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  1. Hey Bilal, Thank you for the wonderful feedback on your experience with the anti-inflammatory regimen. Knowing you're CH pain free is exactly how this regimen is meant to work. Take care and thanks again. V/R, Batch
  2. xxx

    Skin pain

    Siegfried, A lot has happened in the field of molecular biology in the last 15 years since the two studies you referenced were conducted. For example, sequencing of the human genome was largely complete in 2003 and finally completed with the sequencing of the last chromosome in 2006. Since then there's been an explosion in the area of genetic mapping tools and today you can find several credible sites offering gene atlas like BioGPS that illustrate the distribution and density of specific genes. Where all this applies to cluster and migraine headache takes us to the central dogma of molecular biology... DNA <-> RNA -> Protein... essentially genetic expression. The following graphic illustrates this process. This process of genetic expression takes part in the nuclei in every cell type in the human body, in every chromosome and most genes. Think of the messenger RNA (mRNA) in the graphic above as a sequence of genetic instructions, not unlike computer binary code, or a blue print that ribosomes (protein producing factories) within the cell cytoplasm use to translate or synthesize specific proteins called for in the mRNA blueprint. The four basic high level instructions in genetic expression are replication, differentiation, up- and down-regulation of protein synthesis and apoptosis, programmed cell death. For example if the cell in the graphic above is a neuron within the trigeminal ganglia, the protein expressed above could easily be CGRP or SP in which case they would trigger the neurogenic inflammation and nociception, the pain we know as cluster or migraine headache. Now we can look at a scenario where vitamin D3 helps prevent CH and MH. Although the exact mechanism(s) of action remain unclear, several studies have identified the likely candidates in this scenario. The key candidates involved include molecules of the genetically active vitamin D3 metabolite 1,25(OH)2D3, several molecular forms of retinoic acid, (retinol, retinyl, referred to as reinoids), a vitamin D receptor (VDR) a retinoid-X receptor (RXR) and an RNA sequence. It's interesting to note that the VDR and RXR are also products of genetic expression. The following graphic illustrates where a molecule of 1,25(OH)2D3 and a molecule of retinoic acid combine to form a heterodimer, a two molecule polymer made of dissimilar molecules, that then attracts and attaches to a VDR and RXR. This complex then attaches to the RNA portion of DNA at a Vitamin D Receptor Element (VDRE) to initiate transcription, the process of making an exact copy of the RNA sequence that's now called mRNA. This is where things get fuzzy... The likely scenario here is where this particular process involves a genetic sequence responsible for expressing CGRP and in this case, vitamin D3 down-regulates its expression lowering the cellular concentration of CGRP to the point it is no longer capable of triggering CH. Like I said, things get fuzzy here as a 2010 research study identified 2776 genomic positions occupied by the VDR and 229 genes with significant changes in expression in response to vitamin D3. So there you have a Navy fighter pilot's thinking how vitamin D3 prevents CH... and yes, I have a degree in chemistry circa '67. Take care, V/R, Batch
  3. xxx

