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HI Anita, and gang. I've always been chronic, and to be honest, being episodic used to scare me. Sort of along the lines of what Jon said above. At least when I was getting hit all the time, my life was prepared for it. I always said, still do actually, life is what happens between headaches. Although these days, it's mostly chronic migraines and chronic daily headaches. Cluster Attacks, not so much any more. In 2011 I was getting up to 5 vicious attacks a day, every 2-3 days for an entire year. That was about my worst year with Clusters since they started in Jan 2007 (add on top of that my migraines and daily headaches, of course). I had gone through, and maxed out every drug the doctors could give me over the years, and they just got worse and worse and worse. If I had 3 days attack free, I was amazed. And when they hit, it was HELL on Steroids! Nov 2011 I had my calendar in front of me, and was selecting a date on which to leave planet Earth. I had decided to give myself one more year to find a solution, and then good bye. I had been told about this board in 2010, and read through some of the pages. But to be honest, LSD scared me. I've never done anything harder than pot, and that was when I was very young. As a result, I had always held this option as a last resort. That day when I was picking a date to die, I knew I had reached my last resort. So, I joined the forum, and was instantly greeted by the warmest and nicest people on the planet. You've met them already. I began coming off of Topomax (Topiramate) as quickly as possible, to quickly if I'm honest, and I spent all my free time reading these pages. By the time I was clear of the doctor prescribed "waste of time", I had a small amount of shrooms and some RC Seeds. After my very first dose, I knew I was onto a solution. My next attack after that dose was COMPLETELY different than anything I had ever experienced before. I knew the routine, I knew the schedule. But this attack after busting, it didn't follow the schedule, or the routine. My routine was: Sudden attack, like being hit in the face with a baseball bat. 30-60 minutes of extreme pain, usually sitting on my bed rocking back and forth with snot dripping down my face, followed by 20-30 minutes of uncontrollable tears and shaking, as if someone where rattling my bones. But, after my first bust, there was NO post traumatic attack. No crying, no shaking. I had a short, 20 minute attack or so, and then got up and dusted it off and got on with things like it was no big deal. The attack was sharper, and 'clearer' than any other. It was like crisp, cold, crystal clear water instead of the heavy, oppressive attacks I normally got. It took me the better part of a year of busting on and off to make a huge difference, but a difference it made. Year 2, I only busted occasionally, a few weeks at a time 3-4 times a year. Two years ago I started micro-dosing, which is amazing! It involves taking a small dose (0.20 grams or less) every day with no tripping affect. But, I don't even do that very often now. In fact, all my busting material is going to my best friend who has ALS, she needs it more than me. Do I still get attacks? Yes, I had one yesterday in fact. It lasted about 30 seconds. Took my breath away and brought a few tears to my eyes, but that was it. I get 1 - 2 attacks a month now, and consider anything over 15 minutes a shockingly long attack! In fact, 5 minutes is unusual. I'm not as scared of being episodic now as I once was, simply because my attacks are not what they once were. I'd be concerned though that if they stopped for a year or two, they might come back with a vengeance. But I have a solution now. I know how to stop them, and I have no plans of leaving this planet anytime soon. MG

You're the best, Moxie. Glad to read all this. Very interesting that you're microdosing.

Possibly the reason he's getting hit more right now is because on the 20th, we have the Solstice coming up. Most of us get hit WAY more during this time period. Things tend to calm WAY down afterwards. My neurologist said it has something to do with hormones... I know my hits get a crap ton WORSE every time the solstice or equinoxes swing around, and it's not just because my botox wears off! Also, I'm not sure if I'm reading THIS right but... if I am, I think what Verapamil does is it stops you from making excess CGRP, or reacting to it. https://www.ncbi.nlm.nih.gov/pubmed/8523457 Which may be part of what causes our headaches. Which means, it kind of keeps you from getting worse? But it may not make you better.... So Verap may hold your headaches in place and stop them from progressing, but it's not going to fix the problem. So if you're episodic, you take it until the attacks go poof, and you're over your cycle. If you're chronic, you take it until your body builds up a tolerance and says 'Fuck this'. At least I'm assuming that's what happens... But I could be COMPLETELY wrong.... I've been known to be. (Ignore all of this, I read it wrooooong I think.) Back to your hubby.... I second the suggestion of RC seeds, they help SO MUCH. I didn't get relief from oxygen unless I got on it RIGHT away...and currently I don't have it. But RC seeds helped a crap ton. I'm a chronic. I started out chronic. Good luck! <3 Everyone else gave some super advice here!

