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Hey Bilal, What was the frequency of your CH in hits/day or hits/week before starting the anti-inflammatory regimen? If you haven't already done so, please take the online survey of CHers taking this regimen so we can capture your response data. To start this survey, click on the following link: http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 Take care and thanks again for the feedback. V/R, Batch

Hey Ammo, Good Onya... If there's no joy after 3 to 4 days at the new vitamin D3 loading dose, see your local chemist/pharmacist for a first-generation antihistamine and take as directed for a week to 10 days. A sub-clinical (no obvious or outward symptoms) allergic reaction will release histamine that can cause all kind of problems for CHers. Take care, V/R, Batch

Hey Ammo, Stick with the vitamin D3 regimen and if you haven't already done so, shift the loading schedule over to 50,000 IU/day for another 10 days. This works a bit faster than the 2-Week loading schedule and a lot faster than the 4-Week loading schedule in elevating your 25(OH)D serum concentration to 80 ng/mL and a favorable or CH pain free response. Be sure to drink 2.5 liters of water a day. Regarding the tooth, 6 to 10 grams (6,000 to 10,000 mg) per day of vitamin C is not too much for any oral infection/tooth cavity. I keep a small bowl of vitamin C tablets on the kitchen counter. I load it with 10 each night at bed time then down a 1000 mg tablet every hour of so throughout the day with a big gulp of water. As an episodic CHer you're shooting for a 25(OH)D serum concentration of 80 ng/mL with an initial maintenance dose of 10,000 IU/day vitamin D3 once you've completed the accelerated loading schedule. If the CH beast is still jumping ugly after 3 to 4 days on the accelerated vitamin D3 loading schedule, pick up a first-generation antihistamine like Benadryl (Diphenhydramine HCL) and take 25 mg every 4 hours throughout the day. Just be careful and not drive ans this much Diphenhydrmaine will make you drowsy. If you need to drive and be sharp as a tack during the day, wait until you're home for the day then take 50 mg of Diphenhydramine and another 50 mg at bed time... Take care and please keep us posted. V/R, Batch

Hey Dylan, Great post and positive message. The topic of suicidal thoughts is of particular interest. As a CHer since 1994 and chronic since 2005, thoughts of "ending it" were present at times after turning chronic, particularly after starting another new preventative that didn't work. It wasn't until years later after discovering the wonders of vitamin D3 in preventing my CH that I started connecting the dots between suicides among CHers and the drugs they were prescribed to prevent their CH. The big dot to connect came from far left field, It centers on the School Shooters. Most are young kids and all were either taking prescribed psychotropic drugs or had recently stopped taking them. Even the Las Vegas shooter had been taking a psychotropic medication. These drugs are widely prescribed to treat psychotic, depression, bipolar, seizures, anxiety, panic and obsessive compulsive disorders. Many are also prescribed "off label" as preventatives for cluster headache. They include drugs with trade names like paxil, prozac, celexa, luvox, xanex, topamax, neurontin, depakote, zoloft, wellbutrin, propranolo and the list goes on... All these drugs have a few things in common. Their side effects are frequently worse than or exacerbate the very symptoms or conditions they're used to treat. In the majority of cases, these psychotropic drugs have mind altering, psychotic effects that leave the patient in a disturbed and confused state. I've known or knew of three CHers who ended their lives in the last 12 years. All were taking psychoactive drugs to prevent their CH. Granted this is anecdotal evidence at best. That said, I'm convinced our disorder has been given a bum wrap in being called the suicide headache when the real culprit was likely the psychoactive drugs CHers were taking. Any old hands out there willing to come up on this topic? Take care, V/R, Batch

