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....not to mention the f'n horse it rode in on.....

I live between attacks. I am chronic ch with little to no breaks...ever. been this way for 10 years. My hobbies include dabbling in psychedelic drugs and I live way off the grid on our family homestead in Montana. I am a retired professional musician and I love hanging around with my odd friends who are mostly societies rejects. I am married and have six kids. I am the ultimate mountain man stoner punk rock dude blessed with the beast. The beast is my friend cause he likes me to do shrooms to make both of us happy. I am happy just to participate in this brutal life us ch folks live. We are super heroes. Best to all. Psychedelic Brian reporting from the lp3 ranch.

Welcome to the cool kid club Spida. I'm against pharma so my advice is to seek non pharma solutions like D3 and psychedelic busting. Oxygen for aborts etc. Red bulls and hot soaks also work for me when it comes to aborts. I'm sure pharma works great for some people but the side affects can suck. Try to learn as much as possible from here and inform yourself with some weapons to fight this terrible condition. It can be managed fairly well most of the time for most of us. Oh, and keep a log book of your hits and possible triggers. Just knowing your triggers can be very useful and there are many like alcohol, flying, foods, smells, even sitting positions! GL warrior! -Scott

Between CH'ers already having gotten together and figured out ways some of the luckier among us can gain some long remissions, plus likely upcoming medical advances, my money is more on probably than maybe high percentages of young whippersnappers like you will beat this thing, as in killing the beast permanently dead, and its little dog too (the sort of PTSD that can be one of the after effects of it).

There are trials going on currently, I believe, using schrooms for CH and PTSD. A co-operative union of the VA and Yale (or Harvard). Hey, if I don't think about it weekly, I lose a bit! It is being held in the northeastern part of the country. So, 'probably' is a very real statement. So, lock onto that and march yourself forward with a feather in your cap and a smile on your face. It is going to get better - for the first time ever!!! It has already been proven that MM is a 'best' med for CH, that is why it is in trials! There are people on this site who dreamed of and made a reality of going to Congress to get O2 approved for Medicare patients. After some 6-7 years, guess what? It is now being approved for all old clusterheads. No, we have not 'aged out'! Pretty much all forward progress began here, years ago. Many thanks to those who led the way!!!! I am forever grateful. Go to NIH.gov and type 'cluster headache psilocybin trials' in the search bar. You will find some reading material there. This one will keep you busy for a day or two: The Therapeutic Potential of Psilocybin! Enjoy! Oh, and somewhere in there, it will tell you if it is Yale (my vote) or Harvard (cya).

Hi Spida....sorry ya had to find us...excellent first post ....any experience with OXYGEN?....saved my sanity perhaps my life. advantage of being quick, side effect free, relatively inexpensive (compared to triptans), and more portable than many think. using an energy drink with 120 mg caffeine minimum and 1000 mg taurine minimum was especially helpful in making O2 more effective...sometimes on it's own. both O2 and energy drink used at first sign of a hit is critical.....the 2 oz 5-hr energy type very portable, quick to down and nunna the gross amount of sugar they put in these drinks to make palatable... ....verapamil was an extremely helpful med for me for many years until i too got tired of the side effects you describe. only the immediate release kind worked for me. 480 mg/day in divided doses for low cycle, 960+ in high cycle. tapering on and off is important but i never experienced any rebound effect either way. since my cycles were so frequent i just stayed on full time, tho i would have preferred to use only as needed. if you know when a cycle is over (experience and one ultimate blaster at the end told me) you can do the taper. ...pill form triptans were of no use to me and most clusterheads (unless you know your cycle well and can time use). for breakthroughs , zomig nasal spray (5 mg) worked better (minimal side effects, long term action) than Imitrex injections...tho i could get by with 2 mg drawn from vials (the 6 mg statdose typically prescribed is way too big a hammer)... ...many clusterheads have found relief with the vitamin D3 regimen....definitely look into that... best jonathan

What @xBoss said! And @SpidaH you have plenty of keen observations! Yes to your choice of "attack" terminology in place of the insanely misleading "h***ache" word. You'll never catch me using that h word in this context. I can only imagine that staying on the verap a bit longer, not forever, could be called for, but that is one of the very few Cluster drugs I never had been prescribed high (enough) doses of, so I'll leave further commentary on that to others with more real experience. If you ever find yourself resorting to triptans for aborts again, you could find it useful to know that sumatriptan injections (which are actually pretty easy to self administer) can be orders of magnitude more effective, even at low doses, especially if the attack is caught at onset. Also there are faster acting sublingual versions of the riza, if you've actually been prescribed a pill form, right?

