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Shadows are low levels of Ch or Ch like pain. They put you on edge usually because you feel like a hit is coming, sort of ' Hey, I'm still here!' Many times the hit does not materialize, just the nagging 'shadow' pain.

A text message I sent to a good friend of mine, someone I could trust: "I need someone to talk to about my CH situation. Someone not a doctor, someone not a family member, just a friend. Unfortunately, I'm struggling mentally with this and just need to talk to someone that knows me at the friend level. Don't worry, I'm not going to break down and dole out a sob story. I don't want sympathy or pity, just a conversation." Just sending that message felt like a ton of bricks being lifted from my shoulders. Then the conversation also went really well, another ton lifted from my shoulders. From there, my buddy knew the facts, he knew what rumors could be dispelled and had accurate information to give out. Over the past week, amongst our mutual friends, he has been casually bringing it up, talking about how serious it is, sort of like a personal grass roots movement. My friends get it, they understand now, thanks to him. Best of luck to you.

https://scholar.google.fr/scholar_url?url=http%3A%2F%2Fdownloads.hindawi.com%2Fjournals%2Fcrinm%2Faip%2F3901619.pdf&hl=fr&sa=X&scisig=AAGBfm1vtUTuZ_cQpBApdV3xiS688Nwr2A&nossl=1&oi=scholaralrt This link was posted on Facebook Saturday, a medical article about one patient using B1 for cch. I'm 11 years cch, o2, d3, lsa, I get some daily shadows and then 5 - 7 hit. I started taking B1 200 mg Saturday evening, Sunday took 300 mg with a very light pm hit, Monday took 400 mg through out the day, no shadows or 5 pm hit, Tuesday went back to 300 mg still no shadows or evening hit. I'm not sure of anything, but it's been a rough last 12 months, if B1 help one man... I will try it and see.

What a GREAT idea dm!! I always "hid" the ch as much as I could after years of blow offs and eye rolls. That's quite a friend ya got there! Best Jon

Denver is a great place too hold this years conference. I not only suffer with CH, I also suffer with Asthma.. I camped out for a week in Denver a few years back and had no problem until I attempted to go up to Pikes Peak with some of the other campers... That was a no, no... So they brought me back a pin (smile)... My headaches were no different in Denver, than they are here in Illinois... Ladyluv - aka Mamahlf

something new for me is a deep sleep, also changing my dose to one dose of B1 400mg am and see someone on facebook emailed Dr. Constantini and asked these questions: Q1- Was your healed patient taking any other vitamine supplement1 (Omega3, D1, Magnesium and adult multi-vitamin, etc.)? A1: The patient didn't take any supplement Q2- Are you aware of cases where the B1 treatment isn’t working? A2: We only have three cases in treatment and they are responding. We also have 10 cases of chronic migraine and episodic migraine and all responded wonderfully to our therapy, with the complete remission of the symptoms. Q3- Do you have another future experiment planned with B1 and CH? A3: We will continue treating the cases which we visit in the next future Q4: For episodics like me, do you think I should start in between sycles or just wait for a cycle to start? A4: For episodics like yours, I'd suggest you to take the therapy when you have the first attack, with 500 mg in an only administration in the morning. Q5 Since vitamine B6 is linked to the Dopaminergic Systems functions, was vitamine B6 examined by your research? Was vitamine B12 examined as well? A5 We didn't examine B6 nor B12. Q6: Would you recommand taking 3 doses during the day of B1 or one a day? A6: We recommend to take the total dose all together in the morning at breakfast. Bruce He sent me these as well as all cases where Dr. Constantini treated diseases with huge intakes of B1 to treat MS, Fybromialgia and Parkinson; all so called auto-immune diseases..

