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!  ;D

Bless your heart for being a supporter. The treatments he has received speak of a doctor with a very limited knowledge of CH.

Our sister site, OUCH.org maintains a list of user recommended doctors, are any of these near you?

Boston:
Dr. Elizabeth W. Loder
Brigham and Women's/Faulkner Neurology

Dr. James Arthur Morrill (PCP)
Massachusetts General Hospital

Lawrence:
Dr. Andreas P. Schoeck
New England Neurological Associates

Lexington:
Dr. Peter J. Zuromskis
Beth Israel Deaconess Healthcare- Medical Care Center

North Easton:
Dr. Albert Ackil

Norwood:
Dr. Bryan Lieberman

Weymouth:
Dr. Paul S. Blachman

There are numerous preventative and abortive meds available to end those horrific ER trips. Getting on board with a headache specialist neurologist, who has a grasp of the current protocols on dealing with CH, is a great start.

Take a look at this link:

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I'm a 33 year CH sufferer, my aborts average 6-8 minutes just huffing oxygen. That's from  onset of symptoms, to completely pain free.

If possible get dad on this site so he can interact with us. Just knowing others "get it" can be a huge relief for a CH'er.

Thanks again for doing the footwork for dad. If my wife hadn't found the original CH streaming board I'd still be chewing aspirin and screaming for 90 minutes at a time. We love our supporters around here.

Joe

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

Boston: Dr. Elizabeth W. Loder Brigham and Women's/Faulkner Neurology

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

The keys to oxygen are getting on it as fast as you can, at the first hint of an attack. A high flow rate, minimum is 15 LPM, some don't get relief until 25-45LPM, using a Non Re Breather Mask. The idea is to get 100% pure 02 to the lungs, at a level to support hyper-ventilation.

Nasal canulas, re breather masks, low flow rates, all doom you to failure.

While you're in a reading mood... ;) There is a new vitamin/anti inflamatory regimen many have started using with incredible success. Go to the meds section of this board, and check out the posting "123 pain free days and I think I know why." The beauty of this treatment plan is it's good for you whether or nor you have CH, and it's providing a lot of relief for CH'ers. Thanks again for all the footwork you've already done.

joe

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  ;D ! Love to get some more!

Ashley

Hey Ashley,

Joe has given you the best available information on oxygen therapy and the anti-inflammatory regimen with 10,000 IU/day vitamin D3. 

This regimen is proving to be an effective CH preventative.  Your father likely suffers from a vitamin D3 deficiency.  The best way to find out is to have his PCP or neurologist schedule a lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D, the serum level metabolite of vitamin D3.

The normal reference range for 25(OH)D is 30-100 ng/mL, (75-250 nmol/L).  However, we've see several test results come back from CH'ers with active CH with 25(OH)D concentrations as high as 42 ng/mL.

What is even more important is that 70 out of 100 CH'ers who tried this regimen responded with a significant reduction in the frequency and severity of their CH in less than ten days, some in as little as 12 hours.  Most of them were pain free by the end of the third week taking this regimen. 

Lab tests for 25(OH)D from CH'ers who had a favorable response to this regimen have all come back greater than 60 ng/mL, (150 nmol/L).

If you shop at Costco, the photos below show all that's needed for this regimen.  A 5 month supply costs $35 or 20 cents a day.  You can find similar brands and formulations at most supermarkets and drugstores.

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Take two of each....

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That's it...  This is a very safe and healthy regimen even if you didn't have CH.  My wife takes it daily and loves it...  Only she bumped the vitamin D3 dose up to 15,000 IU/day.  She hasn't had a migraine headache since she started the anti-inflammatory regimen over a year ago and they used to come like clockwork every month. 

She feels great, looks great and has more energy than when I met her over 20 years ago when she was pitching for a White House League slow pitch team. I was always attracted to a chick in cleats who loves sports...

At her last annual checkup, her doctor told her to "Keep doing whatever you're doing... Your labs look like they came from a woman half your age."  That put a big smile on my wife's face...  She just kicked the heck out of 74 at Christmas...

We had a big Fir tree blow down across the driveway a couple weeks ago and she wanted to go get her hair done...  I was a little slow responding and the next thing I knew, she had the chainsaw and axe loaded in our pickup...

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Go figure...  When your father's lab test for 25(OH)D comes back less than 30 ng/mL, and he starts vitamin D3 therapy... you might want to join him and start taking it as well.

Take care,

V/R, Batch

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

Ohhhhhhhhh your dad is going the same path as my CHer husband.  ER trips multiple times a week...same concoctions except zofran did not help him, made him sicker.  I believe after a while his body needed the dilaudid....made things a whole lot worse for a very long time (years)  He would tell the specialists for a long time, that his headaches would last many hours (like you are describing) so at first they said they were not CH then.  We lost everything but our lives after that.  Our vehicles, home, because of the medical debt and lost wages when he could not go to work. 

My advise to you....do everything you possibly can to NOT go to the ER and get dilaudid! (or any other narcotic based drug)  Ask them if you can try the O2 with their masks but at 25 lpm.  You are paying for the ER.....It is soooo hard when you are the supporter and want to help, and they beg you to take them, they threaten to drive themselves, or hitch-hike, even call an ambulance. (Another expence)  I do not wish to even think someone goes down the wrong road first....like we did!  After a while, the hospital will not give him all that anyway, and it will become a fighting situation.  You will be driving to ER further away, for him to get what he needs (or thinks he needs) I have been there. :(  Be strong and loving.  Print much of the information you can get on here.  Put it all together in a folder or binder.  Take them to appointments.  Keep a log for everything.  Meds, meals, hits, timing, and even weather...(or journal) All this may help find what works, patterns to watch for and such.  Good luck and many blessings.  Keep in touch, and research!  I glad you love him so much.