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Flying with TN

Posted , 15 users are following.

Betty58
Betty58

Hi I am currently being investigated for TN.  Symptoms are electric like shocks in my gums and teeth around my left hand side.  It all started on a flight in July and has returned on 3 other flights since then.  The pain is excruciating and painkillers dont help.  In September the pain came at home which was a complete shock as I thought it was dental trouble affected by air pressure.  I don't have any facial pain and dont know what the triggers are when not flying.  After having dental treatment I have seen a doctor at the Dental Hospital who believes it is TN but having an MRI scan next week.  I am taking Oxcarbazepine 300mg daily.  The pain has subsided but I am getting daily tingling in my teeth which feels like the pain is about to start but doesn't.  There are lots of things to get my head around and it is a very upsetting time for me and my family.  My dentist has suggested that I might not be able to fly again as this seems to be the only trigger that we can identify.  Has anyone else had pain when flying and could suggest help of how to deal with it.    

1 like, 32 replies

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  • Anonymous111
    Anonymous111 Betty58

    Posted

    If Oxcarbazepine has worked then it almost certainly is trigeminal neuralgia.

    I've never heard of it being triggered by flying.

    • Betty58
      Betty58 Anonymous111

      Posted

      Hi Ben thanks for your reply.  When the first episode occurred in July I wasn't on any medication and on the last 2 flights I had only began to take medication so it was a low dose of Carbamazepine.  Since then I have been on Gabapentin and since Saturday I have been put onto Oxcarbazepine.  I had side effects with the first medication and the doctor at the dental hospital thought Gabapentin wasn't as effective as Oxcarbazepine.  I am currently in no pain but having sensations in my teeth daily.

    • Anonymous111
      Anonymous111 Betty58

      Posted

      Carbamazepine > Oxcarbazepine > Gabapentin

      Unfortunately Carbamazepine can cause severe side effects.

      Did it cause blood derangement for you?

    • Betty58
      Betty58 Anonymous111

      Posted

      Hi Ben1994 I was only on Carbamazepine for a short time and it caused me to be really dizzy and feel sick.  I had no blood tests whilst on Gabapentin but today I had to go for blood tests for Oxcarbazepine.  Ive only been on them for 4 days and already feel bit sick and dizzy..  i also have an itchy feeling which is all over even when I am sleeping at night.  My GP who wasnt all that interested asked me if I could put up with the side effects as it contains some medication from Carbamazepine in it.  not sure how much to persevere before getting in touch with doctor.  Worried about ever having to increase the dose if Im having side effects with a low dose.  
  • susan33651
    susan33651 Betty58

    Posted

    Hi,

    According to some sources TN can be triggered by vibration, I suspect that's why flying is a big trigger for you. The vibrations from the engines and so on! For some people there are no identifiable triggers. I find sitting on a bus, especially if I sit over the wheels or engine, often triggers pain in my ears. I get more pain in my teeth/gums/cheek and the left eye than anywhere else. My left is more advanced than the right side.I get the electric shocks too. At this particular time my teeth are very painful, but then I have just eaten. My Dentist and Optician have declared my teeth and eyes to be problem free. And since taking the medication I have had far fewer episodes of pain than before, and the epic attacks last a lot fewer hours on and off too.

    Persist with the medication and take it religiously, set an alarm on your phone to remind you it's due (best advice I was given!), these drugs take time to reach an effective serum level and that level then needs to be maintained, hence the alarm!

    Hideous B'stard of a condition. 

    Wishing you well.

    • Betty58
      Betty58 susan33651

      Posted

      Hi Susan thank you so much for your reply.  I wonder if it could be the vibration and if there is anything I can do to avoid it or any place on a plane which would have less vibration.  Probably just grasping at straws here.  i will take the tablets at the same time so thanks for your advice.
  • sally90
    sally90 Betty58

    Posted

    Hi Betty,  I have had TN for about 10 years and have found it is always worse with low atmospheric pressure.  Because of this I do not fly, I have come across a few other people with the same problem.  So many different things seem to possibly trigger MS.

