" Has anyone felt these same things as far as pain?" Yes
"And have you had a doctor prescribe something that actually helps? and No.
I’ve required a few neurosurgeries and since my last operation the headaches have been off the scale. In the surgeon’s view they ‘fixed’ the issue but if this is fixed, then I’m another ‘F’ word. I saw all sorts of dr’s/specialists and professors. I tried all sorts of treatments, all sorts of medications. If someone suggested a treatment, I gave it a go. But no one had my ‘key’.
I had dr’s tell me that 6months post op everything had healed. They made out it was all a psychological thing. The brain itself has no pain receptors, seemingly, so I wasn’t feeling brain pain (My head was telling me otherwise) but rather nerve pain. They dosed me up on meds for nerve pain, which really messed me up. I tried Botox injections to relax the muscles in my neck, which gave me a sexy, wrinkle free neck, I just had to walk everywhere backwards to show it off , but did nothing for the headaches.
Through this journey (and it has been one hell of a journey) I have had dr’s and medicos tell me everything from I just have a low tolerance to pain, that I’m a drug seeker, that I’m a hypochondriac, that I ‘like’ being in pain, that it’s all in my head (as if I didn’t know that already) or my favourite ‘You just have to learn to stop thinking about it…’. I explain to them that I have this man in my head with a GREAT BIG hammer, trying to bash his way out and all I have to do is stop thinking about it. YEA RIGHT!!! If only it was that simple.
Then at my last neurosurgical appointment I had this new young female dr tell me "We don’t know everything about the brain. We don’t know why 2 people can have the same issue, require the same surgery and yet have vastly differing outcomes…’ For many, many years I’ve had all these medicos tell me “We know it all… …we know everything about the brain…” But NOW, I had this dr admit, they don’t know it ALL. I looked at my wife in absolute disbelief. Finally, FINALLY!!! they admit they don’t know EVERYTHING and this is real.
I’m in Australia and over the last few years opiates have been labelled ‘the new evil’, so our government, in their wisdom, have heavily restricted all opiates. Even for low(er) dose opiates there’s a whole new review system been put in place, where you have to see another specialist to confirm that an opiate is an appropriate option for pain management. And as for ketamine?, ohh, I’d have to be on my death bed to get access to ketamine.
For me, my headaches vary MASSIVELY, from type to location to intensity and due to this I have a variety of ‘management tools’ including drugs like opiates, medicinal cannabis, benzos etc. I use relaxation techniques, hydrotherapy etc and I ‘try’ to mix’n’match to obtain the benefit I need. I say ‘try’ because I’m not always successful and at which time I need a darkened, silent room and a bed.
I can assure you, you are not the only one trying to manage all of this and nor are you the only one getting minimal answers from the medicos, in fact, it’s more common than they’ll ever admit to. We know this because we live it too, so come talk to us.
Merl from the Modsupport Team