To cut a long story short, I had an MRI scan that showed I have low lying cerebellar tonsils which is typically seen in patients with Chiari Malformation level 1. I saw a neurologist who dismissed Chiari as the cause and discharged me without even looking at the MRI scan or its results. I'm seeking a second opinion and have an appointment in december.
I've been addicted to a painkiller that has Codeine in it most of my life (about 25 years, I'm 33 now). The neurologist told me I have genetic migraines and if I get off the Codeine I'll notice a massive improvement in my headaches. I have a headache every single minute of every single day and they vary in severity.
I was already actively seeking to get off the Codeine and I'm with a drug and alcohol clinic that's helping me, but they don't seem that competent to me. I've managed to reduce the dose I was on and now I'm on less Codeine than I've ever been. I'm reducing it by one pill a month and I'm doing well.
Question is, how can I find a substitute to deal with my painful headaches will I'm reducing the dose? Does anybody have any tips?
(A few things about me. I'm male, I live in London, UK. I'm 33 and I'm on 50mg Amitriptyline and about 60mg Codeine + 3000mg Paracetamol a day.)
Shogun, you are very brave. You are doing the right thing to find another doctor to take your Chiari seriously. Unfortunate so many neurologists are just not up to date with Chiari. You may need to find a neurosurgeon who specializes in Chiari before you get some real answers.
I too had a constant headache - it was from the Chiari, it’s horrible. I can’t help you with pain med alternatives, so sorry about that, but I wanted to cheer you on cause what you are doing takes a lot of faith and courage.
Thank you Jenn. I don't believe I have any choice, but to fight. My life has been limited ever since I was born. I can't work, can't drive and can't even travel on long holidays because of my headaches and other disorders. I just want to start living a normal life, you know? I appreciate your kind words.
I asked my GP for an appointment with a Neurosurgeon and he said it's virtually impossible to get that unless you've been severely injured in a motorcycle wreck or something. I really don't know what to do.
I just want to get off the Codeine to prove to these Neurologists that it isn't that that's causing my constant headaches. But I need a pain and nausea management to help me with it.
Thanks again. :)
Here is the list of member recommended doctors, there are several in the UK at the bottom of the page. Don’t give up, keep at till you get what you need. The Chiari journey is usually a long one, but your not the first one to travel it. I know we have other UK members here that have had the surgery.