I had surgery for removal of my left styloid on Jan 15th. I still have the nerve pain though. I’ve been taking 300mg gabapentin 3x a day and clonazepam late afternoon to take the edge of the pain. However it all makes me so fatigued all day. I take 3 naps a day. I spoke with neurologist and she said I could try Lyrica instead of Gabapentin. I weened down the gabapentin and took one of the Lyrica today. Much worse pain and buzzy type weird sensations on my face. I’m not thrilled with the list of side effects for either of the meds.
Has anyone had any success post surgery dealing with nerve pain? And are you able to eventually get off the meds?
I’m so sorry your pain is still pronounced but believe it or not, you’re still in the somewhat early healing phase. Those darn nerves can be poky to heal. I hope in another month you’ll really notice a positive change. It took mine 6-9 months to really improve & a year plus for some of my post op nerve issues to subside. I know that’s not good news in the short term, but it bodes well for you going forward.
Another pain med often used is Amitriptyline. A number of our members have had good results with it. One of the keys to reducing side effects from nerve pain meds is to start w/ the lowest dose possible. It may not help the pain at first, but then have your doctor gradually increase the dose over the course of a month until you find the effective level. This gives your body a chance to slowly acclimate to the drug & can substantially help minimize side effects.
Anti-depressant & anti-seizure meds are the ones commonly used to help w/ nerve pain. It’s possible if the anti-seizure meds’ side effects are hard on you that those from an anti-depressant might be less severe. Within those two category of medications there are quite a number of different options. It may take some trial & error for you to find what works best for you. It can also take up to a month for a new medication to really help so sometimes patience is required.
We do have members who’ve needed the pain meds for some months after surgery but eventually were able to wean off & others have needed them long-term.
I’m sorry that the pain hasn’t eased for you yet, but as Isaiah says, it is still early days for you; members have had improvements even a year after surgery!
I take Amitriptyline for nerve pain, only a low dose. It started when I first got other ES symptoms- seems to be in all 3 Trigeminal Nerve branches, I had pain, tingling & numbness. The symptoms have eased, the numbness & tingling went after surgery, but I haven’t been able to come off it completely. Others have though, I do have other neck problems which could be contributing…
With nerve pain meds, they do take a little while to work, & to get the dosage right, & getting a balance between easing symptoms & not too many side effects…I think possibly the Amitriptyline makes me tired, but without it the nagging ache would keep me awake & I’d be tired anyway!
Hope that you heal & see improvements soon!
Phew this sounds like it’s going to be a long road…I weened down the gabapentin and took 1 Lyrica and now have so much pain and a headache for 3 days. I’m wondering if you ween down one med before the other starts taking effect, are you supposed to just deal with the pain? My neuro doesn’t seem to know much specifically about Eagles, so its frustrating.
I spent years on anti-seizure meds for Epilepsy. In my 20s I was just tired of being tired and just stopped taking the meds. Funny thing was that the seizures stopped happening too.
OK, so I need to find some patience
Hi. I refused all those mainstream drugs and the steroids. I used and continue to use marijuana for all my pain needs. I have my medical card since 2011 after my accident that gave me eagles 2016. Surgery 3.5 years ago and I am still in a lot of nerve pain . Not all the time, it gets worse as day goes on. I have es on left but only occasional symptoms. I got glaucoma from post accident steroids for my back and my neck which is messed up. Best of luck . Hopefully you live in a state that has mmj program
I’m glad that you’ve found something that helps your pain & is non-narcotic. I’m sorry it’s still significant though. We have e member from Germany who has given us some great information about different types of marijuana. He also uses it for his pain. I know we have members who use CBD with some success. Alternatives to “Western Medicine” are valuable as it doesn’t have all the answers.
Hi Isaiah, do most w ES have previous nerve pain before surgery or is this something brought on by surgery? I’m having surgery on my left styloid on Feb. 18th and want to be prepared for post op pains. Thanks, Sue
My pain is similar as it gets worse as the day goes on. I’m in NJ, so I can see what they offer. Do you take something everyday, similar to how mainstream drugs need to be built up in your system? And how do you take it, are there different options? Sorry for my ignorance on the topic
Hi Sixgunsue,
I had pain before surgery which led me to the diagnosis and then surgery. I’m only 3 weeks out from surgery but still have the same nerve pain. I don’t really have any pain from the surgery per se, and only took Tylenol and Advil after the surgery. The weird thing I do have post surgery is sneezing attacks every morning upon waking and throughout the day as well.
I’m excited for you! Surgery is coming up soon. Generally, if you have nerve pain before surgery, some of it goes away pretty quickly after surgery but some may stick around for awhile as you recover. I did get some new nerve pain post op from First Bite Syndrome. For most people that goes away w/in 6 months of surgery but for a few of us it sticks around longer but diminishes in intensity over time.
The main cause for new nerve pain post op is the surgeon having to move a nerve out of the way so the styloid can be safely removed. Sometimes this requires a little stretching of the nerve. In general nerves don’t like to be touched so they can become a bit irritated during surgery. Long term post op pain can occur but can be managed by medication which can also potentially be reduced & stopped as the nerve(s) recover. It does take up to a year after surgery for some nerves to fully heal though you’ll be feeling pretty good 6-8 weeks after surgery & possibly long before that. Each of us is “designed” a bit differently so our experiences are different w/ surgery.
I had bilateral ES & did find that the symptoms my remaining styloid were causing kicked up substantially once the first side was removed. That made it hard to tell exactly how well the first surgery worked though there were some symptoms that for sure were gone after the first styloid was removed.
As you’ve read & as deezy456 mentioned, have ice packs at the ready, a wedge pillow & a V or U shaped pillow on hand to help keep your head elevated & neck stable when you sleep & you’ll be off to a good start. You may have a stiff jaw &/or sore throat after surgery so make sure to lay in a supply of softer foods like soups, yogurt & fruit for smoothies, mashed potatoes, etc. I’ve mentioned that what worked for me was to take whatever meal my family was eating & put it in the blender w/ some water or almond milk & make it into a shake. These looked nasty but tasted great!
TheDude has posted a lot of information about using CBD for pain. You can use the search tool (magnifying glass above right) to search for his posts by typing in his screen name, CBD or marijuana. You can also PM him by clicking on his screen name as it appears above one of his posts.
I definitely have anxiety, mainly because I feel like someone is choking me…
I’ve also struggled with Hashimoto’s for 20+ years, so anxiety, gut issues and palpitations are always an issue. Not sure which came first now that I have the ES diagnosis…
deezy456,
Getting the ES situation taken care of could well help get rid of the choking sensation. I’ve had heart palpitations off & on for years. They seem to be worse when I’m in periods of high stress or anxiety. You may find they, too, subside to some degree once your ES is dealt with.
