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  1. Like
    HCH26 reacted to Hipshot in Occipital Facet Nerve Block   
    In stopping at nothing to stop my pain I have tried damn near everything and learned to never expect much relief. mushrooms have proven best but at times don't fix me. I think I'm not alone, so I keep trying anything and everything. I know that allof us keep trying; hoping for success for ourselves and the other poor souls that suffer for years.
    Continuing to try new methods to stop the pain keeps me going I suppose.
    To the point.
    I got an occipital facet nerve block a week ago and I have had only one headache since. I have been getting occipital nerve blocks on and off for years, mostly because I like the conscious sedative that my pain doc gives me prior to my shot.
    The facet block did something really magnificent. It feels like a cushion or some kind of badass lubricant was applied just to the perfect location.
    My headaches always seem to start in my neck...quickly moving to the eye and temple.  :-X
    This may well be worth some of you trying. If it can be blocked with a shot, perhaps there is a more permanent fix. Just thinking...
  2. Like
    HCH26 reacted to Batch in Question for batch   
    Hey Dana,
    The Adult 50+ Mature Multi contains most of the vitamin D3 cofewactors/conutrients.  It just doesn't have enough magnesium or any vitamin K2.  There are additional supplements that can be added if there's no response to the above supplements.  They include vitamin C as the human genome and that of all primates lost the gene for the enzyme needed to synthesize vitamin C from carbohydrates.  None of the other animals that synthesize their own vitamin C have cardiovascular disease...  That's a thinker...  Accordingly, 4 to 6 grams/day vitamin C is a good dose.  The other supplements frequently added by CHers are CoQ10 and Turmeric (Curcumin).
    Take care and please keep us posted with your response to this regimen.
    V/R, Batch
  3. Like
    HCH26 reacted to spiny in New with questions, and possibly misdiagnosed   
    I think that you have already done the most appropriate thing - find a new Neuro! I just read the Mayo Clinics' definition of Occipital Neuralgia. I don't think that your symptoms are a match for the diagnosis you received. Some Neuro's know too little about headaches. That is why they have headache specialists in Neurology. Harder to find, but much more informed.
    When I first began my adventure with CH, my hits lasted 20 minutes. Over time they increased intensity and duration and today last 2.25 hours. I am ECH. My cycles are pretty regular. They begin with one hit per night and ramp up to 4/night. So, with one hit at night for a couple of days, I pretty much know that I am going into cycle. Or if i drink a beer an get a hit, I most certainly am back in cycle.
  4. Like
    Hi Akiva,
    I am one of the UNLUCKY ones that had a terrible response to verapamil. I took it once, and within two hours I was in the most excruciating pain of my life. I am currently in the middle of my 6 week fall cycle and the first half had me going through 2 oxygen tanks a week and getting up to 8 attacks a day. About a week ago I started taking 10,000iu a day of vitamin D3, and within a few days my attacks had gone from a kip 8-9 to a kip 2-3, and went from 8 attacks a day to 3. I went 3 days without any attacks at all, and yesterday I had one that lasted all day, but it stayed around a kip 3-4 instead of 8-9. Today I am pain free and have not had any attacks. I also started drinking about 90oz of water a day. 
    Good luck, remember you're not alone.
  5. Like
    HCH26 reacted to A-Z in After Cluster Headache - Help Please!   
    Hi, Siegfried and Wes Helms.
    To Siegfried:
    Lot of thanks for useful information.
    To Wes Helms:
    Sad to hear about your Lithium story. I have not taken D3 during attacks but as a preventive med, however, in my experience D3 should be taken in less amount with gaps. Search in this regard about D3 dosage. See what suits you. Yes, i am too in planning for MMs, lets see what effect they have on my Shadows and mood.
  6. Thanks
    HCH26 got a reaction from A-Z in After Cluster Headache - Help Please!   
    I have taken lithium for over two years now, it helped me for over a year in preventing with little to no side effects. I thought I had found what worked for me. The side effects began with confusion and intense anxiety to the point of panic attacks. And eventually did nothing to prevent my current cycle. I have recently weened myself off of lithium and am hitting the D3 regimen hard. I plan on taking mm as well if after ten or fifteen days the regimen does not help me. In short, lithium may not be worth it when there are other healthier options with less side effects. PF wishes!
    Wes Helms
  7. Like
    HCH26 reacted to Freud in Lithium and D3 regimen   
    Thank you for correcting me I’ve never seen it in my searches.
  8. Like
    HCH26 reacted to Batch in FDA approval...new migraine preventive drug...   
    Thank you for the kind words.  I've been in touch with the Principal Investigator for the vitamin D3 migraine prophylaxis RCT.  He and his team are working the final manuscript for publication.  Once that's out of the way and they can find the funding, a follow-on RCT using a vitamin D3 physiological dose of 10,000 IU/day is on their list of things to do.
    There's a good reason why the mAb RCTs can't achieve better efficacy.  When you consider the site of action are neurons within the brain that produce calcitonin gene-related peptide (CGRP) and mechanism of action they espouse is neutralization of CGRP, the first step in these two processes is getting the mAb into the brain.  That's a very real problem Big Pharma has yet to solve.   The maximum opening size through the tightly packed endothelial cells forming the blood brain barrier (BBB) is a molecular mass of 400 Da (Daltons).  The mAbs have a molecular mass of 150 kDa (150,000 Da)... 375 times larger than openings through the BBB.  If the mAbs cannot pass through the BBB to enter neurons throughout the brain, neutralizing CGRP within these neurons is a non-starter.  My guess is the reduction in migraine days made possible with mAbs is due to reducing serum CGRP.
    For reference, vitamin D3 has a molecular mass of 385 Da so passes readily through the BBB and into neurons where it's hydroxylated by enzymes to 1,25(OH)2D3, the genetically active vitamin D3 metabolite.  It in turn attaches to Vitamin D Receptors (VDR) at the genetic layer initiating the genetic expression that down-regulates CGRP expression... and in the process, prevents our CH and MH.  Better living through chemistry...  and molecular biology...  That's my SWAG... and I'll stick with it until a better mechanism of action is found.
    Take care,
    V/R, Batch
  9. Thanks
    HCH26 reacted to CHfather in Lithium and D3 regimen   
    Regarding lithium and MM, it says this in the ClusterBuster Files (in "Playing Well Together"):
          >>Anecdotal reports suggest that lithium can greatly potentiate the effects of LSD or mushrooms, and that it can produce very unpleasant feelings. An examination of a number of reports suggested that lithium can either increase or decrease effects.  The combination of lithium and tryptamines may even produce episodes that seem like, and that perhaps are, epileptic seizures. If people are taking lithium for treating cluster headaches and it is not working, they may want to talk with their doctor about not taking it any more before trying mushrooms or LSD. If people are taking lithium for bipolar affective disorder, they probably should continue taking lithium, and they should avoid taking tryptamines for cluster headaches.<<
    Not everything in these older document is completely reliable, but I do believe that some others have commented over the years that this information should be kept in mind.
    I'm sure that Batch will comment on your primary question, about D3.