    Skin pain

    Hey Siegfried, Thanks for the two links. They make a lot more sense saying that once a migraine headache progresses to the point of cutaneous allodynia, triptans become far less effective as an abortive. This jives with with the side effects of a CGRP cascade where both CH and MH become so severe in frequency, pain and duration, nothing works... Thanks again, V/R, Batch
  4. Hey Big J, Good questions... but bad move if you drop your vitamin D3 dose to 5000 IU/day. I'll explain... The average adult burns through roughly 5,000 IU/day vitamin D3... if its available. Each sustained dose of vitamin D3 results in a time course 25(OH)D response where the 25(OH)D serum concentration reaches a stable equilibrium. The following chart developed by Dr. Robert Heaney, MD, illustrates what I'm talking about. As you can see, a maintenance dose of 5000 IU/day and resulting 25(OH)D serum concentration puts you on the ragged edge of the green zone where CHers have a favorable response to the anti-inflammatory regimen with a significant decrease in the frequency of their CH from an average 3 CH/day down to 3 to 4 CH/Week or they experience a CH pain free response. While you may be enjoying a favorable response at your present vitamin D3 maintenance dose, dropping it to 5000 IU/day will result in your 25(OH)D serum concentration dropping to roughly 60 ng/mL. You might get lucky and remain CH pain free... then again, you might not... Inflammation from any source, infections, allergies, trauma or surgery all result in a drop in 25(OH)D serum concentration from a few percent up to 70% for trauma or surgery. What is even worse is the tipping point or threshold 25(OH)D serum concentration where you experience a favorable response also elevates. Accordingly, if you drop your maintenance dose to 5000 IU/day your serum 25(OH)D will seek a new equilibrium around 60 ng/mL. Now, if you experience a cold, infection, allergic reaction, trauma or surgery, your 25(OH)D serum concentration will drop to say 40 ng/mL or lower and your tipping point/threshold for a CH pain free response elevates to above 60 ng/mL, you just made it possible for the CH beast to open a can of whupass and jump ugly onya... Bottom line... a vitamin D3 maintenance dose of 10,000 IU/day or higher is just fine. It buys you a reserve or comfort margin that keeps you CH pain free as your 25(OH)D serum concentration and CH pain free threshold fluctuate. Regarding your lab tests for serum 25(OH)D, calcium and PTH... be sure to ask for all three. The 25(OH)D serum concentration has nothing to do with with vitamin D3 intoxication/toxicity. Only your calcium serum concentration matters here. As long as your serum calcium concentration remains within its normal reference range, there is no vitamin D3 intoxication/toxicity. I've maintained my 25(OH)D serum concentration throughout 2018 between 136 and 188 ng/mL with an average vitamin D3 maintenance dose between 20,000 to 30,000 IU/day. My serum calcium remained within its normal reference range throughout the year so my PCP had no problem with this. Accordingly if your PCP gets his or her knickers in a wad saying your 25(OH)D is too high... point out the fact that your calcium serum concentration is still within its normal reference range, hence no hypercalcemia, i.e., vitamin D3 intoxication/toxicity. Regarding the verapamil... If you don't think it is doing anything to prevent your CH... stop taking it... Your heart will love you... Regarding the elavil (amitriptyline)... It's a tricyclic antidepressant that has no effect on preventing CH. At best it may help provide symptomatic relief for depression, but the trade off in adverse side effects are an onerous price to pay... Burn them... If amitriptyline gets into the sewage system and flows into your local waterways... It screws up fish big time... Take care, V/R, Batch
  5. Hey Big J, Sorry to be so slow. Still shoveling snow off the driveway that fell last weekend... Great question. It turns out that bacterial and viral infections, allergic reactions, trauma and surgery all result in a drop in serum 25(OH)D concentrations. This drop can be as much as 70% for surgery and trauma. If you're taking enough vitamin D3 to keep your serum 25(OH)D above the tipping point that keeps you CH pain free and experience one of the above conditions, you'll get whacked! Accordingly, the answer to your question is YES. You will need to up or bump your vitamin D3 dose if you experience any of these medical conditions. If I suspect a cold, very rare, maybe 3 or 4 since I started this regimen in October of 2010 or an allergic reaction, (more common like yearly), I take a 50,000 IU loading dose of vitamin D3 for two to three days and up my vitamin D3 maintenance dose to 15,000 IU/day to as much as 30,000 IU/day until the symptoms clear. In the case of allergic reactions, I also take a first-generation antihistamine like Benadryl (Diphenhydramine HCL). Hope this helps. Take care and please keep us posted. V/R, Batch
  6. xxx

    Skin pain

    Hey Siegfried, That's a new one on me... sounds more like the classic chicken or the egg conundrum... which comes first... The most common reason why triptans become ineffective other than overuse, is the flood of histamine released from mast cells during allergic reactions. The histamine triggers neurons within the trigeminal ganglia to express calcitonin gene-related peptide (CGRP) and Substance P (SP). CGRP and SP are the two nuroactive peptides found elevated in serum concentrations during the pain phase of CH and MH. They are responsible for the neurogenic inflammation and pain we know as CH and migraine... It gets worse... CGRP in turn triggers mast cells to release even more histamine which triggers even more CGRP and SP in a circular chain reaction. This results in what's called a CGRP cascade characterized by a spike in CH and MH frequency up to 8 attacks/day/night. When this happens, none of the CH interventions are effective so we're considered to be refractory... The best course of action in this case is to start a week to 10-Day course of a good first-generation antihistamine like Diphenhydramine (Benadryl). Molecules of Diphenhydramine pass through the blood brain barrier to block histamine H1 receptors at the genetic layer. This slows and can stop the circular chain reaction and CGRP cascade.
  7. xxx

