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      Welcome   01/25/2017

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  1. Kaaiohelo, ++++ Everyone's post above. I left the military in 93' and was never properly diagnosed while in service. To be honest, I don't know how I held it together while I was in service with my CH. My attacks weren't as frequent or painful, but got worse over the years. I would be a strong advocate for seeking medical discharge due to his CH. I hid my attacks because I was on flight status. I didn't know what caused them, but knew I'd be grounded if the flight surgeon figured out they were as debilitating as they were. That BAD decision on my part seriously hurt me for the rest of my life.... I didn't have my condition properly documented, nor did I allow it to be part of my discharge reason. For some reason vets have a significantly higher incidence of CH. I'd suspect it's something that we're exposed to in service that triggers it. I've read of others having anywhere from 80% to 100% disability through the VA for service connected CH. That's a LOT better than any retirement he could get by staying in. (IMHO). Accolades to you for being a good supporter! PFW, J
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  2. Aloha Kay, You Kama'aina or Kanaka? I know what you, the kids and your husband are going through and the good news is it doesn't need to be that way. Your husband is very likely vitamin D3 deficient and that deficiency is contributing to his CH. My name is Pete Batcheller a.k.a., "Batch" here at Clusterbusters. I'm a 71 year old retired Navy fighter pilot, a long time CHer and I don't put out bum gouge... Even though I still have CH, I no longer suffer from the terribly painful and debilitating CH attacks. Download the latest version of the anti-inflammatory regimen CH preventative treatment protocol at the following link. Be sure to have your husband share a copy with his civilian PCP or neurologist. Military doctors may decide CH is grounds for a medical discharge... and none of us want that. That way you'll all be singing from the same sheet music. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 You can also also scan the following QR code with your smart phone and it will download a pdf copy of the treatment protocol to your phone. The QR Scanner app is free. It takes less than 10 seconds to download and install. I'm also sending you a PM with additional information that will help prevent your husband's CH if the two of you follow the suggestions... If you do, the odds are in your favor you'll get back the guy you married... without CH... Take care and check you PM inbox. V/R, Batch
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  3. Sevral neurostimulator are on the market. In first place for migraene. Gammacore claims to lower CH frequency by 50% or so and should even be able to abort an attack. Gammacore original from europe 2011/12 turned out to be just USLESS for us. All positive threads do end after just 2-3 entries. People saying the unit may be successfull for the very first days just do turn rapid a usless junk! In all forums I've checked so far one can't find not one CH using this unit on a continuing base. Often called bullshit be whom tested... None of those units do any good to us. imagen gammacore beeing on your the market approx. 15 years and this site did not report anything about this unit. Or is it somebody beliving european CH are hidding a successfull treatment. Another unit called visto, same shit to us. A huge dam fu.. scam. Be aware before flushing a couple of 100 usd/month down the hill. What makes me especially sad is the fact people trying get profit ou off our pain. Yes I do call them assholes. If needed I'll confirm the assh... written! Thete are enough challenges in live. I do not need such people never ever Urs
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  4. I was at my neuro's office on Thursday, the gammacore representative was there to demonstrate the device and answer questions for the doc's, I sat in. I'm not sure the positives for the device outweigh the negatives, but the fact that something new can be added to our arsenal of weapons to fight the beast has to be a good thing. I tried it, feels like small electrical pulse on your neck, while that is going on, the corner of your mouth droops a little. Positives: 1. Portable, looks like a 2 headed electric razor, sounds like it also. 2. No evasive surgical implant. 3. No side effects (droopy mouth, stops when turned off) 4. No problem with TSA. 5. Shelf life is 18 months, if not turned on, not sure how long it is if turned on. Negatives: 1. Cost, $575, about 300 "doses" (if it is used up before 30 days, you can a "refill" for free), since this is new to USA, the manufacturer is offering $100 off, and I believe the rep. said the first 2 months are free if you are in the registry. 2. It works only for episodics, and only 47% of the CHer's tested (aborting the CH). There was no data on whether it helped the other 53%, they only measured aborting the CH. The ultimate goal is to expand it to work with migraine patients. They base the usage on a 30 calendar, once you turn it on, they start counting. Their representatives with be in Chicago for our conference in Sept. They are looking for approval for the 2nd generation model, which looks like a cell phone, and has a shelf life of 5 years, The rep. did not know that cost. I hope I remembered this correctly, a lot was going on. I know this does not answer all the questions.
