Blah!!!!! I am going to the neuro today.. I sure hope he can shed some light on this.
Well..unfortunately my neuro said its somethin I just gotta tolerate. There is nothing he can do for me. Although I suppose if i take the percocet and eliminate the pain completely or not eat cold food at all that might help me. I do like my milk cold!!!
:(