jon019

Interesting CHF....a good idea methinks...... I would add...most based on personal experience: LOW blood sugar Aspartame (artificial sweetener....vasoactive like MSG...,other A.S. do not seem same...but that's me) Nitrous oxide (dental anesthesia...never experienced personally)...but an enlightened anesthesiologist I met agreed it was a trigger for some clusterheads Gum chewing...or excessive jaw movements... Caffeine at the WRONG time (my belief that the body maintains stasis when "insulted" continuously....so best to withhold until needed for maximum effect) POST stress (e.g. home from work) Welding fumes (zinc welding fumes was an INSTANT hit for me) Routine changes (eating, sleeping, exercise, etc) I'm sure more...will think on it.... Best Jon

Hi Darcy...welcome! 61 here too!...it's good number...yes? Can't answer re the psychoactives (this site can help)... BUT...for the O2 are you using a non-rebreather mask at 15 lpm or higher at FIRST sign of a hit?...tis a beaut...........breath HARD and FAST...til you're dizzy really... I'm NOT impressed with your GP...the specialist sounds better but what else does he/she say besides "go there and psychoactives (which is enlightened) "? Pills are worthless for a hit abort...it's too slow therefore too late. Can you get injections of Imitrex or Zomig nasal spray (my last resort savior). Drop the Amitriptyline...tis an OLD migraine med with POOR success for CH....and depressing side effects... Prednisone should be used for a 1-2 week taper (high to low daily doses) ONLY...while a prevent (like verapamil) takes effect....it's long term effects are NASTY! 240 mg of Verapamil WAY too low...most find the sweet spot at 480 or higher....I used 960-1020 mg/dy... Search the Vitamin D3 regimen here and at clusterheadaches.com...great success...minimal side effects...inexpensive.. Best Jon

...thank you Brother...'tis an interesting journey...I abide...and hope the same for ALL in the family................

...thank you for the link...newish to the site and appreciate the "lookee here"... ...my apologies for lack of detail...the monoclonal antibody I refer is rituxan (aka rituximab)... ...and please note...as indicated in the link...there ARE side effects (consequences) of any med... I referred a potential positive....PLEASE folks...note that it aint necessarily all sweet pigs and roses. In my case...my immunity system is compromised beyond which I was warned or expected...it IS a challenge.... You pays yur money and yas takes yur chances...I'm alive...hard to complain...but just be aware... no sucha thing as: "FREE" Best Jon

MOST interesting...thank you for posting this CHfather! several comments: I think the abstract is sufficient for now.... Puzzled by the "genetic component" reference. Migraine yes...but have seen very little in the past 30+ yrs that there is any more than a "small/possible?" connection for CH.... Now what really stood out to me....having undergone chemotherapy with 2 meds for 2 1/2 yrs...ONE of which was a monoclonal antibody...I can report that going in I was a 7 yr chronic clusterhead (after 23 yrs of episodic)... in a cycle (yes, lows and highs within the chronic). Since then...ending 9 mos ago...I have been in a decidedly low cycle (which I tremble saying...tempting fate doncha know)...and "suffering" mostly shadows with only the rare hit. I TOTALLY understand this is an anecdotal....and we supposedly can age out of this nightmare...but it was danged coincidental...and this is the FIRST I've heard of research using monoclonal antibodies for CH treatment....can't wait to hear more...as there will be more chemo in the future.... and I'd like to think two birds with one barf........... Best Jon

Andi...that is a most excellent post!...reflects EXACTLY what the neuro I found after years of searching in the wilderness thought.... ...I worry that too many folks give up on verapamil without upping dosage (under Doc supervision of course). My sweet spot in cycle was 960+......and 480 out of cycle... best Jon

6-8 weeks on/off for 23 years...I'd mark the calendar... then chronic.....now in low cycle

Heya Den...Ima little sloooooow...one of these years I may even try facebook (yikes!...that's scary)..........................

Since before there was a 'Redbull" or any such....which meant boiling 2 tblspoons of coffee grounds in a cup in the micro then downing as fast as possible w/o burning everything.....grounds strained with teeth....crunchy "cowboy" coffee...I actually got to like it. You HAFTA be a clusterhead to do anything like that...... so I never had any doubts re diagnosis Have often wondered why there aren't any professional CH comedians since "timing is everything" when aborting a hit. Just a few minutes delay can mean aint nothing gonna help. You might want to try an energy right before expected hit time. I toyed with it for yrs and sometimes it actually worked...but the beast likes to "play"... so don't get discouraged. Personally I've never experienced any negative side effects form energy drinks....tho they typically taste so awful (tho no 5-hr) that I am thoroughly puzzled by the popularity. Must be the myth "medicine has to taste bad to be good! They seem better now...NOS tropical punch being my favorite flavor and Wired my favorite brand (double caffeine and taurine so 1/2 can is all that's needed). Bought on sale (Dollar stores are great hunting territory)...for $1 or less per can.....5-hr or knock offs too. One other note....for ME....consuming caffeine at the "wrong" time (in between hits) resulted in MORE hits and hits and energy drinks became useless. I think the body adjusts and you are not getting the JOLT necessary as your system has acclimated. Dunno...play around with that too...... Do you have oxygen, a preventive med on board (e.g. verapamil, lithium), abortive like Zomig Nasal Spray or Imitrex injections, a good neuro, considered the Vitamin D3 regimen? Caffeine and taurine alone aint gonna cut it........................ Best Jon

Hi Emily For some, the combo of taurine (>1000 mg) and caffeine (>100 mg) can be very helpful in aborting or lessening hit time....possibly even preventive if timed properly. (note that Redbull is lower in both these ingredients....if using regular energy drink find a different, and probably cheaper brand). The benefit of 5-hour is portability and ease of use...it's only 2 oz. I always have one in my pocket. In my case I get better results with a very chilled energy drink...consumed rapidly....at the FIRST sign of a hit....timing is critical.My belief that the cold had some beneficial effect, the sugar helpful (low blood sugar can be a trigger for me) and the carbonation speeds up absorption. Never had any rebound or 'crashing" experience...just that it didn't always work.....doubling up was pointless.... and over caffeination unpleasant while "dancing". Best Jon