I am wondering if anyone else has or had a 24 hour a day weird feeling in the throat along with a numb feeling. Almost feels like I have a golf ball in there?? Also Does anyone have a hard time keeping your face relaxed? Because I'm constantly grimacing all the time. Please get back to me
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Connie, I woke up early today going to post something very similar…however I have ATN. For a few weeks now I have had burning in my throat and sometimes it is hard to swallow. I got on antibiotics, but it isn’t going away and my throat isn’t particular pink or red. I do have a slight white spot on the side where I have my nerve pain (right side), but have been checked for strep and flu and am negative. It is worse in the morning or if I take a long nap. My throat seems very dry, so I am drinking more water, but it isn’t helping. I don’t grimace, as my pain is mostly in my right ear. However, I am getting more and more concerned that something is happening to my throat and I too wish to hear from others. Mine feels weird 24 hours a day, but actually hurts after laying down.
I too have recently noticed a strange feeling in my throat, almost feels like a TN shock/spasm along one side of my throat. It doesn’t last long, and seems to follow the path of my current TN pain.
Mimi
If your throat feels burning, you should be checked for acid reflex first. It sucks to be not feeling well everyday, but thank you for your messages back,,,,,,
Nomad said:
Connie, I woke up early today going to post something very similar...however I have ATN. For a few weeks now I have had burning in my throat and sometimes it is hard to swallow. I got on antibiotics, but it isn't going away and my throat isn't particular pink or red. I do have a slight white spot on the side where I have my nerve pain (right side), but have been checked for strep and flu and am negative. It is worse in the morning or if I take a long nap. My throat seems very dry, so I am drinking more water, but it isn't helping. I don't grimace, as my pain is mostly in my right ear. However, I am getting more and more concerned that something is happening to my throat and I too wish to hear from others. Mine feels weird 24 hours a day, but actually hurts after laying down.
It could be that we are all experiencing Glossopharygeal Neuralgia which is part of TN. I have a permanent soreness in mine and spicy food burns like hell. I fall to throat infections easily and my throat is always dry. It sucks!
I think GERD would normally be a good guess, but the weird thing is the discomfort, dryness and pulling feeling is on my right side…where all my other ATN symptoms are and I’ve never heard of a one sided sore throat. I now have discomfort in my right eye, the right side of my throat and bad pain in my right ear and I have moments these days that are overwhelming.
I have weird feelings also on the left side of my throat, it also can cause me to choke sometimes because it gets so dry. My doctor told me it is all part of my TN and I need to suck on lemon drops and mints allot to keep it moist. It does seem to help keep it moist but it still has the weird feeling. Guess that is something just to get use to.
Jackie, in all this time ( the past 4 months), I never made the connection, I just assumed it was an extension of my TN! Crazy! Ugh…I mean seriously, are all my cranial nerves compressed?
It’ll be interesting to hear what my NS sees when he goes in this brain of mine!
Well looks like the same thing is going on with the both of us....Are you going to get the surgery? I find out on the 18th when i get mine. I was scared when he said ICU and I freaked out and did not want the surgery right away but its time now, because I just cant take this constant ache.
shindig said:
YES OMG I was telling the doctor that I can't relax my face, am constantly grimacing, getting a headache, and when I force myself to relax it feels GREAT, then 5 minutes later I notice I'm doing it again. He just said, "weird".
I have a sensation down the left side of my neck as well as the face, more like a tightness feeling mixed with ache. Kinda like a tightness + painful/burning tickle feeling
Mimi, it is an extension of TN so you were correct! Still sucks!
Mimi said:
Jackie, in all this time ( the past 4 months), I never made the connection, I just assumed it was an extension of my TN! Crazy! Ugh...I mean seriously, are all my cranial nerves compressed?
It'll be interesting to hear what my NS sees when he goes in this brain of mine!
I have had severe throat pain and tongue pain (back of tongue) when I have TN flare up. Feels like razor blades in there. Difficult to swallow. Cepacol cooling lozenges or any throat numbing loz work!!!. the throat feeling makes food difficult to swallow. I go into green drink mod. Make healthy shakes. Check out Green drink.com. It has the ingredient list on the side. You can tap on to the ingred you have and it comes up with a recipe
http://healthygreendrink.com/ this is the site to get recipes for green healthy shakes
Shindig, I have had 2 doctors reply "weird" when describing my TN & GPN. It is doctor speak instead of calling us a liar or crazy to our face. It's more than ridiculous how dismissive doctors are when they are the ones that are uneducated.
shindig said:
YES OMG I was telling the doctor that I can't relax my face, am constantly grimacing, getting a headache, and when I force myself to relax it feels GREAT, then 5 minutes later I notice I'm doing it again. He just said, "weird".
