Jump to content

xxx

Advanced Members
  • Posts

    610
  • Joined

  • Last visited

  • Days Won

    76

Everything posted by xxx

  1. Hey Grumpytom, The soreness after a heavy CH hit is called cutaneous allodynia. Pain resulting from an innocuous stimulus to normal skin or scalp. It's usually triggered by touch that's not normally painful. It's a little known but common symptom of CH... Take care and please keep us posted. V/R, Batch
  2. Hey Islandguy and Pebblesthecorgi I know what you two and Pebblescorgi's father are going through and the good news is it doesn't need to be that way... The odds are you’re vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your headaches. The results of lab tests for serum 25(OH)D, the metabolite of vitamin D3 that’s used to measure its status, taken before start of treatment with the anti-inflammatory regimen by 187 cluster headache sufferers (CHers) with active bouts of cluster headache (CH) are illustrated in the following normal distribution chart. As you can see, it’s a no-brainer. If you have CH, you are very likely vitamin D3 deficient and for sure, with a 95% confidence interval, your serum 25(OH)D concentration is less than 47 ng/mL. As a CHer, we need to have our serum 25(OH)D concentration up around 80 ng/mL in order to experience a lasting pain free or substantially pain free response. Please understand what I'm suggesting isn't an either-or situation with busting. I've worked with several CHers here who continued busting while taking the vitamin D3 regimen with good success in preventing their CH. I call this combination of vitamin D3 and the vitamin D3 cofactors the anti-inflammatory regimen as that's what it does... Instead of treating the symptoms of CH (the terrible pain), this regimen works up stream in the pathogenesis of CH to down-regulate/inhibit the production of Calcitonin Gene-Related Peptide (CGRP) and Substance P (SP). It's these two neuroactive substances that are responsible for the neurogenic inflammation and pain of CH. Vitamin D3 does this through the process of genetic expression where the genetically active vitamin D3 metabolite 1,25(OH)2D3, calcitriol, physically attaches to genes within neurons in the hypothalamus and trigeminal ganglia. Genetic expression is where vitamin D3 unlocks the cell's library of genetic instructions and the cells start executing these instructions doing one of four things... they replicate, differentiate, up- or down-regulate the production of genetic products or they die, (apoptosis - programmed cell death... what we would hope happens to cancer cells). My name is Pete Batcheller, a.k.a. "Batch" here at Clusterbusters and CH.com. I'm a retired Navy fighter pilot and long time chronic cluster headache sufferer (CCHer)… except I no longer suffer from these terrible headaches. I’m the guy who developed and started taking the anti-inflammatory regimen in October of 2010… I’ve been pain free ever since. You’ll see how and why as you read on. So much for the mechanism of action... Confirming a vitamin D3 deficiency is easy… See your PCP or neurologist for the lab test of your serum 25(OH)D, total calcium and PTH (Parathyroid Hormone) The total calcium and PTH will be used as a baseline for subsequent labs after your 25(OH)D has stabilized around 80 ng/mL. 25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status. The normal reference range of 25(OH)D is 30 to 100 ng/mL (75 to 250 nmol/L). However, most physicians will interpret 31 ng/mL as normal. While that may be true and a high enough concentration to prevent rickets... it's far too low to prevent CH. CHers need to have their 25(OH)D up in a range between 60 to 110 ng/mL (150 to 275 nmol/L). The target 25(OH)D serum concentration is 80 ng/mL (200 nmol/L). Over the last six years at least 600 CHers have started the anti-inflammatory regimen of vitamins and minerals with at least 10,000 IU/day vitamin D3. In the first 30 days of treatment, 83% of these CHers have experienced a significant reduction in the frequency, severity and duration of their CH. 75% experienced multiple 24-hour pain free periods and 54% remain essentially pain free. This regimen is effective for episodic and chronic CHers although episodic CHers have a slightly better response. This regimen is also effective for Migraineurs in preventing their headaches. If you’re in doubt about starting this regimen, see your PCP or neurologist for the 25(OH)D lab test and read Zd10’s post as well as the three following links to posts by other CHers who started this regimen: 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 The "Go To" link with info on all the anti-inflammatory supplements, their doses, drug interactions and contraindications can be found on page 1 of the following link at CH.com. I try to keep this thread updated with the latest survey data. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404 The following table represents the latest list of anti-inflammatory regimen supplements and doses: I've found the following supplements shown by brand in the photo below are formulated with most of the supplements we need. I buy them at Costco, but you should be able to find similar formulations at most Vitamin Shoppes, supermarkets, Wall-Mart or over the Internet at iherb.com and amazon.com: If you can’t get to a Costco outlet, a CHer in the UK has found a source for all the needed supplements at iherb.com. See his post at the following link for details on how to order them over the Internet: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1890%20#1890 The vitamin B 50 Complex is not shown. You’ll need a 3-month course of vitamin B 50 Complex to handle any deficiencies among the seven B vitamins. Although the Super K with vitamin K2 complex isn't essential in preventing CH, it is needed to handle the increased serum calcium made available by taking vitamin D3 at the doses we take. There are a growing number of studies finding the super K2 complex helps direct calcium away from soft tissues and arteries directing it instead to bones and teeth improving overall bone mineral density. If you’re taking blood thinners, vitamin K1 is contraindicated. Vitamin K2 (MK4 and MK7) can affect clotting so be sure to discuss it with your PCP or neurologist before taking it. There are also a number of studies that have found people with a vitamin D3 deficiency are frequently also deficient in magnesium. Most CHers taking this regimen have found the suggested 400 mg/day magnesium sufficient. This is also the RDA for magnesium Most CHers who have started this regimen in the last two years and had their 25(OH)D results come back below 30 ng/mL, have used the accelerated vitamin D3 dosing schedule and found it got them pain free faster than taking the maintenance dose of vitamin D3 at 10,000 IU/day... The two accelerated vitamin D3 dosing schedules follow: On day one, take the entire regimen with 10,000 IU/day vitamin D3 and two of the Omega-3 Fish Oil liquid softgel capsules along with one each of the remaining supplements the first day. If there's no allergic reaction to these supplements (very rare), proceed with either the 2-Week or 4-Week loading schedules: Two-Week Vitamin D3 Loading Schedule Week 1. 50,000 IU/day vitamin D3 for one week. Take all the other supplements Week 2. 40,000 IU/day vitamin D3 for six (6) days then drop the vitamin D3 dose to 10,000 IU/day on the 7th day. This will be the normal maintenance dose of vitamin D3. Take all the other supplements and cofactors daily. Four-Week Vitamin D3 Loading Schedule Week 1. 20,000 IU/day vitamin D3 plus one loading dose a week of 50,000 IU vitamin D3 Week 2. 20,000 IU/day vitamin D3 plus one loading dose a week of 50,000 IU vitamin D3 Week 3. 15,000 IU/day vitamin D3 and no loading dose Week 4. 