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  5. Hi everyone. Our room block is nearly booked at the conference hotel, the Embassy Suites Chicago, O'Hare. While we do have a block at another hotel, the Comfort Inn - O'Hare Convention Center which is about 2.5 miles away, I'm sure there are some that would like to stay close. The Embassy Suites is an all-suites hotel which means that each of our guest rooms is a 2 room suite with a bedroom and a living space with a pull out couch. They all sleep 4-6 people. If you have a room and are willing to share, please post here. You are welcome to post specifics like you are only willing to share with a female, or someone who doesn't snore, or someone who doesn't laugh hysterically in their sleep for no apparent reason(guilty). Obviously room sharing also cuts down on costs for everyone! If you are looking for a room to share and do not have one yet, this is a good place to post as well. Please feel free to contact me at conference@clusterbusters.org with any questions. - Eileen
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  6. Urs, What the earlier photo of my fillet of the King salmon didn't show is what I do next. I take a tablespoon and scrape the meat from above and below the backbone on both sides. As you can see, when I'm done, there's very little meat left... "Spooning" the 40 lb King shown in this photo yielded nearly two pounds of very delightful sashimi and California roll makings... as did the fresh salmon roe... The tips, tail and belly meat were already in a brine when I took this photo. They went in the smoker a little over two hours later... Virtually nothing goes to waste with salmon the way we do it... What was left of the salmon in this photo went into a shrimp pot we dropped to 450 feet in Stag Bay, 25 minutes from the house in Pelican... Two days later we pulled the shrimp pot and this was the result. A half 5-Gal pail of 4-Spot Shrimp ~ 10 lbs of tails... And I took the anti-inflammatory regimen with ~ 15,000 IU of vitamin D3 every night... That made the entire 24-day fishing trip to Pelican, CH pain free. Four of us ate a third of the 4-Spot Shrimp along with some nice Lamb Loin Chops later that evening. It all went down great with frosty mugs of Alaskan Amber... I prepared a shrimp, mushroom and cheese omelet for breakfast the next morning... That still left enough shrimp to top our salads the next night to go with the grilled King salmon. Oh yes... That wasn't a sole... It was actually a 45 lb halibut... You can see why I can't wait to get back up to Pelican, AK... I'll make another trip towards the end of August for the Silver/Coho Salmon run... then we pull the boat out of the water, scrub the hull, service the outboards and winterize the house before flying back to Bremeton, WA. I'll spend the last half of September through late May of 2018 preparing for the next fishing trip to Pelican... Take care, V/R, Batch
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  7. First of all, you don't seem to have oxygen. A proper oxygen setup will reduce your abort time very substantially, without medical side effects. Knowing you can abort most attacks within 10-15 minutes might help with the anxiety, too. Any neurologist who doesn't prescribe oxygen is not an expert. The idea that if you don't treat your episodic CH properly it will become chronic is, I believe, completely ridiculous. Talk about making you anxious! That just seems like a very uninformed thing for the doctor to have said. Lithium is recommended to be prescribed only for chronic cluster headache, because of the side effects and because it has been shown to cause significant rebound attacks when you stop taking it. The article, "Treatment of Cluster Headache," on this page would be worth reading for you, I think: https://clusterbusters.org/medical-research-reports-studies-case-reports-links/ I know of a person who had CH and also anxiety and was prescribed lithium. I don't remember the dosage. While I'm sure that lithium helps many people with psychological conditions, for this person it seemed to have no effect on the CH and it seemed to make her more anxious just to know that she was taking lithium, if that makes sense. Triptan pills are usually not effective for CH, because they take too long to work. Maybe your attacks would end in 30-45 minutes without it. A sensible doctor would prescribe at least the oral spray, and probably the injections. Not everyone thinks that triptans are a good idea, but if you have oxygen you could use the triptan for breakout attacks that aren't helped by the O2. The only way the pills seem to help people, as I underswtand it, is if they know what time their attacks usually come and take the pill an hour or so before that. That's what I am remembering. Many people find that taking melatonin at night helps with attacks. Since as I understand it melatonin is a prescription drug in some countries, you might not be able to get it. If you can -- start at 9mg/night and work up from there. Please consider the D3 regimen described here. It might be kind of daunting to read the information even though your English is excellent, but the basic ingredients are listed in a table and that's most of what you need to know. Because it is so effective at preventing cycles or at least reducing how bad things are during a cycle, I think it has reduced many people's anxiety about their cycles. https://clusterbusters.org/forums/topic/1308-d3-regimen/ With all of that said (suggesting that treating your CH more effectively is likely to reduce your anxiety), anxiety and fear are things that many people with CH experience. And, yes, also depression. It has effects that are very understandably like what we call here PTSD -- post-traumatic stress disorder. Others might talk about how they cope, but I will say again that there are basic things you can do to make the experience less terrible. Some people find that psilocybin ("magic mushrooms") has had a very positive effect related to their emotional symptoms (and it also actually treats CH). You would have to decide whether you want to go that way. I'm not recommending it for you; just passing along the information.
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  8. HI Kay, your husband can beat this or he can find much needed relief. Tell him that there are people just like me who "feel his pain" and who are praying for him. Hopefully your husband has access to good doctors where you are. The moderators who have chimed in are wonderful, smart, caring people who have great experience and knowledge to share. Winter never fails to turn to spring. There will be relief and happiness. Hang in there.
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  9. Nice to wake up on a Saturday morning and see that the amazing spiny has already done what needed doing. This is the file about splitting Imitrex injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ This the mask she referred to: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit This is an alternative approach to using oxygen, not requiring a higher-flow regulator or the special mask, that has worked well for many: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ With more effective oxygen, the D3 regimen, and the other strategies spiny mentioned (energy shot, melatonin), things should get a lot better. FWIW, the agents used for busting don't show up on any standard drug-testing panels. In the file about LSA, you'll see that the seeds are legal to purchase and legal to possess. He could also try kudzu root, which is 100% legal and has been shown to be quite effective.
