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Hi, well I don't have the same clusters as you do, but I do have chronic migraine and narcolepsy with cataplexy. The cataplexy is new, scary. But we do have some things in common lol, I once had a migraine last 3 month's. I would have ate my own hand to make the pain stop. My neurologist said in order to avoid the migraine or in your case headache is obey the rules. Eat regularly, most of the time its set off by low blood sugar, avoid harsh light like florescents avoid using the computer or your phone for long periods of time. Avoid harsh chemicals, cleaners and perfumes, anything that may aggravate your headache. Unfortunately this is something you would have to do regularly. Also avoid caffeine, alcohol and anything else that my irritate your conditions. And for natural remedies it helps to use rosemary and lavender as aroma therapy. I use two drops of each in a roller with liquid coconut oil and rub it on my temples, or you could put a drop of each on a cotten ball and just smell it. It helps. I hope this helps you.

Regarding the dosages. I started vitamin d loading at 40,000 IU (with coconut oil for adsorption) last Saturday. Magnesium 800mg a day started on monday. I figure the regimine calls for essentially a 600,000 IU loading dose program on the d3 so that means 15 days at that dosage then dropping down to the 10k IU a day. Vitamin K 100 mcg a day. Verapamil 240 mg ER (again, I know...hopefully the neuro will fix that for me.) Just finished the 100 total mg the doctor gave me of prednisone. I am hoping for oxygen. Even injections. I dont know how effective a nasal spray can be if one of the primary symptoms of CH is congestion. Either way I am trying to stay off the triptans for the moment. I have read through the "busting" articles. I have a lot of experience "busting" before I had CH. I grew my own for a long time. Hoping to regain access soon. Until then, keeping energy drinks and ice packs around and crushed ice to induce brain freezes as needed.

Hey Lynn, I'd bump the vitamin D3 dose to 50,000 IU/day for another week then drop back to an initial maintenance dose of 10,000 IU/day. Make sure you're taking the Omega-3 fish oil and all the vitamin D3 cofactors: 400 mg/day magnesium, 10 mg/day zinc, 1 to 3 mg/day boron and 100 mcg vitamin K2. Magnesium is most important as the enzymatic processes that metabolize vitamin D3 to its genetically active metabolite consume magnesium at a high rate. As far as when to start oxygen therapy, any indication of an approaching CH is time to start O2. Make sure you're drinking 2.5 liters of water a day. That may help the sneezing problem... The nausea is likely due to Substance P (SP), a potent vasodilator and pain stimulant associated with the pain phase of CH. Take care and please keep us posted. V/R, Batch

I am taking 20,00 vitamin D3, 1000 magnesium, vitamin A, 200 mg calcium, 150 Boron. I didn't start the fish oil yet I've been to 3 different Neurologist and final got diagnosed with cluster headaches. Some of my symptoms are cluster and some are not. I get nauseous, within 30 minutes to an hour I sneeze, then the attack. Maybe 2 to 3 hours later the nausea starts again and then the sneeze. This happens all day long. As soon as the nausea hits I know I'm going to sneeze and them the headache. When the headache hits it is severe and then it lets up for 15 minutes, and then it is severe again. I take Percocet for pain and that's the only thing that helps. We are working on getting oxygen therapy, but it's a slow process. I've tried all kinds of meds from different neurologists and nothing worked. I'm really curious if anyone has the nausea, sneeze and cluster thing. The other thing is that don't sound like cluster is the headache is on both sides on the temples. Going to try the vitamin d regimen and waiting on the oxygen.

I am taking 20,00 vitamin D3, 1000 magnesium, vitamin A, 200 mg calcium, 150 Boron. I didn't start the fish oil yet