15,000 IU/day vitamin D3 and no loading dose Take all the other supplements and cofactors daily, preferably with the largest meal of the day containing the most fats. At the end of the 4th week, drop the vitamin D3 dose to 10,000 IU/day plus the other supplements and cofactors. The following graphic illustrates the difference in 25(OH)D response times between the 2-Week, 4-Week loading schedules. These two vitamin D3 loading schedules are safe, equally effective and should result in a rapid 25(OH)D response to therapeutic concentrations near 80 ng/mL with a significant reduction in the frequency, severity and duration of CH faster than at the maintenance dose 10,000 IU/day vitamin D3. The target serum concentration for 25(OH)D is 80 ng/mL so the total loading dose can be adjusted at the rate of 100,000 IU vitamin D3 per 10 ng/mL of 25(OH)D response. Vitamin D3 is lipophilic so adjustments can also be made for BMI. Accordingly, if the BMI is <18.5, subtract 100,000 IU from the total loading dose. If the BMI is ≥ 25, add 100,000 to the total loading dose. Lab tests for serum 25(OH)D, calcium and PTH should be conducted at the completion of either loading schedules. Results should indicate a 60 ng/mL gain above the 25(OH)D baseline/starting serum concentration. Another set of lab test of serum 25(OH)D, calcium and PTH should be conducted three months after completion of either vitamin D3 loading schedule while on the maintenance dose. This should provide sufficient time for the 25(OH)D response to the maintenance dose of vitamin D3 to reach a stable equilibrium. Adjustments to the vitamin D3 maintenance dose can be made at this time to maintain a target 25(OH)D serum concentration of 80 ng/mL, (200 nmol/L). Routine follow up lab tests for 25(OH)D should be done on a six month or yearly basis. Regarding oxygen therapy... In researching why oxygen regulators with flow rates high enough to support hyperventilation and oxygen demand valves were more effective with shorter CH abort times than a constant flow regulator at 15 liters/minute, I found that lowering serum CO2 was a key component in obtaining fast and reliable CH aborts. A lower arterial CO2 content elevates the arterial pH (more alkaline) and this is a more powerful vasoconstrictor than oxygen even at 95% purity from the oxygen concentrator. The elevated alveolar pH enables blood hemoglobin to upload roughly 15% more oxygen so this turbocharges the blood oxygen flow to the brain to help make the abort even faster and more reliable. Around 2011 I developed a new method of oxygen therapy called Hyperventilation and Oxygen Therapy that has proven to be just as effective as a 40 liter/minute regulator or an oxygen demand valve in delivering rapid and reliable CH aborts. It essentially calls for hyperventilating at forced vital capacity tidal volumes with room air for 30 seconds followed by the inhalation of a lungful of 100% oxygen that's held for 30 seconds before exhaling into the room and repeating the hyperventilation with room air. Hyperventilating with room air accomplishes the same thing as hyperventilating with a regulator set at 40 liters/minute or an oxygen demand valve except it uses no oxygen. The only oxygen consumed with this method of oxygen therapy is the inhaled lungful ~ 4 liters, that's held for 30 seconds. This method of oxygen therapy consumes roughly 4 liters of oxygen a minute and results in an average abort time of 7 minutes for a total of 28 liters of oxygen per abort. That's roughly a tenth the amount of oxygen consumed with each abort with an oxygen demand valve or high flow regulator set at 40 liters/minute. I also invented what I call the Red Neck Oxygen Reservoir Bag made out of a clean 40 gal trash bag or 30 gal kitchen garbage bag. I use a plastic Coke bottle with its cap and the bottom cut off as the mouthpiece, the tubing from an old disposable non-rebreathing oxygen mask, some electrician's tape and some Duck tape. After the Coke bottle mouthpiece has been inserted through one corner of the bag's bottom and the oxygen tubing through the other corner, I seal both with electrician's tape for an air tight seal then close the open end of the bag with a strip of Duck tape as illustrated in the following photos. You make sure the cap is secure on the Coke bottle then plug the oxygen tubing into the barb fitting on the oxygen regulator and turn it on. When the Red Neck Reservoir is filled completely, turn off the oxygen supply valve. The Red Neck Reservoir is now ready for use to abort a CH using the method described above. All you need to do is unscrew the Coke bottle cap to inhale the lungful of oxygen then replace the cap. Other than the cost at less than $1, there's one more benefit of this contraption... There is no inhalation resistance. Hope this helps... If you have questions please contact me here at Clusterbusters or Skype me. My Skype Name is pete_batcheller. Take care and please keep us posted. V/R, Batch
  3. Hey Bounty, Allow me to offer a different opinion and option regarding the use of an oxygen concentrator. In researching why oxygen regulators with flow rates high enough to support hyperventilation and oxygen demand valves were more effective with shorter CH abort times than a constant flow regulator at 15 liters/minute, I found that lowering serum CO2 was a key component in obtaining fast and reliable CH aborts. A lower arterial CO2 content elevates the arterial pH (more alkaline) and this is a more powerful vasoconstrictor than oxygen even at 95% purity from the oxygen concentrator. The elevated alveolar pH enables blood hemoglobin to upload roughly 15% more oxygen so this turbocharges the blood oxygen flow to the brain to help make the abort even faster and more reliable. Around 2011 I developed a new method of oxygen therapy called Hyperventilation and Oxygen Therapy that has proven to be just as effective as a 40 liter/minute regulator or an oxygen demand valve in delivering rapid and reliable CH aborts. It essentially calls for hyperventilating at forced vital capacity tidal volumes with room air for 30 seconds followed by the inhalation of a lungful of 100% oxygen that's held for 30 seconds before exhaling into the room and repeating the hyperventilation with room air. Hyperventilating with room air accomplishes the same thing as hyperventilating with a regulator set at 40 liters/minute or an oxygen demand valve except it uses no oxygen. The only oxygen consumed with this method of oxygen therapy is the inhaled lungful ~ 4 liters, that's held for 30 seconds. This method of oxygen therapy consumes roughly 4 liters of oxygen a minute and results in an average abort time of 7 minutes for a total of 28 liters of oxygen per abort. That's roughly a tenth the amount of oxygen consumed with each abort with an oxygen demand valve or high flow regulator set at 40 liters/minute. I also invented what I call the Red Neck Oxygen Reservoir Bag made out of a clean 40 gal trash bag or 30 gal kitchen garbage bag. I use a plastic Coke bottle with its cap and the bottom cut off as the mouthpiece, the tubing from an old disposable non-rebreathing oxygen mask, some electrician's tap and some Duck tape. After the Coke bottle mouthpiece has been inserted through one corner of the bag's bottom and the oxygen tubing through the other corner, I seal both with electrician's tape for an air tight seal then close the open end of the bag with a strip of Duck tape as illustrated in the following photos. It turns out my Red Neck Reservoir bag works exceptionally well with an oxygen concentrator. You make sure the cap is secure on the Coke bottle then plug the oxygen tubing into the barb fitting on the oxygen concentrator and turn it on. When the Red Neck Reservoir is filled completely, turn off the oxygen concentrator. The Red Neck Reservoir is now ready for use to abort a CH using the method described above. All you need to do is unscrew the Coke bottle cap to inhale the lungful of oxygen then replace the cap. Other than the cost at less than $1, there's one more benefit of this contraption... There is no inhalation resistance. Hope this helps... Take care and please keep us posted. V/R, Batch
  4. Hey John, I should have jumped on your post a couple days ago. Off hand, I'd say you're off to a good start with the anti-inflammatory regimen with respect to your response so far. A reduction in the frequency, intensity and duration of CH is always a welcome. As far as what to do next, I'd start by adding just the magnesium. There are good reasons for doing this. For starers, 95% of CHers with active bouts of CH had a 25(OH)D serum concentration of ≤ 40 ng/mL before starting the anti-inflammatory regimen... In short they're vitamin D3 deficient... The odds are equally high they're also magnesium deficient. The two deficiencies go hand-in-hand. The second reason magnesium is such an important part of this regimen is the process of hydroxylating (metabolizing) vitamin D3 to 25(OH)D3, the first vitamin D3 metabolite, consumes magnesium at a high rate. Taking ≥10,000 IU/day vitamin D3 without taking magnesium supplements will lead to a magnesium deficiency... When that happens, the magnesium-calcium ratio tanks and this will result in cramps, usually feet, legs and hands at first... While that may seem annoying and easily dismissed, when it happens to your heart and you feel a galloping sensation in your chest... It gets your attention big time. All the supplements in the anti-inflammatory regimen play an important role in preventing your CH and staying healthy. It's not a pick list. While you may be able to skip one or two of these supplements for a few weeks without any problems, unless you're obtaining them from dietary sources, you'll face trouble down the road. When you do encounter problems with this regimen, use the process of elimination to determine which of the supplements is causing the problem then look for alternatives... a different brand, a lower dose, splitting the dose am/pm or adding a dietary source. The bottom line... This regimen is not like a prescription antibiotic you take for a few days as directed then quit. If you want to remain CH free... and stay healthy in the process... stay on this regimen year round. Look at this regimen as a way of life (a long and healthy life) like many of us who take it do. 'Hope this helps. Take care and please keep us posted. V/R, Batch
