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Everything posted by John

  1. I had the same thoughts today....People are raising all kinds of money on gofundme for just about everything, so why not utilize that to help our cause? The sooner bol-148 is available, the sooner we can get back to 'normal', if any of us are actually 'normal'. lol.
  2. I never have. Meant to, but didn't. I started last Thursday as per the new doc, but I think the only reason she wants me to keep a diary is to try to qualify me for botox injections, which is not going to happen. I don't care how much of a kick back she gets for giving them, she ain't getting any from me. :
  3. 2 am wake up call. Except this time, it is not the beast-my head is plugged up tighter than a frogs butt and I couldn't breathe. So, this leads me to believe 1 of 2 things; This will be the first time that I will have my sinus allergies at the same time as my CH cycle, or my cycle has ended. Hoping for the latter-I feel human again.
  4. Unfortunately, no 02. It will be a rough week, but it'll be worth it... The only 'good' thing to come out of this cycle is that since it's been so long, a lot of people have been exposed to me during an attack. When they see the droopy eye, running nose, and look of desperation in my eyes, it dawns on them just how severe this is. One guy at work asked if I was having a stroke. That gave me a bit of a chuckle. People are a little more understanding. My boss even watched the nat geo(?) special about dosing and clusters.
  5. I dosed Sat night. I did not take enough, and I didn't detox first. I have some left for friday night, and I am going to force myself to detox. The Treximet stopped working. I used to be able to take 1 and knock out an attack in less than an hour. Since Thursday, I've taken 3 trex, and last night went without, and got the same 3 hour hit. However, they have been milder since sat night. My mood was better on sunday. Friday night is the next time due to work schedule. I suppose that I can hang in there for another week-been doing it this long. I still am leaning towards an environmental allergic reaction as a trigger this cycle. I think something outside wants to kill me. Hopefully, the week flies by.
  6. What are the chances that I have gone from one to the other? This cycle is the absolute longest ever-6 months and counting. Regular 1:30-2:00AM hits everyday since Wed. I usually have ~2 month long cycle, and few random night attacks. I forget what it feels like to be human. I am constantly tired and grumpy, and not much fun to be around. Went to a neuro Thurs and got 2 scripts-treximet and depakote. Took 1 depakote, and got my arse handed to my @1:30am and thought it was a rebound HA, but after this long, It must've been a coincidence. I am either turning chronic, or something outside this house is trying to kill me. I may need to go elsewhere for a couple of days to see if that helps. We moved Jan 4th, and cycle started after that. :-/
  7. Energy drinks are my go to, unless I'm in a full blown attack, in the middle of the night. I used to use Monster, but NOS sits better with my stomach. This cycle sucks. Sun, rain, hot, cold, everything gives me a hard time. Seeds are not working and I can't get anything else. 6 more days to doc appt....
  8. O2 is unavailable at this time for this cycle,as is shrooms and paper. I plan on dosing again Tuesday night with the seeds though. For the last week, I have found a definite trigger---SMOKE. Campfire, paper, exhaust, engine paint burning on a new engine, and header heat wrap curing. Type of smoke plays a definite part in timing--between exposure and hit. @ hours and counting currently, after being outside while the neighbor was burning boxes about 2 hours prior to the hit.
  9. http://my.opera.com/richardinbellingham/blog/management-of-cluster-headache-via-supplementation-exercise-dietary-change-and I am in the longest cycle I have ever had to date. Jan til now. I have taken too many pills this cycle-all of my stockpile(9/mo. x5mos) of Treximet is gone-forcing me to detox. I have dosed with RC seeds 3 times since Feb, with the latest time last night-35 seeds. I felt the usual effects, and slept good-for a change. I woke up @ 9:30 to a light shadow, which is standard after I dose. But by 10, it was full blown. I grabbed my hat, headphones, and a Monster and by 10:30 it was gone. Hoping this is the end for the year. I go to see a new neurologist Jun 7th. Planning on busting again later this week.
