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Posts posted by CHfather

  1. Brain',

    Yes, you need some kind of a stand to hold the bigger tanks. There are stationary racks that hold them, and there are also carts (with wheels) that will stand in one place or can be moved.  I am imagining that a competent O2 supplier will provide that if they give you large tanks.  There are racks for the smaller tanks, too, and I assume one should also be provided to you if you get a smaller one or several smaller ones.  For example: https://www.globalindustrial.com/p/medical-lab/medical-equipment/oxygen-therapy-and-supplies/economy-oxygen-rack-holds-6-e-d-or-c-cylinders?trackType=4&trackPrimKey=0&trackCatKey=0&webCatKey=0&presentType=98  

  2. Freaking barbaric.  What is wrong with these people!?!  If they're actual tanks, you can buy a regulator that will go up to 25lpm.  But as you suggest, if they're small tanks, they won't last long.  Eventually you might wear down the oxygen supplier, who will tire of constantly having to replace them.  Or you can switch to using welding oxygen, as many people do.

    There was someone else on the board just today or yesterday who was prescribed amitriptyline.  It is not a first- or even second-line preventive, at least as far as I know and have read.

    You know about the D3 regimen? Your best bet for long-tern prevention.  http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

    Meanwhile, I guess you know that you ought to be looking for a different doctor, preferably at a headache center.  I just looked at the old recommended doctor list that posted here.  Sadly, none in Iowa.

  3. 3 hours ago, BrianK said:

    Does every attack result in pacing & inability to stay still or are there some where cluster sufferers can lay down?  Also, is smoking very common?  I have heard there is a high % of smokers among cluster sufferers but do not know how accurate that is.  

    The thing about the pacing, etc., is that it's true, as FunTimes said, that not everyone with CH does it, but almost all do. Things are a bit is different when there's a pretty reliable abortive like oxygen on hand, because that does calm some of the anxiety and distress (and pain) that are part of the reason behind the pacing.  But everyone who has been here who has had migraines or other severe "headache" pain and also has CH says that there's no confusing those things with CH, because CH pain is so very much worse (the exception might be forms of hemicrania, which at their worst can be at stratospheric pain levels like CH).  

    Yes, a very high percentage of people with CH smoke (and, FWIW, a very small percentage of people with CH develop lung cancer--the incidence of lung cancer would be expected to be much higher than it is among so many smokers, many of whom are pretty heavy smokers).  People with CH who quit smoking don't get relief of their symptoms (a couple of people here have said they thought maybe their symptoms got a little lighter after they quit).

  4. Brian, I'm sorry to say that I have no insight.  Too much going on here for me to perceive anything that might be helpful.  I will tell you that people don't "grow into" CH from other "headache" conditions, which seems to be something you're worried about. Yes, people with other "headache" conditions do have or develop CH, but that's like a tenth of a percent of all people with those conditions.  

    Our equivalent here to "take two aspirin and call me in the morning" is "you should probably try the D3 regimen."  I have no reason to think it would help you, except that it seems to help with quite a few conditions, and it's essentially nonharmful.  You can read about that here: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

    Maybe others will have better insight.

    Wishing you the best.

  5. Verapamil is standard preventive treatment for CH.  Usually people start pretty low and increase dosage (with heart monitoring). It usually has no effect at first, which is why people are sometimes given a course of steroids to ease the pain while the verapamil (hopefully) kicks in.  I know you said you think steroids made your condition worse, and I'm not doubting you, just saying that's the standard course.  Many people here have had relief from verapamil at high doses (using the immediate-release kind, not extended release), and many people here feel that verapamil was harmful to them in other ways.  Sometimes the dosage has to get up over 900mg/day before it becomes effective.

    Nortriptyline is a tricyclic antidepressant.  It's sometimes prescribed for tension headaches, but is not any kind of standard therapy for CH.

    I hope you get your O2 sorted out and that it helps, and that you get some clarity and appropriate treatment on Tuesday.

  6. Elrik',

    As ThatHurtsMyHead had suspected, this is the wrong mask.  Non-rebreather, as you say, is what you want.  Your oxygen supplier should have one.  A basic one is about quite inexpensive at amazon. For example: https://www.amazon.com/Dealmed-Non-Rebreather-Oxygen-Mask-Adult/dp/B079HDP62H/ref=sr_1_3_a_it?ie=UTF8&qid=1544374018&sr=8-3&keywords=nonrebreather%2Boxygen%2Bmask&th=1   

    There is probably a way to adapt your current mask, but I'm not clever enough to know what it would be.  This is a link to the mask made specifically for CH, which people have very good experiences with: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

    With a tank and a regulator that goes to 15 as yours does, you should be able to get success with the right mask.