Melissa, A CHer with active CH nursing a 7 month old baby... BINGO!!! You really need to be taking 10,000 IU.day vitamin D3 plus Omega-3 fish oil and all the vitamin D3 cofactors. If not, your baby needs a minimum of 400 IU/day supplemental vitamin D3. Yes... I can hear the wheels turning... Who is Batch and what are is qualifications for saying this? Good question... Although my answer may not be sufficient for you to follow the suggestion as I'm a 73 year old retired US Navy fighter pilot with a degree in Chemistry, 24 years as a CHer (chronic since 2005) and full time student of vitamin D3 since October of 2010. That's when I discovered that 10,000 IU/day vitamin D3 plus Omega-3 fish oil and all the vitamin D3 cofactors prevented my chronic CH... I've been CH pain free ever since. This regimen is so important for good health and among other benefits, it builds a T-Rex immune system, that I have my entire family taking it and none of them have CH. Of particular interest to you are my daughter and niece. Both have been taking this regimen for years. My daughter gave birth to her second child in July. This baby and his sister, now 3 years, were both bathed in maternal vitamin D3 at a dose of 10,000 IU/day since conception. Both pregnancies and deliveries were flawless. Moreover their neuromotor, physical and learning development while breastfeeding at this maternal vitamin D3 dose are nothing short of phenomenal. My niece took this same regimen through her pregnancy and is still taking it like my daughter while breastfeeding. Orrin, 5 months and Fred, a.k.a., Winefred, 3 years... Yes, I'm a doting old grandfather... but I've never seen more healthy babies... and Fred speaks English and Hochdeutch... I credit their excellent health and rapid development to their mother taking 10,000 IU/day through pregnancy and while breastfeeding... Fred also takes vitamin D3 at a dose of 50 IU per pound of body weight a day... She's a 40 pounder so that works out to a vitamin D3 dose of 2000 IU/day... and not the 600 IU/day recommended by bureaucrats at the National Academy of Medicine, formerly called the Institute of Medicine (IOM). Now to the experts with the sheepskins in the appropriate fields and years of professional experience with vitamin D3 studies who suggest 10,000 IU/day during pregnancy and while breastfeeding... Bruce W. Hollis, PhD, Professor of Pediatrics, Biochemistry and Molecular Biology, and Director of Pediatric Nutritional Science at The Medical University of South Carolina, Charleston, SC. The Institute of Medicine has set the “upper limit” of recommended intake at 4000 IU. Is it safe for an adult to take 6400 IU? "The IOM setting a limit of 4,000 IU per day was subjective and not based on any trials. The Endocrine Society guidelines state that 10,000 IU per day is safe. In my own experience with our trial and several other trials in which I have been involved (involving tens of thousands of patients), not a SINGLE adverse event has been observed due to vitamin D intake. I personally take 6,000 IU per day and have for years, and my daughter just had a child and is taking 10,000 IU per day while lactating (going on a year now). Totally safe." Hmmm... How about that... A highly qualified PhD, Professor of Pediatrics, Biochemistry and Molecular Biology and Director of Pediatric Nutritional Science at The Medical University of South Carolina, Charleston, SC recommends a maternal vitamin D3 dose of 10,000 IU/day... and that's what his daughter has been taking while breastfeeding... "Totally Safe." See the following link for more details: https://kellymom.com/nutrition/vitamins/vitamin-d-and-breastfeeding/ This was an interesting study where one group of 74 breastfeeding mothers took the "Old School" recommended prenatal vitamins and minerals with 400 IU/day vitamin D3 during pregnancy and while breast feeding... After 7 months of breastfeeding their mean serum 25(OH)D was only 79 nmol/L (36.6 ng/mL). 25(OH)D lab tests of their babies indicated 78% of them were vitamin D3 deficient until provided with 400 mg/day supplemental vitamin D3. The other group of 78 breastfeeding mothers took the same prenatal vitamins and minerals with 400 IU/day vitamin D3 PLUS another 6,000 IU/day vitamin D3. After 7 months of breastfeeding their mean serum 25(OH)D concentration was 151.2 nmol/L (60.5 ng/mL) and more importantly, their babies had a mean serum 25(OH)D concentration of 106.9 nmol/L (42.8 ng/mL) WITHOUT supplemental vitamin D3. Grassrootshealth recommends a maternal vitamin D3 intake during breastfeeding of 6400 IU/day... as a minimum... to ensure breast milk contains ≥ 400 IU/liter 25(OH)D. See the following link for more details. https://grassrootshealth.net/blog/vitamin-d-for-breastfeeding-mother/ Grassrootshealth.net also has a wonderful 25(OH)D home blood spot test kit for $70, no Rx needed and you'll get the results back in less than two weeks. I've used their DIY 25(OH)D test kits for years. See the following link for details. https://grassrootshealth.net/project/daction/ So there you have it... You can continue suffering from CH... or you can download the anti-inflammatory regimen, take a copy to your PCP, discuss it, then ask for the 25(OH)D lab test. When the results of that lab test come back indicating you're vitamin D3 deficient, start this regimen and follow it carefully. I'd go one step further and take your baby to the pediatrician and ask for the same 25(OH)D lab test. If you do this, your CH will become a thing of the past and your baby will be getting more than sufficient vitamin D3 while breastfeeding. Over the last seven years, at least 4 ladies with CH started this regimen and continued it through pregnancy and while breast feeding... Results... No standard CH medications with all the side effects, no CH and 4 very healthy babies. Take care and please keep us posted. V/R, Batch

