Batch

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

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.

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

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

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

Christopher, Good on you for spreading the word... and for taking the survey. Thanks also for the email update. Take care, V/R, Batch

Katrina, That's not a cocktail... It's polypharmacy! No wonder you're having problems. Check your message InBox. Take care, V/R, Batch

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

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.

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

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&qid=1548523894&sr=8-5&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

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

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

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