Flying with TN

This past November, I had what I would consider to be an "incident" where I traveled out of town for a work event.  The first day was fine (full of meetings, etc).  The next day, woke up with facial pain (I thought of it as a migraine), and nausea.   Eventually, the pain was so bad that I had to leave the office, and was vomiting before I could even get to the hotel.  This lasted all afternoon.  Since then, I've had approx 4 of these "incidences"... and they only occur when I travel out of town.  I initially thought it was TMJ (which I was diagnosed with after cracking a tooth a year ago).  I also had to have that tooth extracted (back tooth) and had an implant put in.  I had never dealt with any of this prior to that process.  The last two "incidences" were horrifying... my parents had to actually retrieve me from one of the events (and i"m 38 years old), a I not only have facial pain and headache, but non-stop vomiting and nausea.  Because I assumed this was TMJ, I began taking pain meds on the night after my first meetings, to prevent the next day's reaction.  This helped for two out of town events, but on the last, it did not help at all.  I don't know if it's long drives or what, but this NEVER happens at home.  Basically, I can feel a dull ache at home (especially after this last time), but I don't have the blow ups that happen to me when I'm out of town.  Your post about this happening only when you fly is the closest thing I"ve seen to what is happening to me.  Please keep me posted on what helps you.  I'm having a brain scan next week, and am going to a physical therapist who specializes in cranial/facial pain management. Thank you.

i got my first TN attack when flying to Johannesburg and then got them nearly every time since. The only time i haven't had it was when i flew on a new A380 and the Boeing Dreamliner so it seems to not affect me on the new aircrafts. Must have something to do with the cabin pressure.

hi thanks for sharing your experiences. i was terrified to fly even though my consultant said because my TN was stable with medication, i should go on a short flight to try again. i was terrified but decided to try or give up going on holiday. The flight was only an hour to London and i had already decided i could get the train home should i suffer an attack. All went well and since then I have been on a return 2 and a half hour flight, again with no effects. We are planning a long haul flight next year but I am already feeling worried incase the length of time flying triggers an attack. i did have to increase my meds a few days before i flew so i will check with my consultant about the long haul flight. I hope you get relief for your TN and feel stronger to attempt another flight if you want to. Thanks for all the information its very interesting and worth researching. Good luck.

hi Betty, reading your post is comforting (sort of) because now i know Im not going mad. I have had 3 awful but thankfully brief episodes of what i think is TM. All on planes. I will be flying from AUSTRALIA to Costa Rica and I'm not looking forward to it. Wondering if you have had any relief? any tips? medication you'd recommend? I used to fly alot and no probs, now im 51 and it seems im mote susceptible .

hope you're well, Melissa

thanks BETTY, I hope I have nothing significant to report. Cheers

Hi Betty! Everything I read here gave me some good insight about flying. I've had Trigeminal Neuralgia for twelve years and for the first nine I didn't think twice about it (flying) and never had an attack in the air. My position on the subject has since changed. Three years ago I had a TN attack that 'RAGED' for days into weeks and another one this past January. I been on a liquid diet since 2016 and a month ago finally had the MVD brain surgery. It's not guaranteed but it may stop the excruciating episodes and allow me to eat again. This brings me to the reason I'm posting. Earlier today I read something that is actually quite uplifting (not like my ranting)!A family whose child has TN (and has had two MVD brain surgeries) travels all over the world by plane! It's a wonderfully inspiring webpage-blog.....whatever you call it....that could maybe get people back in the air. For me, I'm scared to death but I'm still healing and getting twinges and baby (6 on the pain scale) shocks. Her page is called WanderToes. and the girls name is Megan. I hope everyone reads it. Sincerely, Laura

Hi everyone

just googled TM and flying and found you.I flew last July with some twinges in a lower left side tooth.I flew a month later with a few more twinges.I thought it was a bad tooth so took some painkillers for the flight home.Got the twinges while getting up to cruising altitude then suddenly I felt like I had been stabbed down my tooth with a red hot poker...and it went on and on torturing me.I was shouting,sweating, writhing in my seat,generally begging the cabin crew to land the plane and making an exhibition of myself.My partner bought me 3 double brandies and I took any pai nkillers i was offered by other sympathetic passeengers.I begged for some ice from neighbouring drinks.After 15 or so mins the pain subsided a little and had gone by the time we landed.

this was a year ago.My teeth were and are sound.I still have flashbacks and are having TFT and hypnotherapy to try and get over it.I now get twinges and a kind of sensation that is just below pain but live with the fear it might happen again.

I havent been diagnosed with TN but as my teeth ate fine I dont know what else it voild be.I cannot envisage ever risking another flight.My sympathies are with anyone who has had an experience like this

Hi Betty,

I have had confirmed TN for 7 years but had had dental problems for about 5 years previously. My dentist could not find any reason for my tooth aches and eventually suggested it could be TN, then 7 years ago I had the really awful electric pain. I have not flown since, my TN is always worse with weather changes especially when there is low pressure - 1000 or lower because of this and the air pressure in planes I feel I cannot risk flying. I also have MS.

We have just become used to only driving everywhere. We live in England and 1 of our sons lives in Germany, we always take a ferry and drive.

I have had Gammer Knife surgery, which has helped but I am told it won't last forever. I am so frightened of it coming back, mine was so bad it lasted for days and I would end up in hospital dehydrated because I could not drink anything.

I hope this is of use for you and I wish you the very best of good luck with this appalling condition. My love and thoughts for you.

Sally

Thanks Sally. My TN is not at your stage yet as things have improved with the medication I have. I have been able to fly again but increase the dose that I take, the day before flying. Every flight I take makes me very anxious in case it happens again. life just now is fine with the TN but I am always aware that any twinge in my mouth could be it getting worse which I am sure will happen eventually. I Hope you stay stable and if it came to taking ferries etc I certainly would do in the future too. Good luck x

I also have recently have flown and my TRIGEMINAL Neuralgia has been reactivated. It's painful and very limiting. i have had two brain surgeries to help fix this problem and the last one was successful. i have been shock free for 3 years until my recent flight and then the shocks began again. It is more then upsetting. i have shocks while eating my meals, brushing my teeth, they wake me up while sleeping, they are painful. I am hoping and praying these shocks are temporary.