  5. Bob, Thank you for the opportunity to speak in Austin. It was an exciting, rewarding and even humbling experience I'll not forget. Meeting another cluster headache sufferer for the first time is so very special and your conference provided the opportunity for me to meet so many CHers for the first time. I've been attending cluster headache conferences since 2006 and your conference in Austin was by far, the best, most professional and most informative conference of them all. It was also the largest. I've looked at a few photos and estimate your attendance was North of 110. I'd also like to thank Eileen Brewer. She did an outstanding job. Her tireless efforts and attention to detail were clearly evident in making this conference so successful in every respect. Most of all, I appreciate your dedication to helping fellow cluster headache sufferers and wish to thank you all the other behind the scenes actions to gather attention to the painful and disabling condition we share. Thank you my friend. V/R, Batch Pete Batcheller
  6. Ricardo, You should be able to upload the videos to photobucket.com for free then post the links. This will help CHers who don't access Facebook. Take care, V/R, Batch
  7. Hey J, Great news... Stick with the anti-inflammatory regimen and you really won't need anything else. Take care, V/R, Batch
  8. Hey J, Regarding sun exposure while taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3... Unless you're running around in a bathing suit in mid-day sun without any sun block for at least 15 minutes a day... you're not getting sufficient exposure to the UB-B in direct sunlight to build up any cutaneous vitamin D3... Regarding your verapamil intake... If you take the verapamil in the morning, noon and in the evening, the first two doses will be uneffected by the 220 mg of calcium in the Mature Multi taken immediately after the evening meal.. The evening dose of verapamil may be less effective (if verapamil was effective at all in preventing your CH). My guess is the anti-inflammatory regimen will more than compensate for any possible loss of verapamil effectiveness. Take care and please keep us posted. V/R, Batch
  9. Hey J, Good questions... Your vitamin A is full strength Retinyl palmitate, or vitamin A palmitate, an ester of retinol (vitamin A) and palmitic acid. Take one capsule every three days... Good move on starting the anti-inflammatory regimen and calling your PCP for the 25(OH)D lab test. Don't take "No" for an answer... Remember to tell your PCP you're concerned about osteoporosis from the prednisone when you ask for the 25(OH)D lab test. Regarding the two vitamin D3 loading schedules listed below... Take either loading schedule and when you've completed it, then go back to the maintenance dose of vitamin D3 plus the vitamin D3 cofactors and Omega-3 fish oil. Two-Week Vitamin D3 Loading Schedule Week 1. 50,000 IU/day vitamin D3 for one week. Take all the other supplements Week 2. 40,000 IU/day vitamin D3 for six (6) days then drop the vitamin D3 dose to 10,000 IU/day on the 7th day. This will be the normal maintenance dose of vitamin D3. Again, take all the other supplements. Four-Week Vitamin D3 Loading Schedule Week 1. 20,000 IU/day vitamin D3 plus one (1) loading dose of 50,000 IU vitamin D3 Week 2. 20,000 IU/day vitamin D3 plus one (1) loading dose of 50,000 IU vitamin D3 Week 3. 15,000 IU/day vitamin D3 and no loading dose Week 4. 15,000 IU/day vitamin D3 and no loading dose Take all the other supplements and cofactors each day. At the end of the 4th week, drop the vitamin D3 dose to 10,000 IU/day plus the other supplements and cofactors. These two vitamin D3 loading schedules are equally effective and should result in a rapid 25(OH)D response to therapeutic concentrations near 80 ng/mL with a significant reduction in the frequency, severity and duration of CH faster than at the maintenance dose 10,000 IU/day vitamin D3. The 2-week schedule is faster. The target serum concentration for 25(OH)D is 80 ng/mL so the total loading dose can be adjusted at the rate of 100,000 IU vitamin D3 per 10 ng/mL of 25(OH)D response. Vitamin D3 is lipophilic so adjustments can also be made for BMI. Accordingly, if the BMI is <18.5, subtract 100,000 IU from the total loading dose. If the BMI is ≥ 25, add 100,000 to the total loading dose. Lab tests for serum 25(OH)D, calcium and PTH should be conducted at the completion of either loading schedules. Results should indicate a 60 ng/mL gain above the 25(OH)D baseline/starting serum concentration. Another set of lab test of serum 25(OH)D, calcium and PTH should be conducted three months after completion of either loading schedule while on the maintenance dose. This should provide sufficient time for the 25(OH)D response to the maintenance dose of vitamin D3 to reach a stable equilibrium. Adjustments to the vitamin D3 maintenance dose can be made at this time to maintain a target 25(OH)D serum concentration of 80 ng/mL, (200 nmol/L). Routine follow up lab tests for 25(OHH)D should be done on a six month or yearly basis. Regarding oxygen therapy... An oxygen flow rate of 7 to 9 liter/minute with a non-rebreathing oxygen mask does not provide sufficient lung ventilation to abort a cluster headache. In this case, you may be getting sufficien oxygen but the low lung ventilation is not sufficient to remove excess CO2 which will build up. Excess CO2 triggers vasodilation and that makes CH even worse and more painful. In order to avoid this problem, the oxygen flow rate needs to be a minimum of 15 liters/minute or better yet, 25 liters/minute. If you really want a rapid CH abort with oxygen therapy, you need an oxygen flow rate of 40 liters/minute. Fortunately, there's an alternative method of oxygen therapy that will work with lower oxygen flow rates. It essentially requires hyperventilating at forced vital capacity tidal volumes with room air for 30 seconds followed by inhaling a lungfull of 100% oxygen and holding it for 30 seconds. You keep repeating this sequence until the CH pain is completely gone. The complete instructions for this method of oxygen therapy and breathing techniques can be found at the following link: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1415811734/2/#2 Take care and please keep us posted. V/R, Batch
  10. Hey J, Welcome to the anti-inflammatory regimen and good questions. Regarding the vitamin A... Check the lable... most vitamin A preparations are formulated with both carotinoids and retinoids... What you're looking for is the amount of retinoid or retinoid equivalents totalling 3000 IU/day. If the retinoid equvalent is 10,000 IU per capsule, take one capsule every three days and you should be good to go. Regarding the 25(OH)D lab test, in a perfect world, I'd see my PCP or neurlogist to get this test then start the anti-inflammatory regimen... However, if it looks like it will take more than a day or two to get the lab test, I'd start the anti-inflammatory regimen and then see your PCP or neurologist to get the lab test when it's available. We can always work backwards using the total vitamin D3 taken to estimate your starting 25(OH)D serum concentration. For what it's worth, the online survey of CH'ers taking this regimen indicates the average 25(OH)D serum concentration of survey participants prior to starting this regimen is around 27 ng'mL... we need a 25(OH)D serum concentration around 80 ng/mL, (200 nmol/L) for effective CH prevention and to have a sufficient reserve 25(OH)D to deal with infections (bacterial and viral) as well as allergies as our immune system can consume vitamin D3 and its metabolites at a high rate when fighting off bad bugs, virus or allergic reactions. Most medical insurance companies will not acover the expense of the lab test for serum 25(OH)D for cluster headache... However, you can ask your doctor to order this test based on a possible osteoporosis due to taking prednisone... This works! Regarding the vitamin D3 loading schedule... The odds are your 25(OH)D serum concentration is below 30 ng/mL, (75 nmol/L) so you're going to need a vitamin D3 loading dose of at least 500,000 to 600,000 IU of vitamin D3 spread out over two weeks or four weeks. (Both schedules are equally effective)... There's an average gain of 10 ng/mL of 25(OH)D per 100,000 IU of vitamin D3. This is another reason why it's a