Leaderboard

I'm going to go ahead and post this a few days early as I may not have the time this weekend! This board went live on October 27th in 2009! I joined that day so it will also mark 10 years of active membership here for me as well!! We all owe a deep debt of gratitude to DJ for helping with getting the original yabb powered board up and running!! I can honestly say that being a part of clusterbusters this past 10 years has been by far the most rewarding experience of my life!! DD

Wonderful Kat!!! Happy Recovery!

Hey man. Im getting ready to try emgality. I am episodic. Cycle started in the fall. I hope you are still doing well. And like you, if it does end. Ill probably wonder if it was just the end of the cycle. Ill keep posting. But thanks for posting. Sometimes people hunt through old post for info.

It's working. No headaches since 9/4.

Well Brian, I'm not going to go looking for those posts I'm going to ignore them. I refuse to believe it. Aging out is one of the great hopes and I won't allow you to destroy my vanity with the truth!!

The important thing is psychedelics are being reintroduced to society in a rational manner. Responsible researchers are conducting studies in a though and thoughtful way. Hopefully their results will contribute to the rescheduling of these substances so folks have an opportunity to explore their benefits without fear of prosecution. Having psilocybin or LSD available as a pharmaceutical type medication will help answer questions about dosing, frequency and efficacy. The effects and benefits are so strong it will be hard to argue psychedelics have no medical value.

I'm going to start using that too. Trigeminal autonomic cephalalgia.....if I can remember all of that in the moment, lol.