  10. http://www.dailymail.co.uk/health/article-2121496/Mother-suffered-200-HEADACHES-day-cured-brain-zapper.html?ito=feeds-newsxml Found this article this morning...sounds like the same implant.
  11. Is anyone still using this method? I stopped taking the vitamins when my cycle ended, and just started a new cycle 2 days ago. So, I have started taking it again, too little too late, I'm afraid.
  12. You can add me to the list of those who use this occasionally to abort. Doesn't work everytime, since the beast is a jokester that likes to change the rules, but if I catch it in time....
  13. I have noticed, on more than one cycle, that if I catch a cold, I get relief from my cycle. This is only temporary, as I still get hits through early winter, and then once the weather starts to warm in early spring. Surely, I can't be the only one. My cycle started 2 weeks ago-2 weeks after a minor head cold and bronchitis. I caught the cold back from my wife on Monday, and have had no hits since. Not even a minor shadow. Sinus HA, yes, but no CH. I did take a treximet last Thursday, but I had shadows most of last weekend. As for cold medicine, I have taken Advil cold and sinus, claritin, and generic mucinex. But I started thinking, and I can not remember a time that I had a cold AND CH at the same time-and I don't always take these meds. :-?
  14. Yes. 1 to 2 droppers per week now. I've been unable to monitor my BP regularly, and the last time time it was a bit high(for me) so I started cutting back on it-to see how it went. I haven't used the RC seeds to bust with yet, as my schedule hasn't allowed for it. This weather needs to dry up though...would be a lot better! lol
  15. Well, since my last post on April 11, I have come to fully believe in this 'treatment'. When I skip 2 days, the shadows come out to play. I have also been supplementing the Licorice root(maybe 15-30 drops/week now) and I added the Fish oil O3, and Magnesium to the roster. I missed the part about the calcium citrate...will have to check into it though. As of last Monday, I'm taking 4000iu D3,1x360mg Omega3/1200mg fish oil combo,2x400mg/15mg magnesium/zinc combo. Still drinking 64oz++ water/day(filtered city bleach water), the occasional Monster Energy, and the seldom coffee. Also in the process of quitting smoking(trying the E cig route-down to 5-6/day instead of 1/2 pack), and diet changes(no more processed foods or fast food,hormone laced commercial meat. Trying to buy everything we can locally grown now.). I've had CH for the last 12 years, and I am now in total control, at last! What really gets me is that I fought the docs for O2. Guess how many times I've needed it since I got it. Exactly.......3 times. Better to have it and not need it, and this cycle is hanging on, but the weather is to blame for that. Normally, I would be good to go by now, but Mother Nature has had other plans with all of the rain. I'll show her! lol. PF days and nights to all. With the nice weather comes more work, so my posts will become infrequent. But I will try to get in here and check up every chance I get.
  16. The strength I'm taking is 2,000iu/ea. 6 pills =12,000iu/day. I don't always take it with food though. Most times my 10AM accompanies a snack @ work, banana or apple, or yogurt. And no, I'm not taking all 3 together. I am working that way, but not just yet. Today it rained again, light drizzle most of the day from 10AM til about 8Pm. The shadows were trying hard, but I fought harder. They never got more than annoying. If I add the rest of the regimen, I can only assume that I would feel even better.
  17. UPDATE! I am now taking ONLY the D3 supplement daily, with a dose of Licorice Root every 3-5 days. I take 3 D3 around 10AM, then 3 more with dinner, usually 6PM. I have been relatively PF for about a month now. I have had a couple minor shadows here and there, but nothing that a Monster doesn't cure. I have also experimented and skipped a day here and there to see what was working. I used the whole bottle of Skullcap & the 1st bottle of L/R, but kept taking the D3. There was no change. Still no HA's. So I skipped the D3 for a day, and got a mild hit at bedtime. I still get minor hits when I get really frustrated or annoyed, but I grab a Monster and they're gone. So, for me, for this cycle, the D3 'bombing' has worked!