G'day my friends. I had my 5 th hit of 1.5 grams of MM powder in tablets yesterday, taking them 5 days apart and I'm still getting CH. Is there anywhere in Australia that I can buy CBD oil? Hope someone can help me. Cheers Douglas

There are 4 RCTs registered in cinicaltrials.gov using mAbs (monoclonal antibodies - 3 for Fremanezumab and one for Galcanezumab) as the intervention for CH and more are likely to follow. Three of the mAbs tested with migraine had an appetite for calcitonin gene-related peptide (CGRP) and a fourth that plugs the CGRP receptor. IMHO... the use of mAbs is still focused on the treatment of symptoms (neurogenic inflammation and the pain caused by CGRP) and not on one of the underlying causes. If you follow the basic antibody antigen mechanism of action where an antibody attaches to an antigen (in this case CGRP), marking it for destruction by killer cells and larger white blood cells, the cow (CGRP in this case) is already out of the barn... To my way of thinking, this means that monoclonal antibodies that attack CGRP or block its receptors will never be fully effective as they're playing a catch-up game from the get go... Using an objective statistical measure of efficacy called the Number Needed to Treat (NNT) to prevent one migraineur from having a sever (not complete cessation) migraine headache attack, the mAb Erenumab has an NNT of 6. That means you need to treat 6 episodic migraineurs to prevent one episodic migraineur from having a sever attack. In other words... Erenumab was ineffective for 5 out of 6 episodic migraineurs (83%) treated. In reality, any NNT of 10 or less is considered "good." See the following link for more details: http://journals.sagepub.com/doi/abs/10.1177/0333102417732504?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed In comparison, Torpiramate and Propranolo each had NNTs of 5 in preventing one episodic migraineur from having a severe attack. Erenumab was equally effective for chronic migraineurs with an NNT of 6. In comparison, BOTOX had an NNT of 9 and two RCTs for Torpiramate had NNTs of 13 and 4. We won't know the efficacy of mAbs in prevneting CH until some time in 2018 or longer. FDA approval following phase 3 studies will still be needed so two years to market as a CH prophylactic is an optimistic guess at this point. Moreover, as these are man-made, genetically engineered foreign antibodies with no physiological means of production from within the human genome, they will need to be replaced periodically (like monthly) in order to maintain a therapeutic serum concentration... The cost of these mAbs is still unknown at this point... However, I strongly suspect it will be in the same price range per month as Humira (Adalimumab)... $100 to $185 out of pocket copay ($5 if AbbVie covers the injection) to $6.600 without assistance. For reference, vitamin D3 plus Omega-3 fish oil and the vitamin D3 cofactors has a mechanism of action that downregulates/suppresses the expression of CGRP at the genetic layer... In other words, vitamin D3 bars the barn doors to prevent the cows (CGRP) from escaping the genetic layer. Using the above statistical method of expressing efficacy, the anti-inflammatory regimen has a raw NNT of 3 or 2 in preventing one CHer from having a CH... Numbers count... Take care, V/R, Batch .

bye bye snake oil bullshit. I'm so happy seeing this unit failing badly and people realizing it fully.