Good question. You'll need a prescription for medical oxygen as an abortive for cluster headache here in the US. If you already have an Rx for home oxygen from a physician in Italy and an oxygen provider there, see if they have an oxygen travel program or affiliation with an oxygen provider in the US and in the states you might move to. This will solve the immediate problem of obtaining home oxygen on arrival. One of these programs is called OxyTravel at the following link. https://www.oxygenworldwide.com/help/wiki/521-oxytravel.html Work with your primary care physician (PCP) to get an account set up with OxyTravel before you leave Italy. Once you arrive you'll need to find a PCP. Make sure he or she is willing to write an Rx for home oxygen at the flow rates we need for cluster headache, i.e., 15 to 25 liters/minute. Take care, V/R, Batch

I wouldn't hold my breath... Neurostimulation, i.e., GON, DB, SPG and VN Stimulation all suffer from the same problem. They only work ~ 40 % to 70 % of the time while the CHer is awake and able to actuate the remote controller before the pain gets too high. No joy while sleeping... In short, they only address the symptoms and not the contributing factors...

Hey Tom, I'd really suggest you see one of the Coimbra Protocol trained physicians at the following link: https://www.google.com/maps/d/viewer?mid=1fATZJUEhOsYYJdBY41h48FBkLaQ&hl=en_US&ll=14.974129117547387%2C-42.780705499999954&z=2 In the mean time, starting the anti-inflammatory regimen is a great choice no matter the medical condition. You can download a copy at the following VitaminDWiki link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep us posted. V/R, Batch

Hey Bilal, Thanks for the feedback. It's always great to hear another CHer has responded to the anti-inflammatory regimen. Be sure to see your PCP after 30 days on this regimen to obtain lab tests of your serum 25(OH)D, calcium and PTH. As long as you are CH pain free, your serum calcium remains within its normal reference range and your PTH is in the lower third of its normal reference range, your vitamin D3 maintenance dose is good to go even if your serum 25(OH)D is over 100 ng/mL. Any time after that, if you've time, please take the online survey of CHers taking this regimen to prevent their CH. To start this survey, click on the following link: http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 We need survey data like this to help convince neurologists and headache specialists that the anti-inflammatory regimen is a safe and effective alternative to the typical standards of care recommended medications for CH. Take care and please keep us posted. V/R, Batch

Hey DM and AJS, I've looked over the study protocol at clinicaltrials.gov for the Will Erwin Headache Research Center - Cluster Headache Study (WEC1). This study covers the waterfront for Cluster Headache types and other TACs, or Trigeminal Neuralgias including but not limited to SUNCT, SUNA and hemicrania continua (HC) with the goal of characterizing the disease in detail. It has an excellent data collection protocol for genetic and molecular biomarkers and imagery as well as objective clinical assessment measures including HIT-6 and GAD-7 scores. As this is essentially an investigation/survey of patients with these headache conditions with no specific interventions listed and no exclusion criteria for interventions being taken by participants at the time, this may be a fantastic opportunity to have a prestigious headache research center collect specific lab and clinical data on the effects of vitamin D3 and cofactors in preventing cluster headache and other TACs. If you are interested, please let me know. The sequence is to go through the initial screening exam and lab tests at the WEHRC to establish a baseline and to discuss your desire to start the anti-inflammatory regimen. I will send you a copy of the latest anti-inflammatory regimen CH preventative treatment protocol if you decide to go further. Thanks and take care, V/R, Batch

Hey Rich, What you're experiencing is called cutaneous allodynia... pain resulting from the slightest touch to the face or scalp that shouldn't cause pain. It's a common part of the cluster headache syndrome... See your PCP for a lab test of your serum 25(OH)D. The odds are high you're vitamin D3 deficient. Start the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and the odds are equally high it will prevent your CH and the cutaneous allodynia... The link to down load a copy of this treatment protocol follows: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 This is not a joke and I don't sell anything. I've been providing information outreach to migraineurs and CHers on the benefits of this regimen and vitamin D3 since December of 2010. If you've any doubts about starting this regimen, click on the following VitaminDwiki link. It will take you to a page at that site that's all about my work with CHers taking this regimen with vitamin D3 and the cofactors. http://is.gd/clustervitd Take care and please keep us posted. V/R, Batch

