Thank you for the welcome. I do not have CH but my husband does.We are desperate. I do not even know if I am looking in the right place for help but we have been in the emergency room three times a week for months now my husband Lamar spent last week in four days for DHE IV with solumedrol and torodol every 6 hours plus all the other crap he takes neurotin ,effexor,baclofen,topirimate etc...my husband is not able to work at all and I am a full time nursing student with two teenagers still at home .Our government insurance makes us jump through hoops to get the right meds and it took a while to finally get to the only neurologist around us that even takes the insurance to which we saw him one time he did not listen to us told us they were very common and kept calling them just migraines. I am not going to say what I have since written and told his office. after the hospital visit and no relief coming home to worse headaches they dropped him because we were to insistant he see us and discuss meds that might work. refereed back to primary that cant seem to even get his bupap or maxalt written for him. I am ready to bash doctors heads in with a hammer myself and see if they are in a hurry to find a fix for themselves at least!! soryy for my angerr but I dont know what to do.My husband has had this for 20 something years was in late 20 around 29 first episode thought it was sinus infection that is what ER doc said after going a few times a week in agonizing pain I have never seen before until this all started went away vefore they could clean ot the sinuses and didnt come back for five years always after the summer or winter solstice f -8 times a day lasts a few months then gone for five more years. Last ones were three years ago this last time and these he is having now are unreal and unrelenting and coming on both sides of his head not just one .He has used oxygen since the first neuro told him the sad news that he had this problem .He was very sorry to tell us that is what it was like he himself wished it was a tumor instead ,now I see why. I am scared for him to take all these medications and I have read and of course all of the kids know the wonderful healing powers of mushrooms that I do not agree with because my 23 year old spent three weeks in a behavioral center for becoming very schizophreninc from this activity although he is a little better now. My husband has become a shell of a man and I do not know what to do he is scared to try the mushrooms but I am scared of the steroids over and over and now it has been suggested he try verapimil an on top of the oxygen and evrything else. He already has hypertension. I do not know anything about mushrooms although I have had a relative that knows where to find them get me some and I am waiting to know for sure if it is the right and best thing to do .My husband does not want to try it but I think he will not last much longer and he will be willing to do anything I know I think I would have already poured bleach in my eyeballs and drank a gallon if I was assured it would make me better from something like this.The DHE in hospital IV worked like a miracle but we annot get it out of hospital .can some one please help us we are waiting to go to shands but I am begining to think they will have no better solutions than anyone else when we get there .I cant say his headaches are becoming chronic but he says they are differnet somehow and they are definately harder to treat than the last rounds .Second cycles found oxygen it knocked them out great alone time after that not so much needed neurotin, trazadone, decadron ,oxygen and endocin but they left faster with that .this time not so good. still trying to stay out of ER .I just dont know how to help him .I usually know how to fix things but I am scared.because of no insurance or shitty insurnace over 20 years have not kept neuro and everytime it is a fight to get somewhere for him to be treated properly .Sorry to vent and ramble I am tired and I am out of options for him until something happens. how much pain can someone take I just don't know.
