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Posts posted by CHfather

  1. It really sounds like what Freud said, hemicrania continua: https://www.ninds.nih.gov/Disorders/All-Disorders/Hemicrania-Continua-Information-Page  You'll see on this page that if it is HC, it is treatable with a medication, indomethacin (and cluster headache treatments, such as oxygen, are likely not to be effective).  It's relatively easy to test with indomethacin whether it's HC or not, though it is not beyond doctors to screw that up with not prescribing enough or not long enough.  Indomethacin is hard on the guts, so it needs to be taken with something to protect your stomach.

    You can start the D3 regimen without a blood test.  It's 99% likely that your D level is low.  I don't know whether the D3 regimen helps with hemicranias or not.

    CH is somewhat genetic, in that it can run in families, but most people who have it do not have a family history.


  2. andy', you've received great advice from several of the best advisors here, and I see from other posts that you're following up on it.  DO NOT be deterred from getting O2.  Your doctor has started you on the right path, except for surrendering much too easily regarding oxygen.

    I tried to put the various things I know into one document, and you might look through it for other info: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   That post also includes the info that is in the "New Users...Read Here First" link at the top of every page.  You might or might not be ready to consider busting now, but it will be good for you to know about it.


  3. 3 hours ago, Jeler said:

    Coffee or an energy shot at 3AM for me will not work, I'd be awake the rest of the night.

    You might be right, and I totally don't blame you for not wanting to test it. But something like 80 percent of people who drink caffeine during the night, even the very caffeine-heavy energy shots, to help treat a CH attack report that it does not keep them awake. 

  4. I have only a vague recollection of where the looking toward your feet thing came from.  I feel pretty certain it was advice that Dr. Kudrow, the discoverer of O2 therapy for CH (or at least the most early serious investigator of it), gave somewhere and was reported here by a patient of his.  But it could have been from a conference presentation by Racer or John Bebee, or perhaps from that time I was peeping through jon019's window . . . .

    I just did a little search to see if I could find my original source here at the board.  Didn't find that, but did read some posts by people who were patients of Dr. Kudrow's son, from 2013ish, in which Kudrow is telling them that timed release verapamil is no good, which feels like it's something that we are just fully accepting as valid in the last couple of years.  Or maybe it's just me that has been slow to fully accept it -- spiny and others may have been trying to get that through to me for many years now.

    (If you're wondering . . . I think I have this right.  Dr. Lee Kudrow himself had CH. His pioneering O2 studies were in the early 1980s. He's now retired.  The actress Lisa Kudrow is his daughter, and her brother, David Kudrow, is also a neurologist specializing in headaches.)

  5. Very glad to hear this, Jeff.  Do you mind saying the name of the supplier?

    I'm going to assume that you know that melatonin at night helps many with the nighttime attacks (melatonin levels are quite low in people with CH).  Starting at maybe 9mg.  

    Hopefully, you'll get your aborts down considerably below 15 minutes over time.  Some research shows that just in general aborts tend to be slower in the beginning.  You'll get a breathing rhythm that works best for you.  Recommended is big inhale, hold a couple of seconds, big exhale.  It has been written that for some reason looking down toward your feet can speed an abort.  And then there's equipment: the "ClusterO2 Kit" mask makes a nice improvement for many, and a higher-lpm regulator will also help if it allows you to use the most effective breathing technique without waiting for the bag to refill.  If you're up for it, strong coffee or an energy shot as you start the O2 almost always speeds the abort.

  6. Jeler, what is your current O2 status?  (And your overall status?)

    I had a pretty nice series of exchanges with that person at the Iowa regulatory board.  S/he seemed authentically concerned, and made whatever suggestions s/he could come up with from staff.  (The name of the person I corresponded with could be a man's or a woman's, so I don't know.)  The suggestions aren't very helpful -- try a big supplier like Airgas because they are also a wholesaler and would have larger tanks on hand; ask the prescribing doctor to specify either large tanks or a large number of small tanks; consider a concentrator.   If you've done all that and you want another step, I had the feeling that maybe that person might try to exert some influence directly with a supplier.  Just a small feeling I had.  Of course, if your problem is solved and you don't want to think about it any more, that's fine.

    I guess I would say that my interaction with that person from the board was a lot better than I had expected it to be. 

