hello again

[Lakeshiker]

anybody know anything about greater occipital neuralgia? Seems my doctor thinks I have it. It might have caused my t or lately made it worse. I banged my head and hurt my neck June last year. T started July. ENT consultant and audiologist say it’s anxiety/stress based as MRI showed no damage.,But for a while I felt like something wasn’t right with my neck and over last 4/5 months new symptoms started appearing so I rang 111 today and they told me it sounds like GON. I’ve looked on google as you do but wondered if anyone on here knows anything about it? Don’t think they can correct it but can treat it. Hoping this doesn’t mean I’ll have this screaming t for life 😬

[Happyrosie]

i know nothing of this other than what I’ve just looked up (sounds horrid, poor you!). But tinnitus may not be an effect of this. Some sources say that tinnitus always has a cause - but not necessarily.

If you have t done so already, read all about tinnitus in Tinnitus UK where you will find many ways of helping to keep Mr T in his place.

[Lakeshiker in reply to Happyrosie]

I’m struggling with my t. It’s very reactive to all sounds so causing loads of anxiety. Doctors have been trying to treat my anxiety and keep changing the antidepressants I try and I’m anxious it’s causing my t to be all over the place. Im currently taking Amitriptyline 25mg but it’s not helping me sleep and my t seems to have changed to really high pitched and more sensitive to sound. Feel suicidal most days. Before it started reacting to sound I would go out loud or not but now I’m so nervous about anywhere. I start CBT therapy but not till 2nd April.

[Marlayna67]

hi there. Unfortunately I have this condition and it’s quite chronic. I’ve had multiple radio frequency ablations to sever the nerves, but they grow back after some time. I’m sorry to hear you have it too.

[Lakeshiker in reply to Marlayna67]

Can I ask what symptoms you get and do you know what caused it?

I get a burning sensation in my head and neck and blurry vision.

[Marlayna67 in reply to Lakeshiker]

my symptoms are the most excruciating and unbearable pain you can imagine. It’s a pinched nerve between two discs that have degraded with age. It starts in the back of my neck. It travels over the top of my head and it goes all the way down to my right eyebrow. There is no relief whether lying or sitting. It’s either painkillers or ablation. It’s getting time for another ablation as the nerves have started growing back. It doesn’t affect my vision as far as I know, and I already had tinnitus before I had this.

[Lvdmarte76 in reply to Lakeshiker]

I started feeling like I had a clogged ear Oct 2023, went to ent and nothing.: then I started getting a burning sensation on my scalp.. it literally felt like it was burning.

And my neck also gets sore and painfully. I have been writing things down and it appears these symptoms come around my cycle, I’m 48 and thinking I’m perimenopause. I have an appt with my OBGYN in 2 days to check my hormones levels.

It’s so scary and causes so much anxiety .

[Lakeshiker in reply to Lvdmarte76]

That’s interesting. I’m on estrogen gel but I’ve read it can cause clogged ears so it’s hard to know what’s right. I’ve got a coil in so I’m not sure where I am regards my cycle. My T is loud and all over the place and causing my anxiety, very reactive to.

[kalgoorlie]

Hi LakeshikerI see you made a new post. I'm glad you're going back to your GP to get to the bottom of this quickly. Being proactive is good and I hope you get relief very soon. Sounds like you need referral to a specialist so that you get a proper diagnosis and hopefully this will help with your anxiety.

If you had called this post Occipital Neuralgia instead of hello again you would get relevant posts suggested in the Relevant Posts section below and maybe from other communities within Healunlocked. 😊

[Karlos99]

my tinnitus started with neck and nerve pain. Especially the occipital nerves. Felt like hot fluid had been injected in my head. When I press on all my occipital and trigeminal nerves my tinnitus changes tone. All I was told by my neurologist was that my nerves had become sensitised. All the best.