Jump to content


Advanced Members
  • Content count

  • Joined

  • Last visited

  • Days Won


Posts posted by CHfather

  1. 1 hour ago, CAClusterHead said:

    To be fair, a practicing neurologist's understanding of an ailment is only as good as the number of patients they encounter. With 0.1% rate of incidence of CH, it is no wonder they dont know the whole spectrum of treatments available.

    I would differ with this.  Once the diagnosis is made, there are plenty of resources that list the evidence-based treatments, usually in priority order.  I feel like they owe it to their patients to at least take those few minutes, particularly given the amount of suffering that CH causes.  It feels to me like a professional responsibility of being a physician -- when you don't know what you're doing, you find out or make a referral.  

    1 hour ago, CAClusterHead said:

    Any recommendations for nice strong gingery things to carry at work

    The candy that's been recommended is by Ginger People.  It is very gingery.  I think you can get crystallized ginger candies in the bulk sections of some grocery stores or health-food stores.  There are probably plenty of fully satisfactory kinds.

  2. 10 hours ago, CAClusterHead said:

    Just got some good old ginger candies for myself.

    Your ginger candies might or might not be strong enough and gingery enough to give ginger a fair test.  Strong tea is probably better, and you can add honey or other things to make it more candylike.  Fresh ginger cut up and boiled is the best tea.  Some people make it from powdered ginger, but that's a gloppy process.

    10 hours ago, CAClusterHead said:

    Surprising that my neuro hasnt even spoken about O2 tanks and we've already had a conversation about Topomax and Lithium (both of which I refused).

    Many/most docs are a lot more comfortable prescribing meds than prescribing O2.  Lithium is a ridiculous initial suggestion.  The literature is clear that lithium is not advisable except for patients who are chronic, in part because the side effects are so undesirable and in part because stopping lithium often leads to severe rebound attacks. Topamax is less ridiculous, but not a whole lot less.  I would encourage you to try to find a competent (regarding CH) neuro, which you're most likely to encounter at a headache center. Or. if your current doc is amenable to your suggestions and willing to consider your input, you could stick with him/her, because if you stay at this site you'll know as much as s/he does about CH meds, and about all s/he is good for is prescribing things you can't get for yourself. If some of the possible  pharma treatment breakthroughs occur (e.g., if Lilly's new drug, Emgality, lives up to some people's expectations), you'll need a doctor to prescribe them if you want them.  By then, you might be very effectively managing your CH with mostly-non-pharma treatments.

  3. There are a lot of apps available to doctors to look up medically-recommended treatments for conditions.  One of the commonly-used ones is called UpToDate.  In that app, it says (with citations to medical literature): "For patients with acute cluster headache, we recommend initial treatment with either 100 percent oxygen or a triptan, in agreement with national guidelines and expert consensus."  I suppose the "or" in there can throw things off, but a rational discussion of efficacy, side effects, and other factors (cost, usage limitations) would lead toward O2, or, of course, both.  The JAMA article with the O2 study is here: https://jamanetwork.com/journals/jama/fullarticle/185035As I note here, there are reasons other than efficacy that seem to hold doctors back from prescribing O2.

  4. 1 hour ago, CAClusterHead said:

    Few reasons why I'm delaying O2. 1) Hardware requirements: I feel it might be burdensome to carry an O2 tank. 2) Potential fight with insurance (although, I'm aware that the general welding variety works equally well for people 3) I have a curious 2 year old and feel a bit cautious about high pressure equipment.

    Seems like you know that O2 will give you a much faster, much safer abort, so it's very much worth doing if the obstacles are surmountable. (Also, it's completely understandable that you haven't pursued this before, given the relative infrequency of your cycles).  Not sure what you mean about "carrying" a tank.  There are big heavy ones for home use and lighter carryable ones for portable uses. If you have an O2 supplier, they'll do the bringing of the O2 tank and the setup.  It goes (or can go) on a rolling stand, if you feel like you have to move it around.  Not all insurance claims for O2 involve fighting.  I think of CA as being regulatorily enlightened, so it would be worth checking.  The two-year old . . . .hmmm . . . maybe others can comment.  Hard for me to see a potentially dangerous situation if you take normal precautions.  The valve on the tank can be turned off quite tightly, and you can secure them on a stand so there's no risk of them falling on him/her.

