Occipital Neuralgia: UPDATE

[Ubud2021]

Hello everyone (:

I hope you all had a good day, despite these nasty migraines!

I had posted something last week about me possibly having Occipital Neuralgia. I had my appt today with the pain specialist/neurologist and, well, it turns out that I do! Honestly, in a good but weird way, I am relieved. Wanting to know why the things that happen to our bodies, may just be in our DNA. I have Occipital Neuralgia and Chronic Migraines. I get my first nerve blocks on May 19th. And I’m already counting down the days 😆 He also started me on NORTRIPTYLINE, in hopes it helps for the pain. I’m excited to finally have some answers and things starting to happen.

[Clairegavin77]

Hi hun I am the same it happened last year with me i was in so much pain and terrible light, noise and smell sensitivity to the point I was suicidal because i was so scared and no doctor could give me an answer to what the pain was until the marvellous Dr I saw last year suggested I may have occipital neuralgia, he put me on amitriptyline started me on 10mg I eventually settled on 30mg and they saved my life I take sumitripans aswell with my migraines if I need to but just wanted to let you no your not on your own and I hope the nortriptyline work for you, if not try suggesting amitriptyline and they took about a week to start working at 30mg, take care, claire

[Ubud2021 in reply to Clairegavin77]

Thanks for your reply and support! I am sorry to hear about your doctors. My doctors were the same way. I was going to the same clinic for 15 years for my migraines and neck pain, and not once have they did a physical examination of my neck/head area. Nor, wanted a MRI done. I have tried a few migraine preventatives, with no luck. The nausea pills are not working for me anymore so I am vomiting a lot more. Nothing seems to work!

I’m so glad you found a new doctor that listens to you and helps you!! It was such a relief after my appointment. I feel like I am in great hands. Someone who is actually trying.

Thanks for the tips!! I will do that if this medication doesn’t work. Have a wonderful day!

[Chleo11 in reply to Ubud2021]

All the best to you, Hecate!

[Clairegavin77 in reply to Ubud2021]

Aww babe your so welcome, stay in contact let me no how you go with the nortriptyline xxxxx

[Ubud2021 in reply to Clairegavin77]

I will stay in contact for sure and will definitely let you know how the nortriptyline works out for me! I haven’t started yet, because my pharmacy never got a script from him, so I believe he might have sent it to the wrong pharmacy. So I have called them regarding this issue. So, soon I will start!

[bamboo89]

I've been complaining on and off for some years about periodic pain at the base of my skull that seems to affect my face, scalp, ear, vision and make me feel a bit dizzy, but no one ever suggested occipital neuralgia, I'd never heard of it till I read your post. I actually thought it was a problem with the top vertebrae and damage to that because this problem only started after I had a throat procedure years back under general anaesthetic- if you see how they drop your head right back to get the tubes down into the oesophogus, its quite likely that damage can occur, even if that damage is just to the nerves.

Just wanted to say I know exactly what you mean about having a diagnosis - once you've got that, if you're suffering, you can at least tell people why you're feeling bad at any given time, otherwise it almost feels like they think you're imagining it...

[Ubud2021 in reply to bamboo89]

Oh wow, I’m glad you may have found your answer here!! Yes, I can see how that procedure could have caused this for you! How frustrating! I’d definitely bring it up to your doc or whoever you see, and explain your issues. Which, it seems that you have, but maybe by stating you believe you have this, may change their perception.

And you’re exactly right! If your diagnosed with something, you are at least finally validated and at last find out how to best go about it and get better. My doctors that I’ve seen at the same clinic for 15 years, have never looked into it either. The doc I’ve seen the longest for my migraines and neck pain, would seem annoyed when he walked in the room, knowing I was back for something due to my migraines and neck pain. I went to the doctors office at least 3 times a month due to these things. He never once tried me on any other medications for it. He prescribed me once imitrex, with no relief. I’ve used it multiple times, but never worked. He just said how “odd” it was that it didn’t work for me, and then did nothing. No further discussion on other options. And, he’s always been a “bid headed doctor” that let his medical doctor license get the best of his ego. One time, I was back to seeing him for these issues. He was taking a look over my medications, and got upset that I was seeing a psychiatrist due to my mental health struggles, and told me “that’s weird, psychiatrists aren’t the ones who should prescribe anti depressants and anti anxiety medications.” -which put me and my therapist mother in awe and left us with our mouths wide open. Because, that is exactly a psychiatrists job. I don’t know. I never liked him, but put up with him for almost my whole life. I was young, and assertiveness was never one of my best qualities.

Anyway-definitely look more into this matter, and bring it up!!

[bamboo89 in reply to Ubud2021]

Saw your post about the acupuncture kit you bought - added my own link to the thing I've been using for some years. It helps a lot, if I've mislaid it, I start to panic! I take it away with me when I stay away from home too....

[Ubud2021]

I just wanted to share this with all of you!!!

’ve found this device, and it is absolutely AMAZING!!! I couldn’t be more in love. You will need AA batteries for this device.

amazon.com/gp/aw/d/B081PMRZ...

Also, make sure you buy extra gel for this! It only comes with 2 little containers of gel, and you will be going through a lot of it. Especially while figuring out how to use it properly. Here is a link to the gel that I bought.

amazon.com/gp/aw/d/B00AMGV0...

[Ubud2021]

Hey everyone 👋

Just updating you guys who wanted an update. I got the injections a few days ago, and my neck feels great! No pain. I do also have chronic migraines tho as well, as I’ve been experiencing it now for about a week. It’s still here. Tonight is when I start 40mg of nortriptyline, but, I don’t see the nortriptyline helping for my migraines.

But again, my neck feels amazing!