Hey Bohm, Spiny is spot on. Once you've reached a stable vitamin D3 dose and responding 25(OH)D3 concentration that keeps you CH pain free, annual labs for 25(OH)D3, calcium and PTH are adequate. Regarding labs for calcium and PTH after a loading schedule or change in maintenance dose, all your doctor needs to do is annotate the lab order for serum calcium and PTH with the following: "Hypervitaminosis D" and "Possible Hypercalcemia" as the rationale for these two labs. Medical insurance companies would sooner cover the cost of these labs than take a hit with a law suit for failing to respond to a physician's lab order. Take care and please keep us posted. V/R, Batch

We have a member, Moxie, who says 'Life is what happens between Clusters', or it is very similar to that. Many do look at it that way. Also, there is the ancient Story of the old woman who carries her pig with her everyday when she goes to town. This began when the pig was a piglet and weighted less than a pound. Now he is big and strong and weights over a hundred pounds, but still she carries him everyday. The people look at her in amazement and she shrugs it off. It is just something she does daily and that is why she can carry the 100 pound pig. I look at my head that way. Yes, it is a burden, but since I carry it with me daily, I am strong enough to do so. You are too. Take it one day at a time. Soon, you will be dealing with most of what it can throw at you from a position of knowledge, not a blank page that leaves you afraid and lonely. And when you figure out how to deal with your very own beast, you will feel like you can conquer anything.

I would fear that bill too. But hey, in Cali you might find a doctor that will prescribe that pool for your CH! Then it has to be allowed, no? Not that I actually know, but it would be fun to do it!

Here is a small pick hopefully that I've cropped down enough...

Lol Spiny !! I tried believe it or not.. I listed it as necessary medical equipment and the tax man said sorry charlie...

As far as how to stay happy on days like today (September 11) I realize how fortunate I am. CH may be AWFUL but when we consider what others went through on this fateful day our own ailments seem less important. May God Bless America

I agree that CH needs more attention……the majority of people (even healthcare workers) don’t know what it is…….after you explain they then assume it’s migraine It’s easier said than done but don’t let it steal your life. There will always be awful days but all we can do is try to move past. Your air quality issues are probably making this worse so hopefully CA can figure the fire thing out……maybe a humidifier will help (I sleep with one and it has made a difference). Hang in there…..your cat and your horses need you!

Yes. It's possible for your cycle to change. Mine has changed greatly over the many years I've had CH. How CH responds to medications can and often will change. When I first started out verapamil would work very well. Over the years it's effectiveness decreased .... I second Bejeeber's suggestion on O2 usage. How you use O2 can and often does have a great deal to do with how you respond.

Plus fast acting triptan injections in small doses tend to be orders of magnitude more effective than the slow acting pills. When all you have is pills though, if you're pretty confident of what the timing of an impending hit will be, taking the pill one hour before has been effective for some. Typically like "I always get hit an hour after falling asleep, so I'll take the pill right at bedtime".

Hi @Hoodoo, sorry to hear of the cycle gone rogue, but yep, it appears common for CH to establish what seems like an inviolable pattern of timings for cycles and/or hits, even for ultra consistent decades on end, then suddenly out of nowhere when you least expect it, pull the old switcheroo on you. This can even go for which side you get hit on. Glad to hear it is starting to respond to the O2 and triptans again though - I too would definitely consider that a very hopeful sign. For future reference, I wouldn't be surprised if adopting the full power user O2 approach (if you haven't already) could help you still be able to abort stronger hits.

'I guess your doctor forgot to give you the jerk free pass card when they told ya you have clusters.. I got 2 of them and a card allowing me to be an ass twice a week.' Agreed, we all need at least one of these!!!! Bosco, we learn to laugh about it over time I think. Sort of laugh or cry? I'll take laugh any day. Let the anger about it out, scream to the heavens and then get on with life. I suspect it teaches us to value good times a lot more than many do and that is a gift to be savored. Fun Times made a great suggestion regarding RC seeds too!!!

I was more than happy to fill out the questionnaire. I hope that new members will do so as well. Together we can beat this. Knowledge is power!