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Posts posted by CHfather

  1. 4 hours ago, glo said:

    They do work but he has 5-6 per day and we can't get enough shots.

    Is he breaking open the injectors to get multiple shots from each?  That still won't cover 5-6 attacks per day, but properly set up oxygen will deal with many/most/all of those, so the Trex is just needed for breakthrough attacks.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/   Or vials and syringes, as Pebbles' mentioned.


    4 hours ago, glo said:

    He did two courses of prednisone, has tried Depakote, Verapmil

    Verapamil is a good example of what I was saying . . . One form (immediate release) works better than another (extended release), but most doctors don't know that.  And the typical dosage required to prevent attacks is often far higher than most doctors prescribe. So it is concluded in many cases, "Verapamil doesn't work for me," when in fact it never got a test with a real possibility of working.  Same for prednisone. We see person after person here who gets doses too low (such as the standard "dose pack"), and/or time periods too short, in contrast to what is known to be needed for prednisone to work for CH.

    I'm with Pebbles' and your husband that these aren't great options in any event; I was just saying that many, or even most, people with CH haver not had proper prescribing, so they don't know whether they work for them or not.  Properly prescribed, they usually do.  


    • Like 2
  2. 3 hours ago, glo said:

    He's tried every med

    Nah, he hasn't.  For example, if Imitrex (sumatriptan) injections don't work for him, then he doesn't have CH.  The thing is that many meds are prescribed wrong, so people try them and think they have tried everything, but it's quite likely that most of those trials have been meaningless because the dosage was wrong, the type of medicine was wrong, etc.  

    The range of D levels associated with effectiveness against CH is very broad.  If he's in the range but D3 is not working, it might only mean that to work for him, he has to be at or near the top of the range.

    Nice advice from drewbie.  Very glad that you'll be getting a proper O2 setup and using caffeine or energy shots.  That should keep him from having to run outside into the cold. I would consider adding Benadryl (one standard pill 4 times a day, or as tolerated) or Quercetin (not sure what dosage is recommended: you can put quercetin in the search bar at the top right of the page to read more).  I would try to get a prescription for some form of triptan.  The nasal spray might be worth trying first.  He could consider a course of prednisone, which is likely to stop the pain for at least a few days, maybe while he gets his D levels higher.  And there's busting, which is the reason this site exists -- click on the blue "New Users ..." banner near the top of each page.

    It's possible that something in here might help: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

  3. The company is "...doing a lot of preclinical work to complete a package for an IND filing for sometime in the fall, for the full-blown phase two clinical trials for BOL-148.”  They have acquired a patent to make BOL without having to use LSD to make it.  That's a big deal.




    • Like 3
  4. A LOT in here, including that the company is "... doing a lot of preclinical work to complete a package for an IND filing for sometime in the fall, for the full-blown phase two clinical trials for BOL-148.”


  5. 14 hours ago, Snowflake said:

    Please excuse me if I am speculating a bit much but these to me, are worth mentioning.

    I wish I could answer any of your questions, but I can't.  You might PM Batch (whose handle here is xxx) about the cramping.  He's very receptive to questions like yours.

    Mostly, I just wanted to thank you for posting this.  Looking forward to responses about the O2 levels from the smart folks.

  6. My only comments on the great advice above are (1) I'm not sure there's great evidence that taurine is a significant factor in the effectiveness of energy drinks/energy shots. There might be such evidence, and I might have missed it.  For some people at least, plain strong coffee or energy drinks without taurine seem to work fine. I mention this because there can come a point when you get really sick of the energy beverages. (2) Triptans are very effective against CH, but not in pill form (takes too long to get into your system). The nasal spray works for many, and injectable forms work for virtually everyone. You might want this in your arsenal in case of breakthrough attacks.  (3) Busting has been an excellent preventive for many who figure out an effective dosing schedule between cycles, and the overall D3 regimen can also result in extended painfree periods. You can read about busting basics by clicking on the blue "New Users" banner at the top of every page, or at the very end of the post I'm going to link you to below. (4) Don't dawdle -- get oxygen!!!!

    This post has a bunch of info that might be helpful (busting info at the end): https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    • Like 1
  7. 4 hours ago, Pebblesthecorgi said:

    The fact is there are observational reports and many positive results posted but there remains a paucity of proof.  There are some limites scope studies underway but that is a long way from results.  So when you start tweekng a theoretical construct to "improve it" there are some foundational concerns,

    I'm having a hard time knowing what you're referring to here. The D3 regimen?  Antihistamines?  On what are there "some limited scope studies underway" -- quercetin?  The D3 regimen?  Are you saying that Batch (xxx) is inappropriately "tweaking a theoretical construct" by recommending Quercetin in place of Benadryl? 