    I had Gamma Knife Surgery last year which has helped the TN (which had become constant) but I haven't dared to fly!!  I found all the drugs had side effects and I ended up feeling like a zombie, thanks to Gamma Knife I am now off all drugs but it might not be permanent.

    Wishing you good luck.

    Sally

     

    • Betty58
      Betty58 sally90

      Posted

      Hi Sally90 thanks for your reply.  Yeah I feel the same about flying as the thought of triggering the pain in my teeth and gums has me terrified.  Its bad enough having no control when the pain does come but to know that its definitely going to happen is too much to bear.  My dentist said that it was something to do with the air pressure so I'll just have to resign myself to the fact that I might not be flying any time soon.  Good luck with a pain free future.

  • blumie
    blumie Betty58

    Posted

    Betty, I just came back from a day of flying - and it started. I had TN 2 or 3 times in the past, the first attack was the worst and probably related to dental work, the other two were milder and without a definite precipitant. 

    This one I initially mistook for tooth pain, but after a day of agony am pretty sure it is it again, TN,  which I never thought could be triggered by flying. I googled this and came upon this forum, and many other confirmatory links. 

    So it does after all  look that in many patients with TN  flying may cause a flareup...

    • Betty58
      Betty58 blumie

      Posted

      Hi Blume thanks for your message. When my pain came on the flight it stopped even before we landed and stayed away until the return flight. To then experience the attacks at home was so scary that I knew something was changing. My orifacial consultant has said if I'm flying all I need to do us increase the medication prior to the flight and during the holiday until I return home. I don't know if I can take the chance in case it didn't work then I would have to face a return flight. I don't know any other triggers for me yet but so far medication seems to have things under control, except the twinges which are alarming. I hope you feel better and ge some relief soon.

  • mark44210
    mark44210 Betty58

    Posted

    Hi Betty, 

    Please consider visiting a licensed acupuncture doctor/clinic around your area. It worked for me. TN for 3 years. 

    All the best, 

    Mark

    Published article on "Successful Treatment of a Resistance Trigeminal Neuralgia Patient By Acupuncture":

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2797593/

    • Betty58
      Betty58 mark44210

      Posted

      Hi Mark thank you for your advice I will certainly try it as I am still traumatised from the last attack on a flight. I feel bad for my husband who is so understanding but enjoys going on holiday. My dentist even commented that using the Euro Tunnel would not be a good idea either perhaps because of the air pressure, speed or going down 40 metres. I am confused but don't know enough about my TN or what is the actual trigger. Can you tell me what your experience was when flying if you don't mind. My orofacial consultant Has said not to worry about flying just to increase the meds a week before I go on a flight but I feel it's taking a big chance that I'm not confident with.

      Thanks again

      Betty

  • ed85777
    ed85777 Betty58

    Posted

    I am having exactly the same issues. Short flight a year ago caused problems on ascent. Pain lasted 15-30 minutes. Dentist could find nothing. Neuro-surgeon and MRI scan let to diagnosis of possible mild TN. Then about 10 flights until start of February without problem. Then last week two flights on consecutive days. OMG. OMG. ******* agony. 15-30 minutes of pain in duration again when completing ascent to cruising altitude. 400mg of Ibrubrofen did not help. Saw dentist yesterday - nothing adverse found. Asked pharmacist about use of Carbamazepine to deal with it - answer was - "no idea, google it." Better half has arranged appointment with acupunturist. Don`t know what to do. More flights coming up in the near future. Anyone with comment on any short term medication or even effectiveness of acupuncture. It would be disastrous for me if I had to stop flying.

    • susan33651
      susan33651 ed85777

      Posted

      Hi,

      Quite a few recommendations are to be found on this forum. Including:

      Acupuncture, Turmeric, heat (volcanically hot hotel water bottle in my case!), ice pack, drinking milk, sensitive toothpaste (not sure if that's conventional use or application to the site of pain), applying pressure to the site of pain and many others.

      It's a case of trial and error I'm afraid.

      Good luck in finding the right one for you!

    • susan33651
      susan33651 chrystie56954

      Posted

      Sorry for the late reply, I understand that you can get concentrated capsules, but it's also available in powder form.

      Any good health food store should have it, and larger pharmacy chains (like Boots here in the UK).

      Hope that helps.

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