Next week will be my official two year diagnosis for TN/CH. From that time to now on the right side of my face it has the sensation of numbness and swollen as if my face is deformed. I know it's not because for a fact I look into a mirror and know this. Then it has a nerve to get worse everytime wind blows on my face or especially travelling in any vehicle. Sometime around my eye,cheek, noise and corner of my mouth feels extremely tight as if I had a shot of Botox!
The only time I don't feel this is when I am having an TN or CH attack.
Yes! The left outer feeling of the left side of my face has been numb since 2008. It's a horrible feeling and sometimes I hate it more than the pain. Wind, AC, window down in the car - exactly like you said. I also feel like my face is huge on the left side and that everybody must see it to, but it's just a nerve sending signals to my brain that I cannot ignore or control.
I sleep like a mummy, with something wrapped around my jaw. I have had botox shot into the left side of my face, which didn't touch the pain but left my face drooped and even more numb for a couple months.
Do you know how you acquired TN and what do you take?
Sorry, this is a little lengthily so read when you can and Thank you for letting me share! Back in 1996 I was diagnosed with Bell Palsy, Vertigo and Tinnitus. Then around yr 2000 I started getting these bad headaches, nothing ever showed back then on a MRI so I took a lot of Motrin and painkillers to the point that I also have G.E.R.D. Two weeks prior to July 7th 2010 I was going through a extremely stressful situations that was bringing on my twitching on the left side of face (Bell Palsy) and pain on the right side. So on July 7th at 9:35 pm while I was watching TV all of a sudden my right side of face started to pull inwards. I thought I was having a stroke and started to panic. It was like watching a horror show. The hospital gave me steroid right away thinking it was a Belly Palsy attack. Thank God my face did not stay pulled in like I had a huge whole in my face! So after 4 months of testing then the MRI showed that my Trigeminal Nerve (3 branches damaged). After being in pain every single day 24/7 I thought I was just going to die. After weeks I started noticing the pain increasing from the electric shocks and stabbing on the right side of the face and head to the gripping, muscle spasm and stabbing on the left side of head! Finally after a second opinion and more test and three months of trial medication I was diagnosis with TN with Cluster Headaches and of course the numbness with a heavy hand feeling on my right side of face which the second Doctor told me too that it is false signals going to my brain. I've been taking Amitriptyline 30mg at night and painkillers as needed at night also plus a lot of Advil for the last two years
In 2005 I woke up with my whole left side of my head completely numb, face, cheek, scalp, tongue, gums, everything. A first I thought I had a stroke, but I could move. Then I thought I had Bells Palsy but I could move my face. After two MRIs the nuero said he couldn't find what was wrong. He said something was irritating the trigeminal nerve but couldn't tell what. He said that it could go away in a couple of weeks or maybe a couple of months. About a year and a later it started to get better. After about three years it went down to about 10% of what it was, and is still there today. If I get stressed or do strenuous work it flares up. My left side of my face was swollen and still gets swollen. I feel the numbness all the time but it is not painful in itself, but it is part of the TN.
The cyst is there from birth and is related to spinabifida I am told
From my very first scan in 2004 it was a very small (pea sized) thing and no issue from it but in 2010 I lost sensation in the left hand side of my face and it had grown to the size of an apricot or similar.
I had an MVD in 2006 and it has given some relife then strange numbness which grew worse and worse which as above was diagnosed as the cyst in 2010. as soon as the cyst was removed the numbness went away.
The biggest problem was my toung going numb on the left half. very scary as I was slurring my words and i had face droop.
The removal of the cyst was easy and they offered to do it while I was awake. I said No thanks Knock me out!!
I understand that this is not really related but any external pressure etx on a branch of the TN will cause big issues
That was the problem with my MRI that it did not show anything other than the Trigeminal Nerve damages, no cyst. Plus the numbness, tightness or swollen sensation never goes away. It has not gotten worse or better over the last two years. It just is what it is, for now anyways. Take care and I wish you well.
SimonL said:
Hi TNNME
I had the same sypmtoms but the cause of my facial numbness including the toung was due to a Tornwald Cyst
The cyst is there from birth and is related to spinabifida I am told
From my very first scan in 2004 it was a very small (pea sized) thing and no issue from it but in 2010 I lost sensation in the left hand side of my face and it had grown to the size of an apricot or similar.
I had an MVD in 2006 and it has given some relife then strange numbness which grew worse and worse which as above was diagnosed as the cyst in 2010. as soon as the cyst was removed the numbness went away.
The biggest problem was my toung going numb on the left half. very scary as I was slurring my words and i had face droop.
The removal of the cyst was easy and they offered to do it while I was awake. I said No thanks Knock me out!!
I understand that this is not really related but any external pressure etx on a branch of the TN will cause big issues
Thanks Scott! I always knew that it could possibly be the TN because the sensations started with the first attack and never left. The Dr's were more concern with managing the pain and not the symptoms. I mean it's great to manage the pain but it took a long time to get use to my face feeling deformed. Just recently from this wonderful site I know now that I am not alone with these symptoms. Thank you again, TNNME
Scott said:
Greetings TNNME,
In 2005 I woke up with my whole left side of my head completely numb, face, cheek, scalp, tongue, gums, everything. A first I thought I had a stroke, but I could move. Then I thought I had Bells Palsy but I could move my face. After two MRIs the nuero said he couldn't find what was wrong. He said something was irritating the trigeminal nerve but couldn't tell what. He said that it could go away in a couple of weeks or maybe a couple of months. About a year and a later it started to get better. After about three years it went down to about 10% of what it was, and is still there today. If I get stressed or do strenuous work it flares up. My left side of my face was swollen and still gets swollen. I feel the numbness all the time but it is not painful in itself, but it is part of the TN.