  5. So sorry, Freud.  That's awful.

    By any chance is the O2 in your tank pretty low (1/3 or less)?  Some people have reported that it works less well when the O2 is low.  Wish I could say more about this, but of course it's anecdotal (happens to my daughter, for example, but she uses smaller welding tanks, so I don't know whether "low" in an 80 cu ft tank might have the same effect as "low" in a bigger tank). 

  6. 1 hour ago, CAClusterHead said:

    I'm a bit reluctant to introduce O2

    Very hard for me to think of a reason for this.  

    1 hour ago, CAClusterHead said:

    Quite honestly, nothing other than triptans. And my neuro said I'm already using more than I should.


    11 hours ago, CAClusterHead said:

    rizatriptan (oral, aborts attack in 40 min)

    The oral triptan is doing virtually nothing for you.  You might be taking too much of it, but your doctor is an idiot if s/he's giving you an oral triptan and no O2.

    I'd suggest taking a look at this post.  There are some thoughts about aborting attacks when you don't have the right stuff, and (at the end) some suggestions regarding ginger, which might help you with what's going on now (even if it's not typical "shadows").  https://clusterbusters.org/forums/topic/6213-a-bunch-of-basic-non-busting-info/?tab=comments#comment-61582

    11 hours ago, CAClusterHead said:

    Also something curious I discovered. Acidic foods (even oranges and pure tomato soup) worsen my headaches.

    Thank you for this information.  I have added it to the list of triggers that is here: https://clusterbusters.org/forums/topic/4568-triggers/.  Is it possible that you're eating a lot of MSG during these periods -- that's a big trigger for many people.

  7. Doing a little more looking around on this topic, I see that that boswellia serrata oil is more commonly known as frankincense.  There are a few posts here (that you can find using the search bar) about frankincense, mostly kind of favorable.

    How nice to have such a thoughtful neuro!!

  8. Clusterwife', I hope he gets that oxygen soon, and that the D3 regimen might kick in for him.

    I recently posted a list of things that people who don't have effective medical treatments can do to try to address the pain during an attack, or try to lessen or prevent it beforehand.  That list is here: http:// https://clusterbusters.org/forums/topic/6213-a-bunch-of-basic-non-busting-info/?tab=comments#comment-61404

    I'm a supporter myself (daughter).  I have some understanding of how terrible this is for you to endure, too.  Thank you for being there for him.

  9. Clusterwife',

    You've received a lot of good input, to which I have just a little to add.  One thing is that, even though I agree with Pebbles that the doctors might be being overcautious in stopping the Trex injections at all, maybe they'd be comfortable reducing the injectable dosage. The autoinjector contains 6mg of sumatriptan. It has become clear here that most attacks can be stopped with 2mg, or at most 3mg. Many people take apart the autoinjectors so they can measure out their own doses, but your doctors are unlikely to go for that -- but sumatriptan can be obtained in vials, with syringes so the patient can measure out his own dosage, and maybe the docs would let him do it that way, at lower doses.  There is also a 4mg autoinjector.  I would observe also that if his pain is constant (it's not exactly clear to me), it could well be that he has a CH "lookalike" called hemicrania continua (HC).  There are some differences, but doctors aren't usually sophisticated in these diagnoses (and your doctors don't sound great).  HC, unlike CH, responds to a medication called Indomethacin. As I say, if the pain is pretty constant, Indomethacin might be tried.

  10. Maddie,

    You probably should start a separate thread so we can focus better on your situation.  Just click on "Start a new topic" at the top of the page.

    Dental surgery often involves the use of an anesthetic that flares up CH in many people.  That's not very helpful to know right now, after the fact, but it could help as an explanation, and a warning for the future. Xylocaine is the anesthetic that typically causes CH flareups; prilocaine doesn't.