  7. FWIW, I emailed a person at the Iowa state government agency that regulates oxygen suppliers, just to find out what rules or policies they might have about adequately supplying people with CH.  Didn't give any information at all about your situation, of course.  Will let you know what I hear back.  Not optimistic, of course, but you never know. There's a list of phone numbers at their website, too: https://pharmacy.iowa.gov/contact-us/board-office-staff

    Unless one of your leads pans out quickly, I would seriously consider getting welding O2 to tide you over.  An 80 cu ft tank will give you about 3.5 times as much O2 as an E tank.  You'll need a regulator, and as has been noted, welding regulators bought at a welding supply place are typically expensive and typically don't come with a barbed adapter for mask tubing.  If there's a Harbor Freight store near you, they will likely have one, and Walmart also typically carries them, or will ship them with two-day delivery.  Amazon has a bunch, and if you're a Prime member you can also have two-day delivery (or pay to get it if you don't).  

  8. If you can't get a resolution of the tank situation in any of the ways mentioned here,  you could consider buying (or in some places possibly renting) a big tank from a welding supply place.  You'd also have to buy a regulator online, since the E-tank regulator is different from a welding O2 regulator, so the whole thing would probably set you back something like $200, but you'd know that you have O2 on hand.  Check back or at least carefully read the welding O2 file before you act.

    The mask made for people with O2 -- http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit -- is considered by many to be a very worthwhile purchase.

    Emgality in addition to verapamil and D3 regimen will confuse you about what actually helps you, but you might not care about that right now.  D3 regimen with proper initial "loading" will probably help you as much as Emgality would.



  9. 1 hour ago, Jeler said:

    O2 order is moving forward now.

    Suggest you read the whole section on oxygen here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    This is an excerpt that might be particularly relevant in the short run:    To avoid frustration, it might be wise for you to contact your O2 supplier before their first delivery to make sure you are getting the right equipment.  Many of them are not used to providing for people with CH.  You want cylinders (tanks), not a concentrator.  At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank).  Multiple versions of each tank are better.  You need some kind of stand, at least for your larger tank(s).  A rolling stand is best. You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask.  These are all things they should know to give you to treat CH, but often don’t.  When the stuff is delivered, have the delivery person set it up for you and be sure it's working. 


  10. "The percentage of patients who had a reduction of at least 50% in headache frequency at week 3 was 71% in the galcanezumab group and 53% in the placebo group."

    This might make one as curious about the power of placebo as about the efficacy of galcanezumab (Lily's CGRP drug). (Also curious about why only results for weeks 1-3 are included, since apparently it was administered again at 1 month.)

    Trial of Galcanezumab in Prevention of Episodic Cluster Headache; Goadsby P, Dodick D, Leone M, Bardos J, Oakes T, Millen B, Zhou C, Dowsett S, Aurora S, Ahn A, Yang J, Conley R, Martinez J; New England Journal of Medicine (NEJM) 381 (2), 132-141 (2019)

    BACKGROUND Episodic cluster headache is a disabling neurologic disorder that is characterized by daily headache attacks that occur over periods of weeks or months. Galcanezumab, a humanized monoclonal antibody to calcitonin gene-related peptide, may be a preventive treatment for cluster headache.

    METHODS We enrolled patients who had at least one attack every other day, at least four total attacks, and no more than eight attacks per day during a baseline assessment, as well as a history of cluster headache periods lasting at least 6 weeks, and randomly assigned them to receive galcanezumab (at a dose of 300 mg) or placebo, administered subcutaneously at baseline and at 1 month. The primary end point was the mean change from baseline in the weekly frequency of cluster headache attacks across weeks 1 through 3 after receipt of the first dose. The key secondary end point was the percentage of patients who had a reduction from baseline of at least 50% in the weekly frequency of cluster headache attacks at week 3. Safety was also assessed.