So im a tad nervous. I've been diagnosed for a little while and i haven't yet actually interacted with anyone else who deals with this before and i thought here would obviously be the best place to get other sufferers perspectives. I'm 20 years old though ive been dealing with it since i was 18. Before my diagnosis i didn't even know what CH is and..right now im still adjusting to all this. I've had a tendency to have trouble interacting with people who don't have CH and actually have become a bit fearful of telling others about it due to some actually getting angry with me when i describe the pain I've been dealing with..like they're appalled with how much im "blowing it out of proportion." I've had a lot of negative responses from people i try to reach out. Most people try to avoid me so they don't have to hear about it and i'm not trying to make them uncomfortable i just want a little support. I hate that everyone sees me as whiny and overdramatic now. Any way..im sorry for all the off topic rambling about my current state of mind..i kinda was just curious to hear some other people's experiences with having their pain downplayed or how others have responded to what we suffer with here,and just vent here a little bit, and if maybe there's any tips you have on interacting with others that'd really help..im just kinda confused and lost right now

Well he certainly sounds like a great friend to have. Good for you. I've met people who'll outright say its ridiculous when i try to talk about it and make a list of what they've dealt with and others who'll stop and listen to what i have to say. Really even just having an open mind is a great deal of help for any person with any problem. It at least gives them someone to talk about it with

New here. After 30 years of CH I was granted a 4 year reprieve. Thought I was done... but it's back and so doing my old regime of oxygen, sometimes immitrex but more important I went back to prednisone/verapamil (60mg for 7 days then taper) mix as I did successfully 1-3 times a year for 15 years. Because I've been "away" from CH for a while I went back to old protocal without doing research (stupid I know) and yesterday started looking around the internet and found very little on prednisone (including here on clusterbusters) and the little I found was very critical. Are fewer CH sufferers are using prednisone these days? Is there any recent research on pred? How much prednisone likely to cause long term damage? I'm on day 2 of the pred but a little freaked out. Any suggestions would be really appreciated.

Extremely small sample, but, I am episodic and have been in one of the most vicious cycles I have experienced. I haven't had a CH in three years after starting the famous D3 regimen, thanks to Batch, and now I am getting hammered every night. With apologies to all the chronic sufferers for complaining/whining at all about what little pain I suffer in comparison to you folks, I smoked some indica last night and did not have a ch for the first night in two weeks. Tried it again tonight so we will see. It was one great night off tho. I haven't smoked weed in half a year. Good to read that someone is getting relief thru maryjane.

I am not surprised that pain killers did not work. They normally don't work for CH! Melatonin does help many, but the dose needs to be higher, say 20 to 25 mg. The standard dose of 3mg will not do anything much. But higher doses can help. Try 9mg for starters if you are concerned about being groggy in the morning. The D3 really is pretty great for us. It is best to get your D3 levels checked by a blood test first if possible. If you can't do that you can start it without. Just be sure to take all the co-factors. The other ingredients. Yes, people will make comments like 'Take an aspirin' or some other over the counter pill for mild pain is a very common statement. It is pretty upsetting to us, but they don't know. They do not understand that even potent pain killers will not work. Alternative treatments are discussed on the closed boards 'Share your busting stories' and 'Theory and Implementation.' Only members have access to those. Drinking some caffeine - an Energy Drink, coffee, etc - can help at the very beginning of an attack. O2 does not help unless used properly with the right mask. I am so sorry that it is not available to you. Try putting your feet in very hot water, as hot as you can stand, for relief. Keep the water hot! I will sit in it and just keep adding water to the tub as needed. Breathing cold air helps many. If it is cold, go outside and exhale fully, then inhale deeply. Repeat. When the pain drops then breath normally for a few minutes before going back inside. We have members world wide. Where are you located? We may have a member or two from there who could be more helpful with your local situation. And in some places Truffles are legal. They will work too.