I found this site because I had started to get tingling along right side of tongue and loud buzz in right ear. Last couple of days my right eyelid flickers? Is that normal? I don't come on much as i have alot of work on at the moment. Is hard some days when I am so tired. Winter grrrrr. Hope you are well and recovered from your surgery?
SimonL said:
Hi TNNME
I had the same sypmtoms but the cause of my facial numbness including the toung was due to a Tornwald Cyst
The cyst is there from birth and is related to spinabifida I am told
From my very first scan in 2004 it was a very small (pea sized) thing and no issue from it but in 2010 I lost sensation in the left hand side of my face and it had grown to the size of an apricot or similar.
I had an MVD in 2006 and it has given some relife then strange numbness which grew worse and worse which as above was diagnosed as the cyst in 2010. as soon as the cyst was removed the numbness went away.
The biggest problem was my toung going numb on the left half. very scary as I was slurring my words and i had face droop.
The removal of the cyst was easy and they offered to do it while I was awake. I said No thanks Knock me out!!
I understand that this is not really related but any external pressure etx on a branch of the TN will cause big issues
The Cyst surgury was a success and showed results immidiatly. (2010). I was back to normal in 3 weeks.
(Well I still had TN ) But the face droop and numbness was resolved. I could talk again.
BUT I had a proceedure on my back last week and they did radio frequency Nurotomy (I have mentioned it elsewhere)
This was on friday a week ago, It has still not calmed down and is causing pain. Having said that the pain level is nothing comaparied with TN. I am now wondering if the fact they worked on my nerves Facet join nerves shows that its not just my face and TN that is touchy or subject to over reaction.
Oh and winter is never Fun is it? we had -1 deg and living in a queenslander ment that it was not much warmer inside. I just wanted to stay in my warm bedroom and not come out till the sun showed its self and warmmed the place.
Chris said:
Hi Simon,
I found this site because I had started to get tingling along right side of tongue and loud buzz in right ear. Last couple of days my right eyelid flickers? Is that normal? I don't come on much as i have alot of work on at the moment. Is hard some days when I am so tired. Winter grrrrr. Hope you are well and recovered from your surgery?
SimonL said:
Hi TNNME
I had the same sypmtoms but the cause of my facial numbness including the toung was due to a Tornwald Cyst
The cyst is there from birth and is related to spinabifida I am told
From my very first scan in 2004 it was a very small (pea sized) thing and no issue from it but in 2010 I lost sensation in the left hand side of my face and it had grown to the size of an apricot or similar.
I had an MVD in 2006 and it has given some relife then strange numbness which grew worse and worse which as above was diagnosed as the cyst in 2010. as soon as the cyst was removed the numbness went away.
The biggest problem was my toung going numb on the left half. very scary as I was slurring my words and i had face droop.
The removal of the cyst was easy and they offered to do it while I was awake. I said No thanks Knock me out!!
I understand that this is not really related but any external pressure etx on a branch of the TN will cause big issues
Did your surgery go well? Anything new happening with TN etc from neurosurgery?Ashame it triggered the TN bad. I hate the cold and love summer better. Been waking up from the cold. I dont have reverse cycle aircon. So bought a little blow dryer and warm room up before I go to bed.
When the pain was out of control I get pins and needles down right arm. Main reason I stopped doing wedding photography. Starts at lower jaw and then down neck and then down my arm:( i couldnt do much at all. Pain specialist told me that swelling from Tn causes the trouble with my arm. I did drop a few things and was embarrasing:( At least never dropped my good cameras.
This week my bottom eyelids flickers and just below that area as well. Think because the cold weather had been bad that all these new affects might be from the cold?
Well me tired and have another baby session tomorrow morning. All the best
SimonL said:
Hi Chris
The Cyst surgury was a success and showed results immidiatly. (2010). I was back to normal in 3 weeks.
(Well I still had TN ) But the face droop and numbness was resolved. I could talk again.
BUT I had a proceedure on my back last week and they did radio frequency Nurotomy (I have mentioned it elsewhere)
This was on friday a week ago, It has still not calmed down and is causing pain. Having said that the pain level is nothing comaparied with TN. I am now wondering if the fact they worked on my nerves Facet join nerves shows that its not just my face and TN that is touchy or subject to over reaction.
Oh and winter is never Fun is it? we had -1 deg and living in a queenslander ment that it was not much warmer inside. I just wanted to stay in my warm bedroom and not come out till the sun showed its self and warmmed the place.
Chris said:
Hi Simon,
I found this site because I had started to get tingling along right side of tongue and loud buzz in right ear. Last couple of days my right eyelid flickers? Is that normal? I don't come on much as i have alot of work on at the moment. Is hard some days when I am so tired. Winter grrrrr. Hope you are well and recovered from your surgery?
SimonL said:
Hi TNNME
I had the same sypmtoms but the cause of my facial numbness including the toung was due to a Tornwald Cyst
The cyst is there from birth and is related to spinabifida I am told
From my very first scan in 2004 it was a very small (pea sized) thing and no issue from it but in 2010 I lost sensation in the left hand side of my face and it had grown to the size of an apricot or similar.
I had an MVD in 2006 and it has given some relife then strange numbness which grew worse and worse which as above was diagnosed as the cyst in 2010. as soon as the cyst was removed the numbness went away.
The biggest problem was my toung going numb on the left half. very scary as I was slurring my words and i had face droop.
The removal of the cyst was easy and they offered to do it while I was awake. I said No thanks Knock me out!!
I understand that this is not really related but any external pressure etx on a branch of the TN will cause big issues