    RESULTS Recruitment was halted before the trial reached the planned sample size of 162 because too few volunteers met the eligibility criteria. Of 106 enrolled patients, 49 were randomly assigned to receive galcanezumab and 57 to receive placebo. The mean (±SD) number of cluster headache attacks per week in the baseline period was 17.8±10.1 in the galcanezumab group and 17.3±10.1 in the placebo group. The mean reduction in the weekly frequency of cluster headache attacks across weeks 1 through 3 was 8.7 attacks in the galcanezumab group, as compared with 5.2 in the placebo group (difference, 3.5 attacks per week; 95% confidence interval, 0.2 to 6.7; P = 0.04). The percentage of patients who had a reduction of at least 50% in headache frequency at week 3 was 71% in the galcanezumab group and 53% in the placebo group. There were no substantial between-group differences in the incidence of adverse events, except that 8% of the patients in the galcanezumab group had injection-site pain.

    CONCLUSIONS Galcanezumab administered subcutaneously at a dose of 300 mg once monthly reduced the weekly frequency of attacks of episodic cluster headache across weeks 1 through 3 after the initial injection, as compared with placebo. (Funded by Eli Lilly; ClinicalTrials.gov number, NCT02397473.).


  11. 3 hours ago, Jeler said:

    Yep.  Your doctor isn't very good.  Everyone is in titled the their own opinion I guess.

    The standard pharma prescriptions for CH are verapamil as a preventive and oxygen and injectable sumatriptan (or triptan nasal spray) as abortives. Prednisone is sometimes used, though a five-day course is very short. Usually, verapamil is started at the same time as the prednisone, because the prednisone can stop pain (usually temporarily) while the verapamil takes effect.  Verap effects should be monitored with ECGs. Verapamil doses should be increased every 10-14 days, but you've been 20 days with no increase (and no ECG?).  Oxygen isn't a "next step," it's a first step. Apparently you have sumatriptan tablets, which have been shown to be useless. An MRI is standard procedure.  All of those things are written up in all the standard medical references for treating CH, and your doctor followed none of them.  That's the basis for my opinion. (My daughter, who is the person in my family that has CH, was very comfortable with the fancy downtown neuro who diagnosed and treated her for many years on the basis that she had trigeminal neuralgia, which was a ridiculous diagnosis.)  (BTW, doctors don't recognize this (it's not in the literature) but it has been noted within the CH community that "immediate-release" verap seems to work better than the extended-release kind, so you might ask for this if it's not what you're getting.)

    You definitely have CH-like symptoms. OTOH, restlessness/inability to be still during an attack is actually a clinical indicator of CH, and what you describe is different from that.  Do you have these overall symptoms year-round, or do they come in cycles of some weeks or months and then go away?

    Whatever it is you have (and I'm definitely not saying that it isn't CH), you've been suffering way too much. I'm glad you found your way here.

    3 hours ago, Jeler said:

    This past week I discovered that natural stevia extract was also an instigator.

     If you haven't found your way to this list of possible triggers from the doc I linked you to before, you might take a look: https://clusterbusters.org/forums/topic/4568-triggers/   Since you get hit after dinner, some of the food things might be particularly relevant. MSG, which is in a lot of foods, is a particularly bad actor.

    You should start the D3 regimen right away.  Linked to in that doc from my previous post.  Could help you pretty quickly (10 days/two weeks or sometimes less), though it doesn't always work so fast.  Top-line immediate things you could do, in my opinion, (all listed in the linked-to doc from my previous post) are to try an energy shot (such as 5-Hour Energy) at the onset of an attack, take Benadryl 25 mg 3 or 4 times a day, and try a pretty high dose of melatonin at night since your attacks tend to be nocturnal (starting at maybe 9mg of melatonin and working up as tolerated), drink lots and lots of water, and see whether you can identify any triggers. If you do melatonin at night, don't also do the Benadryl. Some people find that sleeping more upright (for example, in a recliner or even in a chair at a table with pillows) reduces nighttime hits.

  12. 12 minutes ago, MoxieGirl said:

    The key files (the numbered ones) are probably out of order, but well worth a read if you are considering non-doctor-prescribed options. 

    Moxie is a great source of advice.  I just want to mention that the "key files" she refers to here are linked to in the "New Users...." info link that is at the top of each page in blue.  Didn't want you worrying that you might have missed some critical information.