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  10. Welcome Kay, We think so very much of our supporters!! They truly are hero's. It is a very tough job. The Trex (sumatriptan) shots are the fastest working med that is prescribed.However, it does carry it's drawbacks. Usually patients are only prescribed 9 12 per month, which does not cover all the hits a CHer will have in a month. There is a way that they can be split into 2 or 3 doses and that is a big help. Now, bear in mind that trex is hard on the heart and can cause issues if over used. When they prescribe it, it appears that they are thinking migraine = 5-10 hits a month. As you know CH can be 5-10 hits a day!! Oxygen is the number one abortive out there. It must be used with a non-rebreather mask with a flow rate of at least 15lpm. Many need 25lpm at times. The most important thing to know is that he must exhale fully and hard, then inhale deeply, hold for a few seconds and then repeat. AND stay on the O2 breathing at a normal rate for about 5 minutes after the pain is gone. This way he will get an hour or more of PF (pain free) time between hits. Just breathing in and out will not do the trick. He needs to get all the CO2 out of his system. Ergo, the deep forceful exhale. The bag on his mask should re-fill while he is holding and exhaling so there is no delay getting another breath. Some people prefer the breathing tube over a mask due to face pain. And never strap the mask on in case he falls asleep and all his O2 gets wasted. There is mask available from our sister site for about 30.00 that is the best. The main reason that O2 fails for some patients is they do not receive proper instruction on how to use it. Initially he may be hyperventilating due to the pain, so just continue that until relief begins! Many, if not most of us have had to teach our Neuro's how O2 should be used!! Is he on a preventative like Verapamil? That is the most commonly prescribed and successful preventative out there. Cher's normally require very high doses. Say about 900mg a day. It is started at lower doses and increased over time. Blood Pressure needs to be monitored, as Verap will lower it. Often a 'bridging' med like Prednisone is given for about a week to help calm the CH while the Verap is building up. Pred is not to be taken long term. It can destroy his hips and even shoulders. So, minimal use to get something else working. It works so fast at the beginning It seems to be an angel. But that angel can really hurt him in the long run. If you look at the top of the main page, you will see about 6 listings for the forum. General, Share Your Busting Stories, Theory and Implementation, etc. The one that you want is the Clusterbuster Files. Start reading there. It has a great file on O2 use. Read it. Get him to read a printout too if possible. It also covers a lot of other stuff. Also in that file you will find a topic called the D3 Regimen. Just regular vitamins you can buy anywhere. It is for inflammation and has proven to be a big help for many of us. Lowers the intensity of the hits and slows the ramp -up time to give him a bigger window to hit the other stuff. Some have gotten PF just from that routine!! I strongly suggest that he try it for at least a month! Busting is a procedure he may want to try at a later date. The materials used are not tested for with a standard 'drug' test. And they clear out of your system in hours. They are generally looking for opioids and pot, not LSA seeds or Magic Mushrooms. Both will clear out of his system in a matter of no more than three days. There are ways to mitigate a hit or prevent it with common Energy drinks or Energy Shots. Even coffee is a huge help. Slam it down at the first sign of a hit. Most people like it really cold and use the shots because they are small and easy to transport. I use strong coffee kept in the fridge in the summer months. He should grab one on his way to the O2. He can take Melatonin (9-25mg) at night. That helps many. I take caffeine pills every day at 5pm for night time hits. Got sick of coffee and Energy Shots make me sick. Most of us find that the caffeine does not keep us up at night either. Weird, but true. Some people put an ice cube on the soft palate of the CH side and hold it there for relief. This is just a start. More info will provided by members as they read your thread. Thanks for being a great supporter!!! ATB spiny
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  11. I don't know about the cost. You can see clinical trial results here: https://gammacore.us/clinical-studies/ It doesn't look like a very good alternative to oxygen to me, unless O2 doesn't work for you (but O2 works for almost everyone when set up and used properly). Portability is of course a significant advantage over O2. Useless for chronic CH, it appears. I remember that one study suggested that it had some preventive effect regarding subsequent attacks. If that's true, it would be an advantage over oxygen. I always feel like I should add this to any discussion of Gammacore: In the clinical trials, some people got placebos (fake devices). That is a heck of a commitment, to agree that you might be enduring attacks with something that won't help you at all. My appreciation and admiration for the people who volunteered to do that is enormous.
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  12. Taqua, some basics. If you're diagnosed with CH, the first thing you want is oxygen. A doctor can prescribe that. It will abort your attacks fairly quickly, with no side effects. Most doctors are idiots when it comes to CH. You will have better luck if you can get to a headache center. There are certain standard pharmaceutical prescriptions for preventives and abortives in addition to oxygen. You are right -- there are no standard "pain" medications that will help you. If you can't see a doctor or one won't prescribe oxygen, we can talk about alternatives using welding oxygen. Check on this list to see if there's a recommended doctor near you. The vitamin D3 regimen, described here, helps most people. Not usually immediately . . . but over time it has been very helpful. Try drinking an energy shot such as 5-Hour Energy, or maybe even a strong cup of coffee, at the first sign of an attack. That might help. Consider taking melatonin at night, maybe starting at about 9mg and working up until you find a level that works for you. I'd suggest that you look at the "Triggers" document over in the ClusterBuster Files section of the board to be sure that you're not making things worse for yourself. Alcohol is a major trigger for almost everyone with CH. Food with MSG in it also seems to have bad effects for many.
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  13. Welcome! Sorry you need to be here, but glad that you found us. I have not heard of SAM-e. Is that something being discussed online? Is it a pill? Yes, that grain of salt is a good idea. Ok, looked it up. s-adenosylmethionine Primarily used vitamin supplement for arthritis and depression. Then many other 'uses; added to that. Nope not tried it and not likely to either. At least until there is some real data on its' effectiveness. The D3 Regimen, when taken in it's entirety is very helpful in reducing intensity of hits and for some even ending cycles. And It is good for you. I suspect that most if not all of us have gone thru the 'I had those once' thing on more than one occasion. I also suspect that many are saying they had headaches for two weeks or something. Not the same at all. They just think that they know and have had what you are experiencing. They are so wrong. While very annoying, we can at least be happy for them that they are wrong! To me, the worst part is all the suggestions on how to treat your "headaches'. Well, first, they aren't headaches!! And no, your Tylenol will not work. Nor will your Oxy. Do you have O2 with a proper set up? That can be pretty vital in cycle. Glad that you have been reading here. There is a wealth of information collected overs years with input from sooo many CHers.
