Hello all! I am a daughter of a CH sufferer. My father has been experiencing CH he thought for the past 5 years, but since being officially diagnosed and researching more, he thinks upwards of 10 years. He also has suffered from migraines since the age of 19, he is currently 39. His cluster and migraine cycles switch, during season changes (Oct-Dec) and (Mar-May) he will go through a cycle of clusters once a week with 6-20 headaches in a night (his headaches will last from the onset, 8pm every time, till the longest we've had to wait out...8am). While in remission from the clusters, his migraines will start up, however he has the migraines under control with zomig (the only thing that has ever "popped" his migraines). We are currently in a rather odd cycle for him (I say we, because at time of attack I assume responsibility of being his "caretaker" which warrants me being fully involved). Like I mentioned he would have bi-annual attacks during season change, 2x a year for 1-2 months, one night every week, with 6+ headaches in a night. However, this cluster started like that in end of Nov. early Dec, he would get a headache every Sat. night at 8pm for about 4 weeks. His neurologist which once notified of his cluster beginning would increase his virapamil from 50mg 2x a day to 100mg 2x a day, which since being diagnosed has always ended his cycle. However, after the increase of verapamil, the headaches went from once a week to 3x a week for 2 weeks then to every night for a week and for the past about 3-4 weeks he has been having a day off in between, sometimes two nights with a headache and one day off before another two nights. When his verapamil didn't work, his neurologist referred him to a second opinion, which is a neurologist who specializes in "head pain". He started him on a prednisone tapper for a week about a month ago, and that did not help. After that he started him on divalproex (for people with epilepsy), that had no effect. Three weeks ago he was started on lithium which takes a while to build in your system, still no sign of the cluster ending. With the second opinion, he referred him to a pain clinic for a possible "superior ganglian cervical block" however, the pain clinic thinks this procedure is rather invasive (which after reading about it, IS and want relief for him at any cost, but there has to be limits). The pain clinic has recently at the beginning of the week put him on Lyrica and Tremidol (sp?) both of which make my father very irritable and not feel like himself, so he has discontinued use after 4 days of no relief anyways. He also has an oxygen tank at home of 5l, after doing some research I'm finding that Oxygen has little to no effect unless in 15l+pmin. My fathers only current relief for his CH is a trip into the city hospital where after 2 hours of pushing his eye into his head, holding his jaw open because his teeth feel like they are going to fall out, and rocking back and forth pushing his head against the wall, he is administered zofran (for his nausea from the pain) 2x2mg doses of dilaudid (about 1/2 hour apart) and benadryl (for the side effects of the dilaudid, sleeping effect and antihystemine for the "headache"). Mind you his co-pay for an e.r visit is $100.00 and we are going 4x a week, we are also going into a place where some nurses and dr's are not even familiar with CH, they have to read his whole chart and ask a million questions before doing anything. In short this cluster has been VERY draining since every other we always knew would be over shortly (1-2 months) so the unexpected and forceful nature of this cycle has left us both screaming for HELP! I have joined this site in hopes for more information and support/feedback on any suggestions or comments that people think could help. I am located near boston and since the whole Dr. John Halpern articles and news media, I'm debating slipping some acid into my fathers drink or some "magic" mushroom pizza, however my father is very anti anything like that  . Can't wait to hear from you guys! 

Guiseppi wrote on Feb 18^th, 2012 at 9:06pm:

His "second opinion" is the head of neurology at Brigham and Women's Dr. Alan Ropper, he works with the whole neurology team there and they discuss my father's case and they all work together on treatment for my father, I feel they are on the right track, the down side is starting a prescription, waiting for a build up if needed, with attacks happening every night, just to find out that the medicine is not going to work . Next visit to the e.r, which I'm getting 6th sense on guessing is going to be tonight, I am going to see how many l/pmin of oxygen they can administer. A lot of the e.r Dr's only know of oxygen or triptipans for treatment, and they have the oxygen knob all the way up and he's recieved a shot of Imitrex and had no relief. He has never had luck with triptans, he had tried imitrex for his migraines and also found no relief, until zomig, however when he tries to take that with a cluster, nothing. I guess the musical medication chair is just the nature of this beast for some sadly  . Thank you so much for the support though and I wish you every day an attack free day!

Ashley

I am going to see if we can try the oxygen and let you know. The vitamins and herbal remedies are always a no brainer (with cost and reactions) so I will pick those up tomorrow. I am more the internet savy one to be on this site to get feedback and relay it back to my dad. His concern was before diagnosis that he was different and had something that was completely incurable. His only wonder now since he has also done extensive research is if other CH sufferers have as long of episodes in a day (or night I should say for him) where he has to seek out medical treatment at an ER because he just can't take it any longer than once it comes on. Thank you for you feedback too  ! Love to get some more!

Ashley

lydia lie.............go away.