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Everything posted by Lieutenant2

  1. Like most, I've been absent for a while. . .just wanted to pop in to report some results of my experiments. I had been having limited success with RC seeds, getting a few days of relief, but the CH steadily built back into full force after a week or so. After upping the dosage to about the maximum I was comfortable with, I started to chart exactly what was happening and how these "rebound" headaches started and grew. Long story short, I felt the seeds were doing their job, but I would get "blips". A shadow here and there. . .a CH that would jump up to a K8 or so, but disappear in 10 minutes. Completely erratic. So I went in search of something that would smooth out these after-shocks. After much reading, I settled on trying a regimen of 300mg of St. John's Wort three times per day. I won't go into all the science behind it, that would make this post way too long. But I am confident that the SJW helped to even out my serotonin blips after an RC dose. I haven't even thought about a headache in almost a month. I'm not saying this is the answer for everyone, or even for anyone but me, but take it for what it's worth, do the research yourself, and consider trying it if you've exhausted all other options. I welcome any and all other comments from anyone who has had experience with SJW.
  2. Hmmmm. . .well, at least this seems to disprove my theory, at least partially. There doesn't seem to be any concrete link between CH side and dominant hemisphere in the brain. Which seems like a simple thing, but I find it helpful. . .this kinda points to the notion that the malfunction that causes CH doesn't have a direct link to cognitive function, and that it probably is isolated to the HPA axis. So, that being said. . .why in the hell do some of us get hit on the right, and some on the left? What determines that?
  3. Interesting results already. . . Mystina, if you don't mind me asking. . .what percentage of the questions were left vs right? Mine is an obvious 3-15 on this. Are you closer to a 10-8? If you are the type that wants a third choice, it may be because your brain hemispheres are close to equal partners. And you get clusters on both sides. Hmmmmmmmm. . .
  4. I'm sure this topic has been broached before, but I'd like to dig it up for some new perspective. Is there a prevalent side for these things? I've heard of righties, and lefties, and also of this thing changing sides on people. . .but are the majority of us suffering CH on one side moreso than the other? If so, why? Is it dependant on the routing of the trigemenal nerve? The biological finction of that half of the brain? Hemispheric dominance, maybe? Most of my work is done by the right side of my brain, and that's where my CH lives. I'm wondering if there's any pattern? Do you know your dominant hemisphere, and if so, does it match your CH side? This link has an overly-simplified brain hemishpere quiz. . .it's not the most scientific thing in the world, but it's a decent predictor in 2 minutes or less. Would people mind chiming in with their dominant brain hemisphere and their CH side? I'm curious. http://www.web-us.com/brain/braindominance.htm
  5. F'ing sad, man. And yet it makes me think. . ."there but for the grace of [insert your preference here] go I". For every one of us who has found a way to make this thing more bearable, how many out there haven't? Misdiagnosed, called "crazy" in all its various forms, simply without internet access to educate themselves. . .wow. How do we let more people know? The medical community isn't going to do it.
  6. Bob, Two things I'll add: 1. Don't discount doing all the reading and research you can. Yes, a bunch of us could give you advice on what we've done and you could try it, but knowledge is empowerment. The more you learn about this monster, the more it puts YOU in charge. And being empowered to kill this thing (or at least knock it out know and then) is a great feeling, and much better than simply listening to a bunch of people saying "take this" or "try that". 2. Les Genser articulates this point much better than I can, but I can not stress the importance of this enough: your doctor can not write a prescription for anything that will treat your CH. It's a sad and shocking fact, but it's reality. Verapamil, Imitrex, Prednisone cycles, you name it. . .they're all hand-me-downs being used off-label, they don't treat the core problem, and the side effects are awful. My best advice is to start with a pure, clean sample. Get yourself off of the pharmaceuticals. Find an abortive that works for you to help get you through the detox (sounds like the oxygen is already working for you, so that's good). Eliminate all of your known triggers (Alcohol? Tobacco? Lack of sleep?) Then, start trying some of the regimens suggested on this site and others. Personally, licorice tincture toned my CH way down, then I went to the seeds for complete relief (that process is still in the works, but so far so good). You may find relief with this, or with the D3/fish oil regimen, or with melatonin, or busting, or you may discover something totally new that works. The key is to know what your melon responds to, what makes the beast tick, and how to kill it. Good luck, man! Lots of good info and good people here to help you.