    Skin pain

    It's called cutaneous allodynia... The perception of pain when a non-noxious stimulus is applied to normal skin. It's a common symptom of migraine and cluster headache syndromes.
  8. xxx

    Tinnitus

    The best supplements for controlling tinnitus include: Ginkgo Biloba, B Vitamins: Niacin, Thiamin and Vitamin B12; Zinc, Magnesium and vitamin D3. There are several studies that found these supplements effective in controlling tinnitus. You get everything but the Ginkgo Biloba in the anti-inflammatory regimen CH preventative treatment protocol at the following link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 I also add Quercetin. Take care, V/R, Batch
  9. Complain to Congress you say. It is bought off. A reported army of 1440 lobbyists for the pharmaceutical industry is in Washington DC. The pharmaceutical industry spend $280 million on lobbying Congress in 2018. That amounts to a half-million dollars per member of Congress. BOUGHT OFF: Why You Don’t Hear About Low-Cost Natural Remedies In The News
  10. Dental work is a double edged sword for CHers. While some may find the anesthesia a trigger, the infection associated with dental cavities and gingivitis causes the release of neuroinflammatory agents that trigger CH in most CHers even if taking 10,000 IU/day vitamin D3. After 8 years collecting feedback data from CHers taking the anti-inflammatory regimen and lots of research, it's best to maintain good dental health with checkups and cleaning at least every 6 months.
  11. If you want a great oxygen regulator with a flow rate that will blow your shirt-tail out, give the FlotecO2 order desk a call and tell them you're a cluster headache sufferer and want one of their 0 to 60 liter/minute CGA-540 "InGage" oxygen regulators. I've had one since 2005... They're fantastic. Order it with a barb fitting for the Cluster O2 kit and single DISS fitting for an oxygen demand valve. Cost ~ $190 625 West New York Street Indianapolis IN 46214-4911 www.floteco2.com Phone: 317-273-6960 Fax: 317-273-6979 Order Desk: 800-401-1723 e-mail: flotec@floteco2.com Order Desk Fax: 1-800-515-9254 Of course I haven't used it since starting the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and co-nutrients October of 2010... I do use it for oxygen therapy demos. Take care, V/R, Batch
  12. I've had a welder's M-size O2 cylinder in my garage since June of 2010... That was before I developed and started taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus Omega-3 fish oil and the rest of the co-nutrients 10 October 2010. I burned through the first and second M-size cylinders through September of 2010. I picked up the 3rd refill in early October 2010. It still has 1200 psi... and I actually do a little brazing (welding) and cutting at times... An oxygen concentrator will work just fine if you use it fill a Redneck Oxygen Reservoir bag ahead of time... i.e., between hits... Use the search tool at the top of the page and key in "Redneck" You'll find the "How To" DIY and breathing procedures. Save the canula and oxygen tubing as you'll need the tubing to fill the Redneck Reservoir bag from the concentrator. Take care, V/R, Batch
  13. Hey Nikki, As I'm the CHer who developed the anti-inflammatory regimen and provided outreach on its benefits in preventing CH for the last 8 years to hundreds of CHers, it's best to take this regimen with the largest meal of the day. This helps avoid GI tract disturbances and aids in absorption. Many CHers have found starting this regimen with the 12-Day accelerated vitamin D3 loading schedule taking 50,000 IU/day for 12 days. This is the fastest way to elevate your serum 25(OH)D up into the therapeutic range around 80 ng/mL where most CHers respond with a significant reduction in the frequency of their CH or a complete cessation of CH. After completing the 12-Day loading schedule, drop back to an initial vitamin D3 maintenance dose of 10,000 IU/day. 30 days after starting this regimen it's best to see your PCP/GP for lab tests of your serum 25(OH)D, calcium and PTH. Take care and please keep us posted. V/R, Batch
  14. xxx