    I know there are Omega-3 pills made for vegetarians.  It's possible that Batch has advice related to the most desirable EPA/DHA amounts and ratio.  In his post, Batch is saying that the 5,000IU/day of D3 you are/were taking is not enough to get your D level high enough, and even 10,000IU/day will take a long time. He's encouraging you to do the 50,000IU/day "loading" regimen (and to be sure you take all the other ingredients).

    Jaw pain is not uncommon with CH.

    It's slightly troubling to me that a sumatriptan injection doesn't stop an attack for you.  Maybe that happens with some people with CH, but I'm sure it's very rare.  Important information for your neurologist appointment.

  7. Concentrator is not good. The O2 it creates contains too much room air; the liters per minute settings usually do not go high enough; and they're often noisy, which is one more thing you don't need during an attack.  Your neurologist should not really be prescribing the delivery method.  I'm concerned that s/he will also prescribe cannula instead of a non-rebreather mask (or fail to specify a non-rebreather mask). (When the supplier sees a concentrator prescribed, they are likely to think unless the prescription specifies it that you are a typical COPD-type patient, and they're likely to give you cannula instead of a non-rebreather mask.)

    The prescription should read something like: "Oxygen therapy for cluster headache: 15-20 minutes at 15lpm using non-rebreather mask."  If you can get a prescription for 25 lpm, all the better.  The oxygen provider should -- but just as likely won't -- know what equipment is appropriate for CH.  You might have to educate them.  What you want is at least one large tank (an M or H tank) for home and at least one smaller tank (E tank) for portability (car/office).

    Some people get by with a concentrator, at least in the early days of their CH, but it won't match the aborts you get with a cylinder.   

  8. It's not likely to help you much to drink it before you go to sleep.   Some folks have experimented with energy shots/caffeine as a preventive without much success. Although one or two have said it works as a preventive for them, it wasn't clear to me how much they were using, how often.  

  9. When people find an energy beverage that works, they tend to stick with it, so there are people who use energy drinks such as Monster and RedBull.  The thing about energy shots such as 5-Hour Energy is that they actually contain considerably more caffeine than a RedBull and most Monster drinks, and caffeine is considered to be the primary agent, although other ingredients are also believed to help.  Having more caffeine and being much easier to drink down quickly makes the shots preferable for some people to the drinks.

  10. Hello Maria. So sorry for what you are going through.

    It's my understanding that indomethacin can take a couple of weeks to be effective.  It might not help at all if you don't have some kind of hemicrania, but I wouldn't give up on it yet.  Indomethacin can be quite hard on your digestive system -- painful or at least uncomfortable for many people, but not all. Often it is prescribed along with a medication like Nexium or Prilosec, to protect the stomach lining.  (One reason I suspected a hemicrania is that your response to the CH meds has only been partial, and that's a pattern in hemicrania.)  

    Couldn't the hospital write you a prescription for some form of sumatriptan?

    One thing that often helps people with CH is to quickly drink down an energy shot such as 5-Hour Energy as soon as an attack hits (or if you learn to feel one coming in in the moments before an attack begins).  It will often make CH attacks less severe, and sometimes abort them.  Some people find that taking melatonin at night, starting with about 9mg, helps with nighttime attacks. (I just remembered that melatonin is, or was, only available by prescription in the UK.)

    Aside from the possibility that indomethacin will help you, I don't think you are taking any CH preventive meds (I'd have to read back more carefully to be sure).  Oxygen and triptans are abortives, meant to stop an attack, but preventives, such as verapamil, are meant to keep attacks from happening. Sometimes a course of steroids is used to stop the pain (or try to stop it, usually successfully) for a while, so that the preventive can get into your system enough to take effect.  (I have no idea how any of this interacts with your thyroid condition.)  The vitamin D3 regimen is also preventive.  Doctors sometimes prescribe preventives other than verapamil, such as Topamax or gabapentin. All CH prescription meds, except oxygen, have side effects, and people have strong opinions about all of them.  Most people here find that if they can, they strongly prefer to rely on treatments that don't seem to have significant side effects, such as D3, oxygen, and "busting" (ending cycles and potentially preventing them using psychedelic substances, sometimes at levels that have no psychedelic effects).  There are also new migraine preventive meds on the market that show some promise of possibly helping people with CH.