Hi Spiny, thank you for replay. I tried all medicines that are usualy used for CH , in 2 different countries I sow the best neurologist and I tried : cortisone medicines,immigrant and other nose spreys, all kind of pain killer for head..... nothing helped , i just had bad side effects (zombi feeling and heart beating ). Magnezium I took a lot in june last year and didn't help. I noticed that melatonine is not working since I have CH. Before CH when I traveled and changed zone time, melatonin made me sleep nice and since I have CH , melatonin doesn't make me sleep at all and when I finally fell a sleep, I woke up after max 5 hours and that is strange because I sleep a lot usualy (when there is not period of CH.) I haven't try Kudzu extract and I will try it. thank you for advice of D3 regiment, I read it and everything exept that I have tried. I don't agree that triger is alcohol or cigarets, ( only summer few drinks and my attacks are allways in february and some year in june too ) , I allsow do sports allmost everyday (exept when attacks starts) . Psilocybin is so hard to find,only ones I find and that stoped attacks for 2 years, but as I said i have problems finding it and to don't mention how doctors or people look on that. they don't understand what CH people are going trought and they judge badly . oxigen bottle with mask- nothing, ( 3 times i did, only once after 15 min stoped , I didn't nothice any improvment ) and country where I live they don't give oxigent bottle for free for CH people and if you buy private is arround 2000 dollars ,so I had to go to other country where is chepear (250 dollars ) and big bottle was enought only for 3 attacks ( 3 days) and as I said only once I notice that attack was shorter then usualy.

Hi Eli! There is no cure, to my knowledge. Some people are granted long remissions, but we don't know why that happens either.By 'long', I mean ten years sometimes. So, there is that. Read thru the Forum and I suggest that you spend some time on the numbered threads in the Clusterbuster Section of the board. It will explain a lot. What have you taken for your CH so far? Besides Imigran. Is that in a pill or injectable form? I strongly suggest that you read some of the info on the D3 Regimen. It is amazing how much a few vitamins can help!!! All are over the counter vitamins in the States. ATB

I’m still having positive results with B1 100 mg three to four times a day, the weather tested me on Friday night, took a fourth B1, surprised that 20 minuets later shadow was gone. I received an email reply from doctor in link above, his quote “We currently have three affected individuals with complete regression of symptoms at doses of 500mg or less.” I’m on D3 and B1, and waiting for the beast to show up, but who knows. I will report back in a week. Hope your days are PF.

Bilal, how much verapamil; what form of sumatriptan (pill, inhaler, injector)? Oxygen is the best way to abort attacks. It is the #1 medically recommended abortive, but many doctors don't prescribe it. You need to push for that. An optimized system stops most attacks for most people in ~10 minutes, give or take a few. Many people believe that sumatriptan makes attacks worse and cluster periods longer. It sucks to have CH, but you are lucky to have had it diagnosed so quickly. The average time to a diagnosis is close to five years, and people undergo a lot of misery during those years. As a long-term preventive, you should seriously consider the vitamin D3 regimen, which is described in the ClusterBuster Files section of this board. There's quite a bit over in those files that you should become familiar with, include "busting," which is described in the numbered files, and also recognizing possible triggers, which you can read about in one of the files. You should probably also read "Bob's Big Guide" over there. This is a good discussion of pharmaceutical strategies: https://americanheadachesociety.org/wp-content/uploads/2016/07/Peter_Goadsby_-_Treatment_of_Cluster_headache.pdf There are some promising clinical trials going on right now of things that might help. Here's a list of possible abortive/preventive strategies from another post: Energy shots (5-Hour Energy) at first sign of attack (they don't keep most people up at night); melatonin at bedtime (start with about 10mg, maybe, and go up or down as appropriate); feet in very hot bathtub to at least slow down an attack; sip ice water through a straw aimed at the roof of your mouth, with the objective of creating "brain freeze" (or try holding something cold, such as frozen juice concentrate, against the roof of your mouth with your tongue) Stay hydrated -- lots and lots of water. You could try Benadryl (25 mg every 4 hours and 50 mg at night -- but not if you are also taking melatonin at night); there's a theory that allergies/histamines make CH attacks worse, and Benadryl will help.

No ch hit yesterday, no shadows, no ch pressure on right side or presents of a ch, an awesome day for me, slept all night the last two nights, I'm having positive results, yesterday took 100mg x4 through out the day, still researching how B1 is acting on ch, found this last night " B1 helps the production of cellular energy and has a calming effect on histamine related headaches ". I had a dexalog shot in okc and it had a B complex with it, not sure of dosing.