That's beautifully written and of course very tough to read. I'm sure everyone here can relate. You're not asking, but if I had to give you advice for what to do on a very limited budget I would suggest starting the vitamin D3 regimen right away. I suppose the initial cost might not be low, and the monthly cost might be close to that gym membership, but I'd expect you to get pretty good results from it, as most people with CH have (including people with chronic CH). I'll list the ingredients at the end. You can read more about it here: https://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 I'd also suggest considering busting with rivea corymbosa (RC) seeds. You can buy the supply you need for under $20. Read about busting in the numbered files in the ClusterBuster Files section. RC seeds are covered in the file on LSA. Supplements in the D3 regimen: > Vitamin D3 (Cholecalciferol) 10,000 IU/day (Adjust as needed to keep serum 25(OH)D near 80 ng/mL) > Omega 3 Fish Oil 1000 to 2400 mg/day (Minimum of EPA 360 mg/day, DHA 240 mg/day) > Calcium * 220 to 500 mg/day > Magnesium 400 - 800 mg/day (magnesium chloride, glycinate or oxide) > Vitamin K2 (MK-4 & MK-7) MK-4 1000 mcg/day, MK-7 200 mcg/day (MK-7 preferred due to half-life) > Vitamin A (Retinol) * 900 mcg (3,000 IU) for men, 700 mcg (2,333 IU) for women (Maximum Dose) > Vitamin B 50 ** 3 month course, after that, the 7 B vitamins in the Mature Multi will be sufficient > Zinc * 10 mg/day > Boron * 1 mg/day minimum, 3 mg/day optimum * Included in the Kirkland brand Mature Multi in sufficient quantity ** Vitamin B 50 is a single pill formulated with the seven B vitamins plus 400 mcg of folic acid. Dr. Stasha Gominak, MD, a neurologist at ETMC, Tyler, TX, suggests a 3-month course of vitamin B 50 to address any deficiencies among the seven B vitamins. The anti-inflammatory regimen can be used by itself or as an adjuvant therapy along with the Standards of Care recommended treatments for CH

I tried Gammacore for a month for $498.00 (yes, it's $498.00 per month and it shuts off by itself on the last day and insurance will not pay). I found the device to be totally useless. I consider it as over-priced snake oil. I am chronic, but I don't think that would matter. I find that sumatriptan injections and oxygen are the only abortives that work for me. Nothing works as a prophylactic for me and I've tried nearly every med that you can think of. Sorry if I burst your bubble.

Batch's whole document is here: https://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708. At the bottom of page 2 is the table showing the ingredients, which I can't/don't know how to insert here, but is a lot easier to read. Of course, you should read the whole document. I'm going to quote some core things from pages 2, 5, and 6, but I'm not saying I'm not leaving out anything important! These quoted sections do not include the "loading" process to quickly ramp up D levels, which is described beginning at the bottom of page 7. Page 2: Anti-Inflammatory Regimen. The suggested nutrients and their doses used in the Anti-Inflammatory Regimen for adults are shown in Table 1 and Figure 2 below. Children with CH should receive a vitamin D3 dose of 50 IU per pound of body weight. The other nutrients and supplements should be taken at RDA for the appropriate age group. > Vitamin D3 (Cholecalciferol) 10,000 IU/day (Adjust as needed to keep serum 25(OH)D near 80 ng/mL) > Omega 3 Fish Oil 1000 to 2400 mg/day (Minimum of EPA 360 mg/day, DHA 240 mg/day) > Calcium * 220 to 500 mg/day > Magnesium 400 - 800 mg/day (magnesium chloride, glycinate or oxide) > Vitamin K2 (MK-4 & MK-7) MK-4 1000 mcg/day, MK-7 200 mcg/day (MK-7 preferred due to half-life) > Vitamin A (Retinol) * 900 mcg (3,000 IU) for men, 700 mcg (2,333 IU) for women (Maximum Dose) > Vitamin B 50 ** 3 month course, after that, the 7 B vitamins in the Mature Multi will be sufficient > Zinc * 10 mg/day > Boron * 1 mg/day minimum, 3 mg/day optimum * Included in the Kirkland brand Mature Multi in sufficient quantity ** Vitamin B 50 is a single pill formulated with the seven B vitamins plus 400 mcg of folic acid. Dr. Stasha Gominak, MD, a neurologist at ETMC, Tyler, TX, suggests a 3-month course of vitamin B 50 to address any deficiencies among the seven B vitamins. The anti-inflammatory regimen can be used by itself or as an adjuvant therapy along with the Standards of Care recommended treatments for CH Page 5. Order the following lab tests to establish a baseline before starting the anti-inflammatory regimen: o 25-Hydroxyvitamin D3 [25(OH)D3]. CPT Code 82306. Quest Diagnostics Test Name: 92888- QuestAssureD 25-OH Vitamin D (Total), LC/MS/MS. 95% of CHers with active bouts of cluster headache will have a 25(OH)D serum concentration ≤ 47 ng/mL, (117.2 nmol/L). Any 25(OH)D serum concentration < 50 ng/mL, (125 nmol/L) is grounds for starting this regimen. o Vitamin B12 (Cobalamin). CPT Code 82607 o Parathyroid Hormone (PTH) Intact and Total Calcium. CPT codes 83970, 82310. Establish baseline. o CBC (w/ Differential and Platelets). CPT Code 85025. (Abs) Eos >350 indicates possible allergy o Eosinophil Count, Nasal. CPT Code 89190 o Lab results for Erythrocyte Sedimentation Rate (ESR) CPT Code 85652, C-Reactive Protein (CRP) CPT Code 86140 and plasma viscosity may prove useful if inflammation is suspected Page 6. 50 mg/day (25 mg twice a day or 50 mg at bed time) Benadryl plus additional vitamin D3 up to 50,000 IU/day may be required to maintain a CH pain free response during periods of high pollen count resulting in an allergic reaction. Caution patient that Benadryl (Diphenhydramine hydrochloride) can and will cause drowsiness and not to drive when taking it if at all possible. Some CHers have reported that 12.5 mg Children’s Allergy Relief Liquid Benadryl taken twice a day is also very effective with less drowsiness.