    This is a small thing, but it might be relevant: It is sometimes true that O2 significantly loses effectiveness when the O2 in the tank gets low.  Switching to a full tank might help.  And of course it could be that 15 lpm is just not enough flow for you and you need to get a 25 lpm regulator that allows for a more aggressive breathing strategy.  I just posted a bunch of O2 info, plus some other things that might be helpful to you, at this part of the board: https://clusterbusters.org/forums/topic/6213-a-bunch-of-basic-non-busting-info/?tab=comments#comment-61404


  11. Si, maria', es radiofrecuencia en el esfenopalatino. Siento mucho que su experiencia era tan mala.  Ojala que aqui encontraras otros metodos que seran efectivos.

    My Spanish isn't as good as your English (and I have no idea how to put accent marks in the necessary places).  I hope that you'll find treatments here that help you, and I believe that you will.

  12. mark, I wish I had something valuable to add, but just a few thoughts after having read this thread:

    1. Your oxygen seems to be varying it its effectiveness. A weird thing that some people have found is that when the O2 in a tank gets low, using O2 is less effective. "Low" can mean a third of a tank left, or even more than that in some cases. If you have a full tank, I'd consider switching to that one.  Also, are you downing some caffeine as you get on the O2 -- for example, an "energy shot" such as Five-Hour Energy, or you could even try straight strong coffee.  You mentioned going up to 15 lpm -- at that flow rate, is the bag always full when you want to inhale, or are you having to wait, or to breathe more shallowly, and therefore less effectively, than you could/should be?  If so, you want to get a higher-flow regulator.  

    2. Same variability of effectiveness seems to be true of your Imitrex injections.  I'm a little confused because you talk in one recent post about Imitrex pills. You also mention that you ran out of trex.  Most people with CH can split their trex injections and still have them be effective. Given your mixed success, I can't say if this would work for you, but the info is here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

    3. If O2 and trex are generally not fully effective and high-dose verapamil didn't work, it's possible that you might have a CH "lookalike" condition, such as paroxysmal hemicrania.  That condition responds to a medicine called indomethacin but is generally not responsive to CH treatments.  There are some other headaches for which people have reported some CH-like symptoms (cervicogenic headaches, for example), and I did read once that there are some traumatic-brain-injury related headaches the look like CH but are not.

    4. Batch made some suggestions that you would want to consider: the ketogenic diet; Benadryl 25mg every four hours and at bedtime; and restarting the Vitamin B 100 complex.  Those all seem worth trying.  Batch is also big on drinking 2.5 liters of water every day. If Batch says it, I think it's worth trying. 

  13. Yep. Oral triptan is almost certain not to help.  Some people with predictable attacks seem to find that if they take them a couple of hours before an attack they can help some.

    At the least, try an energy shot, such as 5-Hour Energy, at the first sign of an attack.  For some, just a strong cup of coffee will do.  As a former med student, you will know how to look up the standard medical treatments. Oxygen is a no-side-effect godsend.  Your cycles are so short that a typical preventive probably won't help (I think).  Doing D3 year-round gives you good protection.  Maybe a course of steroids, which typically stops the pain while one is on it but doesn't end a cycle, could help to get you through most of your cycle. (I would personally be reluctant to mess with steroids or triptans any more than necessary, since anecdotally they seem to have bad long-term effects related to making cycles longer. Not to mention the just generally bad effects.) 

    Some people's CH flares up during allergy seasons.  Benadryl is recommended and helps some people quite a bit -- you can go up to 25mg 3/day and 50mg/bedtime, or what you can tolerate.  But maybe you already did this as part of the "allergy stuff" you mention.

    Misdiagnosis and mistreatment are common with CH, and sinus things are a common misdiagnosis.  I guess I would mention, however, that the primary CH pain is typically at the eye.

    There are possible effective pharma preventives expected to come out soon.  Whether they will be superior to the D3 regimen, I can't say.  I bring that up as preface to the hard fact that for most people CH doesn't get less bad with time, it gets worse.  So action now might help you later on.  This site is based on the idea of "busting" -- taking psychedelics to prevent and/or stop cycles.  If you're interested in exploring that more, look at Dallas Denny's post in the ClusterBuster Files section for links to information.