    Vitamine D3

    Christopher, Good on you for spreading the word... and for taking the survey. Thanks also for the email update. Take care, V/R, Batch
  15. Katrina, That's not a cocktail... It's polypharmacy! No wonder you're having problems. Check your message InBox. Take care, V/R, Batch
  16. Hey Katrina, Welcome aboard. I suspect you are vitamin D3 and magnesium deficient. These deficiencies can easily contribute to SUNCT/SUNA and the rest of the TACs. The Standards of Care recommended treatments for SUNCT are frequently Antiepileptic medications which are useless as you already know and do more harm with adverse side effects that any good in preventing these headaches... I usually suggest headache sufferers see their PCP/GP for a lab test of their 25(OH)D serum concentration. However, there in the UK, your NHS guidelines usually prohibit this lab test unless there's suspected hypervitaminosis D. Accordingly, if you run into this problem, telling your PCP/GP a little white lie that you're taking 50,000 IU/day vitamin D3 should do the trick. On the other hand, data from several sources including the online survey of 257 CHers taking the anti-inflammatory regimen have found most are vitamin D3 insufficient/deficient as illustrated in the normal distribution chart of 25(OH)D lab test results taken prior to starting the anti-inflammatory regimen. As you can see, the majority of the 257 CHers taking this lab test prior to starting the anti-inflammatory regimen had 25(OH)D serum concentration below 30 ng/mL or 75 nmol/L as its measured there in the UK. The optimum range for 25(OH)D that results in a decrease or cessation of CH is 80 to 100 ng/mL (200 to 250 nmol/L). Accordingly, obtaining this lab test now is not as important as having it done 30 days after starting the anti-inflammatory regimen. As most CHers have found taking a vitamin D3 loading dose of 50,000 IU/day for 12 days elevates their serum 25(OH)D into the therapeutic range rapidly and usually with favorable results, then dropping back to a maintenance dose of 10,000 IU/day, it wouldn't be a lie if you told your PCP/GP you've been taking 50,000 IU/day vitamin D3. Your best course of action is to do what many cluster headache sufferers (CHers) there in the UK do, and that's to order some 5000 IU vitamin D3 soft gels. I work with hundreds of new CHers a year and have recently found that Bio-Tech D3-50, a 50,000 IU water soluble form of vitamin D3 from Bio-Tech Pharmacal is faster acting and more effective at the same dose as the liquid soft gel vitamin D3 formulations. I've been providing information outreach to nearly 2000 CHers over the last eight years on the benefits of taking what I call the anti-inflammatory regimen. It consists of 10,000 IU/day vitamin D3, 400 mg/day of magnesium, 25 mg/day zinc, 3 mg/day boron, 1000 mg/day Omega-3 fish oil and vitamin A at RDA. The results have been amazing with 80% of CHers reporting a significant reduction in the frequency of their CH from an average of 3 CH/day down to 3 to 4 CH/week in the first 30 days. Moreover, 50% of CHers who start this regimen experience a complete cessation of their CH in the first 30 days. As SUNCT/SUNA are the evil cousins of cluster headache with similar pathogenesis, they should respond to this regimen as well. While you're waiting for the vitamin D3 there are several things you can do now to help reduce the frequency and severity of your headaches. These include hydration, drinking at least 2.5 liters of water a day. It sounds too simple, but it works. You shouldn't have any problems picking up magnesium, zinc, boron and vitamin A supplements. To this many CHers and migraineurs have added 300 to 900 mg/day CoQ10 (very important if you're taking statins), 1000 to 2000 mg/day Turmeric (Curcumin), liposomal vitamin C at 4 to 6 grams/day, Quercetin and Resveratrol at 500 mg/day. We've also found diet can play a key role in successful headache preventative treatments. The Atkins Diet or Ketogenic DIte are both very effective. They call for a complete abstinence of all sugars, wheat products and a very limited intake of carbohydrates or high starch food types. You can eat all the free range organic meats, poultry, eggs and wild caught fish you want. NON GMO organic green and colored veggies are also on the list of good things to eat. Restrict fruits to dark berries and grapes. A good anti-inflammatory diet should also include garlic, ginger, lemon, and apple cider vinegar. You can combine fresh ginger, garlic, lemon juice and apple cider vinegar with some extra virgin olive oil and blend as an emulsion salad dressing over fresh spinach, sweet onions, portabella mushrooms, boiled eggs and some smoked or kippered salmon. That's a great meal all in one... Take care and please keep us posted. V/R, Batch
  17. xxx

