Jump to content

xxx

Advanced Members
  • Content Count

    577
  • Joined

  • Last visited

  • Days Won

    70

Everything posted by xxx

  1. Hey Sontye and Bilal, You're vitamin D3 deficient... so it's not what you're doing that's affecting your cluster headache (CH)... It's what you're not doing... i.e., You're not taking enough vitamin D3 and the vitamin D3 and cofactors and that's what is contributing to the frequency, severity and duration of your CH... See your PCP or neurologist for a lab test of your serum 25(OH)D. A dime will get you a dollar if your results don't come back under the following normal distribution curve of lab results reported by 257 CHers who took this lab test before starting the anti-inflamm
  2. Hey Coolestnurse, Did you get the lab test of your serum 25(OH)D? How much vitamin D3 are you taking? Take care, V/R, Batch
  3. Hey CoolestNurse, Welcome to Clusterbusters... Having a medical professional in our midst is always a treat... even more so when the medical professional suffers from the same headaches as the rest of us... What I would suggest is you need to see your PCP about lab tests of your serum 25(OH)D. 8 years providing information outreach on the benefits of vitamin D3, Omega-3 fish oil and the vitamin D3 cofactors has produced a wealth of data... For starters, cluster headache sufferers (CHers) and migraineurs presenting with active bouts of headache are almost always vitamin D3 deficien
  4. Hey RazorPP, I suspect you're not taking enough vitamin D3. It takes 20,000 to 25,000 IU/day vitamin D3 to keep me pain free. That works out to a serum 25(OH)D concentration of 140 ±50 ng/mL over the last 3 years... My PCP is OK with this as long as my serum calcium remains within its normal reference range... and it has. Take care, V/R, Batch
  5. Hey 50Amp, There's nothing wrong with a serum 25(OH)D at 184.5 ng/mL as long as your serum calcium remains within its normal reference range and your PTH is in the lower third of its normal reference range. My serum 25(OH)D concentration has averaged 140 ±50 ng/mL over the last 3 years and has been as high as 200 ng/mL. My serum calcium has remained within its normal reference range the entire time... The bottom line is I take as much vitamin D3 as I need to stay CH pain free but keep my PCP/GP in the loop with frequent labs for my serum 25(OH)D, calcium and PTH. As long as my ser
  6. Hey Brandylynn, Denny is spot on... without the results from a lab test of your 25(OH)D, we're shooting in the dark. I suspect your serum 25(OH)D is too low and that a few days loading at 50,000 IU/day vitamin D3 should reduce the frequency of your CH... However.. we still need to know your present serum 25(OH)D concentration in order to determine the duration of the loading dose... See your PCP for this lab test and get back to us. Take care, V/R, Batch.'
  7. Hey Peggy, There's every reason to expect the anti-inflammatory regimen will work just fine to prevent all of the trigeminal autonomic cephalgias (TAC). Be sure to ask your PCP for the 25(OH)D lab test. A Coke & Candy Bar sez you're vitamin D3 deficient. Take care, V/R, Batch
  8. Hey Lynn, Good on you for upping the vitamin D3 dose. I'd stay at 50,000 IU/day for another four days then drop back to 15,000 IU/day and see what happens. Pick up some saline nose spray and irrigate both nostrils with several sprays in each side. This might help reduce the sneezing a bit... Take care and please keep us posted. V/R, Batch
  9. Lynn, Have you increased your vitamin D3 dose to 50,000 IU/day? Take care, V/R, Batch
  10. Hey Lynn, I'd bump the vitamin D3 dose to 50,000 IU/day for another week then drop back to an initial maintenance dose of 10,000 IU/day. Make sure you're taking the Omega-3 fish oil and all the vitamin D3 cofactors: 400 mg/day magnesium, 10 mg/day zinc, 1 to 3 mg/day boron and 100 mcg vitamin K2. Magnesium is most important as the enzymatic processes that metabolize vitamin D3 to its genetically active metabolite consume magnesium at a high rate. As far as when to start oxygen therapy, any indication of an approaching CH is time to start O2. Make sure you're drinking 2.5 liter
  11. Lynn, Have you downloaded the anti-inflammatory regimen treatment protocol? I'd try stopping the Benadryl for now as it doesn't appear to have an effect on the frequency of your CH. I'd also increase the vitamin D3 loading dose to 50,000 IU/day. You've roughly 8 days remaining on the 12-Day vitamin D3 loading schedule taking 50,000 IU/day for the next 8 days. When the 8 days are up, you can drop the vitamin D3 dose to an initial maintenance dose of 10,000 IU/day. The gut plays a role in vitamin D3 so I'd start a course of probiotic and take as directed on the label until the bo
  12. Lynn, I agree with CHfather's suggestion to discontinue the Benadryl. I would also switch to the 12-Day vitamin D3 loading schedule at 50,000 IU/day. You've roughly 9 days remaining given the total amount of vitamin D3 you've already taken. Switching the vitamin D3 loading dose to 50,000 IU/day will build serum 25(OH)D much faster and that should result in a significant decrease in the frequency and severity of your CH. How long is it taking in minutes to abort your CH with oxygen therapy? Are you using the oxygen therapy breathing method I suggested by hyperventilating with room air
  13. Lynn, I'd give Benadryl (Diphenhydramine HCL) a try. A 25 mg tablet every 4 hours during the day for a few days should stop the nausea and possibly even the CH. How much vitamin D3 are you taking? Howz the head? What's the CH frequency? Take care and please keep us posted. V/R, Batch
