Hi I too have type 11 TN and air travel and weather changes can frequently cause me severe pain that can last for long periods. I currently am on lyrics and then for break through pain I rely heavily on preparations that contain capacin so I have a heat pad made by Elastoplast that is pregnant end with capacin, I have capacin cream to apply to my cheek area and I have capacin nasal spray. I also sometimes take individual before the flight. My dad is an air craft engineer he has suggested call Ong the air line to ask the pilot to be aware as they apparently can be more careful with how they pressurise the air craft but I have not tried this yet best wishes to you all
grv said:
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…
Hi, if you’ve found that heat helps, which it does for me as well…
I buy packages of “hot pockets” they can be found in outdoorsy / camping type stores…when I fly I take a few of these in my purse…anytime I’m away from my home or a microwave I take these with me.
Just open the package exposé to air and within minutes it’s ready to help soothe my pain.
I place the hot pocket in a piece of thin cotton type material to protect my face and ear.
I’ve flown a lot with TN, I’ve only ever had pain once, but it wasn’t due to the air pressure or anything…
We’re all different, I hope you’re able to enjoy a holiday!
(( hugs )) Mimi
Two years ago I got on a plane for MN. I had been having nose runny/burning/forehead/teeth pain. Family though maybe sinus infection. On the plane my nose burned, ran and my ears felt like they'd blow up. I have been diagnosed and rediagnosed with Atypical. Go see phyciatrist, Diagnosed with Trig. N. Type II. Many meds. with horrific side effects. New N. as of this month has declared indeed .T.N. bilateral. Will do botox injections. used for migraines, gave anti inflamm. an arthritis med. Don't have that. he doesn't believe in pain management. So two yrs. Klonasapam, three months Percocet, shrug!!!! He did say he would ask for MRI's, refer me to neurosurgeon if they find a site where maybe a surgery, then Gabba Knife???? I just go along. Drank lots of wine on that flight. Helped. Having said that wine, coffee, sugar's are all triggers. Don't do that much anymore. You have to live, travel, and sometimes suffer for it. I just sleep for a day with meds. and I'm usually functional enough. Just my story. I've traveled a few times and made it through.
I agree that you need a vacation. I live in Denver, 5280 feet high. My TN and AD are really not any different than most people. I have flown a lot since this all started 5 years ago. My son is an MD and he has me take a valium. No only does it relax you but there is a chemical in Valium that helps those who get ear pain while flying. I really think that most people who get any type of reaction are mostly stressed out. We all get stressed going out of town. All of the planning, and the packing, the hurry hurry to get to airport, parking the car, getting thru security and then the long walk to the gate. That is enough for a very healthy person to get some pain in the head or face. Just take your time. Do things early in the week like packing, leave very early for the airport. These things will lower the stress.
Just be calm, take your meds in your purse, and have a glass of wine on the flght and have a good time.
I fly a fair bit. I find if you ensure you have clear ears and sinus - steroid sprays usually or plain old cold and flu tablets a few hours before the flight, things tend to be ok. I also tend to use noise cancelling headphones a lot, not just on planes, but on trains, or anywhere else where there's a lot of noise, the bud type. This also seems to help a bit.
Like many replies I have flown for years with Type 1 & Type 2 before my MVD. I live in Denver and truthfully, if I traveled to anywhere with a lower elevation, especially a warm destination I'd find my symptoms were better! Altitude and air pressure can impact your symptoms. As my neurosurgeon described to me, the airplane cabin pressure is the equivalent of 8,000 feet altitude which is even higher than Denver so at times I would have increased symptoms when I got home if I traveled internationally. Ironically, if that same trip was for vacation versus business I didn't seem to suffer so much so my opinion is attitude has as much impact at altitude!
Grandmasdream, I like your opinion regarding attitude impacting your pain as much as altitude. I have tried for almost 2 years to find out what could be done for my ATN and atypical GN. Traveled out of town twice and have since settled down to using a combination of meds that are somewhat helpful and the stress and anxiety has decreased. So has my pain. I do get ears that plug up and have pressure in them. I don't think I would like to fly but I would try meds that someone who has ear problems would use, sudefed is one of them. You probably have to readjust to the altitude in Denver if you take a vacation in Florida where I live. I have always found changing my environment like spending time with my grandchildren always gives me a different perception of the face pain.
When I realized there was nothing on the horizon like a surgery that would just fix it my daughter asked me if I could move on and learn how to live with it and restart my usual routine. I am disabled from failed back surgery but enjoy painting and babysitting my grands, so I did just that and this pain no longer controlled me.
We do get doctors that look at us like we have some type of depression or emotional problems and should seek help with therapy. I have found this support group to be my therapy. Many new comers arrive on this site completely consumed by this pain and then calm down when they realize they are not alone. I found PNS, peripheral nerve stimulation, being discussed on a page and this is the treatment I am interested in getting for this pain.
You must have grandchildren with your name, I am called "Granny", but my grandkids say it like this, "Grannnneeeee"! It is wonderful to be greeted by them and they grab my hand to take me to play with them. Sharon
I am a Grandma of 4 from ages 7 months to 5 years! I agree with you that there's nothing like the joy of hearing the enthusiasm of your grandchild when they great you - it's definitely our reward for not disowning our teenagers!
Congratulations on finding a way not to allow your TN and failed back surgery from controlling your life. I was fortunate to be a candidate for the MVD surgery and while it was scarey to have brain surgery I am grateful for the new release on life it gave me.
Grandmasdream, the same to you, my grands are 1, 2, and 3 years old. I have 2 grandsons and the third was a grandaughter, so I have been blessed! Granny
The travel itself does not make me hurt. But when I am getting ready to go anywhere, it involves a lot of head position change, and when my face is facing down, as in tying shoes or changing socks or picking up change that I have dropped, gravity tugs on my face which pulls the V2 branch of the trigeminal nerve, and the stabbing pain begins.