  18. Mine USUALLY is an effect of the CH. Starts in my temple/eye area, then radiates downward. But the last few days never manifested into a CH, just the neck/muscle pain...This thing changes more times than I can keep up with. >
  19. I am now almost convinced that CH is environmental. I am like a barometer-I can tell when rain is coming a day early. Like clockwork, which in Ohio @ springtime=suck. Also, STRESS is bad. When in cycle, I'm very high strung. I wish I wasn't-that I could enjoy the PF days/time that I get, but it's spent wondering when the big hits are gonna come. I am prepared now, but it doesn't make it easier...But I have noticed that when my mood starts to tank, the worms come out to play havoc in my head. Maybe Pink Floyd knew someone with CH? I guess it's not just spring and fall....but the wet weather really bugs me. But I'm good if it's a cold, dry day. Or even a warm,dry day-just as long as it's DRY. Anyone else?
  20. I've had minor success with a combo of the D3/licorice root tincture/skullcap. Started D3 on the 14th. I have only had 1 hit since then, and it came after a stressful day at work and accompanied an unusual knot in my neck. It woke me up @ 3AM, and was full blown, so O2 was useless. Tried to tough it out, but was exhausted, so I grabbed a treximet I've been getting weird HA's last couple days though. I have all of the symptoms of a CH, but no headpain in the temple/eye area. Knot in my neck at the top of my shoulder that radiates upward to my ear. Had a heck of an earache for 2 days this week, but better now. I skipped the tinctures/D3 for 2 days after the trex and felt like crap. But once I started taking them again, I feel better. I have taken more D3 than the lic root+ I'm up to 10,000iu/day now.
  21. I have to buy my own NRB mask. They only provided a plain face mask like this one. Also, no luck on the portable tanks.....yet.
  22. No. I'm only taking 4000iu/day. I wanted to start slow because of taking other stuff as well-licorice root/skullcap tinctures. I also did not start the Omega 3 either though...
  23. OK. So I got hit again on Sat, so I fired up the o2 machine, hoping to abort before it ramped up, but it failed, as expected. So, on Monday, I called the med supply girl back and asked what I would have to do to get the machine swapped for tanks. She sounded pi$$ed. She couldn't believe that they brought that instead of the tanks that they were told to bring. So, the soonest they could send someone was today@ 1:30PM. I leave work to be here, and the guy shows up @ 2:00-after I called the med supplier to make sure I didn't get my days mixed up-who then called the driver and told him he was late and to hurry up. He finally shows up and brings in 2 bases then goes back out to the van for the tanks-only to come in and apologized because the 2 tanks were EMPTY! WTF. So he tells me that he'll bring the tanks tomorrow and leave 2 small tanks for tonight. No way. I've been yanked around enough. He ended bringing the tanks tonight @ 5:30.This is the same guy that when he brought the machine, forgot to grab the fitting that hooked the line to the machine-which took almost 2 hours for him to track one down for me. I asked him if my 1st month lease was free for all the BS I've gone through, plus leaving work for 2 hours for nothing, and he kinda just blew it off. So I'm gonna call the lady at the med supplier again and ask her about it though. But he did tell me that when I don't need the tanks after my cycle ends, to just call and they will stop billing me, but leave the tanks here-so I might not call and complain about it. SO, I got my 2 M tanks(1 size down from welder's tank), a 15LPM regulator(max), and a plain mask(for now). I also have my RC seeds(still detoxing though), licorice root(3 doses so far),skullcap(2 wks so far), and vit D3(2 days@4000iu/day). Had to choke down a trex Monday at work to make it through, but surprisingly, it worked without the recent side effects...so a note-do NOT take treximet for more than 2 consecutive days(if needed at all). So far, intensity and frequency have decreased. And I started to get the 'goofy' shadows today-the ones that come and go so fast you're not even sure it hurt-that I usually get when I find a med that works. So something is helping, I just need to figure out what it is-if it's any ONE thing. ;D
  24. Started the D3 2 days ago...still awaited results
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