Leaderboard

Knowing I'm going to be collecting thunder eggs here pretty quick I thought it may be nice to have something to laugh about (even if it means laughing at myself). Wondering, what's the most ridiculous or silly thing you ever started or stopped doing in an effort to avoid cluster? For myself the stupidest thing I recall doing was avoiding leaning over! Silly as it sounds, when I was a bit newer to this show I got a ch attack directly after leaning over so I then spent a few months trying to not lean over/down! I'm not sure if you have ever tried this but it was ridiculous I struggled to put shoes on undies 2! I allowed myself to be so discombobulated for a time that I truly believed it may save me .... How silly is that! Would love to hear what you did or didn't do!

I've had plenty a shadow between cycles. I don't recall too much of what others besides @BoscoPiko and myself have reported about this, but I think of it as being kind of 'normal' for us episodics. Like BoscoP, when the shadows get stronger (and for me, more frequent), I take it as a likely sign of an impending full strength cycle revisit.

I wouldn't let it give you 2 much anxt as I shadow the entire time between cycles sometimes worse as I get closer but not much worse than what I deal with on a daily..

One of my attacks came after blowing a candle out and breathing in the smoke of the wicks. After that, no blowing out candles only capping them to put it out. This lead to cooking things at lower heat to not burn it and avoiding smoke entirely. Especially hard because smoking Mari makes the stomach and mood feel better but don’t want to do it so that I don’t trigger a CH.

Edit: You name it I have tried it. Trust me. Legal or illegal.

Edit: I better not comment. It involved the illicit.

Glad you got a chuckle out of this most ridiculous post jeeb lol!

(Part 2) Here's an overview that might help you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Since you're in a pinch right now, be sure to look at the part with the bold heading "Treatments" without O2 . . . Too much Imitrex is bad for you, and it can cause your attacks to get worse or your cycle to get longer. One way to use less is to split your injections. 2mg is enough for most people, but the injector holds 6mg. Here's some guidance (scroll down 'til you see the videos): https://clusterbusters.org/forums/topic/2446-extending-imitrex/

I am getting the very frustrating "Internal Server Error," so I'm hoping that breaking my message into two parts will help. You could set up an oxygen system using welding oxygen pretty quickly. Maybe check with your doctor's office and see whether she is willing to give you a prescription for medical oxygen (which should have been done in the first place). If not, get started on a welding O2-based system while you look for a better doctor. Start the D3 regimen. It helps some people quickly. Not all people or even most people, but you never know, and you want to start it for the future in any event.

What other medications are you taking? How else do you manage your clusters? You want to look into getting oxygen now it will change and save your life. You can abort a cluster in as little as 5 minutes with the correct setup

OXYGEN. Read all about it here and get it as soon as you can.

Annett, triptans are both a blessing and a curse, they work great but cause rebound headaches. I would suggest trying to figure out something else to controll the headaches and only use triptans for emergencies. I know this is easier said than done, I have been suffering with these for the last 40 plus years.

You will want to split your Imitrex injections. They are (typically) 6mg, and all most people need is 2mg. 3 at most. Some doctors will prescribe it in vials so you can measure your own doses, and there is a 4mg injector. Here are instructions for splitting doses: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ You can see reported experiences with Emgality by typing Emgality into the search bar, top right of each page. I'd say that for people reporting here, it generally hasn't been very effective, but keep in mind that's a very skewed sample because for the most part the reason people are here is because conventional things haven't worked for them. If you can afford it, it's worth trying. The prednisone is likely to stop your attacks. That's unrelated to the verap. Sometimes prednisone will end the cycle (or the cycle will end while the pred is being used); other times the attacks come back when the pred taper is ended or ending. You can only do prednisone at most once a year. I get where you are concerning prescribed O2. But Imitrex is very expensive (particularly if you don't split injections) and the side effects are not great. You do not want that as your primary abortive -- only for bad attacks. So you still might want to consider doing as many do and setting up a welding O2 system. Maybe not for this cycle, I understand. Similarly, the D3 preventive regimen is better for you and is going to have less potential side effects than verap, let alone prednisone. So please consider getting going on that at some point.

