have been suffering from what was told was tn and glossopharygeal neuralgia for the past year. I would be pain free during the day but would be brought on when I sleep. I wake up in the middle of the night with excruciating stabbing and burning ear pain.
I had mvd march 2016 and was pain free for 4 weeks until the pain returned.
I don’t know what to do because I only get pain at night asleep and therefore am petrified to sleep.
If I nap during the day I am pain free ONLY at night.
TMJ was ruled out and I have no jaw issues. Just the deep ear pain.
Anyone have suggestions as to what to do to help sleep would be great.
That sounds very frustrating. My pain has a definite circadian rhythm, but fortunately the peaks happen during the day, and it quiets at night. But at times certain aspects of it did kick up primarily at night.
When I was taking opioids, I had a lot of mouth burning issues at night. I would wake up in the middle of the night with “burning strips” on my mouth and tongue. Eventually I figured out two things–that opioids were making the situation worse, and that my mouth falling open was creating most of the burning strips (air movement set off the nerves). I solved the air movement problem by taping my mouth shut (it’s not that bad when you get used to it). After being off opioids I no longer have any burning issues.
In general, I would look at things that you might do differently at night, before or during sleep. Have you tried sleeping sitting up a bit? or lying on your back so that your ear is not pressed against the pillow? Could your mouth fall open? Do you take any medications, supplements, use toothpaste or mouthwash, or some other product that might kick in in the middle of the night? Could you be grinding your teeth, and need a mouth gaurd?
I did notice a trend of the pain waking me up when I am on either side sleeping (my tn pain is in my left ear).
I’ve always had a mouth guard and when I initially began having pain the dentist was quick to jump and say I had tmj and made me a 1k top and bottom mouth guard (which was not needed as I later found out it was tn and not tmj).
I do try to sleep propped up to the point where my neck is killing me but I find myself waking up on my side thus I must move alot at night.
I almost feel like there is another underlying issue with my ear itself thought I’ve gone to numerous ent and have all cleared me (I also don’t understand how they see my ear is clear by just looking into it. I am thinking more so of a mechanical issue with my ear). This may just be me being in denial as I have had mvd and have had no relief.
Hi Ziggy, I only get pain of a night if my face gets cold, which is usually about 4am in the morning just before sun up. so I tend to sleep under the covers to prevent this. I also keep a heat pack - one that you can ‘click’ the little metal disc and the liquid turns to crystals and heats the little pack…
By applying heat, I am able to stop the pain. I also have to be careful not to sleep on the side of my face if it is only one side and been a lot of pain lately… seems to trigger it… Regards
Hi Ziggy I have seen your dilemma and know what you are going through. I have been suffering for years with TN nothing of the cause has been found since 2011.
So they put me on Carbamazepine 100 mg and upped it in 2013 to 300 mg plus I take 2 Nurofen in the morning and 2 Nurofen at night as I have pains in my feet and legs and the Nurofen not helps the pains in my feet and legs but it has helped my TN not to ache of an early morning and doesn’t wake me during the night any more.
Cheers and hope this helps you in some way.
Hi again Ziggy I forgot to add that I also have been taking Lyrica 300 mg for 2 years now and I feel that they have a lot in helping my TN pain too but I still get the tightness and fluttering feeling on the left side of my head and face so I will not stop taking any of my prescribed meds ever…I have to get checked every 6 months for kidney and liver and in all the years I have been taking Carbamazepine I have been clear of any problems.
Cheers
Hi Susan and GP–not sure if you were responding to me? or the original poster? but thanks for your feedback. I might pull out my hot pad again. It does seem to provide a bit of relief when things are bad.
I feel i am probably boring many folk on here, talking or making reference to the neck and neuralgia both tn and gn there is a common connection, and on this site there is a reference if you use the search feature.
Regardless, how many of your medical contacts have mentioned diet or even stress. Both of these affect inflammation and so pain. Looking at these might address the problem. Some folk think this can not possibly so for such an illness that causes so much pain, yet many chronic illnesses are linked to these two causes and your average medic doesn’t address this, drugs for life, a needle or a scalpel. Just a thought but addressing these issues is for many hard, but the rewards …
Hi Ziggy I am happy that I have helped in some way…I have to laugh I actually answered you on or replied to the post on someone else’s page …hahaha… but I can blame the drugs…
Cheers Susan