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  14. I agree that the parasitic predators that depend upon people's ill health to exorbitantly profit are very low. I appreciate all your research on the subject and it definitely makes me pause almost as much as the $500 a month makes me pause. Actually $500 a month just keeps me away from it totally. One notion that I have in the back of my assessment of this is that when I showed the medical journal article to my neurologist that specializes in headaches she told me that the lead researcher of the panel who led the FDA approval was her Mentor back when and that she had complete confidence in him. Never the less, I'm not rushing into this by any means and it does sound like there's a large possibility that these guys are scamming us. Thanks again for your research and for relaying it. I apologize for any typos that might be in this message but it's late I'm tired and I do not have the patience to try to edit these little windows.
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  15. Hi Anita, just wanted to let you that I am sending you my prayers so that you never experience a headache again in your life. I see that you are improving. Was it the shrooms?
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  16. Thanks Spiny! I'm going to start a new thread about seeds/shrooms. Hope you can pipe in. Thanks! Jimmy
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  17. I appreciate all of the information in response to this post. There is still much to be learned about the gammacore. I don't know that the stimulation to the vagus nerve is electrical or if it's Sonic. I'm not an electrical engineer. Neither am I stupid. I do know how to spell. Keep the discussion going. Thanks, again
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  18. Padre if you have success abording an attack by massaging the vagnus nerve at the neck I guess the gammacore may be of use if not, I would wait for others confirming so you dońt loose the money!
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  19. I spoke with the folks at gammaCore today (7/19/17). The cost is $575 per month and is not (so far) covered by insurance. Your physician can sign up at www.gammacore.com and prescribe the device for you. There is a specialty pharmacy involved and once your authorization and payment is in place it's sent to you within 2 days.
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  20. Thank you Matt, Spiny, Bejeeber, CHfather, and Twisted-Melon for all of your comments and help. This is the place where I am getting so much support and help....all thanks to you. Enough about me! How are you guys doing? Is life pretty normal and good for you guys right now? Are you guys managing the beast or have any of you kicked the beast out of town recently? The 80MG of Verapamil I am taking doesn't feel right. I feel like I did some speed or something. Sort of a pressure feeling in my chest and a chemical taste in my system. But good news is that I haven't had a night attack in over week so that means I am sleeping which I desperately needed to do. I keep feeling and thinking that I am coming out of my cycle and the beast will be gone for a long long time. I need a long stretch of pain free days for that to happen! I had 2 day time attacks last week that ripped me up bad and I went on this forum and starting typing to you guys about seeds. I was getting desperate and was ready to try seeds. I felt so "sick" as I was typing I lost the page and never sent it. But that is where I was on Sunday, hoping for seeds help. Maybe even ready for shrooms! I am so grateful right now that I am fairly pain-free, I don't think I could have been able to handle more multi-attack days and nights. It's been over a month that this cycle has been going. I can't stand taking all of the medications. It feels unnatural and unhealthy taking them but if they work, I have no choice but to ingest. I'm also sort of worn out right now of trying to figure out what works and what doesn't work. I've been mostly caffeine, sugar, gluten, and dairy free for almost 2 weeks now and my improved health may be because of it. Who the heck knows! I miss exercising. But if I workout, a nasty headache is almost certain. I sure hope you guys aren't in any cycles right now. And I pray each day that you will never experience a headache again. I would give every dollar/possession (happily) to never experience that horrible left eye ball pain again. My friend at work has been dealing with this since he was a child and he sort of is resigned to things. I think he takes a huge dose of Verapamil every day. I'm trying to encourage him to try new things but he basically has tried everything he tells me. He thinks he just has to "grow out of it" in time. Here is a quote from my Buddhist mentor Daisaku Ikea that I hope gives everyone strength and courage to keep fighting and believing that this can and will be defeated! Wishing you and your families good health because that is really what's most important. To be healthy. To your excellent health always, Jimmy- Hope transforms pessimism into optimism. Hope is invincible. Hope changes everything. It changes winter into summer, darkness into dawn, descent into ascent, barrenness into creativity, agony into joy. Hope is the sun. It is light. It is passion. It is the fundamental force for life’s blossoming.
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  21. This may sound off the wall, but pick up some Nature's Bounty 5,000 IU vitamin D3 softgels, some Nature Made 400 mg magnesium softgels and a bottle of Children's liquid Benadryl (Diphenhydramine HCL) allergy medicine. Rationale... If your son has CH, he is very likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of his CH. You can download the latest version of the anti-inflammatory regimen CH preventative treatment protocol at the following link. Be sure to share a copy with your son's PCP or neurologist if time permits. That way you’re all singing from the same sheet music. I posted this treatment protocol on 21 January, 2017. As of the 14th of July, 2270 copies have been downloaded. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 The anti-inflammatory regimen CH preventative treatment protocol will explain the need for vitamin D3, magnesium and the Diphenhydrmine (Benadryl) in detail. You can also scan the following QR code with a smart phone QR code reader and it will download the same pdf treatment protocol to your smart phone for reference. The QR code reader app is free to download and use. It takes less than a minute to download and install. I fish Pelican, AK twice a year for a total of a month and another week at Ketchikan for the family salmon derby. As a chronic CHer, I always take the anti-inflammatory regimen supplements and Benadry (Diphenhydramine) as even in Alaska, there are different types of pollen that can trigger a CH. I never let a CH even get close to spoiling good fishing... I'd start your son on the anti-inflammatory regimen as soon as possible before the flight as even the flight to AK can trigger CH. This regimen is so healthy for us I have my entire family taking it and I'm the only one with CH. That includes my seven grand kids... The young ones get 50 IU of vitamin D3 per pound of body weight per day... The two over 17 get the full 10,000 IU/day vitamin D3. Take care and please keep us posted. V/R, Batch
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  22. Ice-pack helps me. also make sure he stays properly hydrated and his blood sugar doesnt get too low, which are givens lol.