good idea to know your serum 25(OH)D concentration before starting this regimen... I'll also echo Dallas Denny's suggestion to ask your PCP or neurologist for an Rx for home oxygen therapy. In March of 2015, we found that allergic reactions to pollen and other allergens, can interfere with vitamin D3's capacity to prevent CH, We also found that a first-generation antihistamine like Benadryl (Diphenhydraming) 25 mg taken twice a day can help-kick start vitamin D3's capacity to prevent CH. Benadryl (Diphenhydramine) has the capacity to pass through the blood brain barrier to block histamine receptors on brain cells... Second- and thrid-generation antihistamines cannot do this so are not as effective as Benadryl. I keep the latest updates to the anti-inflammatory regimen as well as results from the online survey of CH'ers taking this regimen posted on page 1 of the following link: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404 Regarding when to take this regimen... It's best to take every thing in this regimen including the Mature Multi (200 mg/day calcium) in the evening right after the largest meal of the day. This does two things... I helps avoid an upset tummy from the magnesium or Omega-3 fish oil, and it helps ensure maximum absorption... Regarding when to dose with verapamil, a calcium chanel blocker, it's best to take it at least 12 hours away from any calcium supplements. As a side note, the verapamil isn't likely working very well as a preventative or you wouldn't be starting the anti-inflammatory regimen... Most CH'ers who find the anti-inflammatory regimen prevents their CH usually work with their PCP or neurologist to taper off verapamil for good... Finally, nearly every CH who starts this regimen wants to know how long it will take to experience its preventative effects... The following chart from the online survey provides some good answers. As you can see, the majority of CH'ers have responded by the 10th day... We think adding the Benadryl (Diphenhydramine) can help the CH'ers who would have taken longer to respond to this regimen as well as the 19% who don't respond start experiencing relief. Take care and please keep us posted... V/R, Batch
  11. Bob, I'll second that... You've my fullest support. V/R, Batch
  12. There's a high probability this increase in CH activity is due to the spring pollen causing allergic reactions that flood our systems with histamines. When that happens nearly every form of CH intervention is less effective or not effective at all. The insidious thing about pollen allergies is they can be sub-clinical with no outward symptoms so you could be having an allergic reaction and never know it. Pollen can also lay around the house, car and workplace for months. All it takes is a little movement to send it airborne and it hits the nasal passages. When that happens, mast cells in the mucus membranes start dumping histamines into the local area and bloodstream. When the histamines reach the trigeminal ganglia, they trigger neurogenic inflammation and we're off to the races with another bout of CH. There are other sources of allergens that are with us year round. Any damp areas can generate mold spores and the biggest source is dust mites. They live with us year round in bedding and pillows... They may not be enough to trigger an allergic response on their own, but throw in a little more spring pollen and you reach a tipping point where there's enough to trigger an allergic response. Here's my story... I'm a chronic type and have kept my CH in full remission with the anti-inflammatory regimen (10,000 IU/day vitamin D3, Omega-3 fish oil and all the vitamin D3 cofactors: magnesium, zinc, boron, vitamin A (reinol) and the vitamin K2 complex MK4 and MK7). I live in the Puget Sound area of NW Washington state. I started falling out of remission in mid March as soon as I returned from a stay with friends down in Key West, FL where I had been CH pain free taking 15,000 IU/day vitamin D3. Alder tree pollen was sifting out of the mature trees that surround our house like a dust storm that coated my black pickup turning it gray with a very sticky and heavy dusting that acts like powdered weldwood glue when the rains hit it. See photo below. It took less than 24 hours after I returned home for allergy symptoms to appear and that was when I had the first outbreak of CH. I realized what was happening so started taking vitamin D3 at 50,000 IU/day as loading doses thinking that would overpower the flood of histamine triggered by the pollen allergy. A week of loading cut the frequency a little but not completely. I was still getting hit one or two times a night while sleeping At that point the clue bird made a low pass and the good idea light came on bright... Treat the allergy! It took a little reading to identify the best treatment option and I finally settled on benadryl (diphenhydramine), a first-generation antihistamine. I started taking it as directed at 25 mg four times a day, every 4 to 6 hours... It took a day for the benadryl to start working, but by the second day I was back in a CH pain free state... The rationale for benadryl is it passes through the blood brain barrier to block histamine receptors in brain cells. Benadryl doesn't stop the mast cells from releasing histamine and other cytokines, but it does help block the allergic reaction and associated inflammation. The only downside of benadryl is it acts as a CNS depressant so I've been a bit drowsy and napping frequently... Second- and third-generation antihistamines can't get past the blood brain barrier so don't pose a problem with drowsiness, but as they can't pass through the blood brain barrier, they would likely be ineffective in this case. It's been a month and so far so good. The Alder pollen drop is over, but it's been replaced by an equally heavy pollen drop from the Bigleaf Maple trees... http://i378.photobucket.com/albums/oo230/F8Driver/Bigleaf_Maple_Bloom_zps3cbfrjwe.jpg We've several 200 year old Bigleaf Maple trees near the house and they're loaded with blooms that drop a yellow pollen that collects on my pickup like finely ground cornmeal. I've managed to cut back on the vitamin D3 to 25,000 IU/day and three benadryl tabs/24 hours... and still remain pain free... Lesson learned! Hope this helps... Take care, V/R, Batch
  13. An interesting and timely thread... I may be able to contribute... You be the judge... My formerly black pickup mid March, a week into the Red Alder tree (Alnus rubra) pollen fall... It's gotten worse since then. The Red Alder pollen catkins are nearly spent, but the Bigleaf Maple (Acer macrophyllum) pollen drop is just starting... When I built the house in '82, I had a USDA Forest Service rep in to timber cruise the property. He estimated the Bigleaf Maples growing near the creek were 200 to 220 years old with 34 inch diameter trunks at that time. The Bigleaf Maple in the photo with sword ferns growing 20 feet up the moss covered bark has a 38 inch diameter trunk. I measured its height with a laser range finder at 125 feet. The Bigleaf Maples are loaded with blooms... If last year was any indication... we've another two to three weeks of very high pollen count outside my bedroom window here in Kitsap County in the heart of Puget Sound, WA. So what does all this forestry have to do with cluster headache... A lot!!! I'm with Weatherman on primary and secondary triggers. This concept makes good sense... I've also been sharing data from the online survey of CH'ers taking vitamin D3 as part of the anti-inflammatory regimen to prevent their CH and some of my own observations with Dr. Todd Rozen, MD, Director Headache Program, Geisinger Health Care, Wilkes Barre, PA. I've been working with Dr. Rozen since 2007 when I introduced him to the demand valve method of oxygen therapy... Dr. Rozen was also kind enough to swing by my poster presentation on the results of the survey of 127 CH'ers taking the anti-inflammatory regimen to prevent their CH at the AAN Annual Meeting in Philadelphia, PA last April. I'm the old guy in the western getup on the right... I didn't want any of the neurologists watching my poster presentation thinking I was a doctor... I'm normally on a maintenance dose of 10,000 IU/day vitamin D3 with a 25(OH)D serum concentration around 80 ng/mL to stay pain free for most of the year... However, for the last two years starting in March, I've titrated up to 25,000 IU/day and by the end of March I'm usually up to an average of 40,000 IU/day vitamin D3 in order to stay CH pain free. With the heavier than normal pollen this year, I've been averaging 50,000 IU/day vitamin D3 and doubling the magnesium to 800 mg/day since the first week in March... Only it's not working as I'd hoped... It's a little embarrassing to be the vitamin D3 guru and still get hit with CH... but that was the case