I have a sensation down the left side of my neck as well as the face, more like a tightness feeling mixed with ache. Kinda like a tightness + painful/burning tickle feeling
I have the same thing with my throat but I call it my choking feeling. It does feel dry but also like something is stuck there. It is on the right side like my ATN.
I have always thought it was probably GPN too since I was diagnosed with ATN but told the throat part didn't make sense with it. I was treated for GERD for a long time and had bad reactions to all the medications - made me so loopy or else just sleep 24 hours a day. I went through that for several months before someone finally figured out they should give me Tegretol for TN which helped tremendously! I suspect I have a combo of ATN, GPN. Not sure but I've done alot of research on the internet since I know more about all of this than the doctors I have seen.
Sometimes with my throat I even gag because of the feeling. It has caused me to vomit too. I'm now on Trileptal and Nortriptylene which helps about half the time but the other half of the time I have my choking feeling along with burning and a trememdous pressure in my whole head that feels like it's going to blow up - feels like it is in a vice. Those have been my symptoms the whole time so it was very hard to diagnose and I still don't know for sure if my diagnosis is accurate.
Deej, your description is so similar to my experience. Last week I ffffffffffffinally was officially diagnosised with ATN and GPN which cause swallowing aphasia. I think your superstitions maybe correct.:)
Deej said:
I have the same thing with my throat but I call it my choking feeling. It does feel dry but also like something is stuck there. It is on the right side like my ATN.
I have always thought it was probably GPN too since I was diagnosed with ATN but told the throat part didn't make sense with it. I was treated for GERD for a long time and had bad reactions to all the medications - made me so loopy or else just sleep 24 hours a day. I went through that for several months before someone finally figured out they should give me Tegretol for TN which helped tremendously! I suspect I have a combo of ATN, GPN. Not sure but I've done alot of research on the internet since I know more about all of this than the doctors I have seen.
Sometimes with my throat I even gag because of the feeling. It has caused me to vomit too. I'm now on Trileptal and Nortriptylene which helps about half the time but the other half of the time I have my choking feeling along with burning and a trememdous pressure in my whole head that feels like it's going to blow up - feels like it is in a vice. Those have been my symptoms the whole time so it was very hard to diagnose and I still don't know for sure if my diagnosis is accurate.
I have the same issue in my throat. It always feels like I am choking or as Connie said - there is a golf ball in it. I think Jackie is correct. It sounds like many of you are explaining the common symptoms of GPN. I've noticed several others on this site with the same symptoms. When I told my neurologist about this she seemed puzzled. Check out the gpn brother (or sister :)) site to this one. I like this site better but I've been there to check out their symptoms and they are definitely the ear pain/throat issues. I also have ATN and I don't have much if any ear pain but always a wierd feeling in my throat. Don't take my advice as a diagnosis but check it out. I've found I have to research EVERYTHING because so far all the doctor's I have seen know nothing about any of this.
Mine is different, mine is tn1 style electric shocks into my throat along the left side…I can’t even describe it. Triggered by eating, talking or drinking.
Same here!!!! My nerve involved was the 9th, which is responsible for swallowing,sensation of tongue,throat,taste,etc. I found that coarse food ie toast was impossible to eat and taste changed dramatically. Cream of wheat was my friend with nothing on it!
That cleared up after a couple months post-op of MVND. But, unfortunately, 1 1/2 years later, I suffer lots of headpain/head ache and nerve pain that knocks me out of commission for days.
I feel as though I have been sliding backwards and have days that are every bit as bad as pre and initial post-op.
This is not a fun diagnosis to have. It just doesn't leave you!. I will say that the nerve pain is not as deep into my head/jaw/side of neck/throat but I still get it along the edge of the tongue and upper teeth .
I do think that TN is a cornuccoppia of lots of nerves and the entire brain. Thats what makes it such a challenge to treat. Not one size/fits all. And then there are all the side effects from the drugs that make it a challenge to be long term.
My latest regimen is Zonegren (currently at 250mg) and Diamox 250mg twice daily. Adding the Diamox helped HUGE with the crushing pressure pain I would feel on the top /front of my head. Also, when the nerve pain gets really bad, Compazine, vistaril, indocin and Tordal (injectable) help. Narcotics do nothing but make you throw up.
oh...yes, and that feeling of intense pressure like your head is going to blow-up. Its like, how can it seriously not explode with the amount of pain/pressure we feel!!!??? The DIAMOX helped HUGE with this (they use for altitude sickness. Interesting, I have complained of this exploding,pressure pain since this thing began 3 years ago and on MRI last week there was a lot of inflammation inside my skull. But labs etc 100% normal. SO there is some mechanism that is causing this in us and we have to figure out how to get relief. Since I started this protocol, I have had some days that I actually felt "normal"!
I say some days because my doc backed me down from daily to 2x/week and then the pressure came back. Im back up to twice a day!
i get a spasm in my throat sometimes its not painful but scary i didnt have it before the meds so not sure whats going on