Jaw Pain Discussion

8 years 2 weeks ago #12397 by BIY
Replied by BIY on topic Jaw Pain Discussion
Hi Wendles,

I find that it is very handy having a husband who is very sturdy and robust physically to hang onto when I am out. Poor fellow really has got the rough end of the deal as I used to be a very cuddly person prior to CP (not now cos of pain) so he seems happy to have me hang onto his arm when we go out for extra balance support :)

The Botox that I started having in 2012 has been my lifesaver as far as migraines are concerned. It has been trial and error with the neurologist trying different protocols and it also made it less effective when he 'borrowed' some of the migraine dose of Botox to put into the TMJ. Also, the Botox runs out after 9 weeks and this has also been a problem with the wc approval for only every 12 weeks cos the migraines start again after 9 weeks and it's not long til they're daily again. Then, because the cycle has escalated again, it takes a while for the new dose of Botox to kick in.

There's also the added complication of the TMJ flare ups triggering break through migraines despite the Botox so that keeps me unable to socialise with friends much cos of the talking/TMJ issue to answer that part of your question as far as being out with friends.

So, thanks to the Botox, I definitely have periods of reprieve these days from them. But overall, I think it does shake your confidence in doing things. I don't drive often and only locally these days, but that, now, is not just because of the migraines; I find that driving far affects my neck, headache etc, but also, because of sleep deprivation, I have poor road concentration and nodding off at the wheel was a bit of a shock too! While the Botox has periods of breaking the migraine cycle, the daily headache is still there; just toned down. I think headaches and migraines tend to make thinking hard and fuzzy so I think that contributes to shaking ones confidence to going out too. Wc provides taxis to doc appointments that aren't local thank goodness. I think I've just learned to take it day by day and, on the odd occasion that I might go by myself to the local shopping centre or library for example, I won't go if I'm extra headachy or have a migraine brewing (you know how you get those days where you can feel migraine symptoms hovering in the background). So it gets back to that listening to your body thing. The beauty of being out with my husband (apart from being able to hang onto him) is that I can say at anytime "enough, I need to go home now".

Yes, it does make your world small. I'm trying to come up with other ways of expanding that world such as online communication and my painting (which unfortunately has gone out the window lately with the flare ups of TMJ). I like sharing my art with friends on Facebook and, because I do paintings with a message in them, have had a few people say that the painting has really spoken to their own emotional need at that time...so for me, that is another alternative way of communication that I can see as having the potential to broaden my small world.

I think acceptance of our new limitations and then finding ways around them is a lengthy, organic process and I know for myself, it's still in its infancy. I certainly still have many down days where I grapple with these limitations that have been imposed on me and are not by choice.

And I think, in the same way, confidence takes time and is a slow process to rebuild and that's where paced gradual increase in activity comes into play too...slowly, slowly, baby steps :)


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8 years 1 week ago #12489 by Wendles
Replied by Wendles on topic Jaw Pain Discussion
Hi Fee
Well I killed my run without migraines, I'd made it 4 months without one. I just hope it is a one off due to the fact that December has been a horrible month and I havent been to physio for a month. I would hate to slip back into 2 or 3 a week just before work starts. I better listen to my body a bit more then and stop trying to be Supermum. Some weeks I hate not being able to do things and will over do it. I so have to get over that need and realise that it doent achieve anything in the long run. It can be so fustrating living CP all the time, every thought is centered around it, made due to it and is affected by it. Sorry I am feeling a little fragile today!

There is always a SMILE
in your day,
you just need to find it!

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