Hi everyone, I’m hoping to get any insights or tips from you on travel.
Quick background: I haven’t had a real diagnosis yet but my pain might be characterized as atypical glossopharyngeal/ trigeminal neuralgia. Basically I’ve had consistent one-sided tongue, throat, ear pain for 6 months, plus in recent months a new lower-grade pain along my lower jaw, cheek and sometimes behind the eye. I’ve been taking gabapentin (600 mg/day) and nortriptyline (20 mg/day) which seems to dull the pain a little. Being hot or cold seems to cause the jaw/cheek pain to start up.
My question: Every August, my husband and I travel to the Magdalen Islands in the Gulf of St Lawrence (East Coast Canada) for about 3 weeks. It’s about a 5-hour plane ride (smallish plane, maybe 30 passengers) to get there. The plane ride can get very hot and/or very cold. The islands are usually quite windy and have moderate temperatures. The vacation homes are typically very modest. There’s a main town with a pharmacy and a hospital. I’m pretty worried about something happening while I’m there – something related to new levels of pain or something. I’m wondering if any of you might have any suggestions for traveling – are there any special precautions you would suggest?
My rule of thumb is to pack twice the amount of daily meds needed for any trip. When traveling I also carry at least a week’s worth (often two weeks) of meds with me/on me while in transit on the off chance something happens to my packed/checked bag.
I don’t know if this helps with nerve damage - I also have migraines and the standard for flight with migraine is to drink 8 ounces of liquid for every half hour in flight while in flight. Stay over-hydrated helps avoid migraines. They’re starting to make connections between migraines and the trigeminal nerve in general so staying hydrated won’t hurt and it might help.
If you know the flight will get chilly you may want to invest on one of those crack-and-warm glove inserts. That way if you get chilled you can hold it against your face to avoid the chill/draft.
Great advice about keeping your meds on you. I always have extra. Make sure no air is blowing on your face , wear a scarf for chilly times. I suffer daily , yet when away my mind is busy and sometimes less pain. Lots of water in your flight. Have a great trip
I travel once a week for work. I take the same precautions (take extra meds, protect myself from aggravating factors). However, I also safeguard my meds like lock them in the room safe or something else. Gaba is often abused by others and someone, like a maid in a hotel room, will swipe it the first chance they get. I do get attacks frequently on the road, but I have learned to deal with it through meds, protective measures, meditation, etc.
The old saying, We take ours elves with us wherever we go!!
Sometimes the fear of pain getting worse before traveling is enough to throw me. However, I generally do better than I think I will. Lifting heavy cases is a trigger for me, so I ask someone to help. I find If I pace my self and rest if I need works too.
Be your own best friend when traveling with others. sounds great. Enjoy and break your day into segments of moments. WW
Thank you all so much for the tips. I will have to ask the neurologist to give me a prescription for extra meds to take with me just in case. (For some reason the pharmacy here keeps track of my quantities and I can’t pick up the next round of meds unless it’s close to the time I should be running out of the current batches. I don’t think these meds are on a watch list – it’s gabapentin and nortriptyline.)
It seems like this pain is heightened whenever I’m hot or cold, and that flight does tend to get hot AND cold, so I will pack something that can be filled with ice (by the flight attendants), and also as Azzurelle suggested, maybe glove warmers. I had to book everything many months in advance, and since this pain thing seems to be worsening, I’m kind of afraid it’s going to get bad enough that I can’t travel. I’m hoping things will be okay – would be bummer not to go, and to lose all of the airfare and accommodation deposits!
Sometimes this neuralgia(?) makes it hard to think about the future – so much to get used to, although I’m finding I can learn to cope increasingly. Thank you all so very much – I will re-read your notes several times! I found your insights quite hopeful!
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sounds great. Enjoy and break your day into segments of moments. WW