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  1. I questioned myself because of the same reason and did not seek medical attention during my years as an episodic clusterhead because the pain levels described did not (yet) reach those epic proportions. They hurt, a lot, but I still imagined child birth to be worse for example. In fact, I used to dismiss them thinking I must be getting a cold or something. (After my diagnosis I learned they weren't normal)The worst possible hits didn't come until I became chronic and now the pain level of my hits vary greatly. Sometimes it's merely enough to inspire a lot of teeth grinding and cursing. Sometimes it's enough to produce tears. Other times it's enough to start trashing my living room out of desperation. After speaking with dozens of neurologists and reading reports of countless of other clusterheads, I've come to realise I'm not the only one. It simply varies per person. Some only get the big hits, some only get medium hits, some get a mix. Some find it varies per cycle. My advice is not to attach to much value to the pain level.The diagnosis process for CH is far more concerned with its unique and stereotypical features (such as the rhythms in which the unilateral attacks come, the symptoms etc). You can talk to your doctor about crossing similar/alternative diagnoses off the list, if you haven't done so already.
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  2. You could try water soaking and an orange juice chaser.
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  3. 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
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