Hey Jost, Thanks for the feedback and sorry you're having a rough time. I'll be updating my web page at VitaminDWiki as soon as I get some feedback on the protocol update from a few vitamin D3 experts and neurologists who treat CHers and migraineurs with vitamin D3. I've been to Phoenix in the August time frame, so don't envy your situation with the temperature. Infections and allergies consume serum 25(OH)D rapidly, frequently leaving too little remaining to prevent CH or migraines. The best course of action reported by many CHers when they encounter infections is to load vitamin D3 for 3 to 4 days and increase their vitamin C intake to at least 6 grams/day. Allergies require a week to 10-day course of a first-generation antihistamine like Benadryl (Diphenhydramine HCL) taken at 25 mg every four hours throughout the day. (Loading vitamin D3 = taking a loading dose of 50,000 IU/day vitamin D3 for a few days to elevate serum 25(OH)D3 rapidly to a therapeutic serum concentration). The following notional graphic illustrates the advantage of a 12-Day accelerated vitamin D3 loading schedule over just taking a maintenance dose of vitamin D3. By "loading" you get to a therapeutic 25(OH)D3 serum concentration in 12 days where taking only a maintenance dose of 10,000 IU/day vitamin D3 could take upwards of one to two months to start experiencing a favorable response to this regimen with respect to CH or a viral infection. Unlike bacterial infections that require an appropriate antibiotic, there are no silver bullets for viral infections. Accordingly, in the case of a viral infection (colds and flu) bumping the vitamin D3 and vitamin C doses is the best and safest course of action. Taking these vitamins helps your body's immune system resolve a viral infection faster and more effectively. Taking an antibiotic for a viral infection is not only ineffective, antibiotics by their very nature are indiscriminate, so also kill off the friendly colonies of bacteria living in the GI tract called the microbiome. As most of our immune systems reside in the GI tract, keeping the microbiome "happy" is prudent. If your doctor has prescribed an antibiotic, be sure to start a course of probiotic as soon as you've completed the antibiotic. Regarding migraine headache... The basic anti-inflammatory regimen supplements as illustrated in the following photo by brand and maintenance dose help many migraineurs starting this regimen prevent their migraine headaches. Most of us taking the Bio-Tech D3-50 water soluble (micellized) 50,000 IU vitamin D3 capsules have found one (1) D3-50 capsule a week is an effective maintenance dose. It's always a good idea to see your PCP/GP or neurologist for lab tests of your serum 25(OH)D, calcium and PTH. Without knowing your 25(OH)D serum concentration, you're shooting in the dark at an appropriate vitamin D3 loading dose or where you are with respect to target 25(OH)D serum concentrations. For example, data from the online survey for CHers and other sources for migraineurs indicate the following mean 25(OH)D serum concentrations resulting in a significant reduction in headache frequency or complete cessation of headache symptoms. For practical purposes, the following 25(OH)D3 concentrations become the initial targets when starting this treatment protocol. Mean 25(OH)D Serum Concentration among Episodic CHers - 80 ng/mL Mean 25(OH)D Serum Concentration among Chronic CHers - 90 ng/mL Mean 25(OH)D Serum Concentration among Migraineurs - 120 ng/mL The following normal distribution of 25(OH)D3 lab test results from the online survey harvest in July of 2018 tells an important story CHers and Migraineurs need to understand. The green normal distribution curve illustrates the mean 25(OH)D3 serum concentration response of 80 ng/mL to an average vitamin D3 dose of 10,000 IU/day. What this also indicates is half of the CHers (Episodic and Chronic) responding to this regimen needed a higher 25(OH)D3 concentration for a favorable response. The blue S-shaped sigmoid curve illustrates the cumulative probability. As it's clear from the 25(OH)D responses, up to half of CHers starting this regimen, took a higher maintenance dose of vitamin D3 than 10,000 IU/day to experience a favorable response. That makes the blue sigmoid curve a reasonable dose response curve. In simple terms, a higher vitamin D3 dose results in a higher 25(OH)D3 serum concentration needed for a favorable CH response. For reference and regarding safety of vitamin D3 doses > 10,000 IU/day and high 25(OH)D serum concentrations > 100 ng/mL (250 nmol/L), I've maintained my serum 25(OH)D between 130 ng/mL and 188 ng/mL over the last three years due to allergic reactions to pollen and mold spores with no problems. My PCP is ok with my 25(OH)D serum concnetrations this high as long as my serum calcium remains within its normal reference range. As you'll see in the following chart of my lab results... it has. Besides a higher 25(OH)D serum concentration between 120 ng/mL and 150 ng/mL, most migraineurs will need some or all of the following supplements for a pain free response. o 300 to 900 mg/day CoQ10 (300 mg 3 times a day). CoQ10 is a must for CHers and migraineurs if taking statins o 3 to 6 grams/day liposomal vitamin C (1000 to 2000 mg with breakfast, lunch and dinner) o 1000 to 2000 mg/day Turmeric (Curcumin). o Probiotic with a high colony forming count containing a variety of Lactobacillus acidophilus, Lactobacillus plantarum, Bifidobacterium bifidum, and Streptococcus thermophilus. o 300 to 600 mg/day Alpha-Lipoic Acid (ALA) o 500 mg/day Resveratrol o 500 mg/day Quercetin o 3 to 6 grams/day L-Lysine I take the first three of these supplements daily for good health and to keep my 75 year-old heart ticking. Regarding oxygen therapy. Too many neurologists and most PCP/GPs have never treated a patient with CH so are unfamiliar with the Standards of Care recommended interventions (abortives and preventatives) for CH that list oxygen therapy as the first abortive of choice at 15 liters/minute. The rest have been brainwashed by the Big Pharmas that oxygen therapy is ineffective for cluster and migraine headache and that the very expensive patented pharmaceuticals (read sumatriptan succinate [Imitrex] and its derivatives) are very effective. What you need to do is print out the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias by the God Squad of neurologists, expert in treating patients with CH and who are also members of the ICHD 3 working groups for CH and other TACs. They include: A. May, M. Linde, P. Sandor, S. Evers and P. Goadsby. You can download a copy at the following link and take it to your neurologist when you ask for an Rx for oxygen therapy as an abortive for your CH. https://onlinelibrary.wiley.com/doi/full/10.1111/j.1468-1331.2006.01566.x You can also download and print out the following link for: Treatment of Cluster Headache: The American Headache Society Evidence-Based Guidelines. https://www.ncbi.nlm.nih.gov/pubmed/27432623 Results and Recommendations: For acute treatment, sumatriptan subcutaneous, zolmitriptan nasal spray and high flow oxygen remain the treatments with a Level A recommendations. I hope this slayed all the dragons making it difficult for you to control your CH and MH... Take care and please keep us posted. V/R, Batch