YES!!! I have had this problem WAYYYY too many times to count...I got so upset about their bullshit "paperwork first" method of care that I leased my tank ($120/yr and I KEEP IT ALL THE TIME, even out of cycle...it costs me $120/yr to keep it in my basement (where it's been unattended for almost 4 years) Lo-and behold! They hit again and I have 02...totally worth the $500 to me...the beast can kiss my butt. I do that to avoid the nonsense you are going thru...however, my O2 supplier has sold the business and now the shit-show starts again with these people and their useless (to me) knowledge base and rafts of scripts and paperwork. It's nice that I still have some O2 in the monster M tank so I have time to deal with these clueless people who don't have a shmick of an idea what I (We) go through. I have no patience for the medical mafia anymore. They're as much use to me as a hat for a headless horseman. I've discovered in my 25 yrs that I must NEVER wait for onset and once I get something in place, NEVER let it lapse. I feel your pain, on several levels unfortunately. It's what we have to do as CH'ers...we can't count on the people that only do the work for the money, they are no use to us. Always be aware of those ones. Never take your car to be fixed by someone that doesn't even know how to change the oil...if you get my drift...lol. PF wishes for you friends! Nanu nanu! <3 Mike from ORK out!

I feel like reports regarding CBD oil are all over the map -- different types, different uses (aborting vs. preventing), different levels of success. If you just type CBD into the Search bar near the top right of the page, and be sure it's set for "All Content," you'll see more than 100 posts, which you can browse through. Enough reported successes, I would say, that it's worth trying.

My husband brought some home today for me to try... has anyone used this before and if so had any success with it?

Here is my story: I had a fairly painful headache on the day of Aug 18th (I rarely if ever get headaches). I then had about 3 more headaches over the next couple weeks during the day. Then a couple nights ago, I was woken two hours into my sleep with the most painful headache I've ever had--the epicenter around and behind my right eye. I was sitting on the floor, floored by this intense pain and confusion that went with it. I took two advils and the intense pain dissipated after around 20 minutes. I went to the ER and got a CT scan to rule out any bleeding. I came back home, went to sleep and was again woken with a very sharp, throbbing pain around my right eye though not quite as debilitating. since then I've had tons of water, d and magnesium and melatonin, and a small rc dose, and twice daily cannabis oil. I've had 3 nights pain free with a slight headache in the morning since. I have had some dizziness. A specialist told me it sounds like CH. Does the 3 nights pf post major attack mean it isn't? Or is this normal for ch?