three weeks ago... I started getting hit up to 3 times a night while taking an average of 50,000 IU/day vitamin D3... Fortunately, oxygen therapy with hyperventilation knocked down these hits in 5 to 7 minutes. At that point I went back over my notes and found the mechanism of action for an allergic reaction results in a flood of histamine... Pollen hits mast cells in the mucus membranes of the nasal passages, the mast cells dump histamines and other inflammatory agents into the surrounding tissues and blood stream and it's off to the races with an allergic cascade... Another interesting part of an allergic reaction is there's a spike in the absolute eosinaphil count... When the absolute count of these specialized white blood cells goes over 350, it's a good indication there's an allergic reaction present. My PCP has been great following my use of vitamin D3 to prevent my CH, so I got him to write me a script for the CBC and WBC Differential blood tests... I took the scripts over to the Naval hospital for a blood draw and two days later I got the results... My absolute eosinaphil count was 390.... Another check of my notes along with some open source standard of care recommended treatments for allergies and up jumped good old benedryl, a first-generation antihistamine. The rational for taking a first-generation anti-histamine is they pass through the blood brain barrier where second- and third-generation anti-histamines do not. This allows benedryl to block histamine receptors in brain cells... and in turn, slow or stop the allergic reaction where it counts most for CH'ers. Accordingly, I started dosing with benedryl per the instructions on the bottle at 25 mg 4 times a day. The results were dramatic... In less than two days, the frequency and severity of my CH dropped to less than one mild hit a night (while sleeping), and these CH were so mild, they aborted very rapidly with two to three deep breaths of oxygen. I've actually slept several nights totally pain free since starting the benedryl and I've also tapered my vitamin D3 intake down to 40,000 IU/day... When I shared this information with Dr. Rozen, he commented I was spot on target... He indicated they frequently treat migraineurs and a few CH'ers hospitalized due to their headaches, with a benedryl IV. The thinking now is an allergic reaction impacts the vitamin D3 capacity to prevent CH by one or more of three mechanisms: It totally overwhelms vitamin D3 genetic expression; It interferes with vitamin D3 genetic expression; or the immune system response to the allergic reaction consumes available vitamin D3, it's metabolites and enzymes needed to hydoxylate vitamin D3 all the way to its hormonal form, 1,25(OH)2D3... leaving too little left to prevent CH... Sorry, my degree was in chemistry... Hydroxylation is a chemical process that introduces a hydroxyl group (-OH) into an organic compound. In the case of vitamin D3, two (-OH) groups are added, one each to the 1st and 25th positions on the vitamin D3 molecule to make 1,25(OH)2D3. Connecting all the dots and piecing the puzzle together... it appears an allergic reaction renders nearly all methods of CH intervention less effective at best... and totally ineffective the rest of the time... That goes for imitrex, oxygen, verapamil, vitamin D3, and psilocybin... Moreover, it also appears that treating the allergic reaction with a first-generation antihistamine makes these methods of CH intervention affective again. By the way, there are a number of studies that have concluded that mushrooms exposed to the UV-B in sunlight or UV lamps, results in a nutritional increase in the ergocalciferol (vitamin D2) content of mushrooms... up to 990 IU/70 grams of fresh mushrooms... If dried, the vitamin D2 content/gram is much higher... See the following link: http://omicsonline.org/a-nutritionally-meaningful-increase-in-vitamin-d-in-retail-mushrooms-is-attainable-by-exposure-to-sunlight-prior-to-consumption-2155-9600.1000236.php?aid=20611 Please understand I'm not suggesting this is the mechanism of action in using psilocybin to bust CH... There's a very real mechanism of action involved in psilocybin's capacity to prevent CH... The vitamin D2 content is none-the-less a thinker...  Your thoughts? Take care, V/R, Batch
  14. CHfather, I agree... although the previous RCT was conducted on migraineurs... (another hand-me-down intervention)... the efficacy of this monoclonal anti-body was only slightly better than the placebo... "The mean change from baseline to week 12 in the number of migraine headache days was -4·2 (SD 3·1; 62·5% decrease) in the LY2951742 group compared with -3·0 (SD 3·0; 42·3% decrease) in the placebo group." See the following link for details: http://www.ncbi.nlm.nih.gov/pubmed/25127173 I attended the 2014 American Academy of Neurology Annual Meeting last April in Philadelphia, PA to make a poster presentation on the survey results of 127 CH'ers taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 to prevent their CH... See the following link for the abstract. http://www.neurology.org/content/82/10_Supplement/P1.256 While there at AAN, I had the opportunity to sit in on a pair of RCT's being briefed on the use of monoclonal antibodies with an appetite for CGRP being used as a preventative for migraines by Dr. Peter Goadsby MD and Dr. David Dodick MD who tag-teamed as Principal Investigators on these two studies... In short, with a lot of hand waving (and pay no attention to what's behind the curtain) the list of adverse events appeared more significant than the claims of efficacy in these two studies. I commented over at CH.com last year that it was only a matter of time before they would announce a study using one or both of these same preventatives for CH... Monoclonal antibodies (MABs) are classified as biologics. Like prednisone, they cut both ways. While MABs won't cure a disorder, they can lessen the symptoms and in some cases, halt the progress... but at a price... Unfortunately, all biologics/MABs (the name of the biologic ends in "mab") carry a long list of side effects that range in order from nasty to down-right onerous including: compromised immune system, life threatening infections like tuberculosis and pneumonia, fungal infections and a growing list of cancers. Watch the TV ads for Humira (Adalimumab) and you'll get an even longer list of side effects. I can give you first hand testimony as to MAB side effects... I was a participant in a study at the National Eye Institute, NIH, where I was given daclizumab. It is typically given to organ transplant patients to prevent organ rejection. I took it to treat an autoimmune inflammatory eye disorder... basically to prevent my retina from rejecting me... Over the course of the year long treatment with daclizumab, it knocked my immune system to parade rest, I developed squamous cell carcinoma and finally eosinophilic meningitis. These were among the known side effects of daclizumab listed in the consent form I signed prior to starting this study. The only reason I participated in this study was at the time, not knowing any better... these side effects appeared to be the lesser of the evils compared to going blind. I didn't... but for another reason... and it wasn't due to daclizumab... According to Consumer Reports, MABs are very expensive, with some costing more than $5,000 per week..." As a side note, the mechanism of action in the capacity of vitamin D3 and the rest of the cofactors in the anti-inflammatory regimen to prevent CH is thought to be the down-regulation/suppression of CGRP. With a raw efficacy of 83% of the CH'ers taking this regimen experiencing a significantly reduction the frequency, severity and duration of CH and 60% experiencing a lasting pain free response... all with no adverse side effects, lots of health benefits and a cost of 35 to 45 cents a day... I think you can see where I'm going and why I would choose vitamin D3 and the cofactors over a genetically cloned biologic. I know how important it is to all CH'ers to have studies like this conducted so please don't think I'm throwing cold water on the upcoming study of LY2951742 as a CH preventative... I hope this study finds it is very effective in preventing CH... That said, risk of adverse side effects from MABs are real, and I would caution anyone planning to participate in this study to read the consent form very carefully, then do your own risk/reward assessment before proceeding. There are alternatives. As an added side note... http://www.drugs.com/price-guide/humira The cost of an FDA approved form of LY2951742 will likely fall in the above range... and I fear it will not be covered under Obamacare... "In 2001, Abbott Laboratories spent nearly $7 billion on the biggest acquisition in the company's 123-year history, primarily to access one drug, Humira. Since then, the North Chicago-based drug giant has raked in more than $24 billion in sales from Humira, a pricey medicine derived from human cells and used to treat a variety of autoimmune diseases. This year, Humira is forecast to have its biggest year ever, with some analysts projecting more than $7 billion in sales." http://articles.chicagotribune.com/2011-05-24/business/ct-biz-0525-humira-biogenerics-20110524_1_way-for-genetic-engineering-biotech-drugs-abbott-s-humira Take care, V/R, Batch