I just like to add that there are also people including me where it actualky works better with the cannula. I had a standard non rebreather mask and then also ordered the (original) clustermax mask. Non did work as fast as sticking the cannula in my mouth, make sure it's shut and close my nose with 2 fingers. Not saying the mask isn't better for most, just saying for some reason it's not for me and others report that as well. Cannula aborts in couple of minutes, masks take up to 15 mins and I know how to breath right. Either way, oxygen done right is great and everyone will find out for themselfes what's best. Just don't give up if technique A doesn't work, try route B Edit - cannula wastes more o2 of course as it keeps streaming when you exhale vs. Filling a bag but well, on the other hand it aborts faster for me. Give and take

CHF Sorry for the late reply. Short Acting NOT ER (extended release). As Jon said, ER can mess you up and you think it no longer works, or never worked!!! Short acting, I too tailored to my normal hit times. One during the day and two spaced out over the night. Trust me, if you are in cycle, you will NOT forget that second pill after you kill a hit. I had to beat this into my docs head BTW. Sure have spent a lot of time educating my Neurologist. Too bad it doesn't pay in dollars. At this point, I mostly go for the annual for one script for the neck pain and to educate the sweet man. He is a really good man, just not enough education is given to these guys in school. Imitrex: I have taken exactly two pills my whole life. Not afraid of shots, just not going thru the problems that Trex brings. Heart disease? No thanks. I would rather beat my head on the floor than touch it. Of course that is just my opinion. And we know that thing about opinions, right?

Yo CHf...best to you brother... Re verapamil....I was ona the upper limit guys...sometimes over 1000 mg/dy (480 mg/dy seems to be the sweet spot for many) . Extended release...for ME...was worthless no matter the dose. Got it once by accident and the panic that ensued (IT DOESN'T WORK ANY MORE!!!!!) is still SEARED in my brain. At least experiment. I had some success TIMING the split doses to just prior to anticipated hit times! Re O2....mixed feelings. At one point I was poor and had crummy insurance. Had to buy O2 out of pocket...$10 per e tank...which was quite reasonable...but still. This gonna cause eyerolls and guffaws... but I used 4-5 LPM and successfully (aborted about 60-70%) because I had to conserve. Wrong mask...wrong technique... Later, found success with better technique, 15 LPM and the right mask...Other times 20-25 didna work. see O2 thread at ch.com for near everything ya need to know...AND get the right mask...available from the store there. My gut feel is that O2 is not 100% effective no matter what...BUT proper setup, mask, and technique are CRITICAL before giving up........... Never liked Imitrex....made me feel "ooky"...found my favorite rescue med to be Zomig 5 mg nasal spray (99% effective...no rebounds). Damned expensive and damn insurance companies always made obtaining a trial.... Best Jon

At least the doctor he likes isn't crazy: the prescriptions are sensible. During a cycle, many people need as much as 960mg of verapamil, and I think -- spiny, please correct me if I'm wrong -- that it's generally been observed that the short-acting verapamil is more effective than the extended release. Or it's the other way around! spiny or someone else will clarify. We get that he's doing what he can, and it is important to know that it's widely believed that extensive use of Imitrex will make subsequent hits worse and more frequent, and make cycles longer. Oxygen is the way to beat that -- abort with O2 and you need a lot less trex. But we also get the reluctance to get hopes up and then be disappointed. That's one of the cruelest things that CH does to many, many people. As spiny says, attending the conference could be a great thing for him (and you). Here's a final refrain that you might have read here. If O2, properly tried, doesn't work, then it's possible that he doesn't have CH. Really, "properly tried" is nothing fancy. If he had tanks, a regulator that goes up to 15lpm (or maybe even 12 lpm), and a non-rebreather mask, and there was nothing functionally wrong with the system, in my opinion he should have felt some relief from O2. So you do want, I think, to consider the possibility that he has a CH "lookalike," most likely some form of hemicrania. We've had a few people here who were diagnosed with CH who actually had hemicrania continua (HC). The good thing about that is that it's treatable with a medication called indomethacin. Maybe you might look into HC and it might be something to be suggested to his doctor.

