Please don’t take my comments as criticism Fred, I knew very little (still learning! ) when I was diagnosed. It is only through observation. I meant no offence. I have never heard about the mid face pain area before. Again I have read about lots of areas of the face being affected. It just goes to show that Dr’s are often ill informed about our condition. It is little wonder WE ARE confused. And please know I am a million miles from an expert. You could write my knowledge on a matchbook! There are so many varieties of pain within our condition that it definitely baffles me and many more.
Fred (a_Cuppa_Coffee) said:
Thanks Jackie,
I am definitely no expert at TN, I was basing my advice on things I had read online and questioning that my Neurologist had given me when I was diagnosed. He kept making sure that I was only experiencing things on one side of my face and only to the midline. He advised me that if it was occurring on both sides it was likely something else and not TN. Again, I am new to this though.
Fred
Jackie said:
Fred during my membership I have met many people with pain on both sides. A very eminent professor has looked at my MRI and warned me it could go bilateral. It has now started to be true. I am showing signs of Type I on the right and Type II on the left. My Type I manifests mainly in the second tooth inwards. My very good friend on here also has bilateral. TN is rare and bilateral is even rarer but sorry to report it does exist. Red? care to join in? Fred (a_Cuppa_Coffee) said:
Gazuk,
Mine started with a permanent headache on the right side. Then, about a month after the headache began and never went away I started getting a numb/tingling feeling from the right corner of my mouth to the middle…never from the left. I feel it everyday, all day now. It has progressively gotten worse. I am still learning a lot about TN, but it is important to note that if you are experiencing TN it will only occur on one side and only to the center of your face on that side. It is unlikely that you are experiencing damage to your Trigeminal Nerve on both sides of your head. I have gotten the electrical zaps before as well, it was during December of this past year. When mine did that it occurred several times a day and was accompanied by a sensation of rain drops hitting my cheek.
I have TN Type 2. The TN experience is very different for everyone, yet with commonalities for all. I wish you luck with yours.
I was not offended. I would have been hesitant, though, to advise Gazuk that it likely does not occur on both sides if I had seen that we have a Bilateral TN group here on our site. You are right though that a lot of doctors seem ill-informed about this disorder. My first Neuro kept telling me that everything I experience could be explained by cluster headaches. We obviously know that is not the case. Just as my TN2 shows me new tricks all the time, I am also learning new things about TN (in general) on a daily basis.
hi vesper, i wouldnt say they was painful as such because only lasted a second it was more of a shock to me like woah what was that not like a deep pain where i thought wow that hurt, but i suppose if it lasted longer like minutes then it would be painful
dont panic. bilateral TN due to vascular compression is statistically rare. there are some systemic conditions which can cause bilateral symptoms, but even then, face pain is not usually the first symptom.
if it were me, i'd request some blood work to check some basic things; electrolytes, blood sugar, thyroid, and ANA levels (auto immune disorder screening) to start.
i'm not a doctor, you should speak to your own about what i have discussed here.
oh is that because its rare that both nerves pressing against whatever it is at same time? im having blood test anyway monday to test for diabetes etc,
Gazuk, I am sorry that you are going through this. I would agree with Vesper: Try not to panic. It's easier said than done, I know. This may be a one off (or a two off, as the case may be), or it may never get any worse than weird random shocks now and again.
In my own case, I had right-sided pain intermittently for two weeks when I was 33 and then it switched to the left side around a year later. The pain on the left side led to an extraction of the far back molar (which was broken in half) but the pain never entirely went away. I had spates of pain here and there over the years (which were usually attributed to sinus infections or fractured teeth) and for the last year and a half have had migrating bilateral tooth pain during most of my waking hours. My situation differs from most people here, though, in that I was thrown across three lanes of traffic and landed on my head after being hit by a car. This likely caused the fractured teeth that may or may not have lead to my TN. My dental and TN issues may be separate entities, but they are certainly entwined.
When I first found this site, I was astonished to see how many people had been dealing with this for years, when I didn't know how on earth I was going to make it through the next hour. Rather than becoming disheartened by this, however, I was inspired to know that I could have a full life even with TN in it. There are so many strong and courageous people here who have done just that, and you can too. I won't pretend that it's easy, but you will figure it out, I know it.
