I am presently at work, standing up behind my desk for the past 6 hours because it hurts to sit down. I realized this over the weekend, after I had an MRI down with and without contrast. While running around doing errands and cleaning house I felt no pain. But as soon as I sat down, within minutes my face lit up. Pain around my right eye, temple and teeth. I have had TN for the past ten years and this is a new symptom. Can anyone else relate to this? I do have an appointment with a specialist tomorrow. Will be sure to let him know about this. Thanks for listening.
Ask your specialist whether this pattern may have something to do with variations in standing and sitting blood pressure. Many TN patients find that high-impact exercises like Pilates give them major problems with breakthrough pain. But relaxation of a compressing blood vessel so that it falls into contact with the trigeminal nerve is also a plausible cause of the difficulty you describe.
Go in Peace and Power
Hi Maria Ace,
I was getting attacks when I was laying down through January. I have had TN for two and a half years and that was a new one for me too. It has stopped happening again now though. It makes me wonder if it is something structural but now why would it be gone again? TN is one strange disease. I hope it stops happening for you as it might be hard to get some work done!
Jane
I also have more pain when laying down. I have not slept in my bed in a long time. I have to sleep propped up on the couch or in a recliner. I also have a horrible time riding in a car on very bad days. Something about the movement of the car. I have found the recliner to be my friend. I can pivot around until I get the least discomfort and then I use ice packs. I do enjoy doing Tai Chi. It's a very slow moving, calming, but full body exercise that does seem to help me.
Regarding the blood pressure, I did have to go back on my blood pressure medicine once I started having the TN episodes. The pain made my blood pressure go high and that made the pain worse...it was a vicious circle. Keeping the pressure down is important for me.
I found no extra or less pain when sitting but laying down was a whole other problem. I could get through an evening on the couch sitting up watching TV or reading OK but my head would only be resting for a few minutes and the pain would become awful. Sleeping in an upright position became a must for the short amount time I could get. I have no blood pressure issues, no compression of the nerve, my mri basically came back clear. I was frustrated to learn that other patients with TN once they could fall asleep would stay asleep and not be affected at all until waking. Where as the longer I lay down for the worse it got. Fortunately ( got to look at the bright side) I suffer with GERD and gallbladder issues so learning to sleep sitting up or at an angle for a few hours broken, was something I had perfected before I was thrown head first ( excuse the pun) into TN.
Sitting is not an issue for me but lying down is.
I find there is more chance of the temple on my affected side (right) coming into contact with the pillow and triggering an attack even if lying on my back.
I’ve found more recently it even wakes me from my sleep which is a new one. When this happens it’s not a single shock but a series for maybe 10 seconds like I’m being tazered. As I’m just abruptly woken it takes a little longer to get it under control and remember to breathe.
Today I woke up with a migraine, went back to sleep and woke myself twice with attacks. Not fun! Still not quite perfected the sleeping position yet this is all very new to me (only my second flare up but this is much worse than the previous one last ear).
I’m going to try sleeping more upright this evening.
Hi, Maria! I’m currently having the same problem with sitting. It’s the second time in a month. I also can’t lie down. The last time it went away in about a week. Did yours just go away, or were you able to find a solution for it? Thanks!
I have sever pain laying down. It feels like my jaw is broken. Then I can also have sharp little pains scattering through the side of my head. Car rides are an issue for me. I can’t let the back of my head touch the seat. It has to be my right side of head if I want to lean back. Medications help. I take it an hour before bed that way I am completely out the second my head touches the pillow. My recliner is the best way for me to sit. Sometime I will move out there to sleep. Before I had meds I would use a sleepy time tea to help relax me into sleep. Sometimes it worked sometimes I was just in pain.