Hello, I'm new, this is a long shot but I don't suppose anyone here also has Occipital Neuralgia? It's relatively rare so I've barely even found anyone who has it and it would just be kinda nice to not feel quite so alone sometimes.
I'm on the waiting list for surgery, been there about 18 months now as my pre op was scheduled the day the UK first went into lockdown, so, I'm rather bitter towards covid 😂
There are several non surgical options you can explore. Have a look on YouTube for self treatments. There is no point being bitter. That does you no good. Look at trapezius muscles and trigger points. Look at your posture. Look at myofascial release. Best wishes ❤
Hey Atticus,
I'm only waiting for surgery because I've exhausted every other option. I literally did everything, various medications, diet and lifestyle, physio, cranial osteopathy, external vagus nerve stimulator, nerve block injections, the list goes on but yes, surgery is like, the final option.
I'll take a look anyways, but more than anything I'm just hoping to find some other people who have the same problem as it feels a bit lonely.
Okay, I hear you. As a random bloke from the Internet, I'm here for you. Best of luck with surgery. What is and what was your experience with a Vagus Nerve Stimulator. Where did you get it?
Thank you very much!So I had to get my stim by having input from neurologist and then pay the company for use for 30 days. I can't remember the name of the device but it was rather expensive.
It was very easy to use once you got the hang of the placement but it was a little uncomfortable, I can't say I liked it much at all. Unfortunately I didn't notice any difference while using it but given how it felt when using it I reckon it probably does work if you have the right sort of problem if that makes sense?
Hi BunnyBean ❤️my heart goes out to u sweetie . I’m here in Texas and I do botox for mine . As well as Tizanidine (muscle relaxer ) Diagnosed 2 years ago and on botox ( every 3 months) since November and my life has completely changed !! I HAVE had to cervical fusions in the last 3 years , so they’re feeling like that is probably the cause of mine . I too tried everything and maybe Botox could be an option b/4 surgery ?? I was feeling just like u 6 months ago . I was wondering if u also experience excruciating Chronic migraines too ? I had them first ( about 7 years and then the ON .. I hope u have a beautiful weekend and ur pain remains on the low scale 🤗
Hey hotmess =)Thank you for you lovely reply!
Funnily enough I did discuss the botox route with my neurologist but once I found out how many injections were needed I just couldn't do it.
I don't have an issue with the needle just the pain. Used to have botox in my armpits for hyperhidrosis, it didn't work for long and the pain wasn't really worth it.
We also sort of met in the middle that as the nerve blocks were wearing off quickly, that arguably the botox might not change much. Also at this point I was many years down the line, and had gone private not NHS so was costing my dad alot and unfortunately I just hit a brick wall with my neurologist and it was time to part ways after a few years. It was a battle just getting the surgical referral despite meeting all the criteria and there being no other option. In the end my gp got involved and got the surgical referral. I saw two surgeons who both felt surgery was my best bet so onto the wait list I went and then bam, pandemic.
Should the surgery not be as successful i may consider being mega brave and trying the botox but definitely not something I can bring myself to do unless it's the only option.
I had headaches in my teens thanks to my upper vertebrae being weird angled to one side but physio relieved this, but I am now what they call a "headachey" person so any stress or high pressure weather and I'm on the struggle bus so I wonder if some of us are just more prone to pain?
Stay safe my texan ON buddy!