  7. I can't say that it did. . .but like I said, it was an extremely small amount of seeds, in comparison to what we'd normally "extract". I'm just wondering what the mechanism would be for this SPUT method to work? I understand how LSA works, but not how the simple act of putting the substance under your tongue would work. Anybody?
  8. Hey CHF. . .just a personal anecdote about this. I tried this little experiment myself last night, didn't plan to, it just happened. Around 7pm, I started feeling the usual signs of a hit coming on. I was about to reach for an energy shot and ride it out, but instead I grabbed two seeds out of the freezer, squished them open with pliers, and stuck them under my tongue. Now, this is purely anecdotal and unscientific and could be a total fluke, but the headache never developed. I kept the seeds there for about 45 minutes while I did stuff around the house, and no headache at all. In short, it's probably worth a shot. I will say that my CH doesn't seem to be as severe as most, and I am extremely drug-sensitive, so a larger dose may be in order for your daughter.
  9. One angle I always thought of pursuing goes back about 15 years. I was seeing my (former) doctor for a routine physical, and he asked me how things were going. Seemed like casual conversation to me, and I told him I wasn't getting much sleep lately. Out of nowhere, he has me filling out a questionnaire with the Lily company logo on it. Five minutes later, he's back with a prescription for something that would "help me sleep". He had prescribed Zyprexa, a powerful anti-psychotic. Yes, it certainly helped me sleep. But it's label use is for people who hear voices and see things that aren't there. He either assumed I was schizophrenic, or was using this drug waaaaaaaay off-label. I was young and stupid, so I took it every day for several months without even knowing what it was. After I realized I was turning into a zombie, I did my own reserach and flipped out. The doctor refused to take my phone calls, so I told his receptionist I was coming in to have a chat with him in person. When I arrived, she had a police officer there to escort me off the property. Keep in mind, I didn't make any threats, I just wanted to talk to my doctor about this prescription. Thus began my eternal hatred and distrust of the medical profession and the pharmaceutical industry. Lily was paying his country club dues or something, and he needed to find a few more "patients" for their poison. I would love to know if Zyprexa played any role in screwing up my melon. Aside from the occasional antibiotic or pain med, it's really the only prescription drug I've ever taken.
  10. I'm anxious to hear more about this too, CHF. . .I remain convinced that there is a very strong link between CH and screwed-up sleep patterns. I don't know if it's a chicken/egg thing, or just a self-perpetuating cycle, but the bottom line is that they do seem to go hand-in-hand. The sleep that I had last weekend was totally deep and restful, whereas my usual "sleep" consists of a lot of tossing and turning. It's pretty rare for me to get any actual REM sleep on most nights, and I was out like a light with the RC. I tried digging into papers on circadian rythms and how they affect brain chemistry which could in turn affect CH, but most of what I read was just way over my head, medically speaking.
  11. I haven't seen this mentioned yet, but please also look into this option offered up by Les Genser (below). Some of us have been experimenting with licorice tincture to very good results. The thing you will probably discover is that a therapy that works for one person may not work for another, so you'll need to arm yourself with plenty of information, and settle in for lots of trial-and-error. Keeping a journal is an absolute must, by the way. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254
  12. Nah, there's no money in it! Now, a study on erectile dysfunction and/or hair loss? THAT'S a goldmine! HAHAHA! We have this thing we use for rehab at fire scenes, it's basically one of those folding bag chairs, but the arms have been replaced with plastic-lined holes that you put your arms into, and cool (not cold) water flows around your forearms. Because there are so many blood vessels close to the surface of the skin, it cools your core temperature down amazingly fast. I'm considering trying it next time I feel a hit coming on, just to see if lowering my temp a couple degrees could have any affect.
