I have previously been a member of OUCH, many years ago when I was first diagnosed and received an amazing amount of support.
I've been a chronic sufferer for nearly 11 and a half years now and had many different treatments over that time that have worked to varying degrees of success. Although I must admit, oxygen has been a life saver throughout this time and for that alone I will be eternally thankful to OUCH. My GP only prescribed oxygen after I attended an oxygen trial with Peter Goadsby's team in London, which I only knew about because of OUCH.
I now find myself back at square one (except I have oxygen). After the production of Methysergide ceased, I was prescribed Sodium Valproate, this seemed for sometime to make life bearable, however as last year progressed, the attacks became stronger and more frequent. I was taking more and more time off work and eventually was signed of work completely on the 30th November 2017. I was taken off the Sodium Valproate as this was no longer providing any benefit. My GP prescribed Naproxen and co-codamol, which as you are all aware, are about as much use as a chocolate teapot.
I finally saw the neurologist last week and I now feel more deflated and disheartened than before. I've seen this neurologist before (not sure if posting a neurologists name is ok?) and he's always been really good, until now. I was examined by 2 medical students before seeing him, which I have no problem with. But when he arrived he just seemed to want to get rid of me. He offered me a choice of an injection in the back of the head (greater occipital nerve block I believe) or Lithium. I said that of the 2 I would prefer lithium, having already seen a video of the nerve block and read about it, the lithium sounded more appealing. There was no mention of the side effects that go with the lithium. I asked him about gammacore, but he refused to prescribe this unless I had the nerve block and it worked. I was then advised to wait in the waiting area and he would check if I needed a blood test done. He came back to me in the waiting area and advised I needed a blood test to check my thyroid and I needed to come back to him in 4 months. He would contact my GP and get him to prescribe lithium. Much to my amazement he has left me on the Naproxen, despite asking if it was helping at all.
Having now done research into lithium, i'm not too happy about taking it, I would much rather try the gammacore and I am considering asking my GP to refer me to a different neurologist, but know this will again take a long time. I barely leave the house as I'm so worried and scared of when the next one will strike and having to deal with it in public. I've not driven since I've been signed off work in November.
I must also say I couldn't have coped without my friends, family and most importantly my amazing wife. I know for the last 6 months I've been a complete nightmare and hell to live with, but she's done everything she can.
I'm sorry I've gone on a lot in my first post, but I'd been clinging on to the hope that something would change when I saw the neurologist, but now I just feel lost and really needed to get everything off my chest. I'm so tired of it all, fighting the pain and constantly beeing fobbed off. I would like to just finish with one other point though, regarding PIP.
I made a claim for PIP and my wife took me to the assessment centre, there response came fairly quickly, scoring zero for each activity. But what annoyed me most was the number of errors. It started by saying I was observed to be of average build, now I have no problem in admitting I am hugely over weight and infact fall into the morbidly obese category. It also stated I was not on any painkillers. Most of the report was either twisted to meet their needs or just a complete fabrication. They did manage to get my name and address right though, so I guess that is a start.
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