Hey Sontye and Bilal, You're vitamin D3 deficient... so it's not what you're doing that's affecting your cluster headache (CH)... It's what you're not doing... i.e., You're not taking enough vitamin D3 and the vitamin D3 and cofactors and that's what is contributing to the frequency, severity and duration of your CH... See your PCP or neurologist for a lab test of your serum 25(OH)D. A dime will get you a dollar if your results don't come back under the following normal distribution curve of lab results reported by 257 CHers who took this lab test before starting the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 plus Omega-3 fish oil and the vitamin D3 cofactors... The odds are better than 80% you'll have a favorable response with a reduction in the frequency of your CH from an average of 3 CH/day down to 3 or 4 CH/week in the first 30 days after starting the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3, Omega-3 fish oil and the vitamin D3 cofactors. Better than 50% of the CHers who start this regimen experience a complete cessation of CH symptoms within the first 30 days after starting this regimen... You can find a copy of this regimen at the following VitaminDWiki web site at the following link. Discuss it with your PCP or neurologist when you ask for the lab test of your serum 25(OH)D. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 The 25(OH)D lab results for CHers experiencing a favorable response to this regimen or a complete cessation of CH symptoms are illustrated in the following normal distribution curve. At 55 cents a day for a very safe, very effective and very healthy alternative to the Rx meds you've been taking to prevent your CH... Why are you waiting? Take care and please keep us posted. V/R, Batch

Hey Coolestnurse, Did you get the lab test of your serum 25(OH)D? How much vitamin D3 are you taking? Take care, V/R, Batch

Hey CoolestNurse, Welcome to Clusterbusters... Having a medical professional in our midst is always a treat... even more so when the medical professional suffers from the same headaches as the rest of us... What I would suggest is you need to see your PCP about lab tests of your serum 25(OH)D. 8 years providing information outreach on the benefits of vitamin D3, Omega-3 fish oil and the vitamin D3 cofactors has produced a wealth of data... For starters, cluster headache sufferers (CHers) and migraineurs presenting with active bouts of headache are almost always vitamin D3 deficient/insufficient... i.e., a serum 25(OH)D less than 30 ng/mL (75 nmol/l). Moreover, if these headache sufferers take sufficient amounts of vitamin D3, (10,000 IU/day plus all the cofactors, better than 80% of them experience a significant reduction in the frequency of their headaches from an average of 3 CH/day down to an average of 3 CH/week. 54% of them experience a complete cessation of CH symptoms. Migraineurs have a similar response to this regimen except they need a higher maintenance dose of vitamin D3 in a range between 15,000 and 25,000 IU/day. Download a copy of the anti-inflammatory regimen CH and MH preventative treatment protocol at the following link and discuss it with your PCP... http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 This is not a joke and I don't sell anything. I've been providing information outreach to migraineurs and CHers on the benefits of this regimen and vitamin D3 since December of 2010. If you've any doubts about starting this regimen, click on the following VitaminDwiki link. It will take you to a page at that site that's all about my work with CHers taking this regimen with vitamin D3 and the cofactors. http://is.gd/clustervitd If you’re still in doubt about starting this regimen, see your PCP for the 25(OH)D lab test. The normal reference range for 25(OH)D is 30 to 100 ng/mL. It's a very safe bet your results will come back less than 30 ng/mL. As CHers and migraineurs, we need to keep our serum 25(OH)D concentration up between 80 and 120 ng/mL. I also suggest you read the following posts by other CHers who started this regimen. I have hundreds more just like them. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/798/#798 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1393027277/2/#2 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1425/#1425 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1465/#1465 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404/278/#278 Please feel free to ask questions... Most CHers have them when starting this regimen... I'm here to help. Take care and please keep us posted. V/R, Batch

Hey RazorPP, I suspect you're not taking enough vitamin D3. It takes 20,000 to 25,000 IU/day vitamin D3 to keep me pain free. That works out to a serum 25(OH)D concentration of 140 ±50 ng/mL over the last 3 years... My PCP is OK with this as long as my serum calcium remains within its normal reference range... and it has. Take care, V/R, Batch

