I've been suffering from intermittent trigeminal neuralgia for about 3 years. My first episode occurred after a period of upper neck pain and severe discomfort upon waking every morning. I used to sleep in the worst possible position; on my stomach with my head turned to one side and a pillow under my face. For a period of about a week my neck pain was so severe that I took ibuprofen to sleep, and continued with the incorrect posture. Then I had my first episode of T.N. After this episode I reasoned that my sleep position may have caused the nerve pain and I corrected it as best I could (it's very hard to change your sleep posture!). The T.N. disappeared for about a year, and when it returned it was with diminished nerve pain.
I'm having my 3rd T.N. episode in 3 years and was searching for some sort of confirmation of my self-discovered strategy for dealing with the pain and came across Dr. Galiffa's Web site. I have to say, what he describes is exactly what I experienced and I'm grateful to discover that I might not be on the wrong path for dealing with this.
I'm wondering: have you considered polling groups of TN sufferers on their web support groups? It would be fascinating and extremely useful to know how many of them are now or have ever been stomach sleepers.
I did see in another post a longish thread of comments on improvements in TN pain after sleeping in recliners in a semi-upright position.
Like I said I would love to hear from anyone who has always slept on his/her back but still has TN, since this would quickly disprove my approach. Also, I would love to hear from anyone who has found relief by changing his/her sleep posture to back only (never side or stomach)
I've thought for a while that the root of my problem is in my neck but I've never thought about sleep position. I have slept on my stomach off and on my entire life.
I sleep on my side with my hand under my face and my neck kinda bent..(basically in a fetal position.).And I have type II pain. I can just quess that having the neck bent or stretched while sleeping every night cannot be good for it..I'm pretty sure the neck muscles have something to do with the nerves. Maybe that is why upper cervical chiropractors are able to alieve some peoples pain?? By manipilating the neck......Good question for everyone...
Hi Tim... one of the neurosurgeons I consulted with suggested that I consult suggested an Upper Cervical Chiropractor. While I have never done so, I have talked to a few members who highly recommend this route. If you are interested iin finding out more the website for NUCCA is http://www.nucca.org/index.php.
Remember, we are all here because we are in some way affected by TN. I'm glad you found us. Use every resource you can! And remember you are not alone!!
Thanks for the responses everyone! And the links to other resources. Yesterday was a real bummer... but today is great so far! Of course, I am not eating today or brushing my teeth and I can't keep that up for very long, but hey, I'm pain free.
When I completely changed my sleep posture I was pain free for a very long time; then I got lazy or perhaps not as vigilant as I should be and slipped into bad posture at night... and TN started again. Plus I slept in a very uncomfortable position on a plane and the following day had about 20 "shocks".
I think that my pain level is probably lower than many of you on this site, since for me the fear of pain is worse than the pain itself, and I can avoid it by avoiding the trigger point (V2, upper lip, radiating to lower eye). Basically what I feel is like an ice pick attached to a car battery... or something...
That said, if I could encourage some of you to try to RELIGIOUSLY correct your sleep posture so that you always sleep on your back, and then let others know if it helped, that might be useful for everyone. I had a long period of no pain, got sloppy with my sleep, and the pain came back. This is not exactly scientific, I know. I accept that it might also be true that periods without pain are just normal progression for a hypersensitive nerve.
BTW I switched to a buckwheat pillow (easy to find on Amazon) and this helps me sleep on my back. I do snore more but my wife is understanding ; )
Any thoughts or info is always appreciated! I had never slept on my stomach prior to getting TN. Now the only way I can sleep is on my back or sometimes on the left side, if I accidently roll over on the TN, right side in my sleep I get jabbing pain right away. Will check out the buckwheat pillow. Snoring is okay in this house, lol, the dogs snore much louder than me or hubby! Have wanted to go to an upper cervical chiro to try, but so far have been to scared to try, always worry something could make it worse, but about now not sure it can be much worse!
I always slept on my stomach prior to getting TN1. I am convinced that my TN is caused by bad posture. Most of my attacks come when I am slumped on the couch or sitting at the computer. I have been going to a regular chiropractor who agrees with me. She said I hurt my back when I painted a ceiling. My very first ever TN attack came that exact day. My neurologist says it has nothing to do with it and that the chiropractor won't help. He made me feel stupid for even suggesting it. It's been several weeks since I've had an attack. I am still on Gabapentin but even after reducing from 900 to 600 mgs I haven't had any break through pain. After a few more attack free weeks I intend to go off the Gaba and test whether or not the chiropractic has helped.
I also have TMJ disorder and forward head posture which I think both contribute to the TN. Sleeping on the stomach is very bad for TMJ because it pushes your jaw to one side.
Thanks for starting this thread. I would be very interested in hearing if anyone else feels their posture or sleep position could be the cause of their TN when there is no compression showing on the MRI.
In the past some of my most restful sleep has been when I was passed out on my stomach...not sure why. Now, I usually cannot sleep that way at all and predominately sleep on my right side or back exclusively. I am unable to sleep on my left (tn) side and couldn't even before my diagnosis...although it likely started around the same time as the tn. My left side is messed up from head to foot, concentrating mostly on my head/neck/shoulder/arm on the left. I think my neck is pretty messed up...it is now after they jacked it up during physical therapy two weeks ago. This is the second time they have messed me up...when I was going in for my back, lol. Nobody really knows what tn is...I think they assume it is TMJ.