  13. I just stumbled across this blog post on CNN's medical page, and I found it interesting for two reasons. First, it actually gives some credence to CH as a standalone affliction, and not some weird subset of the group "headaches"; second, it touches on the whole sleep/circadian rythms angle as related to headaches. http://thechart.blogs.cnn.com/2011/05/03/get-some-sleep-daily-headaches-how-are-you-sleeping/?hpt=Sbin I know the blog post is about an apnia headache, but it reinforces something that has been pestering me for a while. How closely linked are sleep cycles (or disruptions thereof) and CH? What is the cause-effect? Is it a chicken or an egg? I really believe there is some knowledge to be gleaned from the sleep angle, as well as from the core temperature angle. I have always had difficulty sustaining REM sleep. And I have just recently started to take my temperature during hits, and have already found that it's elevated. Hmmmmmmmm. . .
  14. Lieutenant2


    WV is a big state. . .can you be more specific? I can be "in" WV in 20 minutes. . .but I'm also a 3.5-hour drive from the state capitol. (Kinda like Les. . .I'm half an hour from WV, MD, OH. . .)
  15. Well Potter, glad you asked (not really, but I'll humor you). My particular station runs engine and heavy rescue, no medical. So, we don't have oxygen or anything else you might find on an ambulance, short of maybe a first aid kit. Now, does that mean I don't have access to oxygen? Certainly not. I could have a tank and regulator pretty quickly, but my issues are the same, regardless of who owns the O2 (me or the city). It's just not my chosen path for dealing with CH, I prefer to search for the cause of the pain and stop it there. The licorice has provided part of the answer, I'll continue to search for the rest.
  16. Thanks for that link, CHF! That looks cool. . .but until they reduce the size another, oh, 1000% or so, it won't be going with me. I'm one of those guys who cuts the handles off of toothbrushes to save an ounce of weight. :-)
  17. Thanks, CHFather. . .as I told Les, I am more than willing to be a guinea pig for something that doesn't come from a pharmaceutical conglomerate! Sorry if I was misunderstood. . .I am definitely not critical of oxygen at all. I was, however, being critical of one particular person who chooses to dismiss any and all new ideas with that exact phrase. But I digress. I've just chosen not to go the oxygen route due to my lifestyle. I can't have a tank at work, I'm rarely at home, and I'm fairly active. . .if I'm not sleeping, I'm on a mountain bike, skiing, climbing, kayaking. . .none of which are conducive to carrying a tank. Don't get me wrong, there are days when I really really really wish I had an abortive method that was as fast and effective as O2! I am tinkering with the licorice as an abortive, I think Les mentioned this earlier. A couple days ago, I mixed a dose of licorice and 1000mg of taurine powder in an ounce of warm water, and it worked at least as well as an energy shot, if not better. Close to full abort in about 10 minutes, without the caffeine jitters of the energy shot. All of that being said, I still have a bag of RC seeds in my freezer, and I am seriously considering it if I backslide at all.
  18. Just checking back in with an update on my licorice experience, and in the interest of keeping this topic alive. . . I've done a poor job keeping my CH diary, but I guess I'm about six weeks in. I did three weeks of 3x per day, dropped down to 2x per day, and was scheduled to go to 1x per day this week. During this entire period, I've had many stretches of pain-free days, lasting 3-4 days or more. More importantly, during this entire period, I haven't had a single nighttime hit. Not one. Now, for the bad news. . .the monster is still there. I do get hit, usually in the afternoon, and they are still intense. I pound energy shots, that's my only abortive. They take the edge off and make it bearable. I've had a few days in a row of bad hits this week, so I am staying on the 2x per day regimen for now. When things slow down a bit, I will drop to 1x per day. So far, my blood pressure remains normal, so I don't see any danger in it. So that's it for my ringing endorsement. The licorice hasn't provided the magic bullet, but it has improved things tremendously. For about $12 for a month's supply, it's worth every penny.
  19. Dave, I'm sure Les will chime in on this with much more knowledge than I can add, but you should probably check with your doctor on the blood pressure thing. Licorice will elevate your BP, I guarantee it. I never put a cuff on to check it, but there were times when I was on 3x a day that I could hear my pulse in my ears occasionally, and that's starting with a very normal BP.