Hey 50Amp, There's nothing wrong with a serum 25(OH)D at 184.5 ng/mL as long as your serum calcium remains within its normal reference range and your PTH is in the lower third of its normal reference range. My serum 25(OH)D concentration has averaged 140 ±50 ng/mL over the last 3 years and has been as high as 200 ng/mL. My serum calcium has remained within its normal reference range the entire time... The bottom line is I take as much vitamin D3 as I need to stay CH pain free but keep my PCP/GP in the loop with frequent labs for my serum 25(OH)D, calcium and PTH. As long as my serum calcium remains within its normal reference range, I'm good to go at the resulting 25(OH)D serum concentration. If I suspect an allergy is causing CH burn through, I take a week's worth of Benadryl (Diphenhydramine HCL) at 25 mg every 4 hours during the peak pollen periods. Take care and please keep us posted. V/R, Batch

Hey Brandylynn, Denny is spot on... without the results from a lab test of your 25(OH)D, we're shooting in the dark. I suspect your serum 25(OH)D is too low and that a few days loading at 50,000 IU/day vitamin D3 should reduce the frequency of your CH... However.. we still need to know your present serum 25(OH)D concentration in order to determine the duration of the loading dose... See your PCP for this lab test and get back to us. Take care, V/R, Batch.'

Hey Peggy, There's every reason to expect the anti-inflammatory regimen will work just fine to prevent all of the trigeminal autonomic cephalgias (TAC). Be sure to ask your PCP for the 25(OH)D lab test. A Coke & Candy Bar sez you're vitamin D3 deficient. Take care, V/R, Batch

Hey Lynn, Good on you for upping the vitamin D3 dose. I'd stay at 50,000 IU/day for another four days then drop back to 15,000 IU/day and see what happens. Pick up some saline nose spray and irrigate both nostrils with several sprays in each side. This might help reduce the sneezing a bit... Take care and please keep us posted. V/R, Batch

Lynn, Have you increased your vitamin D3 dose to 50,000 IU/day? Take care, V/R, Batch

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

Lynn, Have you downloaded the anti-inflammatory regimen treatment protocol? I'd try stopping the Benadryl for now as it doesn't appear to have an effect on the frequency of your CH. I'd also increase the vitamin D3 loading dose to 50,000 IU/day. You've roughly 8 days remaining on the 12-Day vitamin D3 loading schedule taking 50,000 IU/day for the next 8 days. When the 8 days are up, you can drop the vitamin D3 dose to an initial maintenance dose of 10,000 IU/day. The gut plays a role in vitamin D3 so I'd start a course of probiotic and take as directed on the label until the bottle is empty. Taking vitamin C can also help. I take at least 2 X 1,000 mg tablets of vitamin C a day. You can safely take a 1000 mg tablet of vitamin C every 4 hours throughout the day. Take care and please keep us posted. V/R, Batch

Lynn, I agree with CHfather's suggestion to discontinue the Benadryl. I would also switch to the 12-Day vitamin D3 loading schedule at 50,000 IU/day. You've roughly 9 days remaining given the total amount of vitamin D3 you've already taken. Switching the vitamin D3 loading dose to 50,000 IU/day will build serum 25(OH)D much faster and that should result in a significant decrease in the frequency and severity of your CH. How long is it taking in minutes to abort your CH with oxygen therapy? Are you using the oxygen therapy breathing method I suggested by hyperventilating with room air for 30 seconds then inhaling a lungful of oxygen and holding it for 30 seconds, then repeating this sequence until the CH pain is gone? Take care and please keep us posted. V/R, Batch

Lynn, I'd give Benadryl (Diphenhydramine HCL) a try. A 25 mg tablet every 4 hours during the day for a few days should stop the nausea and possibly even the CH. How much vitamin D3 are you taking? Howz the head? What's the CH frequency? Take care and please keep us posted. V/R, Batch