  14. Lynn, I should have jumped into this discussion when you mentioned neck cramps. Muscle cramps anywhere in the body are a classic indication of a magnesium-calcium imbalance with too little magnesium. The enzymatic process of hydroxylating (metabolizing) vitamin D3 to its genetically active metabolite 1,25(OH)2D3 a.k.a., calcitriol, consumes magnesium rapidly. If we don't take at least 400 mg/day magnesium with vitamin D3, the problem of cramps becomes even more pronounced. I'm guessing your neck cramps are no longer a problem since starting the anti-inflammatory regimen... We hav
  15. Hey Peggy, Thank you for your service... You're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your headaches. If you can get into the VA ask for lab test of your serum 25-Hydroxy Vitamin D3, a.k.a., 25(OH)D. This is the first metabolite of vitamin D3 that's used to measure its status. Nearly all CHers with active bouts have a 25(OH)D serum concetration ≤ 40 ng/mL with a mean of 23 ng/mL. As CHers we need to keep our serum 25(OH)D up between 80 and 100 ng/mL. That will require a vitamin D3 dose of at least 10,000 IU/day.
  16. Hey Blue X 3, Welcome to Clusterbusters. We know what you've been going through and the good news is it doesn't need to be that way. You've got two effective options... Busting and Vitamin D3. The busting experts will be along shortly so I'll cover the vitamin D as you're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH. Download the anti-inflammatory CH preventative treatment protocol from the following VitaminDWiki link and take it to your PCP. When you get there, discuss starting this regimen and ask for the l
  17. Melissa, A CHer with active CH nursing a 7 month old baby... BINGO!!! You really need to be taking 10,000 IU.day vitamin D3 plus Omega-3 fish oil and all the vitamin D3 cofactors. If not, your baby needs a minimum of 400 IU/day supplemental vitamin D3. Yes... I can hear the wheels turning... Who is Batch and what are is qualifications for saying this? Good question... Although my answer may not be sufficient for you to follow the suggestion as I'm a 73 year old retired US Navy fighter pilot with a degree in Chemistry, 24 years as a CHer (chronic since 2005) and full time s
  18. Hey Melissa, We know what you're gong through... and if it is cluster headache (CH)... the good news is it doesn't need to be that way. You're likely vitamin D3 and magnesium deficient and these deficiencies are contributing to the frequency, severity and duration of your headaches. See your PCP for lab test of your serum 25(OH)D. This is the serum level metabolite of vitamin D3 that's used to measure its status. The normal reference range for this lab test is 30 to 100 ng/mL. Data from the online survey of 215 CHers taking the anti-inflammatory regimen with 10,000 IU/day vitami
  19. Hey Mac, Thanks for the feedback. 10,000 IU/day may not be enough vitamin D3 until you build your serum 25(OH)D concentration to the therapeutic level (80 to 120 ng/mL), As you're still ghosting... I'd take 50,000 IU for two to three days then bump the vitamin D3 maintenance dose to 15,000 IU/day. That will help elevate your serum 25(OH)D a little faster and also help prevent the ghosting. Be sure to drink 2.5 liters of water a day... Take care and thanks again for the feedback. V/R, Batch
  20. Hey Mac, The following chart of 25(OH)D time course response to dose of vitamin D3 tells the story... A vitamin D3 dose of 10,000 IU/day is far better than 5000 to 6000 IU/day and for some CHers like me, 15,000 to 20,000 IU/day vitamin D3 is needed for a pain free response. Take care and please keep us posted. V/R, Batch
  21. Douglass, How much vitamin D3 are you taking and did you start this regimen with the 12-Day accelerated vitamin D3 loading schedule? If not, you should be able to take 50,000 IU/day vitamin D3 for six to eight days then drop back to the maintenance dose of 10,000 IU/day for three weeks then see your PCP for labs of your 25(OH)D, total calcium and PTH. Take care and please keep us posted. V/R, Batch
  22. Hey Leo, I call my grand daughter "Fred" a.k.a. Winefred... 3. She's been bathed in maternal vitamin D3 since conception as I encouraged my daughter to start the complete anti-inflammatory regimen in 2012. I'm also familiar with the lion bit... but not with a linkage to CH... My middle name is Lyon... Your 25(OH)D serum concentration at 343 nmol/L (137 ng/mL) is fine as long as your serum calcium remains within its normal reference range and your PTH is in the lower third of its normal reference range. Be sure to talk with your PCP about getting these two lab tests at the next o
  23. They're not the same. Although the actual demand valve is the same, the high pressure hose has a different fitting that prevents it from being used on an oxygen regulator equipped with a DISS fitting. You can order an Ultraflow oxygen demand valve from bpr at the following link but you'll still need a good oxygen regulator with a single DISS fitting. http://www.bprmedical.com/ultraflow/oxygen-demand-valve?connector=9 This oxygen demand valve will run around $500 plus another $250 to $350 for a good regulator so this is a very expensive (albeit a very effective) way of aborting
  24. The name is Bundaberg... a.k.a., Bundy or Bundy OP (Over Proof) a.k.a., Rocket Fuel... A delightful Demerara Rum I get from Australia. Bundy and Coke was the drink for Americans in Australia during WW II. I float an ounce and a half on top of a perfect Mai Tai parfait. It will knock your socks off . Too much and you come down with amnesia... at least that's my excuse when She who must be obeyed, points out I've done something stupid... If things get dull, you just set it on fire... Demerara rum was first distilled from cane molasses in Guyana on the banks of the Demerara River in 1
  25. I'm dyslexic at times... particularly after too much rum... When that happens... I go with the flow... BTW I had more than my share of problems with daclizumab in an open label study at NIH... Had I known how effective vitamin D3 can be and how bad the mAbs can be... I would never have signed the study consent form.
×
×
  • Create New...