Hey Tim, You need the rest of the anti-inflammatory regimen supplements that go along with vitamin D3. The following photo illustrates what I've been taking for more than 4 years and they work just fine for me in preventing my CH. The vitamin D3 cofactors: magnesium, zinc, boron, vitamin A (retinol), vitamin B complex and vitamin K2 complex are all very important in metabolizing vitamin D3 to gain the optimum CH preventative capacity. Omega-3 fish oil is another important anti-inflammatory that helps prevent CH. If you take the above supplements by brand you'll be getting what is shown in the following table/ Try to see your PCP for the 25(OH)D lab test. It will help let us know if you've elevated your serum 25(OH)D up to a therapeutic level around 80 ng/mL for most CHers. That usually requires 10,000 IU/day vitamin D3. Accordingly, at some point, you may need to taper your vitamin D3 back down a bit. Take care and please keep us posted. V/R, Batch

Greeneyes, 2,000 IU/day of vitamin D3 is not enough! If your doctor said your vitamin D3 a.k.a., serum 25(OH)D was low, it was likely less than 30 ng/mL... Ask to be sure. If it is that low, you need to start a vitamin D3 loading schedule of 50,000 IU/day for 12 days, then drop back to an initial vitamin D3 maintenance dose of 10,000 IU/day. Try to pick up some 10,000 IU vitamin D3 liquid softgel capsules and take five (5) of them a day for 12 days along with 400 mg/day magnesium, 1000 to 2000 mg Omega-3 fish oil and the Kirkland brand Mature Multi... You can order the Super K once you've got the CH beast under control. Here's what I take. The 12-day/2-Week accelerated vitamin D3 loading schedule will elevate your serum 25(OH)D up to 80 ng/mL per the following chart. I suspect you'll be mostly CH pain free by the end of the first week on this loading schedule... Read the treatment protocol and give a copy to your neurologist. Instead of the 5 hour energy drinks, try sucking Ice Cold Water from a straw or suck on a fudge sickle. Chilling the roof of your mouth with ice water or ice cream is just as effective as a 5 hour energy drink and a lot better for you. Take care and please keep us posted. V/R, Batch

Kimbrit, Welcome to Clusterbusters. We know what you've been going through and the good news is it doesn't need to be that way... There are many "old hands" experienced in controlling CH here to help you. Your concerns about taking Carbamazepine are valid...Why neurologists prescribe antiepileptics for cluster headache is baffling... It is not among the Standards of Care recommended interventions (prophylaxis) for cluster headache (CH). The odds are very high you are vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your episodic CH. I have an online survey that's been running since December of 2011 of CHers taking the anti-inflammatory regimen to prevent their CH. This regimen contains 10,000 IU/day vitamin D3, Omega-3 Fish Oil and the vitamin D3 conutrients: magnesium, zinc, boron, vitamin A (retinol), vitamin B complex and vitamin K2 complex. The first part of this survey requests CHers to see their PCP or neurologist to get the lab test of their 25(OH)D, the first metabolite of vitamin D3 that's used to measure its status. The normal reference range for 25(OH)D is 30 to 100 ng/mL. As of last March, 2017, 215 CHers have completed and submitted their surveys. The following normal distribution chart illustrates their baseline 25(OH)D serum concentrations. Better than 80% of CHers taking the anti-inflammatory regimen experienced a significant reduction in the frequency of their CH from an average of 3 CH/day down to 3 CH/week in the first 30 days. Better than 50% of CHers taking this regimen experienced a complete and lasting cessation of CH symptoms as long as they remain on this regimen. 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 PCP or neurologist. That way you’ll both singing from the same sheet music when you ask for the 25(OH)D lab test. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Henry Lahore, the brains and brawn behind the VitaminDWiki website posted this link for me on 21 January, 2017. As of 21 July, readers have downloaded 2440 copies of this treatment protocol... You can 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. This is a very safe regimen of vitamins and minerals. There have not been any adverse reactions reported that required medical attention. On the contrary, there's a long list of health benefits from taking this regimen over and above preventing your CH. Take care and please keep us posted. V/R, Batch