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  23. Thank you to all the advice, I am now on day 3 with NO Sumatriptan, the first day sucked but things seem to be getting better. After getting the correct o2 regulator and the better mask for it the oxygen is doing the trick so far. My wife and I will be driving up to Connecticut this week for more details on the study they are doing with the Psilocybin, I will let you know how that turns out. Not out of the woods yet but I think I can see it coming. Thank you all for your replies and advice.
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  24. Hi FunTimes, Sounds like you're getting some great advice already. The hardest thing about this board is racing other helpful people to be helpful first. Seriously awesome people here! I'd add a comment or two to Spiny's advice about how to help the family, and how to help the family to help. I got into a relationship shortly after my clusters started, and although the "relationship" only lasted a year, we are now (10 years on) the best of friends. We are housemates, and she has MND (aka ALS), and I'm now the one supporting her, but I digress. She always found it difficult to watch me go through the pain and feeling totally helpless, and my heart broke for her. What we figured out was that after the attack, I desperately needed a glass (or 3) of cold water and a blanket. During the attack, I just needed to be left alone. So she soon learned to just leave me be during an attack, and not to worry. To get on with whatever she was doing. But, she'd always have water and blanket ready for me for when the attack finished. I know it feels like your abandoning the person in pain to walk out of the room and close the door, but it honestly helps them relax a bit and not worry about what the person is seeing or feeling. Sometimes, leaving the person to be alone is the best treatment. I have never really figured out who has it worse. The sufferer, or the person that watches them suffer. But know this, talking with people that understand helps. Your family is more than welcome to come on here and join in with the conversations, or start their own. And also know there are ways to make things better, many ways. Doctors don't always know the ways, and we don't always know them all. But you'll struggle to get bad advice here. At my worst, I was having up to 5 attacks a day, every 2-3 days for a more than a year. But I found the answers here, and I barely have any attacks now. Hang in there. MG
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  25. I much prefer ketamine for anesthesia. It sometimes will even stop a cycle and is shown to HELP headaches and treat them.... Including CH. There's paperwork on it. Infusions are done on it. So your anesthesiologist might consider trying it instead! https://www.ncbi.nlm.nih.gov/pubmed/27067225 It's used as an anesthesia, sometimes mixed with propofol, and other things, so that might help? Just an idea!
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  26. First I would like to thank you for signing up for a trial! Some who have tried to do one are already aged out of the parameters being set. Others just cannot do it. Those who do are thought of as Hero's by most of us. Me included! Family: It is really hard on them. There isn't a lot that they can do to help except give you space, but I do have a couple of ideas. Some CHer's like a cool wash cloth during or after a hit. If you grab some caffeine on your way to the O2 to slam down, which is a really good idea BTW, perhaps someone can grab it and bring it to you. Even being able to do the smallest job to help you will please them. Let them know that you really appreciate their desire to help, but perhaps that you would like some help after the hit is over. Glass of water, washcloth, etc. Maybe let the kids know that you would love it if they could continue with whatever they were already doing while you are killing the pain? And likely you can let your wife know that kids noises do not add to your pain so she does not worry about keeping them quiet. But you need a place to be alone while you kill the hit. Maybe that will give you a start. I think that most of us try to hide our pain from our families. We don't want them to know. Later, we find out that they would have been a lot better off if we had explained it to them. If you can employ their help at some point they will be happier and so will you. Side note: I have a cat who is my O2 buddy. He always follows me to the O2 unless the dog gets in his way. He lies on the floor, not wanting pets or attention, just about a foot away to keep me company. It is nice to have him there to pet when I am doing my post hit breathing and no longer in pain. It is great that you are getting your O2 set up properly. The CH mask is the best!!! Just make sure that you have a good seal to keep out ambient air. Or use the breathing tube instead of the mask. Many find that the best way. I can't tolerate the pressure on my face, so I only use the tube. You may find that you need a 'barb' to make the connection of the tubing to the tank. It has a screw on one end to screw into the regulator and a stepped up post on the other is the barb that you push the tubing onto. Just do not use any oil or grease on any connection! That may require a trip to Lowes or an auto parts store. Just make sure that the threads are the correct number and pitch. I would take the regulator with me to get the part. Or the guy you ordered the mask from may still carry them. He supplied mine years ago. I suggest that you read the O2 file in the Clusterbuster Files setcion of the board. Proper use is paramount! Have you been able to read up on aids like caffeine? Taken at the very beginning of a hit they can reduce your pain and abort time. Many use Energy shots, Energy drinks, or coffee (hot or cold as you desire). They also can work to kill shadows too. I don't know that Motrin helps, but the Trex injections do. You are limited to two in 24 hours though. Pills are too slow for CHers and are best given to Migrainers. The nasal spray is in the middle. Unfortunately they can increase the number of hits and also extend a cycle too. In addition, insurance will normally cover only 9- 12 injections per month.So, that kind of leaves you hanging for many of the hits. Injections can be split into three doses though and still be effective. So that does help. I would strongly suggest that you read up on the D3 Regimen in the Clusterbuster Files board. It is just vitamins and works as an anti-inflammatory. Very easy to do and just requires a trip to Walmart or the drug store. It can reduce the severity of your hits and slow the ramp up time down. Both are good things. Some have gone PF on that alone!! What does of Verapamil are you taking? Three times per day sounds like the short acting variety which is what you want. CHers can need very high doses - up to 900mg or a bit more. You will need to make sure that your Blood Pressure is in a safe range as Verap is a blood Pressure reducing med. All to often the dose prescribed is too low to help. Keep reading and ask questions.