Welcome aboard! My first attack was very much like Jackie's. In my case, I woke up about 3am (12-22-09) with shocking electric bursts of intense pain (focused near my lower-left gum-line) which I'd NEVER had anything close to in my life. I had no idea what was happening--
Though I'd never had either, I knew enough about stroke and heart attack through reading, etc., to know that wasn't happening...The next morning, after about 10 minutes of sleep and plenty of time to rationalize, it became obvious at dawn that I was being TASER'd in the face by an invisible demon from hell. That is when my quest for more knowledge about this horror began. A Google search led me here, which led me to my neurologist and a medication known as GABAPENTIN. I'm now trying to calibrate the dose-levels of this medication with what I need to get accomplished day-by-day. I think things are getting better, thanks to this medication and the vast knowledge available here at this Forum.
I hope you never have another attack, gazuk. But should you ever, please "don't touch that dial" and continue to stay-tuned-in right here. "Hang in there", my young Brother! Rick
that's correct. bilateral compression is not usual or customary for TN.
ask your doctor to check your ANA levels in your blood work and your thyroid. ANA levels look for possible auto immune disorders which can cause a host of bilateral symptoms. thyroid conditions can sometimes cause vascular pain felt in the face.
good luck,
vesper
gazuk said:
oh is that because its rare that both nerves pressing against whatever it is at same time? im having blood test anyway monday to test for diabetes etc,
hi Chris & Rick thank you for your kind words i hope you are both well, im seeing the doctor next week and hoping i can see a nuerologist etc to see if they can find anything
Exactly how my pain started while eating lasting for second with a severe jolt.
It was so quick I could not understand. Saw dentist, nothing found wrong.
Than suddenly the pain gone for about 8 months but came back with increased severity,
I was put on Dilantin by neuro, I was not regular in taking it & ultimately after about 2 years had surgery.
Yes the pain has stopped permanently. But with terrible side effects my r/side face is numb since surgery in 1965.
The surgeon had cut the 2nd & 3rd div of TN nerve. I was too young than & went for surgery in haste. I did not give the medicine enough time to work as I was fed up of pain.
You must explore all the possibility with medicine first, see neurophysician rather than surgeon, there are so many alternate medicines that have come up since 1965 which are capable of controlling pain. Some time taken in comination as per the advice of ur Neuro.
The surgery should be decided only when all efforts thru med has failed or th
When the drugs are interfering with other organs of the body. U r also likely to get remmission for varying period sometimes lasting over a year.
I wish U good luck
Yes the pain has stopped permanently. But with terrible side effects my r/side face is numb since surgery in 1965.
The surgeon had cut the 2nd & 3rd div of TN nerve. I was too young than & went for surgery in haste. I did not give the medicine enough time to work as I was fed up of pain.
You must explore all the possibility with medicine first, see neurophysician rather than surgeon, there are so many alternate medicines that have come up since 1965 which are capable of controlling pain. Some time taken in comination as per the advice of ur Neuro.
The surgery should be decided only when all efforts thru med has failed or th
When the drugs are interfering with other organs of the body. U r also likely to get remmission for varying period sometimes lasting over a year.
I wish U good luck
thanks yakub =] thats true alot of new medicens and surgery has happened in 40 years so in the next 40 years things can only get better for TN sufferers, maybe even one day a pill or something that will stop it all together =]
Yes, at least in my case that is true, my left side pain started in 1974 just prior to onset I was continuously under stress for about 6 months during which there were moments of heated arguments, ultimately I just ended up with pain first felt while washing face with cold water.
During my discussion with neurologist he agreed that this anxious moments could have triggered the nerve. Though generally it is believed that no cause is known for TN but only people who suffer can realise what could have brought this on. But once on it stays with u for life time.
gazuk said:
i have also read that shooting stabbing pains in the face can also be symptoms of anxiety =/
im lucky at the moment that i have only had 2 pains over the space of 3 months lasting a total of prob 3-4 seconds and havn't had any pain or triggers on my face to make the pain start again even if i rub, touch, pinch my face or inside my mouth/cheeks i can even put ice on my face and feel no pain just cold
today i have had wierd tickle/ itchy feeling on my scalp and parts of my face but when i touch or scratch it it goes away for a while so it wasnt permanent =/ im also getting the same feeling all over my body all the way down to my feet some times feeling like little pin pricks i dont know it this is TN related but im so confused and scared with what is happening to me