I have to second this comment as I have only ever had 2 days clear max when in cycle so maybe we do have a indicator here

After 23 years of CH the only thing I know at this point is that it's over if I can make it to the third day PF. Never had more than about 48 hours between hits.

18 thousand views on... diet. (Low histamine). 2 thousand views on..... D3 (& supps). How odd that what goes into our bodies - through our mouths - are viewed so extremely often? I believe its pretty important to eat. Dont stop eating. Im not sure why? But i think its real important to simply eat, whatever u want. But just keep eating. Feed the machine - it takes a lot of calories to keep ur brain thinking. Coffee and scrambled eggs? Helps me sleep.

Sometimes, imho, when things get bad and nothing sems to work? Well. I will throw everything and the kitchen sink at it when im stuck. Ive had doctors, veterinarians, researchers... tell me rptdly - one thing at a time. Hey, i getcha abt feeing desperate. But u have got to do what u got to do, as u feel ur way thru this chas enigma, deaf dumb and blind. I see things, sometimes, differently... than others. I almost view it as a diagnostic, that people w chas? Become so o/c as regards supps, h2o every 30 minutes, write down times temp storms foods drinks drgs air freshner exposures... etc... and to be honest? Isnt that - mmm- weird? I think yes. Something happens to our brain chemistry and we totally fall into obsessive compulsive mentality and behaviors. Its dx & sx of chas. I can tell when im doing better because i stop the journaling of every detail. And if the chas come at 8 or 9 or 11 p.m.? Then just roll w it and stay up all nite and sleep during the day. Why fight so hard? ( ahem... not that thats what i tend to do, but...) I think *if u don't find any +s to D3 supps? Take the burden off? Dont take em. If u want to eat something? Eat it. Be happy all u can be. I simply 100% do .not. ascribe to the triggers theory. To me? The urge to eat those things? And then get slammed w chas? Means ur brain or ur body was trying real hard to tell u what it needed or wanted - if chas was end result? Think it thru... it doesnt necessarily follow that what u ate triggered the chas. Try thinking abt this whole enchilada from a completely different perspective. And? Pls? Dont smash ur thinking against the cement wall of "how things SHOULD be." Its like med ppl who r damned to h* for giving u SSRI after SSRI ... because thats the thing to do. Thats the sauce of serotonin. Theres a completely different sauce called msg - chinese food, ketamine, big juicy hamburgers w taurine naturally. And if that doesn't help? Try another avenue. Imitrex? Try the BAD theory? = benedryl, atavan & dexamethasone. (atavan is viewed as a system stabilizer, bndryl is for histamine, dexameth is steroid- kinda like pred.) Meditate & envision hot hands? Ive recently found Monster Get to a hot mineral pool and sit in the hot **MINERAL** water and let ur body absorb the minerals - naturally. When my body has absorbed enuff? I get out.. first few days ill sit and walk and swim for abt 3 hours each day. Next few days im in there for cpl hours. Then it finally goes down to abt 20 30 minutes. Try different things. But make life easy for urself, please. Theres a lot of tips here. I am still dumbfounded abt the connection between msg and ketamine. Thinkin on that one real hard start reading... and journal all the various tips. Sip ice water thru straw, 8 oz/30 min. Turn on air condit and inhale cold. O2. The source of ur chas may simply be something else (pcc, pgg to toss out 2 strange ones). We talk here abt blows to head and falls, horses, figure skating, hockey, dna, epigenetic, autoimmune, colored glasses.... And u rly do want to chase dwn a definitive dx. Make sure its not plain old brain cancer But try to be happy? On another list? I saw advise to new guy? -Get out of the house.- asap when u wake up. Try walking them off. Some folks get into that. Its not unhealthy if 1 thing doesnt work? Try try something else. Go on vaca to hot min pool. One thats open late at nite to suit ur new hours And? Hang in there.