    Vitamine D3

    Hey Spiny, I've kept my 25(OH)D serum concentration between 127 ng/mL and 188 ng/mL for the last 5 years and currently 163 ng/mL. In that time my serum calcium remained within its normal reference range so no hypercalcemia a.k.a., vitamin D3 intoxication/toxicity. My PCP is ok with my 25(OH)D this high as long as my serum calcium remains in the normal reference range. He still makes a notation in my medical record that he suggested a lower vitamin D3 dose. This is a CYA action. Accordingly, there's nothing wrong with a 25(OH)D serum concentration of 124 ng/mL as long as it keeps you CH pain free and your serum calcium remains within its normal reference range. Regarding the return of your CH after lowering the vitamin D3 dose. You just discovered the therapeutic dose that keeps you CH pain free. A couple days at a loading dose of 50,000 IU/day will get you back CH pain free a lot faster... Take care and please keep us posted V/R, Batch.
  18. Hey Ex_Spud, The American Academy of Neurology (AAN) and American Headache Society (AHS) both list CME programs focused on primary headache, (they cover Diagnosis and Standards of Care with recommended treatments for cluster and migraine headache). These CME courses should be available to neurologists and headache specialists in every state. Take care, V/R, Batch
  19. Hey Plhbn, Welcome to Clusterbusters... Sorry about the return of your CH... If there's anything predictable about this disorder is it's unpredictable... Accordingly, crap happens... The best form of vitamin D3 suggested today is Bio-Tech D3-50. I buy it from amazon at the following link. https://www.amazon.com/Bio-Tech-D3-50-000-100-caps/dp/B00CFBAFIY/ref=sr_1_5_a_it?ie=UTF8&amp;qid=1548523894&amp;sr=8-5&amp;keywords=Bio-Tech+D3-50 This is a water soluble 50,000 IU capsule that makes it far more bio-available than the oil-based liquid soft gel formulations. Be sure to pick up some 400 mg magnesium capsules. The process of hydroxylating (metabolizing) vitamin D3 consumes magnesium rapidly as it is need during the enzymatic process. Without magnesium supplements, vitamin D3 will deplete available magnesium rapidly leading to muscle cramps... I also suggest taking the rest of the vitamin D3 co-nutrients. You can find them at the following link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Regarding Cacitriol. It is not recommended for cluster headache. The rationale is simple once you understand the molecular biology involved. Vitamin D3 and its first metabolite 25(OH)D3 pass through the blood brain barrier (BBB) and into neurons throughout the brain and in particular, neurons within the trigeminal ganglia. Once there, enzymes hydroxylate the parent vitamin D3 molecule and the 25(OH)D molecule to the genetically active metabolite 1,25(OH)2D3, calcitriol. It is this metabolite that initiates the genetic expression that helps prevent CH. It turns out the BBB has windows of maximum size of 400 Daltons (Da). That means any molecule with a molecular mass greater than 400 Da will not be able to pass through the BBB. The parent vitamin D3 molecule has a molecular mass of 385 Da and 25(OH)D has a molecular mass of 400 Da. That means both can pass through the BBB although being smaller by one hydroxyl group, vitamin D3 passes through the BBB faster than 25(OH)D. Calcitriol, 1,25(OH)2D3 has a molecular mass of 415 Da so is too large to pass through the BBB. If too much calcitriol is taken, it can pull too much calcium from the gut causing hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity. Hope this helps. Take care and please keep us posted. V/R, Batch
  20. xxx

    Newbie

    Hey Headsufferer, Welcome to Clusterbusters. You need to join Clusterheadaches.com at the following link and talk with DJ, a.k.a., Dennis Johnson. He started CH.com and had Moya Moya. He also had surgery for his Moya Moya so will be a valuable resource for you. www.clusterheadaches.com Check your message InBox, I've sent you some additional info. Take care, V/R, Batch
  21. Hey Oxy-Man, You're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH. If you think I'm blowing smoke... see your PCP/GP or neurologist and ask for the lab test of your serum 25(OH)D. This is the first metabolite of vitamin D3 that's used to measure its status. Take along a copy of the anti-inflammatory regimen CH and MH preventative treatment protocol and discus it with your doctor when you ask for this lab test. You can download a copy at the following link. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 If your lab test results for 25(OH)D come back under the following normal distribution curve for baseline 25(OH)D collected before starting the anti-inflammatory regimen, you might want to give this CH preventative a try. Data for this plot comes from an online survey of 257 CHers taking this regimen. This survey has been running continuously since December of 2011. Take care and please keep us posted. V/R, Batch
  22. xxx