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  27. Ugh. Sorry to hear this about your CH'er Anita. I'm aware of rare instances where a pred burst has knocked a cycle out, but all too often following some days of relief from a burst, the CH comes back with a vengeance, something I've personally experienced and seen many others also report. Hoping you both can escape the war zone ASAP and find some peace.
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  28. I can't tell you how blessed I feel finding this site. Been dealing with these for the last 36 years. I did have a long break for about 5 years but since they have returned every cycle seems to be stronger and longer. I was beginning to loose hope and was fearful that I wouldn't be able to go on much longer. This site has given me some hope that I might e able to tame this beast and just having others to talk to that understand helps. So again thank you to all those who reply to my comments as well as to those who have written in any thread. Reading all your stories help give me strength to continue fighting.
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  29. I just know, the device at usd 500 will be good for 300 aplications or so. After this limit one must buy a new unit at guess how much? yes again 500! I just hope I got it right... (if not, sorry )
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  30. Anyone going to the conference in September room sharing and need another person? I can look elsewhere but would like to know fairly soon. Schaan@gmail.com
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  31. We'd probably urge you to give oxygen another try. For many/most people, past O2 delivery systems have been inadequate (flow too low, mask wrong). 90-plus percent of people for whom O2 didn't work in the past find that with higher flow rates, better mask, and good breathing strategies it will work for them.
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  32. A few 'home' aids: Sleep in a recliner with your head above your heart. Stuff pillows around to get comfy. Helps with night time hits. Stick your feet or yourself in water as hot as you can take. Then heat it up some more when you adjust to the heat. Put something cool on your head/neck. You are opening the blood vessels in your lower body and constricting those in your head. Put an ice cube on the soft palate area on the same side as your CH and hold it there for a bit. No ice? Some will massage the gums up there to get relief. Deep breathing with forceful exhale. Get rid of as much CO2 as possible. Inhale as much air as possible. Like a breathing test, Do a crunch at the end of your exhale. Not perfect, but it can actually help. Especially when combined with caffeine. Breath really cold air. From the freezer or the AC in your car. Stick your nose up to the vent and inhale. Ginger: As candy or raw root. It is hot!!! Take at the first indication of a hit. Try the Melatonin. Up to say 25mgs. Take before bed. In cycle your levels can be too low. I will try to think of some more in a bit. Don't worry about the reading. If you can't, you can't. The day will come when you can catch up on a lot of it. Verapamil: It often takes a very high dose to be effective. From 360 (low) to about 900mgs/day. If you are taking say 240, you might not get any relief. Just monitor your blood pressure as you up the dose. It will drop it. Your doc can prescribe a taper pack of Prednisone. Long term, this med is dangerous to your joints, but a quick taper can be a huge help. Fingers crossed that the seeds get you on the road to PF status!!!
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  33. Beer is a big trigger for many of us as well Taq. In cycle, most will forego the alcohol once they make the connection. Caffeine in any form can be a big help. OTC meds generally do not help. The D3 Regimen can be a huge help!!! Just vitamins and easy. Reduce the frequency and intensity of your hits and can kick in pretty darn quick for many. Pollen high in your area? And barometric drops trigger many CHer's. Heat can be a trigger as well as the alcohol. So, stay cool!! You definitely need to see a Neuro about this. They know more than most PCP's. There are meds than can break a cycle for you. ATB!
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  34. I've never known of anyone to use liquid oxygen. I do know that a lot of people use oxygen gas for glass blowing, and I think that would be the same as welding oxygen. Obviously, you want oxygen of a high purity level for inhaling. If you have a regulator, what you want is a non-rebreather mask. They are very inexpensive. There is a better mask, made for people with CH, but frankly if you can get a non-rebreather mask right away -- if you're a member at amazon prime, for example -- I would try that. This one looks fine to me: https://www.amazon.com/Medsource-No-Model-Non-Rebreather-Oxygen/dp/B004Z8V47G/ref=sr_1_1_a_it?ie=UTF8&qid=1499034891&sr=8-1&keywords=non-rebreather+mask I love Twisted-Melon's posts . . . and I think his advice here about dosage is good. But not everyone, including very dedicated busters, has had the success he has had. In my view, you should definitely start the D3 regimen, and look into a pharma preventive. Verapamil doesn't seem to interfere with busting, although it was believed at one time that it did.
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  35. Jimmy, I believe Twisted-M makes a valid point, in that those of us who've spent years on end observing, discussing and experimenting with CH treatments have seen certain ones have proven to be most effective and work for an impressive percentage of headbangers, and the magic, AKA "psilocybin busting", T-M speaks of is known to be a powerful preventive, the most effective preventive for plenty of us. I'll personally vouch for it's effectiveness, as could thousands of others at this point I believe. With you right on the verge of a cycle coming to an end (I'm hoping!), I'm not sure whether you could get set up with it before the CH is gone, but I think it's something to keep high on the radar in general, while also keeping in mind the contra-indications regarding family history of schizophrenia, etc. Now RC (Rivea Corymbosa) seeds, a psychoactively milder busting substance, are legal to quickly purchase online and to possess, but not ingest, and some have had success with them.