  14. jt,

    How long do your attacks last?  How long have you had CH? 

    Do you use nothing at all to stop them -- no energy shot/drink or caffeine, no oxygen, no triptans?  And aside from what you have listed, no other preventive(s)?

    9 minutes ago, jtmochel said:

    It seems like I would be a pretty good candidate for vitamin D?

    Virtually everyone is a good candidate for the D3 regimen (the whole thing: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708).  It seems to be good for you no matter what (don't sue me if that somehow turns out not to be true). 

  15. 2 hours ago, Pebblesthecorgi said:

    I just don't want folks to become discouraged if they get a 6-12 lpm valve and not try it.

    I agree that this is very important, and appreciate your making this point.  My anecdotal observation suggests that particularly for people using O2 for the first time, "lower" flow rates often work out okay.  

    14 hours ago, Pebblesthecorgi said:

    if you look at the studies providing the evidence for giving O2 therapy evidence of efficacy the flow rates used were 6-12 lpm.

    I don't know about 6-12 lpm, but the major study by Goadsby et al (double-blind, placebo, etc.) used only 12 lpm.  And the results of that were important and good, but "only" 78% of the participants were pain-free after 15 minutes.  I might have severe confirmation bias, but I think that's a lower percentage than we see with higher flows.  There's nothing in that study about speed to abort below 15 min, so we don't know whether higher flow rates are faster, but again my possibly bias-infected observations say they are.  Is there some kind of cart-and-horse thing here, where higher flow rates don't just support the more effective breathing that you suggest but actually induce it?  No idea, and as you say, if the bag is full when you're ready to inhale using effective breathing techniques, then you have a proper flow rate.

    2 hours ago, Pebblesthecorgi said:

    blowing off CO2 likely produces the effect we want more than having the O2 running through our arteries

    Is this related to the general presumption (in the absence of a definitive explanation for the effectiveness of O2) that O2 works by dilating blood vessels? Or is "dilating blood vessels" just some kind of conventional wisdom that is widely stated without any foundation?  Does expelling CO2 dilate blood vessels, or are you suggesting that it affects CH in another way?  Why the heck can't it be figured out why O2 works?  Why did Kudrow think it would work?  These are just curiosities I have -- I'm not challenging you at all, just wondering.

  16. 20 hours ago, zgreek said:

    Hey bb1283, I purchased a demand valve last year after the CB Conf., on the recommendation of another clusterhead. It works really well, and saves a lot of O2.

    Thanks, zgreek,

    Was there anything special involved in setting this up?  For example, it doesn't seem to come with a mask -- does a regular NRB or ClusterO2 mask fit on it??  

  17. 3 minutes ago, VocTeacher said:

    will the o2 machine work as good as the bottles so you wouldn't need delivery's? 

    If by "O2 machine" you mean a concentrator that makes O2 from room air, the answer is generally no, it won't work as well, for two reasons: (1) there is a some room air in what it creates, so you are not getting O2 that is as "pure" as what you get from a tank, and that seems to affect the speed of aborts, and (2) I suppose there must be concentrators that go up to 25lpm, but most of them don't, so you probably wouldn't get a best-quality abort. 

  18. Just something to think about regarding the M tank (large tank) regulator. . . . The one FunTimes thoughtfully linked to is a medical O2 regulator. A welding regulator will work fine with that tank, and it has the advantage of potentially going higher than 25 lpm should you be someone who will benefit from that, and it's likely to be less expensive, like this one: https://www.amazon.com/Yaetek-Regulator-Cutting-0-200PSI-0-4000PSI/dp/B073P1C18S/ref=sr_1_2_sspa?keywords=540+CGA+oxygen+regulator&qid=1554386813&s=gateway&sr=8-2-spons&psc=1    Disadvantage of the welding reg is that it does not have LPM settings as the O2 reg has, so you have to get where you want to be by feel.  I don't think that's a very big deal, but it is a difference. The other thing is that not all welding regs come with the barbed fitting you can see on the one at the link I just gave. The barbed fitting is what is wanted for connecting the mask tubing. There are fixes for the absence of that fitting, but it's best to be sure you're getting one with that adapter.