    Vitamine D3

    Hey Freud, I've been providing outreach information about the anti-inflammatory regimen since December of 2010, a month after I developed it. Since then I've received valuable feedback from from hundreds of CHers taking it. Accordingly, this knowledge base provides answers to most questions. The online survey of CHers taking this regimen to prevent their CH has been running continuously since December of 2011. As of 1 Jan 2019, it's collected 293 completed and submitted surveys providing excellent clinical data. With 80% of CHers who start this regimen experiencing a significant reduction in CH frequency from an average of 3 CH/Day down to 3 to 4 CH/week in the first 30 days and 50% of CHers starting this regimen experiencing a complete cessation of CH symptoms in the first 30 days, the anti-inflammatory regimen is the safest, most effective and least expensive CH prophylaxis available today. Moreover, thanks to the feedback and some dedicated research on other supplements, we are now able to address the 20% who don't respond to this regimen in the first 30 days. The most significant part of this regimen other than the vitamin D3 is diet. An Atkins-Ketogenic diet with zero sugars, zero wheat products and limited carbohydrates makes a huge difference. A Feb 2018 Italian study of 18 drug-resistant chronic CHers on this diet provided some eye popping results. -------- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5816269/ Introduction Drug-resistant cluster headache (CH) is still an open clinical challenge. Recently, our group observed the clinical efficacy of a ketogenic diet (KD), usually adopted to treat drug-resistant epilepsies, or migraine. Aim Here, we aim to detect the effect of KD in a group of drug-resistant chronic CH (CCH) patients. Materials and methods Eighteen drug-resistant CCH patients underwent a 12-week KD (Modified Atkins Diet, MAD), and the clinical response was evaluated in terms of response (≥50% attack reduction). Results Of the 18 CCH patients, 15 were considered responders to the diet (11 experienced a full resolution of headache, and 4 had a headache reduction of at least 50% in terms of mean monthly number of attacks during the diet). The mean monthly number of attacks for each patient at the baseline was 108.71 (SD = 81.71); at the end of the third month of diet, it was reduced to 31.44 (SD = 84.61). Conclusion We observed for the first time that a 3-month ketogenesis ameliorates clinical features of CCH. ---------- I've been in contact by email with the Principal Investigator for this study and provided data on the efficacy of the anti-inflammatory regimen. We're both confident combining both therapies will result in a jump in efficacy to over 90%. Sooo.... To my way of thinking, starting the anti-inflammatory regimen is a good move. Based on years of experience with this regimen, I'll wager your only regret will be you didn't start it sooner. Take care and please keep us posted. V/R, Batch
  23. xxx