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  36. Welcome Rose! Pred is a wonder drug with some bad side effects. Long term usage is not a really good thing. I totally understand your taking it if it works, but I wonder why your doctor has not given you life saving O2 or a course of Verapamil. It is the most common effective drug prescribed. Cher's usually can tolerate pretty high doses. Pred is mostly used as a 'bridging' medication to take till the Verapamil kicks in. Like about one or two weeks of Pred and then it is dropped. Good to read that you know how to split your injections!!! I am not sure why you are having aches and pains, but Pred can destroy your hips by ruining the joint. This has caused many to need hip replacement surgery!!! If you have taken a lot over the years perhaps this is part of the problem? I can also destroy your shoulders. Are you being treated by a Neuro? He should know better. And he should give you O2 to kill any hits!!! It is the safest treatment and a primary go to for us. A PCP likely would not be up on the best treatments for CH. And when you find something that works, that is what you want and trust. Years ago they did not know about the severe long term damage it can cause. So, if you have been using it for that long, you might want to look in that direction. How long do your cycles last? ATB! spiny
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  38. Sumatriptan should not be refused, because it's a medication. You're supposed to carry ALL medications on your carry-on, from what I recall from the TSA... So it doesn't matter what it is. You keep it with you. I kept my epi-pens on me, and they're liquid injections in a tube that you jab in to your leg... though they had to separate those and scan them separately. (They were kind of like "WTF??") It's been a few years since I flew though... I always drank an energy drink beforehand!
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  39. Hey Jimmy! That knot on your neck is actually very common. We often refer to it as the 'Cluster Knot'. I have had a really great masseuse work on mine to no avail. Was not going away. Neck pain became a common precursor to a hit for me. I finally started sleeping on the edge of my pillow to prevent aggravating it. When that cycle was over, it vanished as well. But, I still start out my night on the edge of the pillow. Old remedies die hard!!! MSG and alcohol are both very well known triggers. Falling barometric pressure sucks too. Paint fumes and perfume affect some CHer's too. You will find your triggers as you go, trust me. I have had about three sips of a beer send me into bad places right quick! Like look at the bottle and think " Not possible!' Ohhhh yes it is. Like Jeebs, mine were 20 minute guys when they started many years ago. They have settled into a 2.25 hour rhythm for the last several years, so I guess they plan to stay in that range if untreated. Caffeine is a major go to treatment for most of us. As an Energy Drink or Shot or even just coffee. Taken at the very beginning of a hit any will really help mitigate the attack. I finally got so sick of all of them, I bought caffeine capsules to keep with me. I can just open and take the powder with a chaser of water. For a while, I carried just the powder in a small container at all times. Then it dawned on me that the Peace Officers might question a white powder in my purse or pocket! Ergo, the caps.
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  40. Jimmy, I had great success with 60 mg Cymbalta and verapamil 360mg. You should try Cymbalta and see if it helps you. I have suffered with CHs for 23 years. All the best.
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  41. Jimmy Martinez -- It could be that a complete lifestyle change of the sort described in the thing you quote might help with CH. But I would be very cautious about accepting that person's opinion, for two main reasons. First, and most important, it doesn't really sound like s/he has CH. Read the symptoms. Aside from the stabbing pain and red eye, there's no CH there. Second, if CH is caused by muscle tightness, it's odd (unexplainable, really) that it affects people in the way it does: at particular times of day; particular times of year, etc. I suppose it's possible that the onset of CH might cause the kind of muscle issues described here, but it's a huge stretch to consider that the "cause." There are other things, too, but that's enough for me to be very doubtful.
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  42. Neurologists have extensive knowledge of these structures. I find it hard to believe that you made such an ignorant statement. I have a friend who came to your clinic several years ago for treatment. She did not have a little numbness. She had to take all food thru a straw for months following your procedure. You did not or could not correct it. I am not at all sure that you respond to failed treatments or acknowledge the misery some of your patients have had following their visit to your clinic. None of which qualify you to treat this condition. But all of which study the Trigeminal Nerve to some extent. Bandaids are not a 'cure' for disease. They just prevent pain by covering the area and protecting it for a short term. You are handing out expensive 'bandaids' and sometimes put them in the wrong location to boot. I would like to see a paper with about 5 years of follow-up on your patients. That would eliminate some of your 'many' successes. And more sanitary working conditions that do not leave patients with infections are definitely needed at your clinic. That is unconscionable. For any Physician. As a side note, I had an attack while awaiting surgery. The Physician had the pre-surgery injection given early and my attack completely vanished. I did not walk out and say that hernia surgery cured my CH. I said that the shot killed a hit. If this method is so successful and your concern for our pain so high, why have you not trained other doctors in your procedure? Perhaps they are not beating a path to your door. For good reason?
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  43. Hi JimG, Sounds like 17 years in, your CH had a pretty established pattern of behavior. The weird thing is, it turns out it's common to be hit with a pattern shift you never would have expected, even after umpteen years of predictability. One of the most common shifts is the lengthening cycles BTW, so It's probably not worth worrying about chronic for another few months at least. Lotsa headbangers are convinced the usage of triptans can cause cycles to lengthen. I've been episodic for going on 37 years, so I had 12 years or so of CH joy before triptans hit the market in the US, and what I found was my cycles kept lengthening and lengthening before I ever tried a triptan. I had been on some heavy cocktails of other prescriptions though. Here's hoping you'll be 12-ish weeks and done this time, with a sudden cessation, or at least you'll see it tapering off soon, which I figure is a likely scenario. I'll officially place a bet on that right now.