Thank you both for your feedback! I currently take 720mg total Verapamil daily and would love to stop with the Motrin but I think it is a mental thing that I just need to overcome. I had my blood pressure tested and was told I can not up the Verapamil at this time. I am a big coffee drinker and at one point cut it out of my daily ritual all together thinking it may decrease the amount of headaches I get in a day, but that did not help at all. I will try the 5 hour energy trick to see if that helps at all. I have given up drinking alcohol all together as that seems to be a trigger for me. I have read about the busting techniques here on this site and am interested in trying them all. I have printed out the D3 regimen to read over and think I can do that when I am in the study. The next study I was getting into is the one on the home page here for the Psilocybin in Connecticut. It is only about a 3 and a half hour drive from my house outside of Philadelphia. I am open to try anything as the clusters are non stop and I don't think anything can make it much worse. I know that I can get a placebo but after a set amount of time they usually bring you back in for the real thing. The only reason I join the studies is to try to find a solution that may one day be something we can all legally do to help with our issue. I would rather not take the triptans as I feel they will cause other issues in the long run. I currently take it in pill form, i have had injections in the past and they do work fast. The injections that I had were a compressed air type that shoot the medication into your leg, I have had about 6 of them that did not work (failed to fire off the medication). The insurance that I have does not pay for anything until I meet a $6,000 deductible so I kind of shy away from getting them because they are about $200 a shot for me. The longest PF streak I have had in the last 4 years has been 5 days. the last 3 months have been hell with up to 5 hits a day. My family is very understanding and they do what they can to help me out. My wife must be a saint, she will stand by with a box of tissues, bags of ice, water bottles and a hand full of pills for me. I just do not know how to repay her. I can only treat her to so many steak dinners! My wife also found something about putting Frankincense oil on the roof of your mouth to about the attack. It does seem to help at times but have not seen that mentioned in anyone's bag of tricks yet. She just puts 2 drops on a small piece of paper towel or a tissue and puts it on my tongue then I hold it to the roof of my mouth for a minute and spit it back out. I do have better supplies coming in to get this oxygen set up the proper way and find it kind of odd that the doctors do not have a setup that fits our needs. I was in the hospital ER one night and I did not even get a aspirin to help me, so fed up with the lack of help I just got up and walked out only to get a bill from them for no help at all. All this crap is going on on top of dealing with every day life.. I just wanted to vent here a little as I know you all deal with the same if not worse. Thank you for responding and I will be sure to read on and on and on.

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.

Dear Friends, just wanted to update you on things with me. Believe me, I am thinking about all of you every day. Especially those who are struggling. I wanted to see if anyone has had any any success or somehow broken through to become consistently pain-free? I'm not ready to hit the shrooms but I won't rule it out. Here's what i have done just recently: * Doctor just put me on Verapamil. 80mg tablets 3 times a day. I haven't started yet but will any day now (insurance reasons). * Trying to get dissolvable Maxalt but fighting with insurance company to get more than 9 in a 30 day period. * Been gluten free now for about 4 days,. Also no sugar or dairy. Many are telling me that this could be a game changer. My doctor thinks it won't make a difference. * Trying to conserve the medication I have. was using Frovatriptan as a preventative but only worked 50% of the time. When i get an attack, I have had some Zomeg a friend of mind gave me. * Lately I have been getting more daytime attacks which is odd because I typically get the attacks 2 hours after I fall asleep. * Oxygen working a little better now that I have a higher flow regulator (max 15 LPM). If I catch an attack early I can knock it out, if caught late, the oxygen does;t work. * Have tried migraine excedrin a few times and it actually has worked. * I have also stopped drinking caffeine. * A friend of mine who gets migraines is telling me about Hemp Oil (CBD) which she says helps. * I've reached out to "Batch" to get more info on this vitamin D3 regimen which I am not taking correctly at this time according to CHfather. I will still try this regimen as I hear it has great success. * I've tried taking Benadryl at night and Melatonin/Magnesium but can't say it's helped much or that I have noticed any difference. I might be doing too many things and confusing myself but I feel like I have to try multiple things to get some impactful results. If anyone has had impactful success with anything, please share it with me. I have heard that "busting" works but I'm nervous about that. Thank you and here's to your health and success! Jimmy-

I grow my own. In fact, I'm suppose to be researching different ways to grow them today, and start a new batch. Guess I best get to that. I bought a capsule making kit and a 1000's capsules from Amazon. You can get them in 3 different capsule sizes, and I thin I picked the medium sized one. I also have a set of electronic scales that goes to the 100th of a gram (0.00), so I can get a pretty accurate measurement of their weight. I like mine around 0.20 grams, but my housemate prefers them between 0.15 and 0.17 grams. It is surprisingly easy to do. Grow the mushrooms (the hard part). I then place them in a large wire sieve lined with paper towels and place over a heater on a low heat. A day or so later, and they are cracker dry. And they need to be CRACKER dry. Then, grind them up in a mortar and pestle. Load up the capsule machine with empty capsules, pour in, tap down, pour in, tap down until you're happy then close up the capsules. Takes a few tries to get the hang of getting the quantity right, but is easy. I used to put the mushrooms in peppermint tea, but could not stand the taste. The worst bit, I used to love peppermint tea, but now I associate the smell with mushrooms, and want to vomit when I smell it. Capsules are SO much easier. One capsule a day for micro-dosing, 6-10 capsules for a full bust. MG