  20. Handy, that is some pretty damn good news. . .and thank you for being so thorough! I like to read detailed information like this, and I do believe this licorice treatment deserves a much closer look for both episodics and chronics. It remains the only treatment I've tried that absolutely goes to work on the source of the problem in the HPA axis, and isn't just a short-circuit of a related pain mechanism. My CH haven't gone away, but licorice (and now skullcap) have changed them for the better. I made it through Sunday pain-free, and got to about 8pm on Monday when I felt one coming on. . .and it panicked me, because I was far from my trusty energy shots. I keep them in my car, but not in the fire engine I was in that day. Damn. But this hit never got beyond about a 4, and it went away quickly. The best thing the licorice has done for me? I don't think I've been hit one time at night since I've started taking it. All of my hits have been during the day, which is a welcome relief in and of itself. Now, it just comes down to finding the right maintenance dose, and possibly the right combination of things to go with it that will help keep this thing under control!
  21. No, no. . .by all means, Les. . .I am more than happy to help in any way I can. I will definitely add the skullcap to my morning dose as well as my evening dose. In a little over a week, I plan to go down to one dose of licorice (and skullcap) per day. As for recent progress, I went pain-free from Wednesday until about 10pm on Saturday night. I got hit pretty hard on Saturday, although it didn't get too intense (maybe a 6, tops) it lasted what seemed like forever. Probably close to 2 hours. Pain-free since then, though. I'll check back tomorrow, after adding the skullcap to the morning dose!
  22. Thanks Les. . .yes, that is pretty accurate. They are much less frequent, yet less predictable. I would have to say that the character of them has changed a bit, too. They seem to "pulsate" sometimes, if that makes sense. Instead of an hour of straight k8 pain, it'll die down for 5 minutes, then come back, then die down a bit. The only thing I've ever used to abort has been the energy shots, and they do seem easier to abort now, although I have been making an effort to catch them sooner and I have shots stashed everywhere. I hear ya' about the night-time hits. Horrible. But three weeks without them has been nice. At night, I add the skullcap to the licorice. There may be something to the combination beyond just the calming effect?
  23. Sure thing, Les. The ones I've been getting are pretty typical of my usual. . . I get very little warning, except a little tingling in my sinuses on the right side, then POW. It's all orbital/temporal, I'll call it an 8 on a scale of 10. . .it's debilitating, but not quite to the point where I'm rolling around on the floor. If I let it run its course, it will last about an hour. I've had decent success with energy shots (as long as they have at least 1000mg of taurine), so I keep a case of them on hand. If I chug one quickly, I can cut it down to about 20 minutes. When I first started on the licorice, the frequency definitely dropped. Then the schedule became erratic, I wasn't getting my usual afternoon hits, and 3am hits, they were just random. Since then, it's been three days off, a couple days on, but rarely more than one hit per day. And the real odd part: nothing at night. I haven't been awakened by one of these things in. . .damn. . .three weeks, I guess. Now, I haven't yet determined if I'm truly a chronic or an episodic in a long cycle (or with very short off-cycles). This mess started for me about 14 months ago. . .it took a good six months to figure out what it was, of course. Since then, I've had short breaks. . .one somewhat longer break following 9 days of prednisone, but never again. I will say this, I look forward to reading your posts. I share your views toward the medical establishment in general, and the pharmaceutical industry specifically, so the cure I find for this will be one of my own prescription, so to speak!
  24. Quick anecdotal update on my licorice experiment. . .Today is the end of three weeks taking the 4x tincture 3 times a day, and I'm cutting back to twice a day for a week, then once a day. It's been hit-and-miss. . .I've gone for 3-day periods totally pain-free, followed by a day of 3-4 major hits. However, in this three-week period, I've only been hit once at night. They have been relegated to daytime hits, which are easier to feel coming on, and I can take the egde off with an energy shot pretty quickly. I went through all of last weekend totally pain-free, then I've had pretty serious hits on Monday night, Tuesday afternoon, and Wednesday morning. If the pattern holds, I should be getting hit right. . .about. . .now.
  25. Thanks, Les! As someone who has been totally chemical-free for this entire journey, I'm pretty confident that I'm a decent guinea pig. Now, as for disruptions in the usual routine, that's what I'm trying to figure out. I haven't identified any highly-reliable triggers at all, except red wine. I rarely drink anyway, but it seemed like red wine would always trigger CH (histamine reaction?) However, the one thing that DOES seem to get out-of-whack when I'm getting hit is my SLEEP cycle. When my sleep gets interrupted, things start to happen. Bad things. That being said. . .after a few nasty hits on Friday, I was totally pain-free all weekend. Odd.
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