Jump to content
ClusterBusters

CHfather

Advanced Members
  • Content count

    5,020
  • Joined

  • Last visited

  • Days Won

    190

Posts posted by CHfather


  1. I understand why you might feel like you're at wit's end.  This sounds really awful.  Not a doctor here, but it doesn't really sound much like cluster headache.  Among other things, CH is not a 24/7 thing, and the pain tends to be most intense around an eye, and they can be brought on by stress or exertion but also have a life of their own. And they're virtually never helped by an NSAID like Toradol.  There's a condition called cervicogenic headache (originating in the neck) that of course does seem to match up, although maybe the MRI etc. ruled that out.  https://www.medicalnewstoday.com/articles/324108.php  Hemicrania continua (HC) is another possibility, since it is 24/7, but again the symptoms and causes don't really seem to fit.  The Indocin is probably meant to treat a hemocrania as a possible cause, but that's quite a low dose.  Maybe the doc is being cautious and will increase the dose.  (Many people get significant stomach distress from Indo, so it's often prescribed with something to protect the stomach lining.)  Indo is essentially a stronger version of Toradol.  https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf   The verapamil dose is also low for CH, but again, it's good medical practice to start low, monitor, and increase (people with CH can sometimes need 960mg/day or even more).  (Anti-inflammatories like Toradol and Indomethacin might also be prescribed for cervicogenic headache, and of course the steroid injection is for anti-inflammatory purposes.)

    Of course, if O2 might have helped in the ER, and if the doc thinks you might have CH, then O2 is worth trying and should be prescribed.  Prednisone is also sometimes prescribed as a temporary treatment for CH, and it seems to me that it might also be tried, since it's an anti-inflammatory.

    I apologize for being picky here, but while "cluster migraine" is a term that has been used by doctors and lay people, it's nearly meaningless as a medical term and has been pretty much abandoned.  A person either has CH or has migraines (and some people have both), but they don't have "cluster migraines" unless they have symptoms of both at the same time enough that the diagnosis is too blurry to make.  That's very, very rare.

     


  2. FWIW, that recent big study of people with CH (more than 2500 respondents) asked people to rate the pain of conditions they had experienced. I can only paste in the data here. Column 1 is the "minimum" rating on a 1-10 scale (not sure what that really means here), 2 is the maximum, 3 is the average.  I think one reason I can relate a little to the CH experience is that I had pancreatitis (second-highest average rating after CH; ahead of childbirth) of unknown origin for several years (one long bout and then frequent shorter ones).  It was agonizing, and no doctor could figure out what was causing it or what to do about it.  Finally I correctly self-diagnosed the cause: MSG!  So, some similarities as I say to the CH experience, but still nothing like the pain level.  (This self-diagnosis (which was accurate) is one reason why I'm adamant about asking people whether MSG might be some kind of trigger for their CH attacks, and why I compiled the "triggers" doc in the CB Files.)

    Cluster Headache attacks

    0.00

    10.00

    9.58

    Child birth

    0.00

    10.00

    7.21

    Migraine

    0.00

    10.00

    5.61

    Shingles

    0.00

    9.40

    4.59

    Broken Bones

    0.00

    10.00

    5.23

    Heart Attack

    0.90

    10.00

    5.07

    Herniated Disk (i.e. slipped disk)

    0.00

    10.00

    6.16

    Arthritis

    0.00

    10.00

    4.04

    Sciatica

    0.00

    10.00

    5.10

    Kidney Stones

    0.00

    10.00

    6.87

    Gall Stones

    0.00

    10.00

    6.30

    Pancreatitis

    4.00

    10.00

    7.45

    Fibromyalgia

    0.00

    10.00

    5.64

    Spinal Tap

    0.00

    10.00

    4.61

    Gunshot wound

    1.00

    9.00

    5.89

    Stab wound

    0.00

    9.00

    4.59

    Biopsy (Kidney, Spleen, Liver, Bone Marrow or other major organ)

    0.10

    10.00

    4.67

     


  3. This isn't completely responsive to the previous posts -- just thoughts on the general topics.

    The rationale for not discussing busting at the general board has been to protect the posters, since search engines find things on the (open) General Board but don't find things on the closed boards. From some quick searching I did this morning, that still seems to be true, though maybe less so than it was at one time.  (Incidentally, for those who want general anonymity, I'd recommend not using a username here that you use elsewhere.)  Also, in a quick search using [mushrooms cluster headache], CB shows up on the first page -- it's a link to a subtab under "Cluster Headache" at the CB home page. When I use [seeds cluster headache] and [lsd cluster headache], the results are similar -- a page from that same subtab is among the first things that come up.  I don't know enough about SEO to know whether more could be done to attract people with CH looking for general treatment options.

    The core files about busting -- the numbered files created by the great tommyd quite a few years ago -- still have good information, but they're outdated enough in some regards (dosage and blockers, for example) that you wouldn't really want people acting on it without checking in first. Until we have something up to date, I don't know what people would be referred to. The basic busting rules are extremely simple, but the nuance is a little tricky.  (Interestingly to me, there's no discussion in tommyd's materials about slapbacks: I wonder if that hadn't been recognized then.)  Growing is a different question, and I don't really follow posts about that subject very carefully, but it seems like the most important help in that regard is also in the nuance, not the basics.