  13. Jeler,

    You've got great advice here so far.  Plenty for getting on the right track. Some of the same information is repeated and expanded in this post, along with more detail about things that might help with the pain while you're taking care of the critical things: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    2 hours ago, Jeler said:

    I might have to search for more professional help

    Yep.  Your doctor isn't very good.  It's great that s/he diagnosed your CH at your first visit (assuming that you actually have CH*), but the prescribing . . . not so good.  You might be able to get by if that doctor will listen to what you tell him/her that s/he should be prescribing, because we can help you with that, right down to what a prescription for oxygen should say.  But if this doc resists O2, higher doses and proper administration of verapamil, and injectable sumatriptan, you need to look elsewhere fast.  (You might not need the verap in the long run as you use the D3 regimen, but that's a different matter.)

    * Given the symptoms you describe, it's possible that you have a CH "lookalike" condition.  Tell us a little more about your symptoms and when you get your "headaches."  The "lookalikes" have a straightforward treatment, a medication called indomethacin, and some people think it should be tried early after a CH diagnosis to rule out the "lookalikes," which are called hemicranias.

    20 minutes ago, Freud said:

    if you do get sumatriptan injections ask to get the 6mg/ injection auto injectors

    This is basically good advice, and it's probably what a doc would prescribe (Imitrex).  But you can get sumatriptan in vials, with syringes, to measure your own injections, and that's a lot easier than disassembling the autoinjector.  

  14. Thank you for this thoughtful response, Siegfried.  I'll just add a few notes. One is that recommended dosing for indomethacin is all over the place, between 50mg/day and 300mg/day.  And while some sources say the effects if indo can be seen pretty quickly, others say it can be a couple of weeks or more. So I can't help but wonder how many people have "tried" indomethacin but (as is also true with some CH meds like verapamil), not really had it at high enough doses for a long enough time for a fair test.  Second, I would be cautious about any data regarding hemicranias, just as we have had to be cautious about CH data.  Hemicrania wasn't recognized as a medical condition until the 1980s, and I'm going to guess that the majority of doctors don't recognize it, so it can be strongly underreported. I wonder sometimes how many cases of "intractable chronic CH" are actually misdiagnosed hemicranias.  There was a journal article in 2001 with the title "Hemicrania is not that rare." One of the authors was the great student of CH, Todd Rozen. (https://www.ncbi.nlm.nih.gov/pubmed/11577748).  Maybe current projections factor in that observation. Also, the women/men thing is highly untrustworthy in my view, because as we have seen with shifting CH "statistics" over the years, women quite often get misdiagnosed. Even though the hemicrania reports go in the opposite direction (more women than men with hemis; more men than women with CH), I just don't trust any gender-related statistics since there's no reason that I know of that there should be a prevalence in either direction, and so I tend to think it's a function of some kind of diagnostic error.

    All that said, your general principle is probably correct, and maybe people should treat things as CH unless standard CH abortives don't work for them. (On the other hand, there are some "experts" who say no harm done with first trying indomethacin so hemicrania can be ruled out.)  

  15. 35 minutes ago, Trucker said:

    Thanks everyone. Was curious if most people have the same type of pains, the teeth aches and stuff nostril?  Three different dentist said my teeth are fine but they don’t feel fine during an attack. 

    Yes. In fact, you're lucky -- a lot of people have a lot of dental work, sinus surgeries, TMJ treatment, and other useless stuff done to them before they are accurately diagnosed.  The nerve that is affected by CH covers a very large area of your face and head, and the pain tends to show up wherever the nerve goes.

  16. That's rough, Ken'.   I don't think they're sure it's CH, or they probably wouldn't have prescribed indomethacin, which doesn't treat CH but a condition that's a CH "lookalike."  

    You are getting three preventive medications and no abortive.  That's pretty weird.  Two of them, or all three of them, can make you feel like crap in various ways.  You weren't prescribed either oxygen or some kind of triptan, such as Imitrex, for stopping your attacks?  No attempt to try prednisone while the preventive cocktail takes effect?  When you say "high doses," what were the actual dosages?  (I'll bet they're not high for treating CH.)  Are they monitoring you -- both Depakote and Verapamil should be monitored in the first weeks, for different reasons.

    Get on the vitamin D3 regimen.  GET OXYGEN.  READ THIShttps://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    What are your actual symptoms?  Can't be still during an attack?  Eye red, runny?  Nose runny?  Pain where?  Pain when?  How long?  Shands has a good general reputation, but most docs suck at treating CH.