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Posts posted by CHfather

  1. Here is a link to the D3 regimen, which you should seriously consider starting right away: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

    Your doctor is, like so many, either stupid, lazy, or uncaring. Or all of the above. All s/he had to do was look up the standard treatments for CH and see that injectable sumatriptan and O2 are the recommended abortives.  Did you get no preventive?  Verapamil is usually the one given.  Also, a course of steroids can sometimes stop the pain for a while as the preventives kick in.  My daughter (the person in my family with CH) had a bad doctor, and she called around to walk-in clinics to ask whether they would prescribe injectable triptans (Imitrex) and O2 for CH. Found one, and got the prescriptions she needed. She did have a letter from a neurologist saying she had CH, so she didn't have to go through a diagnosis process, but triptans and oxygen aren't "drug-seeking behavior," so it might not have been that hard to have her diagnosis trusted.

    You could set up your own O2 system in a couple of days using welding oxygen, as a significant percentage of people with CH do.  See the file in the ClusterBusters Files section called "Notes on Welding Oxygen."  As Moxie has suggested, there are a lot of potentially valuable things to read in that section.  Pharma things can be okay to get you through a cycle, but busting, O2, and D3 are a lot less toxic.

    (My daughter found, very interestingly, that she had been overusing energy shots, which seemed to be making this worse after having worked well for a long time, and got good aborts with just strong coffee.)

    Other possible helps for aborting.  Breathe cold air from an air conditioning vent.  Stand in a tub with water as hot as you can bear.  Take Benadryl (3 times at 25mg during the day and 50mg at night, or whatever you can handle).  Wish I could think of more.


  2.  Medicare doesn't cover O2 for people with CH.  No government program does.  It's an outrage.  Don't know if your supplemental will pick it up.   Welding O2 works.  https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

    Just one note that doesn't seem to apply to your situation but might: Some people find that when the O2 in their tank gets low, it is less effective (or even ineffective) at stopping attacks.  "Low" can vary from maybe a quarter of a tank up to as much as half a tank in some cases.

  3. Completely agree with THMH's conclusions.  However, rebounds have been noted in the past, particularly among people who did not have optimized O2 systems:. Kudrow (the father of oxygen therapy) said 25% of his patients had rebound attacks. https://www.ncbi.nlm.nih.gov/pubmed/21700644.  So, if you're experiencing actual rebounds and staying on the O2 longer doesn't reduce or eliminate them, then you might want to look at your system: at least 25 lpm, right mask, breathing strategy.  

  4. jh, I feel like a very small number of people have complained about a rebound effect from O2.  It is definitely not a common thing.  Many people find that if they stay on the O2 for 5-10 minutes after an attack has been aborted, it seems to prevent subsequent attacks. It's kind of annoying to do that when you just want to go back to sleep, but it does help many people.  

    I don't think that anyone believes that using O2 extends cycles, but again, there might be a few people who think that.

  5. Generally, verap ER is considered to be less effective for CH than the immediate release type. I have looked for medical citations about that (I know I've seen one), but it is "common wisdom" here, often discussed.  So I'd urge you to give that a try.  Looking around the internet, it seems that there are online pharmacies selling verap er at increased prices because of the shortage: e.g., https://www.healthwarehouse.com/verapamil-240mg-er-capsules.html

  6. You can't get medical O2 without a prescription.  But as the Boatman said to the Eggman, welding O2 is an alternative that many use, and no prescriptions are required to set up a welding-O2-based system.  Info here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/.  I know many people who use welding O2, and who prefer to use it for many reasons.  But I would at least follow up on your doctor's offer and see where it leads, unless you are certain that in fact there are no oxygen suppliers to service you.

  7. EggMan, you need to do the whole D3 regimen.  Read this: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

    You don't have oxygen???  You really should.  The more you use triptans, the more it makes your attacks worse and is likely to extend your cycle, not to mention just being bad for you.  At least, consider splitting your injections if you aren't already: https://clusterbusters.org/forums/topic/2446-extending-imitrex/  Verap and Topamax aren't great for you, either. If you do the D3 regimen right, you will probably be able to stop taking them. 

  8. Gail',

    Batch is very insistent that if the full D3 regimen is followed strictly, there are no calcium-related issues. I can see why you might not want to test that regimen again, but if you do, you can and should contact Batch directly for more information. (Open the "envelope" icon at the top of the page and type Batch in the "To" line.)

    This file discusses welding O2 in some detail: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/  

  9. Have you looked at this?   Started by a fellow with CH, who persisted here for quite a while but didn't get much traction, and who still is persisting (I mean that positively -- God bless all those who persist in search of better treatment).  He has a Facebook group, too.  This tracks a lot of things, as I understand it, so maybe it's too much for what you're looking for.

