CyMan

Pretty good and normally I would have said brilliant but recently I was ina consultation with my consultant who is the UK leading specialist on CH and she asked me 'what does it actually feel like'? I then realised how little she truly understood us. She read the books and carried outvsome experiments but ultimately it's just a topic of interest for her, not a desperate desire to have a normal life. In response to her question i said 'it's like being axed in the skull 8 times a day and still trying to carry on with life as best you can'. Her response was 'oh wow I've never heard it put like that ' Moral of the story.. we CHs need to stick together because nobody understands us not even the so called medical specialists who treat us

Strange you mention full moon. I notice the full moon having an impact ad well ad plummeting air pressure and recently I seem to get an attack smack on dawn each morning too. I think we CHs are wired differently we are connected to the universe and that makes us really special people. I think we were the chosen ones to bridge the gap between the humans and the higher entities of the universe. We sense things that other people don't notice and slight changes in atmospheric pressure or moon tides have a huge impact on us. Let's at least give ourselves this credit.. we are special people and heck, who else in the world can live a normal life after being axed in the head 8 times a day?

Yeah and that word 'headaches ' is terrible. Everyone says oh yeah i have migraines too... makes me want to shoot myself. Anyway some potentially good news. I started micro dosing yesterday and fingers crossed I have been pain free for nearly 18 hours. First pain free period in a month. Im scared to get excited but it's such a relief to not be in agony. I promise I will never complain about life again just give me pain free and I'm happy

I live in a 3rd world country called England and because I smoke they won't prescribe me o2.... its ridiculous. I smoke outdoors and not holding an o2 cannister but no they have their own dumb rules. I was told to go to hospital if I want o2. First off when in an episode I can't even go to the toilet let alone a hospital and second by the time I get there the attack will probably have passed. It's sooooo frustrating

I can't say what effect it has or hasn't on CH but I have been taking 3gm a day for the past 15 years and I almost never catch a cold. I also followed the studies into vitamin c and cancer treatments as well as heart issues and although I'm no scientist i swear by vitamin c. Having watched your link I'm off to have an extra vitamin now as I happen to be in middle of a major CH season and will literally take a lead pellet if I thought it would help

I find that once my hands reach for my skull to start the pressing the intensity increases its almost like my brain wants to punish me for pressing the vein beside my eye. It throbs like it's abt to burst. So as weird as it sounds I almost play a game of trying not to reach for my head but I know once the intensity reaches a certain level all this goes out yhe window. I also do a cranial squeeze on top left side of the skull and sometimes that helps with ice bags. In truth the damned thing has a mind of its own. It fades as quick as it starts but my seizures tend to last 60 minutes and peak around 20 mins reducing at around 45 to 50 mins. Yesterday I started having day attacks of 20 or 30 minutes duration too. I was so glad it only lasted 20 mins. Last season I was having 2 one hour sessions a night and two a day and I was just a sack of meat. Drooping eye bruised face from pressing and so depressed

I get given o2 when I go to a&e as the doctor won't or I should say can't prescribe it for home use. I live in England. but tbh it doesn't really do a lot for me. I compensate by heavy breathing when the seizures start and try to get as much o2 into my body as I can and sometimes I think it helps other times nothing. I pack a plastic bag full of ice and just moan until it passes. People tell me to do various things like mind control and calming thought but they just don't understand that when it's in full flow I can't even think of my own name. I don't need to tell you guys what it's like but other people just assume it's a migraine. Like snowflake says the fear of sleeping is what sets in. Past 3 days and nights I have slept a total of 10 hours. Just a wreak of a body atm and sometimes feel like I'm going insane

Don't feel too lonely i also had a massive attack last night and 2 light attacks. Today felt like I was beat. I tell myself during the attack that this will pass. I keep groaning and trying to remind myself it will pass. Sorry I can't offer more but I feel your pain