I'd appreciate hearing from anyone who has been on a plane with atypical TN. I haven't traveled since before this started. One of my friends is encouraging me to go away with her for a few days next summer which would involve air travel. I've noticed that since I got this when I go anywhere and there's an altitude change - even something as minor as driving up and down hills, it sets off shocking pains and more aching. Maybe because of air pressure changes?
I have a feeling it could be a problem. There's not much point to a vacation if I spend the whole time in a hotel room with a pillow over my face. And then have to face a return trip home. I'm not on any meds - I'm allergic to or get sick from almost everything out there, including most over the counter pain relief. I rely on my heating pad and a quiet life these days. Any advice?
Have you tried lidocaine face patches…? Can be 12 hour relief … There is also lidocaine cream… But you just have to put it on more often… If you are not allergic to novacaine, you should not be allergic to these!
Try and let us know if you can plan a much needed vacation…THERE IS HOPE!
I have ATN and atypical GN which is the one with the ear pain. I don't get stabbing pain but it started with stabbing pain. Mine is more constant 24/7 building in intensity. I get plugged ears and ear pressure. I also have a history of tmj and surgery in '86. So, my answer to you regarding plane travel is "YES", barometric pressure changes can flare up my ATN and GN and those are just the changes with the weather. At this time I am not planning to fly on a plane although there are meds you can take for ear problems before flying but that is ear problems, not GN. I hope you do get to take a trip. But this lady is going by train. Sharon
Speaking for myself, I have traveled extensively by air since my TN started, and I find no difference between air travel and motor travel. There is evidence that anxiety exacerbates the pain, and my wife claims that my pain worsens as I prepare for the trip. So, the more you worry about it, the worse it might be. Maybe?.
I do think that stress brings on the pain more, but we live in the Rocky Mnts and going to the mountains from Denver and back causes excess pain for a couple of days each trip. Flying has been unbearable for me. I have had TN type 2 for over 18 years. Unable to find anything that works.....
I have TN2 left side TN1 right side with ear pain both sides. I fly a lot. I use a compound cream (lidocian, ketaprohen, ketomine) and put it on before boarding. The ache increases during take off and landings but seems to level out during the flight. I have not noticed that it increased the jabs. What I have noticed is that once I have landed I feel better. I first thought the flight had something to do with my feeling better. I have since determined I am always flying into a warmer drier place and it's the climate that is making a difference. I would trade 5 hours at a 10 to get a week at a 5. I call my trips running away from the pain. If I have plans to run away from it I can manage better when I have to live with it.
I always have nucynta ready to take should I need it on the plane. I have never needed to take it. I live in Michigan. Best location for me was Ajijic Mexico. I was there a month in April. It never rained. I was able to walk around town, talk and smile. Second best place was Mesa Az in October. Windy tropical islands like Jamaica didn't help as much as the hot dessert areas.
I flew to both Aruba, Mexico & Florida with no problem. I was in a remission state all 3 times and it didn't return for months later, so I think you should be fine. You need a vacation when suffering with TN. Enjoy yourself
Hi, I couldn't go to see my sister this year, (France from UK), as I was in such a state. I read of a couple of things to try next time. Unfortunately, I must search again as I've forgotten the 2nd suggestion, but the first one was to use the swimming ear plugs before boarding and take them out after ascending or, leave them in till you've landed. No-one had suggested this before so, for me, it'll me worth a try. (I will still take my medication mixture - the usual amitriptyline, tramadol and ibubrofen + paroxetine, and lorazepam for sleeping). Good luck for us all! Dove
I, too, have ATN and have travelled a lot since it started, even some really long flights, 15+ hours. I have had occasions on flights where I have had bad pain, but not always. I believe it is related to how quickly the planes pressurizes. I just never know if it's gonna be set off, but travel is my favourite thing, and I've had to give up so much with 5 and a half years of ATN, and I would feel totally defeated if I gave up travel, too! I have 10% oral lidocaine spray that I take with me everywhere, and I have it in the seat pocket on the plane for emergency flare-ups. If you have all your stand by stuff on hand, you should be okay. For me, muscle relaxants help, perhaps because when I'm tense, the ache is worse, so I take one of those before a flight as well. As for your heating pad, you could try those portable hand warmers that you put in gloves to replace your plug in one when you're flying, maybe. I am flying in a few weeks, another long flight from Vancouver to Hong Kong, and while I'm not exactly excited about it, there is no question that I will do it. When I get nervous about it, I just remember it's warm there now, and very cold where I live in Newfoundland, and my jaw always feels better in hotter climates. Short term pain maybe, but a gain on the other end! Good luck.
just did some traveling recently by air. air pressure is challenging, but please do not allow this to cripple you! When I fly, I bring bring freezer baggies and a small face towel. I ask for ice right away and place on the nerves, areas right away. I also bring a roll on tube of bio freeze and rub on areas. I pray for Gods strength and I fly. In our weakness and challenges, God is made perfect and shows Himself oh so strong! I was able to fly and see parents estate in the Bahamas for the first time in years, praise God!