If possible, go to the Convention in Chicago!! They will stress O2 and teach him how to use it among many other things!!! It is in September for a weekend. You will learn a lot too. Many supporters attend with their CHer. Info is on one of the other boards on the main page. Also on the opening home page where you start when you sign in. It would be great for both of you.

CHFather, thank you--I always appreciate reading your responses on these boards. I'm sending him the D3 regimen info now--he's probably not yet able to read it through, since he's in a bad cluster, but I'll scan it and see if I can provide him with the highlights. He's open to busting, and if I can get him to read the files I'd consider that a huge win. I don't know the exact levels of his meds, but he's on Verapamil with the Sumatriptan injections (which we've learned to split, thanks to this site, and that's been very helpful), and currently on Prednisone to try and taper this particular cluster. He may be on other meds, I'm not sure--he works closely with his doctor to monitor them as we're both aware that taking a large amount of pharmaceuticals can be harmful in the long run. It is not the way we want to go, but right now we are truly trying as much as we can. Despite my continued pushing to use O2, he is convinced that it does not work for him. We have two tanks and a nonrebreather mask, and we have tried before, but he will no longer use it. It's extraordinarily frustrating to me, as I think he could learn a lot about the proper use and technique of O2 to potentially get relief, but he won't try it. I wish I could have another CH meet up with him to discuss the benefits. Understandably, he doesn't want to get his hopes up trying something that may not work; but it's very difficult for me to sit here while he stubbornly refuses to try it again. However...it's his pain, and I'm here for support--not criticism. He is doing his best to live through this agony, and I admire him and love him. My heart breaks to watch him go through this, but whatever I can do to help him, I'll do. I'll gather as much information as I can but in the end, all I can do is love him and lift him up however I can. I appreciate this site and your support. It's really helping at this particular low time.

Anita, will you say what meds he's taking, and at what levels? He has oxygen? Is he doing the vitamin D3 regimen, which you can read about here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ The D3 regimen has been very, very helpful for a lot of people. And is he willing to try busting (ending cycles and preventing new ones using psychedelic substances, potentially at levels that cause no psychedelic effects at all)? Many people have come to this site feeling that they were out of options, and busting has given them their lives back. You can read about busting in the numbered files in the ClusterBuster Files section.

My greatest fear over 23 yrs of episodic was that it would become chronic. I was obsessed with the thought. Used to dismiss comments on ch.com that chronics preferred it to episodic.... thought they were nuts. Then it happened.... and the reality was FAR less than the fear of the unknown had led me to believe. Hits were lighter, aborts worked better, triggers were reduced or went away, depression lessened. It still aint no damn fun...but if ya got the right attitude, a plan and the right tools..... it's controllable. Best Jon

Not sure if he knows the definition of chronic. Some authorities say only two weeks PF for a year and other say four weeks. Many of us go thru that fear when we have a cycle that is not the norm or lasts longer than usual. I have read that for some people they actually find it easier! They say it beats the wondering if they will start a cycle this week or not. Sorry, that is the best I have to offer. What is he doing for his CH now? Has he found no way to get it under control at all?

Rim', I wouldn't jump to that conclusion. People with CH are constantly trying to connect events and see causes, but CH is so variable that you can very often be wrong in your guesses. As you can see from the posts above, some people with CH do very vigorous training and believe it helps them; others believe it brings on attacks. They could all be right. When you have your CH stabilized, and you are doing the D3 reliably and maintenance dosing with seeds or truffles or whatever you have, I'd strongly recommend that you go back into training.Â