Hi everyone. I don’t know if anyone will be able to advise me but I’m hoping so.
Basically since June of last year I’ve been experiencing severe, severe head pains in the very base of my skull and my neck area. The pain is triggered by movement - looking down at my phone in a normal position with my neck bent is excruciating so I now cannot do that. I have to hold my phone directly in front of my face. I also can’t take baths because again, the angle of the bath bends my neck.
This pain is honestly a 9/10 on the pain scale. I have three children - two of my births were without pain relief and child birth was less painful than this. Nobody will take me seriously on that front but I would not lie or exaggerate.
This pain literally leaves me screaming and clutching my head when the episodes strike. The episodes, as I’ve said above are always triggered by movement of my neck. I have to do labour breathing exercises during the spasms/episodes as they are that severe that I nearly pass out. I also vomit from the pain occasionally.
I have some days that are better than others. Usually when my neck and head have been immobilised for some time. But the moment I start moving my head normally again (such as using my phone, turning to look at the kids in the car, or even bathing) the pain flares again and I’m literally crippled.
The pain is like a deep throb in the base of my skull. It completely knocks me off of my feet.
I’ve now contacted my doctors about this 14 times since June 2021. (Currently reading my medical records for confirmation)
In June 2021 I was prescribed an anti inflammatory called naproxen. This did nothing at all. I was still screaming in pain.
In July I was prescribed codeine which didn’t work, more naproxen and then eventually tramadol - none of these worked or took the edge off of the pain.
In august I was sent for a CT scan which found incidental findings but nothing that could explain my head pains. I was again, left on my own and thrown more codeine.
In September, October, November and December my doctors were contacted again several more times and again just prescribed the same medication which I kept insisting didn’t work but it was as though they weren’t really listening to me and just wanted to get me off of the phone. Several different doctors were insisting it was just muscular pain and naproxen - the anti inflammatory - would eventually work. It has not worked. Will never work clearly.
They even sent me some neck exercises to do which I attempted and these have made the pain WORSE to the point I was vomiting and crawling around on the floor.
I contacted the doctors again yesterday and told them I had run out of tramadol (tramadol does little but it can occasionally take the edge off of the worst days)
The doctor told me that she didn’t want to prescribe me anymore opioids and instead wanted me to try naproxen again (are you laughing now, because I am!) at a higher dose. She then enquired as to whether I’d had investigations to find out what was causing the pain. I said no I hadn’t and that I was now at a complete loss as I am totally disabled due to this. I can barely get out of bed to care for my kids.
Her response ? “If you can’t care for your kids properly I can refer you to someone who can help”
So she was happy to potentially refer me to, I assume, social services, but not refer me for investigations over this god awful pain.
I told her that I didn’t need referring anywhere over my kids as my husband now has to work from home to care for them and we’ve had to somehow find the funds to send two of the three to nursery 3 days a week. My parents care for them the other 2 days of the week.
I really thought we’d get somewhere and she’d refer me for investigations or at least to a physiotherapist but she dropped this entirely and just told me she would send more naproxen to the pharmacy, that it was clearly muscular in nature and anti inflammatories would help and ‘could husband go and collect it for you’
That was that. I genuinely don’t know what to do. I’m shaking from pain all day; every day. I can barely move anymore. I don’t leave my house. My husband has to continuously replace frozen ice packs for me as I lay there all day with an ice back on the base of my skull to relieve some of the pain.
We can’t afford for me to go private medically. It just isn’t an option. I’ve now spoken to 8 doctors at my surgery who are doing nothing. There never seems to be any long term goal - all they do is prescribe weak opioids or anti inflammatories even though they don’t KNOW what is causing the pain. I’ve never even had a full MRI or CT on my spine/neck as they won’t refer for one. The doctor I had a few weeks ago kept insisting she didn’t think a CT of my neck would show anything because she thinks it’s just ‘muscular’
Please, has anyone got any advice? I’m so desperate.
Thank you