Hey folks! I have had TN on my left side about 6 years and this past month my right side has been having some jabs and shocks. Has anyone else experienced this? Having it relegated to one side for years then jumping to the other? I also know my allergies are going crazy right now and feel like that’s contributing to higher face pain in general. Anyone’s feedback is appreciated.
My sinuses are going nuts and it really aggravates my nueralgia… I have constant pain… not bolts… more nueropathy
Sorry to read about your past and present problems. I have had trigeminal neuralgia, and other neurological issues, on my right side for about 18 years. Two MVD’s gave me relief for extended periods of time but I am back on medication again. Over the last few years, I have also had classic shocks centralized in my left temple as well. It is more unsettling than anything as I am somewhat accustomed to the pain. It hasn’t become a regular occurrence but happens enough to worry me. I do not want to go through the same series of events on my other side.
I hope this helps.
Thank you for sharing. Sigh. Yes unsettling for sure. Hopefully it’s a blip for us and passes with nothing more.
Unfortunately I too started with attacks on the opposite side of my face in the last two years; nowhere near as bad as the other side or as frequent/severe but still quite worrying. I have been waiting years for someone to listen and send me to a neurologist for help.
Sadly I am struggling to gain any support and recently got a diagnosis of chronic facial pain and told that I have to accept that I might be in the category of those people whom never get back to work! What a great motivational neurologist and hey, let’s provide you with an ambiguous generic condition and therefore we no longer need to treat you!
Keep fighting though, because what else can we do? Suffering in pain should not be an option.
Ug yes. I have such an issue with the medical industry. Let’s never get to the root cause of anything and keep telling you your body is attacking itself and just Prescribe prescribe prescribe. That’s been my experience anyway. Sure hope that this new side pain stays not as intense as the original face pain. I would say I hope it goes away but it’s hard to be that optimistic.
I too have bi-lateral trigeminal neuralgia, for the last 19 years. My left was bad for about 7 years and after two MVDs I can say I feel cured on the left. Unfortunately my right side started up very soon after the left was healed.
I have been on medication since 2007 for the right side. I had an MVD on my right, (for a total of 3!) but alas that didn’t help. Normally, I am well controlled with medication. But strangely, the second post from Arthur, who talks about his sinus’ hits home. I came home from a vacation at elevation in the Southwest of the country and since then and with this rainy Michigan weather, I am miserable. The pain from my teeth to sinus’ is unbearable, and for the first time I am missing work. I’ve never had sinus pain before, only strikes in my mouth and lower jaw area. So this is very new to me.
My GP thinks I may have sinusitis, so we are treating that because it is so sore and painful. I hope I do, that will be resolved, and maybe the TN can slow down.
You speak about not having a great option medically. I’m not sure how far you are from a larger city, but many have great neurosurgeons who will treat you for your TN, not just offer MVD. Many treat and offer other solutions. Find one as close as you can. Neurologists are great for the meds, but not the entire treatment of the disease, with all of the treatments possible.
Although it happens bilateral TN is rare. Have you had a MRI recently? Any change would be cause for a follow up one, especially new pain.
Have you tried cocktail imitex with pain meds for acute flares? There’s a school of thought that in some cases migraine and TN are linked.
Hi. I read your post and couldn’t believe it. I could have written it. It is exactly what it happening to me! I haven’t told anyone about this new right side pain. It will some how make it real and I’m so afraid it is. TN has taken most of my life away. However, I’ve learned to live with the pain I have and have even accepted my diminished life. I just don’t know how to live with more.
Thanks so much for posting, it makes me feel less alone. Are you still getting the right side pain?
It took about 6-8 months after initial diagnosis for my right side to kick in. I mostly get sudden severe jolts and spasm accordingly. It seems to flare to one side for a while (mostly left) and then to the other. Really bad days both chime in like a percolator. It’s been 14 years and multiple operations now. All the operations were early on. Symptoms very gradually worsened over time. Summer better and winter worse.
I’m a retired cop and so this next part is hard to say but after so many years and then reading recent studies I broke down and tried oral THC extract. I live in Washington so it is legal. One way they sell it is doses of 10mg in a candy like Starburst. I take one and quarter it. It doesn’t get me high but does lift my mood slightly. Breakthrough days I take a third.
At first it was 95% effective at elimination of pain. After 5 months it has leveled to about 85% effective. I’ll know better once I get through the winter months. For right now the pains I do have are diminished in intensity and abundance.
Dang it, the screen messed up…after about 14 years and reading recent studies I broke down and tried oral THC. I live in Washington and it’s legal. One form the sell it in looks and tastes kind of like Starburst candies. Each candy contains 10mg. I take one, quarter it then take a quarter. It’s not enough to get me high but does greatly alleviate the pains.
Thanks Bels, makes me feel less alone as well. Unfortunately yes it is still happening but it is lower level than the original side still. And the allergies eased up the tiniest so that’s helpful. This condition is such a rough road.
Not the route I’m choosing to take azurelle. No insurance and choosing to spend what little money I do have on healthy food, supplements and CBD. For those have given me better relief than any cocktail of meds I’ve gotten from my neurologist. appreciate the advice tho
Yes I’m in CA where it’s legal and find much relief with thc and cbd. Have you gravitated towards the high CBD products? Those seem to help me more with the pain. I love this tincture I have that 1:1 cbd to thc in an olive oil.
I tried the CBD and it doesn’t do as much for me although the mix was largely CBD. Perhaps I may try the CBD with a higher THC level next time.
My neurologist got kind of snitty about me using THC until he saw the studies and found it interesting. He was happy with my dose because it was low. All I know is it works well. I keep a low profile and buy it out of town because for 10 years I taught anti-drug classes and now feel like a huge hypocrite. It just works so well. I couldn’t go outside without a mask for the last 8 years as things got worse. It feels really nice to enjoy a summer breeze again.
This is pretty common, has a science- type name.
My Neurosurgeon said it was because my right side was overloaded by pain signals, and strange sensations / pain was overflowing to the left side.
Time to call your Neuro.
For me it happened right before my MVD, so I don’t know how it is generally resolved.
Wishing all the best —