  15. Vickle, I'm not a doctor... but the burning sensation around the eye is likely cluster headache and not just the general description "neuropathic pain." Both Lyrica (pregabalin) and Neurontin (gabapentin) will have only a slight efficacy in lowering the frequency and severity of your CH... or burning pain around the eye... Both will give you a 2 to 3 martini buzz at around 300 mg/day and both will result in swollen ankles after a week to 10 days... There are other side effects that taken with the buzz and fat ankles coupled with less than desirable efficacy result in a poor risk reward ratio... i.e., bad bang for the buck... I tried both, one right after the other and stopped taking them when my ankles got so bad I needed hydrochlorothiazide, a potent diruetic and support stockings to combat the swelling. Your NHS won't cover the lab test for 25(OH)D, but there are several labs in Canada that provide either walk-in service or they'll mail you a DIY blood spot kit for the 25(OH)D lab test... no Rx needed. These tests run $50 to $65. GrassrootsHealth.com will mail you a home test kit for $65 (USD). I've had them ship test kits to a friend in Kelowna, BC recovering from breast cancer surgery... no problem. The reason I suggest this lab test is you are likely vitamin D3 deficient and that deficiency is contributing to frequency, severity and duration of your CH... and burning sensation around the eye. 25(OH)D is the vitamin D3 metabolite that's used to measure its status. The normal reference range is 75 to 250 nmol/L and anything less than 75 nmol/L is deficient. It's a safe bet you're vitamin D3 deficient... The simple course of action and least expensive way to go is pick up some 1000 IU vitamin D3 liquid softgel capsules, some 400 mg magnesium capsules, and a good mature multivitamin. Take 10,000 IU/day vitamin D3, 400 mg/day magnesium and one of the mature multivitamin tablets... If you're like most CH'ers, you'll experience a significant reduction in the frequency, severity and duration of your CH in a week or less. If that happens, you can order the complete list of supplements in the anti-inflammatory regimen from iherb.com. A CH'er in the UK has done all the legwork and posted the "How To" at the following link: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1890%20#1890 The following table represents the latest list of anti-inflammatory regimen supplements and doses: If you’re in doubt about starting this regimen read Zd10’s post in the following link: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1393027277#2 I have hundreds more posts, PMs and email just like it. BTW, this regimen works well with busting... no detox required. Take care and please keep us posted. V/R, Batch
  16. Bob, A sticky would be fantastic... Sounds like a plan (SLAP). Thanks. V/R, Batch
  17. Bob, Thanks for the kind words... I've been remiss in not posting more info on the anti-inflammatory regimen here on the boards... Lots of fascinating new data coming from the online survey of CH'ers taking this regimen to prevent their CH as well as data from some of the latest research. One of the more important topics deals with allergic reactions to pollen, mold and pollutants and how they tend to increase the frequency, severity and duration of our CH... The insidious nature of allergies is they tend be sub-clinical at first, i.e., no obvious symptoms so we're not aware we're affected until we experience an outbreak of CH, totally out of the blue, shaking up what had been a pleasant pain free existence. Unless there's a better location, I'll start posting the latest info on the ClusterBuster Files board in the D3 Regimen thread. Thanks again for the kind words and warm welcome back. V/R, Batch
  18. Mystina, It's been too long... I've missed you too... What a jaw dropping chain of events and horror story... I'm so glad you and your mom made it through all the uncertainties and that you're both doing much better. Shoot me an email if you can find the time... There's been a lot going on over the last four years... Hugs, V/R, Batch
  19. Tangerinearmy, ThatHurtsMyHead, CHfather, Thanks for the kind words and for pointing Emdub in my direction... We'll see what happens... Remember, when you depress the flush lever on an indoor dunny down under... water spins down the drain in the opposite direction from here in the Northern hemisphere... anything can happen... I do know that Dr. Peter Lewis is a vitamin D3 expert. As an Integrative physician, he treats the whole body to right what's wrong with diet and supplements first, before resorting to a pharmaceutical intervention... Even then, that pharmaceutical solution will have the highest level of efficacy with more than adequate medical evidence of safety. As a side note, Peter was one of the first physicians I contacted after discovering how effective vitamin D3 can be in preventing CH in 2010 and I've maintained contact since. I've attached one of his papers on Vitamin D3. I'm still horrified at the laundry list of phamceuticals Eemdub's wife has been prescribed. The number of possible adverse drug interactions is very high and they're going to do more harm than good. Take care and thanks again for the kind words. V/R, Batch Dr__Peter_J_Lewis_-_Vitamin_D3.pdf
  20. Emdub27, G'Day Mate... Sorry to be so late to the party and that your wife is having such a horrible time. I just read your posts over on CH.com. With a 25(OH)D serum concentration of 35 nmol/L, your wife is clearly vitamin D3 deficient and that deficiency is almost surely contributing to her headaches. You need to get her started on vitamin D3 repletion therapy ASAP. Call her PCP or whoever ordered the 25(OH)D lab test and discus vitamin D3 repletion therapy and the contents of this post. You need to ask for at least 70 of the 10,000 IU vitamin D3 liquid softgel capsules...(NOT VITAMIN D2, it is less effective than vitamin D3 and will interfere with vitamin D3 metabolism). Your wife is going to need to start repletion therapy with a vitamin D3 loading schedule of least 700,000 IU of vitamin D3 spread out over two weeks at 50,000 IU/day vitamin D3. If her physician gives you any push back or refuses to prescribe your wife the vitamin D3 capsules above, give Dr. Peter Lewis, MD a call at his YOUR HEALTH office in Manley (NSW). His number is 02 9977 7888. His website link follows: http://www.yourhealth.com.au/natural-medicine-alterntive-doctor-australia.php?id=43 Peter is an Integrative physician. He understands vitamin D3 deficiency and knows how to treat it. Tell Dr. Lewis your wife's 25(OH)D serum concentration, a brief recap of her headache history and the prescription medications she's presently taking. You can also tell him Pete Batcheller sent you... I realize it's a three hour drive up to Manley, so if you can't make it up to see him, ask him if he has a colleague in the Camberra area qualified to treat a vitamin D3 deficiency you can contact. If Dr Lewis can take your wife as a patient, I'm quite confident the first thing he's going to do after starting her on vitamin D repletion therapy is take her off all the crap she's presently taking... I'm not a doctor... but the list of med's she's been prescribed has likely resulted in polypharmacy... The sooner she's detox'd off of them the better. Assuming your wife's PCP goes along with vitamin D3 repletion therapy... as I indicated above, she is going to need to start a vitamin D3 loading schedule of least 700,000 IU of vitamin D3 spread out over two weeks at 50,000 IU/day vitamin D3. Your wife will also need at least 600 to 800 mg/day magnesium during the loading schedule as she is almost certainly magnesium deficient as well... Moreover, vitamin D3 at these doses consumes magnesium rapidly. Without magnesium supplements during the loading schedule, her magnesium deficiency will only get worse. I know 700,000 IU of vitamin D3 sounds like a lot... but we're talking a micronutrient measured International Units (IU). The IU is a measure of strength used for most vitamins. Accordingly, taking 50,000 IU/day vitamin D3 equates to 1250 micrograms (µg or mcg) and if you convert that to miligrams (mg) it works out to 1.25 mg/day of vitamin D3. There are several studies where adults have been given a single oral dose of 500,000 to 600,000 IU vitamin D3 with no problems noted. See the following VitaminDWiki link for an overview of vitamin D loading: http://www.vitamindwiki.com/Overview+Loading+of+vitamin+D The suggested loading schedule you should discuss with your wife's PCP follows: Day 1 - 10,000 IU vitamin D3 plus 600 mg of magnesium, 2000 mg Omega-3 fish oil, a good multivitamin tablet, and a vitamin B50 tablet. This first day of 10,000 IU of vitamin D3 is basically a test case to make sure your wife isn't allergic to vitamin D3. A vitamin D3 allergy is very rare and not a big worry but this first day's dose is still a prudent first step. Day 2 is the start of the two week vitamin D3 loading schedule. Your wife will need to take the following supplements at the doses indicated daily for the next 14 days: (Note - with the exception of the magnesium which should be split in two doses AM and PM to prevent osmotic diarrhea, all the rest of the daily supplements should be taken with the largest meal of the day... as in eat first then take the clutch of supplements.) 