    Maybe your final paragraph is a summary of what you are saying:

    4 hours ago, Pebblesthecorgi said:

    The reality is we know little about things like Quercetin and its effects in many situations.  Sudies are needed to better understand.  Each person has a option to try what they will but don't take it as gospel.

    I have no personal interest in this, except to re-post Batch's recommendation for those who might have missed it, but a quick internet scan shows, among other things, this statement from a 2016 published study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4808895/): "As a widespread flavonoid, quercetin is a safe dietary supplement based on its broad range of biological effects in animals," and there are in fact many other journal reports that express positive things about quercetin with no major cautions except about taking too much. I see virtually no negative comments about quercetin in reasonable doses at any of the usual sites (WebMd, Mt. Sinai, Mayo, etc.). 

    For full disclosure--again making clear that my only intention was to be sure that people who cared saw Batch's new recommendation--it does seem that Batch's recommended 3 gram daily dosage could be contrary to some recommendations, where it is commonly said that in some studies kidney damage occurred at doses greater than one gram per day.  Maybe that's what you were referring to? (Needless to say, Benadryl is not without its own risks, either.)

    • Like 1
  8. I think I'm not the only one who hadn't caught up with this change in Batch's (xxx's) recommendations for what to do about a CH flare-up.  I'm quoting this from another post of his.  For those who aren't familiar with this overall topic, I'll say again that this is recommended during a CH cycle, not as something to do when out of cycle.

    "Ditch the Benadryl (Diphenhydramine HCL) and start taking 3 grams/day Quercetin.  Quercetin is an excellent antihistamine and unlike Diphenhydramine, there's no drowsiness or time limit on dosing." 

  9. 16 hours ago, Krios239 said:

    I am not taking benadryl, won't that make me pass out? Lol I'm a bartender and there is nothing worst than a lethargic bartender but I will definitely look into that

    The recommended dosage does make a lot of people tired.  You can take smaller doses, and maybe some more at bedtime.  Overall, I'd strongly suggest PMing Batch, whose handle here is now xxx.  Click on the envelope icon at the top right of the page and put xxx in the To line.

    16 hours ago, Krios239 said:

    I am taking the 10MG prednisone dose pack which had worked in the past for me

    Recommended high dose for CH is 50-80mg, tapering after that.

    16 hours ago, Krios239 said:

    yes relpax is a pill that I have been taking since the beginning but they only give you 6 per prescription so it's this delicate dance on if it's worth it to take it or not

    You do better with imitrex injections or the nasal spray.  A lot more expensive, I imagine. You can split each 6mg Imitrex injector into 3 shots.

    16 hours ago, Krios239 said:

    I have experimented with a few energy drink and 5hr energy is definitely in the mix but red bull seems to be the winner for me...... we all know that amazing feeling when we can abort a shadow with just an energy drink lol.

    Hard for me to imagine why RB would work better than 5Hr, but if that's the case, so be it.  You drink an RB as you're starting on the O2, right?  Ginger is also good for shadows.  

    16 hours ago, Krios239 said:

    I have an appt with my nuro on the 5th

    Gotta say that your neuro doesn't sound great, but that might be unfair, since his/her low-level prescriptions (low flow, low pred, a triptan pill) seem to have worked in the past.

    1 hour ago, Racer1_NC said:

    Inexpensive 25lpm O2 regulator: On Amazon

    If you have a larger tank, which doesn't seem likely but maybe you'll get one from your new supplier, you'll want a different type of regulator for those tanks.  A CGA 540.  This can be an O2 regulator or a welding regulator.  That bridge can be crossed when you get there.

    RC is illegal in Florida.  Most suppliers won't ship there. eBay sellers might.

    Some of what's in here might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

  10. Good suggestions from kat'.  When you mention the "new D3 regimen," does that include Benadryl?  If not, I'd include it.  (I think the recommended dose is 25mg four times a day.)

    For some people, when an O2 tank gets low, it seems to lose effectiveness. "Low" can be 1/4 left, or maybe even more.  Higher flow rate seems to help with that (new tank is of course better).

    Is your pred dose pack a Medrol Dose Pack (the most common kind)?  Often the pred levels can be too low in that to really be helpful.

