Posted , 4 users are following.
hi , i was wondering if anyone feels that flights kick of their trigeminal neuralgia . ive just managed to get my pain under controlwith 2 x300mg carbamazepine but wary in case it comes back when i fly to london next month
0 likes, 6 replies
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paula76255 rosieb4u
Posted
Hi Rosie
i find vibrations of smaller aircraft a nightmare for face pain and if possible always go on an A380 as very little vibration on that.
Safe journey to london. Hopefully the weather will have perked up by then as pretty horrid today.
Paula xx
susan33651 rosieb4u
Posted
Hi,
Sitting on a bus can be problematic for me, especially if I have to sit over the wheels. Ironically, I ended up with horrific pain during and for about an hour after the MRI to look for nerve compression 😢
We're supposed to be going abroad for a few weeks next year but I'm a bit
reluctant to travel by plane for over 6 hours to be honest. I'm not sure if I have enough courage for that!
I suppose the only way to find out is to get on the plane and get to the other side!
Good luck.
rashine32232 susan33651
Posted
Hello sorry to hear your in pain I had TN for 3 years when the meds stopped working I opted for the surgery, IT WAS THE BEST DECISION OF MY LIFE! WHEN I AWOKE THE PAIN WAS GONE!! SO QUICK TIP TRY CARBEMAZEPINE IT WORKS BEST (RAISE THE DOSAGE UNTIL YOUR PAIN STOPS, I WAS ON 2700 ML) AND DEF GET THE SURGERY !! I HAVE MY LIFE BACK!!! WISH YOU THE BEST Let me know if you have more questions....
susan33651 rashine32232
Posted
Hi,
Glad to hear the surgery went well and that you're free of pain 😊. I currently take 1600mg Carbamazepine and 900mg Gabapentin (I have epic migraine attacks after the TN, but the gabapentin has helped with those and the TN). Not sure if I can have any surgery as I also have Autoimmune disease which affects certain sized blood vessels amongst other things. My Rheumatologist has advised me to only have surgery if there is conclusive evidence of nerve compression, which sadly there isn't at present, as surgery may trigger a flare. Each time there's a flare more damage is caused and my risk of stroke is increased.
I still have options with medication and non-invasive procedures, it's not a perfect management plan but it is a plan!
Best wishes 😊
rashine32232 susan33651
Posted
hi again 😊 thank you I'm so glad I had the surgery I had brain scans MRI and fiesta MRI's nothing showed up my dr. strictly went off my symptoms an he is 1 of the best in the business! Dr. John Lee PHILA. he was the protege of the Dr. that INVENTED MVD SURGERY an has performed over 500 operations! he said 99%of the time nothing shows up on testing so basically if its not from Ms or shingles an it feels electrical some burning some stabbing, the medication gives you relief and it's on 1 side of your face your a candidate for MVD surgery. when I awoke I was pain free!! there was and artery punishing my trigeminal nerve and a giant vein wrapped around it I actually saw some of my surgery on video I was LITERALLY up and walking around in 2 days like nothing ever happened ! you still must rest for a couple of months so your brain can recover... I have my life back and I thank god everyday...GET THE SURGERY
susan33651 rashine32232
Posted
Hi
My situation is a bit complicated because I have Autoimmune disease which affects some blood vessels, among other things, like my skin and the joints of my hands and feet, knees, elbows and neck. I get a lot of inflammation, and pain with it. It's unclear whether this is affecting the blood vessels in my head or whether it's compression of the nerve as one would expect to see. If it is inflammation leading to compression then MVD would be ill-advised due to the very real risk of triggering a major problem!
I would jump at the chance of getting surgery if I didn't have this other problem but I have to be realistic. TN won't kill me but the effects of the Autoimmune disease just might, and I have too much to achieve right now! So I will find other ways to deal with it.
Thank you so much for your concern, though, it's appreciated ☺️
Glad you are well and enjoying life
🤗🤗