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  44. Arch Arch', just some thoughts, which are not really disputing your main points. There is a clinical trial of the effects of psilo on CH taking place now, at Yale Medical School (thanks to ClusterBusters). https://clinicaltrials.gov/ct2/show/NCT02981173 There might be some errors in what I'm about to "report" about BOL after the initial trials, but it is basically accurate. Around 2010, a US company, Entheogen, patented BOL for CH and purchased the temporary rights to it (it's owned by a university, Harvard I think, if I have the facts right) for a specified period of time (5 years?). Then Entheogen tried to raise the many millions of dollars it would need to do real clinical trials of BOL and bring it to market. I think their main strategy for trying to do that was to partner with a established pharma companies. (The first trial of BOL -- also sponsored by ClusterBusters -- was very important, but it was far from being a true clinical trial of the type required to license a drug.) We were often told that Entheogen was on the verge of raising the money, but it never happened, and then its license on BOL expired. The cost of clinical trials is staggering in itself, and add to that the possibility that they might not be approved because of the LSD content of BOL. So, technically, it's true that the pharma companies didn't see how they could ultimately profit enough from BOL to pursue it. I guess it's important to remember the extent to which CH is "under the radar" in the medical world, because I suspect part of the issue would have been, even if BOL got accepted by the FDA, you'd then have to get doctors to correctly diagnose CH in the first place and then know to prescribe the BOL. When you think of how few doctors even seem to know to prescribe oxygen, that seems like it could be a big issue requiring a very costly campaign to educate the doctors about a condition they very rarely see (plus, you would have, like it or not, the problem of doctors not wanting to prescribe something with LSD in it). I feel like all the combined factors led pharma companies away from wanting to develop a treatment for CH. I have a long-time friend, my golf buddy of 20 years, who developed a miraculous drug to combat depression. It works when it is first administered, has no side effects, and treats even the worst depression. It has been in clinical trials for more than six years now, at a cost of hundreds of millions of dollars. And that is even after the FDA gave the drug "fast track" status because the early clinical trials were so impressive. My friend's company was bought by a very big pharma company, Allergan, for about 850 million dollars, and Allergan is now trying to bring the drug to market. Expected to be available in 2021! (The drug is called rapastinel. You can look it up. Here's one recent quote about it from a news story: >>Saunders described Rapastinel, which is under development for the rapid onset action for the treatment of depression, as one of his "personal favorites." The company expects Rapastinel to launch in 2021 with $1 billion to $2 billion in peak sales.<< ) So it's a darn tough road to get a drug to market. (Final thought about rapastinel: It works on the same receptors that ketamine works on, but without ketamine side effects. I am vaguely hoping that since ketamine treats CH, maybe rapstinel will, too.)
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  45. Hi Anita! I see Chf has you lined out on LSA busts so I'll address vitamin M. Although a few folks are able to source and purchase shrooms, the vast majority of us have had to take up mycology and learn how to grow our own. It's a fairly easy learning curve and not too terribly expensive to get set up but it does take a minimum of between 35 and 42 days to realise the "fruit of your labor". Just watch the youtube video series entitled " Let's grow mushrooms "......they'll demo everything you need to know......you out can source all needed supplies from Wally world for less than $50 with the exception of the brown rice flour, coarse grade vermiculite and a spore syringe. Whole foods or any health food store for the brf at approximately $5 for a 2# bag.....coarse grade vermiculite is only available in large 3 cu ft bags at commercial landscape supply stores in my area and costs around $35......Spore syringes are available from Spore Works and run around $20.....so between $100 & $125 for a batch of "pain free livin"!! Dallas Denny
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  46. You get RC seeds legally, and possess them legally, by ordering them from a vendor such as www.tranceplants.net or www.iamshaman.com Has he made any progress toward re-trying O2 or starting the D3 regimen? And have you considered the Chicago conference? I feel like that might be the most valuable thing he could do.
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  47. 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!
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  48. 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
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  49. 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
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  50. Hello Everyone, As some of you may know from our conference last year, Clusterbusters has been in close dialogue with Eli Lilly and Company regarding the following release. Among our priorities, has been to provide them with what we felt was important input from the patient community. We are very pleased to be involved in this and will be providing additional information to our membership as it becomes available. Eli Lilly and Company has informed Clusterbusters that the company plans to start a research program for episodic and chronic cluster headache. Lilly is excited to start this program and work with Clusterbusters to actively help enroll patients. The company will provide more information, including the locations of participating study sites, to Clusterbusters and on the web at www.clinicaltrials.gov (expected in late March). Lilly expects the program to begin actively enrolling in late April. At this time, please do not make any changes to your current medical treatment or otherwise to try to qualify for this study. HereÂ’s some additional information about Lilly from the companyÂ’s website: Lilly is a global healthcare leader that unites caring with discovery to make life better for people around the world. We were founded more than a century ago by a man committed to creating high-quality medicines that meet real needs, and today we remain true to that mission in all our work. Across the globe, Lilly employees work to discover and bring life-changing medicines to those who need them, improve the understanding and management of disease, and give back to communities through philanthropy and volunteerism. To learn more about Lilly, please visit us at www.lilly.com and http://newsroom.lilly.com/social-channels Bob
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