    Relpax is a pill, right?  If it is, I'm surprised that it helps you (but glad it does).

    Energy shots (such as 5-Hour Energy) have a lot more caffeine than standard energy drinks (such as Red Bull).

    You can get advice about RC seeds here, if you're interested.  Legal to buy and possess in most US states and many countries.

    • Like 2
  11. Mixed results reported here. Put Emgality into the search bar at the top right and you can see what people have said.

    I wouldn't put too much stock in what you see here, though, in terms of forming an overall opinion. It's likely that people posting here will be ones that Emgality didn't work for.

  12. Here's an unsatisfactory answer, and maybe just a temporary one until Batch or some other expert replies. 
    It depends.  Depends on what your starting D level is; depends on what level you need (since it varies); depends on whether you are "loading" with extra D3 to speed up the process; appears to even depend on what form you're taking your supplements in.  Some people have reported some positive effects in just a few days (maybe not remission, but reduced severity/frequency); others haven't seen much in a couple of weeks.  I'd say virtually everyone who sticks with it eventually gets substantial benefits.

    Batch (xx) might be able to say something more specific about this.

  13. 6 hours ago, Snowflake said:

    Then while I hold the oxygen in I can let go of the trigger and tank will stop. So it doesn't keep flowing for nothing. It will save me by 50% if the tank and therefore each tank will last longer.

    I like what you did with the valve!!!   My daughter also has one (store-bought) and she loves it, so I'm not  knocking it.

    But this is a question I have to keep asking.  If you have the proper kind of mask (a non-rebreather with a reservoir bag that holds the oxygen until you're ready to breathe it), which looks like what you have from the photo, you're not losing the O2 that comes in while you have inhaled and are holding it in -- that's the O2 that you use for your next inhale.  It's the same O2, and roughly the same amount, that you get when you pull the trigger.  You might be saving some O2, but I would say that it's far from 50%.

    I would love to be clearly corrected if I'm wrong about this. My belief is that whether you inhale from the bag or on demand, you are still using roughly the same amount of O2, except for what might be lost from some kind of leakage in the non-demand system.

    • Like 1
  14. 12 hours ago, DJ Cluster said:

    really there needs to be a Worldwide online resource that diagnosed CH patients can record their treatments into, that other patients & doctors could access (AI will surely be of help if we had all the patient data)

    A very dedicated fellow from somewhere in Europe (Belgium???) persisted with creating and testing a data-collection app, getting people to use it, and tracking the data. It's here: https://nobism.com/remind-collect-data/ 

    In addition, some very large studies, such as the one carried out by Dr. Larry Schor and others, have surveyed people with CH and created detailed profiles of treatments and perceived efficacy.  

    You can imagine the immense difficulty of getting reliable information from these gigantic efforts, given the many, many variables that need to be taken into account.  But many blessings to those who are making the effort.  

    Batch (xxx) has also tracked the impact of the D3 regimen with a fairly large group of people with CH.

    • Thanks 1
  15. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

    Such crazy crap they put people through! "It looks like CH, but because you're such and such, I won't diagnose it as CH."  The idea that to have CH you have to be a man, older, and a smoker, is nutso thinking from many years ago!  The reason women have been told they don't have CH is because women aren't diagnosed with CH because "women don't get CH." 

    Here's another file you might look at for an overview: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   Although the heading says "non-busting information," there is actually a summary at the end about busting that you should look at.

    Regarding your Imitrex, be sure to look at this.  You don't need the full 6mg (if that's what your injector contains) to stop an attack. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

    • Thanks 1
  16. Thanks for getting back to us, Jack. So many don't.  Much appreciated.

    Is this helpful at all?   "Justin Kirkland ... was recently awarded a U.S. patent for the improved synthesis of the ergoline BOL-148: useful in treating cluster headaches."  https://www.a4m.com/justin-kirkland.html#:~:text=Kirkland has earned a BS,useful in treating cluster headaches.


    I have tried to locate this Kirkland fellow, and have called a couple of places where he is said to have worked. Good as I am at googling, I can't find him. 

    As we have discussed, Drs. Halpern and Passie hold a patent related to using BOL to treat CH ("methods and kits").  https://patents.google.com/patent/US8415371B2/en

    • Like 1
  17. 2 hours ago, ch-sg said:

    Yes, the Vit D3 did wonder to the cluster headache. Thank you to CHfather for sharing this. 

    I only shared it. All credit goes to Batch (xxx) for developing it, promoting it, and being there for anyone who has wanted help with it.

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