Anyone out there have tips on how to manage TN episodes while traveling?
Having trouble in 2 areas
(1) on the plane ride - the pressure changes seemed to be worse than the cold weather. Also my ears just have not popped (feel clogged - prob from a slight cold), which is also aggravating this episode. Any ideas on making air travel manageable?
(2) hotels - being a new, strange environment seems to also trigger unease and I have been unable to get comfortable and rest all while on the road. is this completely whack?
I used to be such a solid road warrior so I am struggling a bit trying to adapt. Just completed a whirlwind trip out/back in less than 2 days and am home, but am still wigging out a bit and thus cannot sleep at all. Please help as I need to figure this out
Hi, Albee! Sorry to hear of the inconvenience of this thing on the plane ride. I flew to Baltimore to have my MVD done by Dr. Carson at Johns Hopkins. On the way there I was very medicated. I had had 2 Gamma Knifes and the first time they had the radiation on for 30 minutes at a low level. In 7 months the pain returned, but worse than before because of the damage from the burn. Now there was ATN type pain on top of the sharp episodes. So, being a scared-e-cat, I ran back to the GK folks and asked if another radiation burn would do the trick. They wanted to send me to OHSU to see Dr. Burcheil, but I was way too scared. My little ones could not even get dressed by themselves, tie their shoes, etc. I could not fathom coming home from a MVD in a wheel chair unable to be a good mom to them. So, again the GK was scheduled. This time they moved the laser focus to 1/2 inch from the first burn. They left it on for one hour, but kept the level pretty low. Again in about 3 months I was on advil only for headache-e type pain. When the pain returned in 10 months, I was on a plane to Baltimore. I was ready now and felt 100% comfortable with my choice for the MVD. Even with the high level of neurontin and a low level pain med, the pressure killed the nerve. I was tempted to have a few drinks to see if it would help, but did not. I just used my neck pillow, laid back and tried to imagine a life without this pain.
On the flight back I had post surgery meds … vicodine instead of oxy. I specifically asked for a low level pain med for fear of addiction. Should have taken the docs lead and taken the oxy. The plane ride was hard. But it was the 6 inch scar that was the problem with the plane ride. The TN had been stopped in it's tracks. There was a little tingling but that was it. As the days passed the ATN type pain remained while the stabbing pain in my ear had disappeared.
I took my pillowcase along with me to the hotel, and some clothes that belonged to my babies. (They smelled so good when they were toddlers!) The pillowcase and their clothing saved me. It was smell from home and gave me a lot of comfort before and the few days after that we stayed in a hotel. Since our sense of smell is the highest of all of our senses, it helps to have the "smell' of home to help calm the nerves and settle down and rest. Perhaps you burn candles at home with a favorite spice? Bringing one along to a hotel may help? Take care, Albee! I will keep praying for you! Sincerely, LyndaS
Oh...really didn't think about this...will be traveling to NC in a couple of weeks and will be there for 5 days...pressure in the airplane??? uggh. More discomfort??? ohhh. Am going to see a neuro for the first visit this coming Tuesday - will DEFINITELY mention this to him! Thanks so much for talking about this! Bless your heart, my friend! Take care Albee -
You may not have the same problems Albee had but certainly prepare as you can just in case. I travel a ton for work and have never had any extra issues due to flying and the pressure etc. Perhaps I'm just lucky or perhaps it's the cocktail or two I that I usually get in the lounge before I get on the plane ;)
Albee - I certainly sympathize. I can only imagine how much more this would suck if I had travel issues as on top of the regular pain.
ummm...good idea to 'prep' for the trip (in the lounge) Todd... :) - so glad to hear the pressure / temp changes aren't something to EXPECT trouble with.
thank you for the tips here, i created a photo book of my family and fun places that I will take with me. That should help, also bring some lil things that maybe I could put in the room. May try the pillowcase to, thats a good one.
As for the plane, I bought these new ear plugs called earplanes that should help and I think I will be sure to take some sort of extra strength cold medicine + mucinex if traveling by plane again with a cold