I am new to this forum, I come from the UK where I was told to live with my headaches and that there aren't any headache doctors. I was given paracetemol and codiene but know about rebound headaches and tried to take as few painkillers as possible. Life goes on and I had to work, so managed until I got home, then crashed out. I had a good boss who let me use my holidays for sick and we had an arrangement where if I went to work and really couldn't cope, I could go home.
I have lived in France now for the last 16 months and the doctor here has put me on Topomax. I believe that my headaches are directly related to an acrylic plate I had inserted into my parietal bone when I was 10 years old. The sinuses were amputated and after the operation my forehead swelled up with cerebral fluid this went away after some time but ocassionally comes back. The illness was a mystery at the time but my bone was wasting away, at first I was told that my bones hadn't knitted together from being a baby but the 'soft spot' got bigger. I get constant headaches and have kept a diary and there doesn't appear to be a trigger. The top of my head is numb and sometimes pulsates. Sometimes I wake up with the fluid
on my forehead but my uk doctor told me that it was impossible to get fluid on you forehead!
I have tried propanolol but it didn't help and other painkillers which don't touch my headaches.
I also have a high platelet count which baffled the doctors but I found could be related to the disease that I had. I finally got a copy of my notes from the doctors and it points to that I had unifocal Hystiocytosis. I have had CT and MRI but they are normal 'for me' the doctor wouldn't elaborate. I had eye tests at the insistence of my doctor and they are not the cause of my headaches.
The numbness is constant but the topomax has made it worse, I get difference types of headaches, some over my left or right eye, some on my forehead and some vascular from the base of my skull which radiate all over my head.
The first time I got the vascular one I thought that I really was going to die. I still think that each time but, I've had them for so long now 40 years that I know I am not.
My UK doctors made me feel like a fraud and a nuisance.
My father rang me the other day and was alarmed as I seemed so far away and wanted to bring me home. Since taking Topomax I have wet the bed a few times, I usually get up at 4am to urinate, but my brain wasn't telling me to wake up. Topomax doesn't seem to suit me.
My painkillers at least send me to sleep, they don't kill my brain and slow me down.
I don't know what to do now. I had worked up to 100mg but dropped to 50mg when I started just sitting staring into space.
Sorry for going on.
Any suggestions please?