I contacted the company that makes the gammaCore device. I am satisfied that the signal is an electrical one, and not just a sound. spinebob I am happy to continue this conversation as needed, you may have more information. I appreciate your skepticism, but in this case it does not appear to be true. I am not an engineer! Regards, Brian E McGeeney, MD, MPH, MBA BostonHeadacheDoc

SMH.....

Thank you for this, Charles. You don't say when your reckless youth of recreational drug use took place, but I guess you know the founding story of this site, the guy who realized that he hadn't had CH attacks while he was regularly using something -- psilo or acid, I don't recall -- and figured out that whatever he was taking was an effective treatment for CH. My only suggestion is that you stay on the D3 regimen continually instead of restarting it in November, because you want to get your D level up to a stable high level, which is easier to do over time. You can get your D level checked (standard blood panel) to make sure it doesn't get higher than you want it to be, but it's highly unlikely that with 10,000IU/day that is going to happen.

Greetings... Personally I've never had altitude trigger an attack but I know that some have. Where I live is about 1000 ft....where I snow ski is an hour and 45 minute drive and the elevation is roughly that of Denver so I'm not worried. If flying is a trigger for you Denver could still be ok as cabin pressure is roughly equivalent to 8000 ft. Denver is roughly a 5400 average.

You guys got my brain going so I'm gonna continue rambling for a bit here Michigan first approved their Medical Marijuana laws in 2008 and I arrived there shortly after. It was all brand new and weird. None of Michigan's neighboring states have MMJ and the idea was VERY new to a lot of people. Since 2008 there have been tons of documentaries filling the television, along with numerous article in newspapers and magazines that have helped educate the masses. I was a recreational user as a younger guy ... but I had no idea that there was an entire behind the scenes world to cannabis. For some people (the stereotypical older religious person) smoking is taboo. Some patients can't smoke due to pre-existing medical conditions like emphysema. Another reason people don't want to smoke is the smell. Yes, even though it is legal in medical states, it is a multi-billion dollar industry and not everyone wants to advertise to the neighbors that they are sitting on some high quality cannabis ...... the world is full of bad people waiting to prey on the sick and the poor. Enter medibles, tinctures, salves, and oils. As a caregiver (that's what they call growers in medical states) one becomes MUCH more than a "hippie weed grower". We have patients that depend on us for their daily health and well-bieng. We become doctors/pharmacists/friends. I dealt with cancer, death, wasting syndrome, epilepsy, fibromyalgia, and other horrible things on a daily basis. More than I could have ever expected. One thing about medibles that gives it a GREAT advantage over smoking the raw plant is the ability to measure out exact doses. Or at least MUCH MORE close to exact. Every medical state has one I'm sure, and in Michigan it's a company called Cannalytics. They can take raw marijuana and test it for chemical compounds. You normally will see the peperwork/test results next to the pretty containers in your local dispensary ....... but not all caregivers spend the time/money to have their meds tested if they are growing for patients and not for the "commercial market" of dispensaries. Just because a seedbank website says a certain strain has 17% THC and 4% CBD doesn't make it so. Not even close. There are sooooo many factors involved from seed to harvest to obtain those results. Light, grow method, nutrients, pest infestations ..... all of these things drastically affect chemical compounds in the finished product. The flowers from the top of the plant may have a different chemical makeup than flowers from the middle or the bottom of the plant ..... the possibilities of skewed numbers are literally endless. Like any other advertising in the world ..... they are giving you the best possible results from the best possible conditions. When we concentrate raw flowers into "hash", we can compress an entire plant into one small handful of material, have that material tested, and be 100% certain of the same chemical makeup throughout the entire batch of hash. That hash can then be used to make something simple like butter. I won't bore you with the math, but obviously if you add 3 grams of hash to 1 pound of butter you can figure out exactly how much medication is in a tablespoon of butter. Medibles can be "constructed" to be 100% effective on the body and have zero effect on the mind (or vice versa). They travel easy ... they don't smell ... they are safer on the lungs .... and the ingestion possibilities are longer than train smoke. Cannabis infused olive oil for pasta or side salads is my favorite......Canna-butter on popcorn is good too