With the festive season on its way are there any tips on not only getting through the season, but enjoying it?

I love the festive season. Unfortunately, living in Australia it's usually hot and sunny with air conditioners blazing. Having grown up in a cold climate and in the States for a few years it just never feels right. Cold and dark with lots of warm fires and sparkling lights.. So I live around it. I stay up later and leave the fairy lights on for a month. And then there's all the shopping and running around and kids and noise. Which are great if they aren't triggers for your condition. So here's a question to all of you in our community. Are there particular triggers around the season that set your condition or symptoms off, and can you share how you manage them?

Hi Smiley, I am from Australia as well and you are the first person I know of that also has GPN. Which state are you in?

I find using fans is better than air conditioners as I find air con dries my throat further and this triggers issues for me. So the more humidity the better. I don't handle the dry heat well at all and live for the humidity.

So winter can be a trigger if not much humidity and dry hot summer days. My friends all die in the humid weather but I love it as I also have Sjogrens, which causes severe dryness issues, which contribute to my GPN. I tend to use oral sprays a lot and also saline nasal spray to help keep mucosal areas moist. Best sprays I have found are Oralube (an aussie one) and Rain MouTh Spray from the US. Can't use Biotene since they changed the formula as it burns and can trigger pain for me.

I also steer away from doing anything strenuous during dry weather that causes me to huff and puff as that will also trigger pain.

Hi Kaz, great tips.. I'm in Melbourne - where are you at? Fess do a great nasal saline spray too. I don't have the GPN condition like most of the folk on this site, diagnosed with TN a few years ago. Had a few tongue and throat twinges, but nothing like what you all live with. Such a challenging condition to live well with. That's why it so wonderful when folk share what they've learnt. Neuro's are great, but learning from others who share similar frustrations and challenges is so much more helpful for maximising the living part of life :) I know for me, most of the tips I now use that have improved my quality of life since being diagnosed, I picked up from others in our community.

As a child our Christmas was fraught but since I had my own family I have always loved the whole palaver! Now in my 70s it is very different from 30 years ago with three small children. I think it worked because the children enjoyed the way we did the same things every year. They loved the family traditions and now they have their own families my daughters at least try to recreate the Christmas they grew up with. The guests at our dinner table changed of course with older people left on their own joining us and younger members leaving to spend Christmas at their partners’ homes but even then a mince pie and whisky got left out for Santa and was mysteriously gone by morning.
So if I have a tip at all it would be to keep it as simple as possible and establish the kind of traditions that children love.

I'm in Sydney. I use the Fess saline spray and also nasal gel. Can't live without those. I also have MS as well as Sjogrens and they're not sure which causes my GPN, although at present am being investigated for a very rare condition. My last bout of GPN accompanied huge deep ulcers in my tongue. We're not sure whether this was coincidental, as in my Sjogrens was so severe it caused these ulcers, as all my lypmhoid tissue in the pallatine tonsil was swollen so much it affected movement of my tongue, and I had an attack because of the Sjogrens or are the ulcers part of the equation. Actually have a big appointment in a few weeks with 3 departments at my hospital while they try to work this out. The last attack lasted for nearly 4 months full on 24/7.

I also get TN but that one is not severe for me, as in nowhere near as bad as GPN and not as often - just a few attacks here and there and never for long.

We're blessed to be able to choose our neuro's and easily get treatment unlike other folk in the US and other countries. I feel very sad for people who have battles seeing the right specialists waiting for insurance approvals etc... Hopefully our system will stay like this and keep private insurers out of primary care as otherwise we will be in the same exact boat.

Personally I have found many neurologists do not really know a huge amount about GPN or how to treat severe cases! I have been told a few times in hospital nothing more we can do... So while we may have easier access to doctors, specialists, tests and treatments, we unfortunately lack in the area of rare diseases because of our population as compared to say the US.

With me for Christmas, I always try and get my shopping done before December and if I need to get anything close to Christmas will do it at night time to avoid crowds. We just do a nice seafood Christmas lunch with nice salads to accompany and that works well. It is too hot here in Australia to be doing the big hot cooked feasts. That's okay for the one's in the Northern Hemisphere where it is cool/cold this time of year. So the simpler, the better. I also find ensuring that there is easy to swallow foods best, so fish, oysters etc., are perfect. I also steer away from crunchy types of food so as to not trigger the 'beast!'

Smiley said:

Hi Kaz, great tips.. I'm in Melbourne - where are you at? Fess do a great nasal saline spray too. I don't have the GPN condition like most of the folk on this site, diagnosed with TN a few years ago. Had a few tongue and throat twinges, but nothing like what you all live with. Such a challenging condition to live well with. That's why it so wonderful when folk share what they've learnt. Neuro's are great, but learning from others who share similar frustrations and challenges is so much more helpful for maximising the living part of life :) I know for me, most of the tips I now use that have improved my quality of life since being diagnosed, I picked up from others in our community.

That sounds awfully painful. I still have family in Sydney and head up there a few times a year. I'll drop you a line next time I'm heading up that way :) Great ideas for the dinner and shopping.

Hi Nel - keeping it simple is a wonderful tip. Its really easy to get caught up in all the expectations people and advertisers have of the season. Its lovely that your daughters carry on your family traditions, I hope my children will do the same:)


Nel said:

As a child our Christmas was fraught but since I had my own family I have always loved the whole palaver! Now in my 70s it is very different from 30 years ago with three small children. I think it worked because the children enjoyed the way we did the same things every year. They loved the family traditions and now they have their own families my daughters at least try to recreate the Christmas they grew up with. The guests at our dinner table changed of course with older people left on their own joining us and younger members leaving to spend Christmas at their partners' homes but even then a mince pie and whisky got left out for Santa and was mysteriously gone by morning.
So if I have a tip at all it would be to keep it as simple as possible and establish the kind of traditions that children love.