    As Miz' suggests, when I first came here, in 2009, I was in a complete panic. There was a lot less to wade through then, but it still felt like too much! At the same time, TBH, there were a lot more people willing to do a lot of hand-holding (first-generation pioneers whose own lives/sanity had been saved and who were not just willing but anxious to pay it forward).  I definitely think, as I have said elsewhere, that we need a "Read This First" section, but I'm not sure, as I have also said, how much difference it would make.


  4. there are stands, too, that hold multiple tanks.  

    and i'm gonna say with great confidence that a full m-size welding tank (let's say 120 cu ft) weighs a whole lot more than 32 pounds.  more like twice that, i'd bet.  here's info for a 40 cu ft empty welding tank (30 lbs):  https://www.amazon.com/Steel-Oxygen-Cylinder-CGA540-Valve/dp/B01E2T4V2W/ref=pd_sbs_469_22?_encoding=UTF8&pd_rd_i=B01E2T4V2W&pd_rd_r=ead8bfb9-6d2d-11e9-a9d7-63c732323a12&pd_rd_w=omtpf&pd_rd_wg=f455F&pf_rd_p=588939de-d3f8-42f1-a3d8-d556eae5797d&pf_rd_r=5RY00T8K50PYV2B5MX1S&psc=1&refRID=5RY00T8K50PYV2B5MX1S#productDetails


  5. There are small studies of sodium oxybate for CH.  As I understand it, it works by affecting sleep patterns (it's described in one place as being like "sedative hypnotics with significant central nervous system depressant action").  https://www.ncbi.nlm.nih.gov/pubmed/21613599  I see that a clinical trial was supposed to take place in 2015, but doesn't seem to have gone forward.  I don't see much about it since 2011.  You could google "sodium oxybate" "cluster headache".  There are some old threads about it at this board (put "sodium oxybate" (in quotes) into the search bar at the top of the page).  I'd imagine you're likely to find more about it by searching at clusterheadaches.com. 


  6. Miza', I'm not sure you really need that expensive of a regulator.  There are a bunch at amazon that already come with the adapter (or at least it appears that way from the pictures).  This one, for example, makes sense to me: https://www.amazon.com/PSI-KING-Welding-Oxygen-Regulator/dp/B01DAYCJWO/ref=sr_1_5?crid=2DOJUIMBLZXIH&keywords=welding+oxygen+regulator&qid=1556763640&s=industrial&sprefix=welding+oxygen+%2Cindustrial%2C156&sr=1-5.  I also feel very confident that the ClusterO2 Kit tubing is standard size and will fit on that adapter.  But you might want to be sure this is confirmed by someone else.  If you are going to get the regulator you mentioned, it does look like that Dixon adapter will be fine.  Less expensive plastic ones are available at amazon and at many hardware stores.

    As for the syringes, someone once posted this here: "1ml "insulin" syringes with thin 33-gauge needles work great.  Don't let your doc or pharmacist try to convince you that you need a larger gauge for "draw up.""  That's the only thing I remember seeing about syringe size, and I don't know anything about your other question regarding using a vial more than once.  A lot of people get aborts from 2ml.

    Suggest you also consider getting a smaller O2 tank for portability. 40 or 60 cu ft.  And you might want some kind of rolling stand for that big tank.


  7. 12 minutes ago, Rod H said:

    I had high hopes for masturbation. I must be doing it wrong.

    Reminds me of Woody Allen's joke, "Sex isn't dirty, unless you're doing it right."

    As I recall, one or two posters have suggested that not actually completing the act is the secret to stopping an attack.  So actually doing it "wrong" might in fact be the secret to doing it "right."  (This might also be within the posted materials, but I'm not going to look.) 


  8. LazyG', I have a (pinned) post over in the ClusterBuster Files section about "non-busting" topics related to CH.  I'd suggest you look at that for a sense of the landscape.  Denny's post in that same section (also pinned) will lead you to info about busting.


  9. There are some threads here about Emgality.  Put it in the search bar (top right of the page) and you'll see them.  Emgality is only expected to work for people with episodic CH, not chronic, but from your description, you might not meet the specific definition of chronic.

    It's not likely that O2 ended your cycle.  Doesn't really do that (but since CH is pretty different for everyone, I wouldn't state that as a certainty).  

    Check out the D3 regimen; it has helped hundreds: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 


  10. Thanks to LazyGrind, we can now add pooping to the list of "treatments," if not cures.  Like you say, j'c', who knows (except that many of them have been tried, with mixed success). 


  11. I deleted this post, since I stupidly posted it before looking at the original post.  I had just mentioned that the guy who posted the "urine" thread was one of the pioneers of busting.  I shouldn't be in such a rush. BoF's post below is responding to my earlier, now deleted/revised post.  Sorry.


  12. 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.


  13. 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.


  14. 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.


  15. 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.


  16. 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). 

×