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  1. Headsufferer

    Newbie

    Hi I’m new here and i have never joined or been part of a group or forums. I have the very rare brain disease Moya Moya with TIA’s & strokes as well as chronic migraine, cronic daily headaches and cluster headache, epilepsy, restless leg syndrome and depression. My consultant has exhausted all treatments medical devices and medications and is at a loss. I have been referred to Queens Square London to look at undergoing further brain surgery but this time for the cluster headaches. I am in my 20’s i am exhausted daily - i either sleep and woken up by headaches or I don’t sleep at all one night and have energy the next day (i put it down to adrenaline). I have a 4 year old daughter who is so good with my medical problems - when a cluster attack comes on and i am on the floor screaming begging for help rocking forward and backward she goes in to my bag and takes out my sumatriptan injection cartridge and gives it to me. She has done this since she was 2 1/2. I have been under the same consultant for 14 years and he now holds his hands up and says he is at a loss and doesn’t know what else to do. I have gone through the gammacore device, celefax head thing, he went to the board and got funding for Botox injections of which i had 30 injections at a time and nerve block injections. I am taking 10+ medications daily which depresses me every time i see them in my hand. Has anyone had any luck with any treatments? I’m loosing faith that i will ever get any relief.
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