Lynn, I should have jumped into this discussion when you mentioned neck cramps. Muscle cramps anywhere in the body are a classic indication of a magnesium-calcium imbalance with too little magnesium. The enzymatic process of hydroxylating (metabolizing) vitamin D3 to its genetically active metabolite 1,25(OH)2D3 a.k.a., calcitriol, consumes magnesium rapidly. If we don't take at least 400 mg/day magnesium with vitamin D3, the problem of cramps becomes even more pronounced. I'm guessing your neck cramps are no longer a problem since starting the anti-inflammatory regimen... We have several CHers who also have migraine headaches and they report a confluence of symptoms similar to what you've described. Discuss that possibility with a neurologist or preferably a headache specialist when you see one. Regarding percocet... There have been enough studies done by the God Squad of cluster headache experts who are presently members of the ICHD3 Working group on trigeminal autonomic cephalalgias: doctors Goadsby, May and Rozen, that have proven opioids are ineffective in controlling cluster headache. While opioids may dull the pain, they have no effect on the cluster headache syndrome which continues unabated no matter how much opioid is taken... Moreover, continued frequent use of opioids like percocet in attempts to stop CH pain result in dependency >95% of the time leaving the CHer with two demons to fight... We've a few CHers who have done this and ended up dancing with the devil until they went through detox. The best, most effective and least invasive course of action is to see your PCP for the 25(OH)D lab test and to discuss the anti-inflammatory regimen. Take along a copy of this regimen from the following link. That way you'll both be singing from the same sheet music when the lab results come back. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Data from the online survey of CHers taking this regimen to prevent their CH indicate 82% experience ≥75% reduction in the frequency of their CH from an average of 3 CH/day down to 3 to 4 CH/week and that 64% of CHers starting this regimen experience a complete cessation of CH symptoms. These are year over year averages compiled since this survey was placed on line in December of 2011. Data from this survey from CHers reporting during 2016 indicate the overall favorable response has improved to 93% and the pain free response to 73%. It appears the two factors responsible for this improvement are starting this therapy with the 600,000 IU total vitamin D3 loading dose spread over 12 days at 50,000 IU/day or four weeks at 20,000 IU/day and the use of Benadryl (Diphenhydramine HCL) for a week to 10 days. Obviously, the favorable response comes much faster taking 50,000 IU/day for 12 days... Regarding the use of an oxygen concentrator to abort CH... While the concentration of oxygen produced by these systems is not 100% and the maximum flow rate is too low, an oxygen concentrator can work very effectively in aborting CH if used with the Redneck Oxygen Reservoir Breathing system (filled ahead of time) and a procedure calling for hyperventilation at forced vital capacity tidal volumes for 30 seconds with room air followed by inhaling a lungful of oxygen from the Redneck Oxygen Reservoir Breathing system and holding it for 30 second. 4 to 7 such complete cycles is usually sufficient to abort most CH. The "How To" for the DIY Redneck Oxygen Reservoir Breathing system and the hyperventilation breathing procedure can be found here at Clusterbusters... Use the search window and key in the words Redneck and Oxygen then look for a post by CHfather titled: Batch's hyperventilation + "red neck" bag" Take care and please keep us posted. V/R, Batch

Hey Peggy, Thank you for your service... You're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your headaches. If you can get into the VA ask for lab test of your serum 25-Hydroxy Vitamin D3, a.k.a., 25(OH)D. This is the first metabolite of vitamin D3 that's used to measure its status. Nearly all CHers with active bouts have a 25(OH)D serum concetration ≤ 40 ng/mL with a mean of 23 ng/mL. As CHers we need to keep our serum 25(OH)D up between 80 and 100 ng/mL. That will require a vitamin D3 dose of at least 10,000 IU/day. Pull down a copy of the anti-inflammatory regimen at the following VitaminDWiki link. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep us posted. V/R, Batch