Hey John, Sorry you're having problems with the anti-inflammatory regimen. Roughly 1% of CHers experience an increase in the frequency of their CH after starting this regimen. Why this happens is still unknown, but I suspect it involves two possible mechanisms of action. The first is an obvious reaction to one or more of the supplements. The second is an imbalance in the enzymes and/or nutrients needed to hydroxylate vitamin D3 (adds an [OH-] radical at the 25th position on the vitamin D3 molecule) to form 25-Hydroxy Vitamin D3, a.k.a., 25(OH)D3 and a second enzyme that hydroxylates 25(OH)D3 at the first position to form 1,25(OH)2D3 the genetically active vitamin D3 metabolite. If these enzymes are not being produced at the cellular level where vitamin D3 does its magic through genetic expression, we don't get a CH preventative effect. Even worse, a third enzyme may be generating 24,25(OH)2D3 which is genetically inactive and this consumes available 25(OH)D so it can't be hydroxylated to 1,25(OH)2D3. The nutrients needed to support these enzymatic processes are magnesium, zinc and boron. What has worked for the few CHers with this problem who wanted to continue with this regimen is to use the process of elimination to fined the offending supplement. I'd suggest stop taking the entire regimen for at least a day then restart at one supplement at a time on a 24 hour interval to find the culprit responsible for the spike in CH frequency. 95% of CHers have a low vitamin D3 status, i.e., a 25(OH)D serum concentration < 46 ng/mL and 80% of CHers have a 25(OH)D serum concentration < 30 ng/mL so this would suggest adding vitamin D3 back first. However, CHers also tend to be deficient in magnesium so this would suggest adding magnesium back first. What is important here is to drink at least 2 liters of water a day and to maintain an accurate headache log. The supplements you're presently taking may contain irritants/triggers. Accordingly, I suggest the supplements shown in the following photo as they carry the USP logo indicating they've been tested by an independent lab for purity and strength. I've taken the supplements shown below for over 5 years. I'd suggest starting with the magnesium followed 24 hours later by the Matrure Multi as this will cover the nutrients needed to support the enzymatic processes. I would follow 24 hours later with 5,000 IU of vitamin D3 followed 24 hours later with 10,000 IU of vitamin D3. If you get that far without a spike in CH frequency, you're almost home... Moreover, you've got the basics needed to prevent your CH. Next, I'd add the Omega-3 Fish Oil then the Super K. Again, be sure to drink at least 2 liters of water a day... Obviously, if you have a reaction (spike in CH frequency) to any one of the supplements, don't take it and move on to the next supplement. Take care and please keep me posted with your problems an/or questions. That's the only way I can help. V/R, Batch

Hey John, Oxygen therapy is just an abortive... not a preventative... That said you should get at least an hour or more relief after an abort with oxygen therapy... Try hyperventilating with room air for 30 seconds breathing at forced vital capacity tidal volumes, i.e., exhaling with an abdominal crunch at the end of each exhale cycle until your exhaled breath makes a wheezing sound then inhale rapidly and fully then repeat ten times (~30 seconds), then inhale a lungful of 100% oxygen and hold it for 30 seconds. Repeat this entire sequence until the CH pain is completely gone. If you want a lasting pain free existence, you need to start the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus Omega-3 fish Oil and the vitamin D3 cofactors. 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 PCP or neurologist. That way you're both singing from the same sheet music when you ask for the suggested lab test of your serum 25(OH)D, total calcium and PTH (Parethyroid Hormone). http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 You can also scan the following QR code with your smart phone and it will download a pdf copy of the treatment protocol to your phone as a ready reference. If you don't have the QR Code Reader App, it's free and It takes less than 10 seconds to download and install. Take care and please keep us posted. V/R, Batch