50,000 IU vitamin D3 (5 of the 10,000 IU vitamin D3 liquid softgel capsules) 800 mg magnesium (split the dose in half with 400 mg in the am with food and the other 400 in the PM with the largest meal of the day) Omega-3 fish oil 2000 mg (Usually two to four liquid softgel capsules depending on the strength. Check the serving size on the back label) Multivitamin - 1 tablet Vitamin B 50 - 1 tablet Schedule another lab test of your wife's 25(OH)D at the end of the 14-day loading schedule. Her PCP may want to test her total serum calcium and parathyroid hormone (PTH) at this time. This loading schedule should result in your wife experiencing a 25(OH)D response of 175 nmol/L on top of her starting value for a total of 209 nmol/L. If her 25(OH)D over shoots to a higher serum concentration there's no real worry. Most physicians who understand vitamin D3 repletion therapy won't be alarmed even if your wife's 25(OH)D serum concentration reaches 250 nmol/L... The lowest 25(OH)D serum concentration associated with vitamin D3 intoxication is 500 nmol/L... and there are some vitamin D3 experts who opine the real 25(OH)D threshold for vitamin D3 intoxication is much higher around 750 nmol/L. As soon as you get your wife started on the vitamin D3 repletion therapy, the next step is place the following list of supplements on order at iherb.com so she can start the anti-inflammatory regimen. The following table represents the latest list of anti-inflammatory regimen supplements and doses: A CH’er in the UK has found that iherb.com has everything your wife will need. See his post at the following link for details on how to order them over the Internet: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1890%20#1890 If your wife responds to this regimen like most CH'ers she should experience a significant reduction in the frequency, severity and duration of her headaches within the first five to 10 days. As soon as she is back feeling human again, have her talk with her physician about coming off all the other crap she's taking... If you’re in doubt about starting this regimen read Zd10’s post in the following link: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1393027277#2 I've left a similar post over on CH.com for you. If you've any questions pm me over at CH.com or give me a Skype call. My Skype Name is pete_Batcheller Take care, V/R, Batch
  21. Good question. What we're looking for are any present CH medications Rx or other... and medications taken for other medical conditions. This cuts several ways... It can point out any possible interactions or contraindications that work either way as well as give us an indication of any possible medical conditions that might interfere with this regimen or the body's capacity to metabolize vitamin D3 into 25(OH)D. For example, hepatic and renal insufficiencies can easily limit the body's capacity to metabolize vitamin D3 into 25(OH)D and that could limit or restrict a favorable response to the anti-inflammatory regimen. thanks again for the question. Take care, V/R, Batch
  22. Hey Bob, Please let me know if there's anything I can do to help. I've still got some contacts at NIH if you've time to drive out to Bethesda. The one of best contacts will be the Chief of Protocol. He oversees all the intermural study protocols conducted in house by the various institutes at NIH and will know who has the most grant money. If it looks like you'll have time to drive out to Bethesda ~20 minutes from downtown DC, as the trip date gets closer, I'll try to set up a meet. Take care and keep up the great work. V/R, Batch
  23. Anti-Inflammatory Regimen Survey Good people and fellow CH'ers here at ClusterBusters, the anti-inflammatory regimen containing vitamin D3 that I began posting about over a year ago at the following link, continues to prove effective as a CH preventative for many of the CH'ers who have tried it. To date, the raw data indicates an efficacy of 70% and over 25 members of this site have commented on their experience using it. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416 Rather than rely on a rough tally of responses from CH'ers who have tried this regimen any further, we now need to gather more specific information on efficacy and response times for this regimen as well as essential demographic and epidemiological information. This information is out there, and if you have used this regimen, you have it... We just need to harvest it efficiently. Please take this survey. We will use the data from this survey to generate a paper intended to gather support and the resources needed for a formal assessment of this regimen in a registered clinical study. The sooner we get the information on the safety and efficacy of this regimen in front of neurologists and headache specialists, the sooner more CH'ers all over the world will find what many of us have already experienced... the same relief from the terrible pain of our disorder. I've patterned the questionnaire at the following link after the Cluster Headache Survey that 1134 of us took in December of 2008 and PlayDoh has used his IT wizardry and webmeister skills to place this survey on-line. This survey will maintain your anonymity and guard your rights under the HIPAA Privacy Rule. No names, usernames or addresses will be captured. We will post the compiled results on both ClusterBusters and CH.com when we've collected a sufficient number of responses, then update the results when more come in. If you are a registered member of either site or a guest and you've tried the anti-inflammatory regimen, please take the time to click on the following link and take this survey. We need your results either way, good, or other, in order to have an accurate assessment of this regimen's efficacy. PlayDoh has designed this survey to let you quit at any time before you submit, then access it later where you left off, to finish the survey when time permits. I've already taken this survey... It took me less than five minutes... and I was checking all the options before I submitted... If you've not tried the anti-inflammatory regimen to prevent your CH, I've explained it in detail below. To start this survey, click on the following link: http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 If you experience problems taking this survey or want to comment about it, respond to this post. If you want to make a comment about your response to this regimen, please make it to the original post at the following link: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416 or its latest companion thread here at ClusterBusters at: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1323279255 Thank You. V/R, Batch Basic and Complete Anti-inflammatory Regimen Treatment Protocol and Dosing Guide Disclaimer: The following Anti-Inflammatory Regimen, treatment protocol and dosing guide to prevent cluster headaches are provided for information purposes only. Discuss them with your primary care physician (PCP) or neurologist whoever is most aware of your overall medical health and other prescribed medications before starting this regimen. If possible, have your PCP or neurologist schedule a lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D before starting this regimen. This is the serum level metabolite of vitamin D3. The normal reference range for 25(OH)D in the US is 30-100 ng/mL, (50-200 nmol/L in the EU, UK and elsewhere.) However, CH'ers presenting with active CH have tested as high as 43 ng/mL. Moreover, CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free tested in a range of 60 to 90 ng/mL (150 to 225 nmol/L). If you think your PCP or neurologist will have questions about this regimen, please feel free to take a printed copy of this post with you to the next appointment or email the link. Anti-Inflammatory Regimen Supplements The original or "Basic" anti-inflammatory regimen I've used for over a year consists of the three supplements shown below purchased from Costco for $35 or 20 cents a day for a five-month supply. The daily dose is two tablets/capsules of each supplement as shown below. For the CH'ers who don't have access to Costco, I've listed the complete anti-inflammatory regimen below. Most of these supplements are available at major supermarkets, health food stores, and over the Internet. Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360 mg/day, DHA 240 mg/day) Vitamin D3 *     - 10,000 IU/day Calcium **       - 500 mg/day (calcium citrate preferred) Magnesium       - 400 mg/day (magnesium citrate or magnesium gluconate) Vitamin K2 ***   - 120 mcg/day Zinc              - 10 mg/day Boron            -  1 mg/day Vitamin D3 Dosing Strategy: Studies have shown that the healthy adult processes 25(OH)D at a rate equivalent to 3,000 to 5,000 I.U. a day. As the rate at which the body metabolizes vitamin D3 from all sources into 25(OH)D can and will vary, it is entirely possible that 25(OH)D is consumed as fast or faster than it's being metabolized from vitamin D3. Under these conditions, the body may be unable to build enough 25(OH)D reserves to reach a therapeutic level sufficient to prevent CH at a vitamin D3 dose of 10,000 IU/day. Accordingly, if you don't experience a favorable response with a significant reduction in the frequency and severity of your CH or go pain free for at least 24 hours after two full weeks on the basic regimen, you may need to titrate up on the vitamin D3 dose. You do this by increasing the daily dose of vitamin D3 by 5,000 I.U. on the 15th day of using this regimen from 10,000 IU/day to a total of 15,000 IU/day. Repeat the incremental increase in vitamin D3 dosage by 5,000 I.U. every third day until the total vitamin D3 dose reaches 30,000 IU/day or you have a favorable response whichever occurs first, then remain at that dose. If you don't experience a favorable response by the time you reach a vitamin D3 dose of 30,000 IU/day, remain at this dose for one month then schedule the lab test for 25(OH)D. If your 25(OH)D level is in the range of 60 to 90 ng/mL, continue at this dose for another month then repeat the lab test for 25(OH)D. If your 25(OH)D level is [ch8805] 120 ng/mL and you still have not had a favorable response, reduce the vitamin D3 dose to 10,000 IU/day or discontinue the regimen. In addition, when the daily dose of vitamin D3 reaches 20,000 I.U., increase the total daily supplemental calcium intake to 1,000 mg/day. This may help maintain calcium homeostasis. This regimen can be taken any time of the day, but it's best taken with an 8oz glass of lemonade, limeade, orange juice or any fruit juice high in citric acid sweetened with a little honey. Honey is a natural source of Boron, which is listed as one of the "cofactors" along with magnesium, vitamin K and zinc. The Vitamin D Council indicates these cofactors help in metabolizing vitamin D3 into 25(OH)D and also aid in maintaining calcium homeostasis. The calcium citrate and citric acid also combine to form a buffer that elevates stomach gastric juices and maintains this elevated pH for up to 7 hours.1 that can help elevate arterial pH, which can aid in stimulating vasoconstriction in and around the trigeminal nerves. See the following link at the Vitamin D Council for an explanation of the vitamin D cofactors and their natural sources: http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/ Notes: (1) Medication Interactions and Contraindications:    * Reactions to vitamin D3 are very rare as skin exposed to the UVB in direct sunlight produces vitamin D3 naturally. However, if you are allergic to sunlight, do not start this regimen without contacting your PCP or neurologist first. If you experience a reaction to this regimen including and not limited to, an upset stomach for more than a day, swelling in and around the mouth or face, or an obvious allergic reaction, discontinue the entire regimen and contact your family physician.   ** If you are presently taking verapamil as a cluster headache preventative or for a heart condition, studies have shown that after repetitive dosing with verapamil, the serum half-life can be in a range from 4.5 to 12 hours. Other studies indicated calcium supplements interfere with calcium channel blockers like verapamil. Calcium gluconate is also used to treat reactions to oral verapamil. Accordingly, in order to minimize a possible interaction with calcium that may limit verapamil effectiveness, separate the verapamil and calcium doses by at least 8 hours. Discus this regimen with your PCP, neurologist, or cardiologist in order to work out an optimum dosing schedule.   *** If you are presently using blood-thinning drugs such as Warfarin or Coumadin for cluster headache or for a heart condition, vitamin K is generally contraindicated. However, studies have found vitamin K2 to be an effective stabilizer in anticoagulant therapy, proving beneficial in situations of over-anticoagulation or when the response to therapy has been variable. See your PCP, neurologist, and or cardiologist. (2) Safety: This regimen is generally quite safe and well tolerated with many potential health benefits. However, some physicians and CH'ers may be concerned about the apparent "high" dose of vitamin D3. There are several studies that have clinically proven that the skin of a fair skinned adult clad in a bathing suit without sun block and exposed to the sun's UVB at midday, can generate 10,000 I.U. vitamin D3 (cholecalciferol) in as little as 15 minutes. Researchers at GrassRootsHealth, a public health promotion organization, recently published the results of their D*action Project where 3667 people have been taking vitamin D3 and having their 25(OH)D levels tested every 6 months since 2008. Participants also fill out questionnaires with each lab test in order to capture the essential demographic and epidemiological information. See: http://www.grassrootshealth.net/ 439 of these D*action project participants reported taking vitamin D3 at doses up to and including 10,000 IU/day. 43 participants have had two or more consecutive tests for 25(OH)D while dosing on vitamin D3 at 10,000 IU/day. As you can see in the graph illustrated on the GrassrootsHealth home page shown below and used with their permission, none of the 3667 participants dosing at 10,000 IU/day or less had lab tests for 25(OH)D anywhere near the lower threshold for vitamin D3 intoxication at 200 ng/mL, (500 nmol/L). A recent study by Garland, Heaney et al titled: Vitamin D Supplement Doses and Serum 25-Hydroxyvitamin D in the Range Associated with Cancer Prevention is based on the GrassRootsHealth D*action Project data and provides further proof that long term use of vitamin D3 at doses as high as 10,000 IU/day are very safe. This study further concludes that: "Universal intake of up to 40,000 IU vitamin D per day is unlikely to result in vitamin D toxicity." (3) Efficacy and Response Time: 70 out of the 100 CH'ers (both episodic and chronic), who have tried this regimen over the last year have had a significant reduction in the frequency and severity of their CH and better than 90% of them have gone pain free. Typical response times to this regimen range from two days to three full weeks with the majority occurring by the end of the second week. As this regimen has many other health benefits beyond being 70% effective as a cluster headache preventative, it's best to stay on it as long as possible if not for life... There have been a handful of CH'ers who took over a month to respond to this regimen and several clinical studies have shown it can take upwards of three months to elevate 25(OH)D levels from 20 ng/mL to 60 ng/mL, (50 to 150 nmol/L). Moreover, chronic CH'ers who stop taking this regimen after an extended period of use greater than six months, may experience a relapse with a resumption of CH in as little as a week. (4) Comorbidities: Some comorbid conditions may interfere with the capacity of the anti-inflammatory regimen to prevent CH. Some of these medical conditions include, but are not limited to: cardiac, thyroid, renal, hepatic, and pancreatic insufficiencies. Sub-clinical allergic reactions and sinusitis are also suspect. If you have one or more of these conditions, work with your PCP to make sure they are being treated. This may help make the anti-inflammatory regimen more effective as a CH preventative.
  24. xxx

    D3 Update

    I've never had a bad burp from the Nature Made Omega 3 Fish Oil... but others have. Must be all that good rum that's dulled my taste buds... and smokes that have done a number on my sense of smell.... If any of you find a brand with no fish taste, please let me know. Thanks. Take care, V/R, Batch
  25. What's the link to the NatGeo site movie clip?
×
×
  • Create New...