  10. What Freud says is basically correct -- as many people have learned the hard way, having work done on your teeth is very, very, very unlikely to help your CH.  Serious tooth work (extractions, root canals) have indeed set off CH in a bad way for some people.  Dealing with a cavity probably isn't at that level.

    However, the anesthetic used by dentists while treating a cavity or doing other tooth work has been shown to cause attacks for many people.  Anesthetics containing epinephrine (such as Xylocaine) have been identified by some people as triggers. Ask your dentist to use something else: Prilocaine seems not to cause bad effects. Some people find that nitrous oxide ("laughing gas") is okay as an anesthetic (I remember someone here actually trying to get hold of some as an abortive), but some people have said it's a trigger for them. 

    I think you dentist's office is likely to have O2 on hand (I've noticed tanks in my dentist's office). You might check into this (do they have it; tank size; flow rate; mask type) or bring your own O2 setup if you have a portable-size tank.

  11. Thanks, you two.

    FWIW, if I just copy the URL and then go to the chain link icon, I can then paste it into both boxes and it's all good.  No clipboard intermediation required.   I know I could also type text into one of the boxes, but I like my links here to be more in your face than that.

  12. Monica, try sending a PM to 1961mom.  She's in PDX, or maybe Eugene.  She's a great CH advocate.  Hasn't been at this site in quite a few years, but is still very active on Facebook.  I'm not comfortable posting her actual name here, because that would defeat the purpose of anonymity, but if she doesn't respond to your PM promptly, let me know and I'll try to give you more info by PM.

    To send a PM, click on the envelope icon that you see when you scroll to the top of a page, then click on "Compose New," and type 1961mom into the "To" line.  It might help a tiny bit if you tell her that CHfather suggested you should contact her.  I'll bet she knows other people nearby to you.

    I lived in PDX for a few years.  My favorite place to live in the country (I've lived in 8 different states).  Sorry that you're suffering so much now.

    Also, please -- as Freud suggested -- tell as more about how you are treating your CH.  We might have some suggestions.


  13. I like to include links in my posts whenever it's useful. I find that at this site -- unlike any other sites I use -- I have to go through the process twice each time. Go to the link, copy it, go back to my message here, click paste. Nothing happens. Repeat the process and the link appears.  If this is just something I'm experiencing, okay; if it's a fixable system issue, can it be dealt with?

  14. I'd suggest that you might as well get a welding regulator, which will go to 25 lpm and above.  The small issue is that it doesn't have any actual lpm settings, so you have to feel your way to the flow rate you want.  This is a very small issue. Maybe the $20 one at Amazon will work, but I guess I'd consider this one: https://www.amazon.com/Oxygen-Regulator-Harris-Large-Cutting/dp/B00WH3Q5N4/ref=sr_1_15?ie=UTF8&qid=1549467482&sr=8-15&keywords=oxygen+regulator+welding    A small issue that can become a bit of a hassle is that you want one with a barbed fitting like the one in this photo to attack your mask tube to.  Some don't provide that.  You can buy an adapter at a hardware store or online if you get a reg without it.

  15. My daughter has been using 5-Hour Energies with good success for aborting (along with O2) for many years.  Sometimes her attacks break through and last a long time (couple of hours), and she often uses more than one 5-Hour Energy.  That many 5-Hour Energies, as many as four or five a day some days, makes her feel pretty crappy.  About a week ago she just couldn't take another 5-Hour, so she went with some coffee she had sitting around. Got a very fast abort with it and O2. Since then, she's been using coffee and consistently aborting pretty quickly (~10 minutes), and her gut feels 100% better.  I suppose it's possible that like other meds, too much of whatever's in energy shots might turn out to be counterproductive.  (Or, as you all know, it could be any number of other things. For example, she was taking hemp oil for the CBD right about until the time she switched to coffee; so maybe the oil/CBD was making things worse instead of better.) 

    She doesn't use triptans or any preventive except D3.

    She's also been drinking ginger tea every day for about a week.  Maybe that has something to do with it.  

  16. https://www.docguide.com/sphenopalatine-neuralgia-independent-neuralgia-entity-pooled-analysis-case-series-and-literature-rev?tsid=5

    "The clinical characteristics of SN [sphenopalatine neuralgia] might mimic cluster headache with the exception of cluster pattern and treatment response to oxygen. The typical duration of pain episodes in SN was several hours to several days; and in some cases, pain was persistent."

  17. These are the first published results that I have seen from the big questionnaire-based study that Larry Schor and others carried out, which many people here contributed to.  Nothing particularly shocking to us, but very important that it's out in the medical community.  Thank you, Larry and others!!!!