Thank you all for your helpful advice and suggestions. This site has been a godsend for me. I'm very interested in the lidocaine patches and/or oral spray. I'm going to call my neurologist and ask for a prescription, definitely sounds worth a try.
I'm so relieved to read that some people fly with TN. I don't like admitting it but this has made me so fearful! I used to be able to go anywhere anytime, you know? So much has changed. But I won't rule out the air travel then ..... I have some time left before I need to make a decision. Stress absolutely makes it worse so of course the fear of doing something out of my comfort zone creates stress and sure enough, pain always amplifies. If I go away I'll be making myself a TN travel kit, so I have relief on hand if there's a problem because of cabin pressure and/or stress.
Wishing everyone a pain-free day!
Thanks everybody :)
I also rely on a compound cream and it has been a life saver ! (Same combo as above ). There seems to be no rhyme or reason to my flares, but stress/anxiety definitely triggers it…I have had this for three years now and simply refuse to quit doing things…(granted, when it hits it hits and I am immobilized…so, in a flare, I don’t drive…but, I do go out with people who I trust to guide me…keeps the depression away…)
Just for further edification, I have tried lidocaine patches and had no effect from them on the nerve whatsoever. The lidocaine spray I have was not prescribed by a neurologist. I went to my pharmacy and had them check their computer system to see what type of lidocaine spray they could order. They found one called Xylocaine Endotracheal spray, that is actually used in intubations to numb the throat. I then took the details to my GP and he wrote me a Rx for it. It doesn't really get deep enough to get the nerve, but it makes the whole are feel different for a while, which seems to help. Also, it tastes disgusting, so perhaps that is distracting as well?!? It works within seconds, whereas the lidocaine patches, while eventually numbing the skin surface, seemed to take a long time to do so. I have tried every possible exterior option, like capsaicin cream, acupuncture, massage therapy, hot and cold compresses, and gallixa cream, and the lidocaine spray is the only one that has any result. Like you, I don't take any medications, other than OTC analgesics, as I am prohibited from most medications due to my work. Before I found the lidocaine spray, I was ready to go on long-term disability, but since getting it, I am getting by quite well for the most part. I wish you luck!
I also have atypical TN & am a frowned flyer for work, often every week. for me, I find. I appreciable difference in flight, but I know others that do. good luck!
Hi Obsidian13, sorry to hear you have trouble with altitude. It’s too bad you are unable to take meds, so many of them for TN & ATN help a lot however have several side effects. I too have ATN and have difficulty with altitude and air travel, I of course have my meds with me. What I find helps, is taking an anxiety pill before I get on the plane or car (when we’re driving up a pass), it helps me be calm and not so nervous which in turn helps me not tense up making the pain worse. The other, is to have a jug of water, keep drinking it while you incline or decline, helps keep the pressure & ears from clogging which again will make pain worse. Hope this helps and I wish you the best of luck in your ATN journey. ~Erica
I had the same question last year when my ATN started. Heres the discussion link if it helps. I was really nervous and scared but since then I have travelled extensively, so anything is possible! hang in there!
ive tried several times to fly and it was a mistake for me it didnt happen on the plane, but that first night - bigtme pain i am not flying for now
I don't know about you, but in my case I am susceptible to TN pain if I even have the the slightest hint of nasal congestion.
By coincidence, this last October I was forced to stay home in Seattle giving up my spot at the national TN conference in San Diego because I was still recovering from a cold, something I looked forward to for years! The only thing I know about the TN symptoms in my case seems to involve some sinus blockage, Even though I have flown several times without incident, I wasn't about to risk any chance of a TN attack by getting on the flight to San Diego.
I would recommend that you carefully evaluate your individual TN symptoms and possible causes (my TN symptoms started in 1997, but I didn't understand anything about the origins of this pain until about 2003), then error on the side of caution.
Even though I missed the San Diego TN conference, I did take the precaution of buying travel insurance when booking airline tickets, so at least I have the ability to recover some of my expenses. I also made sure to get a letter from my doctor explaining exactly why I could not fly at this time.
Perhaps this option works for you.
Good luck with your travels,
My wife had geniculate neurolgia, which I assume you mean by atypical TN, Her GN was characterized by very severe deep ear pain, so sever it would cause her to pass out. We flew from California to Pittsburgh for her MVD surgery last year. The plane ride did not seem to exacerbate the GN at all, probably becuase GN doesn't actually affect ear itself.
yes i have. have had this condition my whole life but it went super nuts 10 yrs ago. i notice pressure changes on planes as well as weather affects my pain. i have my regular routine when i go anywhere which is meds so this is not for you maybe but i did have motor cortex surgery and it helped me ALOT!!! more function less meds and less pain....
i am currently getting botox injections for left over pain. it is helping...have you tried this?
i also have lidocaine nose spray for those awful up the nose brain freeze pains i get when breathing in cold air. so i numb my nose before going out or grocery shopping because i notice reaching into freezers i was breathing in cold air....
check out what you do where that causes the triggers and see if you can manipulate around some of them.
another one is bright light so i always wear sunglasses and it keeps me from squinting and less pain etc.
i made some diet changes like super low carbs and i feel better too.as you can see other treatments besides just meds.
blessings for pain free days for you...