    Vitamine D3

    Hey Virrr, Thank you for the feedback. Having CH return after an initial pain free response to the anti-inflammatory regimen is not uncommon and easily fixed. It happens to roughly 5% of CHers starting this regimen. What has likely happened is you've burned up available cellular concentrations of magnesium that's needed to hydroxylate (metabolize) vitamin D3 to its genetically active metabolite 1,25(OH)2D3. The simple fix is stop taking vitamin D3 loading dose for a day or two and double the magnesium dose to 800 mg/day split 400 mg in the morning with breakfast and 400 mg with the evening meal. When you restart the loading schedule, continue taking 800 mg/day magnesium through the 12th day of the loading schedule, after which you drop the Vitamin D3 dose to an initial 10,000 IU/day maintenance dose and the magnesium back to 400 mg/day. Doubling the Omega-3 fish oil can also help while on the 12-Day accelerated vitamin D3 loading schedule. VocTeacher is spot on... Vitamin K2 also helps. If this doesn't get you back CH pain free, add 500 mg/day Quercetin. It helps activate the vitamin D receptors (VDR) that are needed to continue the genetic expression that prevents CH. If that doen't work, you may have picked up an allergy to something in your environment or diet. Allergies release histamine in such large quantities, they make nearly all forms of CH prophylaxis ineffective. In this case, see your local chemist for a first-generation antihistamine like Diphenhydramine (Benadryl) and take at 25 mg every 4 hours for a week to ten days. Second- and third-generation "non drowsy" antihistamines don't work as well as they cannot pass through the blood brain barrier to block histamine H1 receptors at the genetic layer. Just be careful and not drive as this much Diphenhydramine will make you drowsy. If you need to drive or be sharp as a tack during the day, wait until you're home for the day then take 50 mg Diphenhydramine as you walk through the door and another 50 mg at bedtime. Regarding the placebo effect... it happens with all forms of cluster headache prophylaxis not just vitamin D3. As the raw efficacy of the anti-inflammatory regimen is 52% for a sustained pain free end point response and 80% for a significant reduction in CH frequency (an average of 3 CH/day down to 3 or 4 CH/week), both are well beyond the highest reported placebo response in CH of 14% to 43%, the lowest value was reported using the strict endpoint; cessation of headache attacks. (Nilsson Remahl AI, Laudon Meyer E, Cordonnier C, Goadsby PJ. Placebo response in cluster headache trials: a review. Cephalalgia. 2003 Sep;23(7):504-10.) Even if it was a placebo effect... you're still pain free so who cares... If you're the curious type and want to know for sure if this regimen is effective in preventing your CH or if it's the placebo effect... wait until you've been CH pain free for at least 2 weeks then stop taking this regimen... If you're like me and many other CHers, your CH will return in 3 to 4 days and could take as long as a week. When the CH returns (and it will), restart this regimen with a couple days at a 50,000 IU loading dose then drop back to your maintenance dose of 10,000 IU/day. This will get you back CH pain free in a day... two days tops. I realize this sounds like a silly thing to do, but it will accomplish two things. (1) It lowers the probability it was a placebo effect and (2) more importantly, it will give you confidence this regimen is actually working to prevent your CH. When you've completed 30 days on this regimen see your PCP or neurologist for lab tests of your serum 25(OH)D, calcium and PTH. If there are any questions about these lab tests, give your PCP/neurologist a copy of the anti-inflammatory regimen CH (and Migraine) preventative treatment protocol from the following link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 When you have these lab results in hand, please find the time to take the online survey of CHers taking this regimen to prevent their CH. To start this survey, click on the following link. We need results from CHers like you to convince neurologists this regimen is a safe and effective CH prophylaxis. http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 Thanks again, take care and please keep us posted. V/R, Batch
  24. AliKhan, Yeppers... the vitamin B complex and vitamin B2 in particular will turn urine bright yellow for a few hours after taking it. Curcumin and oranges sound great! Don't forget the Quercetin... Take care and please keep us posted V/R, Batch
  25. Hey Alikhan, Thank you for the update, lab results and list of supplements. They look great. That you haven't responded with your 25(OH)D up at 110 ng/mL (well into the green zone for CHers) tells me we are missing something... Are you taking any other Rx medications? If so, what are they. There are a number of other supplements you can take that have helped CHers improve their response to the anti-inflammatory regimen with a 25(OH)D serum concentration in the green zone. They include: A first-generation antibiotic like Diphenhydramine (Benadryl) 25 mg every four hours for a week to 10 days. This helps if you've an allergic reaction cooking away. These can be subclinical, i.e., no obvious or outward symptoms, but the allergic reaction is still there pumping out histamine... a CH trigger. Second-and third-generation "non-drowsy" antihistamines are not as effective as they can't pass through the blood brain barrier to block histamine H1 receptors. Accordingly, see your local chemist for available first-generation antihistamines then take as directed. 1000 mg/day Turmeric (Curcumin) - I would think there's plenty of this in traditional Pakistani meals. Additional vitamin B2 (riboflavin) up to 400 mg/day total. 4 grams/day Liposomal Vitamin C (1000 mg every 2 hours with water.) 300 to 900 mg/day CoQ10. Very important if taking statins. 500 mg/day Quercetin - This supplement helps activate the vitamin D3 receptors (VDR) on DNA strands to enable more effective genetic expression made possible by vitamin D3. Probiotic - This helps build friendly colonies of bacteria in the GI tract called the microbiome Diet and water - The Atkins or ketogenic diets are a good choice. Zero sugar, zero wheat products and very limited carbs. Avoid all grain oils. Olive oil, butter, avocado oil and my favorite extra virgin coconut oil are all very good for you. Eat all the free range meat, poultry and wild caught fish you want along with organic veggies and fruits. Most importantly, drink at least 2.5 liters of water a day. Take care and please keep us posted. V/R, Batch
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