But truly if TN was so easily handled by sleep posture none of us woud be suffering. Once you have it, yes sleep posture matters, but to cause it can't see that. We all look for answers, that is for sure. Interesting that sleeping on stomach would matter, but I sure never did and sure have it! Always open to new ideas and thoughts, but can't imagine the way you sleep causes TN or there would be hundreds of thousands with it, not the few....
Betsy, in my case it was the combination of hurting myself while painting the ceiling and TMJ, which is made worse by sleeping on my stomach. I don't think that sleeping on the stomach will cause TN but it can certainly be a contributing factor. Just like TN can affect people differently, sleeping on the stomach will cause problems with some people but not for others. It's certainly worth looking into, especially for those who feel that their TN cause is skeletal. I don't have any triggers that most TN sufferers do. I'm not affected by cold, breezes, light touch, teeth brushing, hair brushing, etc. My attacks always seem to come when I am in a position of bad posture.
When I started this discussion topic I didn't mean to suggest that TN can be easily handled. And I don't think I suggested that all of you might cure your pain by sleeping differently. But I do think there is more variety in the causes of TN and the potential for pain relief than Betsy's post seems to allow for. The suggestion that "If X therapy works, then it would work for all of us" is plainly untrue. A quick scan of the many discussions of treatment options on the message boards here is proof of that. Also, the statement "If sleep posture causes TN then many hundreds of thousands would have it" is not logically sound. Imagine a room with 10 people, and 1 begins to sneeze and says "It's the cat that's making me sneeze" and another chimes in and says "No, it's not the cat. We are all exposed to the cat. If the cat were the cause, we would all be sneezing."
An upper neck injury can't cause lancinating facial pain in the maxillary trigeminal nerve? That seems to be what Betsy is saying. So my question is, how do you know?
Betsy Carlson said:
But truly if TN was so easily handled by sleep posture none of us woud be suffering. Once you have it, yes sleep posture matters, but to cause it can't see that. We all look for answers, that is for sure. Interesting that sleeping on stomach would matter, but I sure never did and sure have it! Always open to new ideas and thoughts, but can't imagine the way you sleep causes TN or there would be hundreds of thousands with it, not the few....
I was never a stomach sleeper, although I do have my TN from a brain tumor. I’ve found the sleeping on my back in an upright position, like you said, helps significantly. Whenever I sleep on my side I usually wake up with pain. I have vertigo as well so I can only sleep on my left side and my pain is on my right. I’m not sure what the difference would be if I could sleep on the same side I have my pain on.
A search to find any relationship between sleep position and TN led me to this post. I was wondering if holding the head in a certain position and letting gravity do its work could reduce the compression on the nerve by the blood vessel and allow it to recover. I was a side sleeper but recently had to switch to sleeping on my back due to a frozen shoulder. My TN has been getting worse since switching to sleeping on my back. It may just be coincidence but it made think if sleeping on my side was previously taking some pressure off the nerve. What I don’t know is which side would achieve this (same side as TN or opposite side). I hope this makes sense and would love to get your thoughts.
In my own experience, which I don’t think will apply to everyone, I’ve found that sleeping on the right side of my face, especially when I’m on my stomach (really twisting my neck) rather than on my side, triggers TN shocks even in my sleep (shocks while sleeping are not supposed to happen). Lately I’ve been on 400 mg tegretol daily and I’m still getting shocks in the middle of the night but only when I turn in my sleep and lie on the right side or on my stomach. When I switch to my back with my head tilted to the left… the shocks stop. I don’t mean to suggest that the change in sleep posture will cure TN, but there is certainly an observable change and the shocks diminish to the point where I can sleep through the night.
My MRI clearly shows an artery pressing against the trigeminal nerve, meaning I’m type 1 trigeminal neuralgia and a candidate for microvascular decompression surgery. The surgery in my case will almost certainly work, but I was asking my surgeon, Dr. Schievink, if it isn’t possible that many people have such brain anatomy but have never had an MRI because they don’t have TN pain. He agreed that it’s possible. This is, in fact, what keeps me from getting the surgery. What if, for example, you have an artery pressing your trigeminal nerve, but you don’t develop pain because: the myelin sheath doesn’t wear away; or your daytime posture is otherwise different; or you haven’t had a concussion; or your sleep posture is different; or, something else entirely?
I go into remission for periods of 6 to 9 months, and my shocks are decreasing in intensity after diagnosis 6 years ago. I imagine surgery is in my future, but I’m delaying it as long as possible.
From what I have read as well, the cause of TN is not very well understood. Some people have nerve impingement but no pain while some have pain without any signs of nerve impingement.
I think in my case, I’ve had the nerve impingement for a very long time with painful symptoms showing up recently. After learning about this condition, I realized I have had some non-painful symptoms for a long time. I just never thought much about it.
A recent MRI shows a small vascular loop abutting the nerve. I’ll be following up with my doctor and then getting multiple opinions on treatment.