    I guess my overall point is that there's a lot more than can be done to treat CH if that's what you have, and I'm hoping you get the best of advice and treatment at your December appointment.  To get a straightforward sense of pharmaceutical treatment options, you could google [goadsby treatment of cluster headache] (without the brackets).

    Wishing you the best and optimistic about much better times to come.  It's great that hubby is so much on your side.

  11. So sorry, 'Hubby.  I'm a supporter myself (my daughter).  I know how terrible it is to see that suffering in someone you love.  As others have said, though, it's going to get better.  

    Such great perspectives you have now received from two of the greats, Freud and Tony Only!  I'm troubled that her attack resumed, or she had a new attack, so soon after the sumatriptan injection, and by the number of attacks she is suffering every day.  I hope your neurologist will look closely at all the diagnosis options. (From what I have read you to be saying, there is no reason that she should be diagnosed yet with chronic CH -- chronic means a year of essentially uninterrupted attacks).  In our experience, you get better advice and treatment from a headache center than from a standard neurologist. 

    I say this a lot, and I'm often wrong, but I would want to be sure that the neurologist considers hemicrania continua as a possible diagnosis.  That's a condition that has many symptoms similar to CH (and similar to what your wife is experiencing), but unlike CH it is treatable with a single medication, called indomethacin.

    When they gave her the O2 in the hospital, was she breathing it through a mask (or just with those tubes that go into your nose)?  Mask is essential.

    It's my understanding that Ouch(UK) has been quite helpful to people with CH, particularly regarding getting proper oxygen promptly.  https://ouchuk.org/  I looked there for information about the Imigram/Imitrex shortage, but didn't find anything very current.  I urge you to be persistent about this (while also considering the negatives about those injections that have already been mentioned).  If she does go that route, be aware that the injectors can be opened so that she can give herself smaller doses, which are sufficient for most people with CH and not as damaging.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/   The nasal sprays do help some people, so I'm hoping it turns out to be that way for her.




  12. You can send a message directly to Batch by clicking on the envelope icon at the top right of the page and typing Batch into the To line.  I don't love these "back-channel" communications because then we don't get to see the information that might be helpful to someone else in the future, but obviously that's my problem, and you should definitely send him a message. 

  13. 45 minutes ago, FunTimes said:

    chewing fresh ginger

    Among his thoughtful and excellent suggestions, F'T' made that one about ginger.  I'd be surprised if people chew fresh ginger -- but maybe they do.  I'd love to be corrected.  I'm most familiar with suggestions for strong candies that are made from real ginger (The Ginger People make some), candied ginger (with a sugary coating), or ginger tea made from fresh ginger.  Although these are typically more recommended for shadows, there are people who have gotten some abortive benefit from them for attacks.

  14. Very sorry to read this, brs'.   The only substantive suggestions I can make are (1) to start the vitamin D3 regimen ASAP (http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708); (2) to be sure that your oxygen system is optimized (at least 25 lpm flow rate and the "ClusterO2 Kit" mask that is designed specifically for CH); (3) perhaps to try melatonin at night, starting at about 9mg and working up as needed); (4) to try Benadryl 25mg 3 times a day and 50mg at night (probably not taking both Benadryl and melatonin at night). Severe CH outbreaks seem to sometimes be associated with allergies, even if you're not aware of those allergies; and (5) try an energy shot such as 5-Hour Energy at the first sign of an attack.

    #3 - #5 seem so trivial in the face of what you are dealing with that I have been hesitant to bring them up, but it's what I can think of.  Wish I had more, and I hope others will.

    Do you think it's possible that you have developed another kind of "headache"?  It's so rare that none of the standard things are working -- Imitrex, steroids, O2, etc.  There is the CH "lookalike" condition, hemicrania, that is not usually successfully treated with those things but is responsive to the drug indomethacin.  That might be worth looking into.  There have been people here who have both CH and some form of hemicrania.

    I hope things get better for you soon, and again I'm sorry to not have more to offer.  The D3 regimen has been very effective for many people, and the fellow who formulated that regimen, Batch, is a great guy who would be completely willing to help you with doing it.

  15. Thrilling.  Good for you for hanging in so well!

    When you get the prescription and you know who the oxygen supply company will be, I strongly recommend that you call before anything is delivered to you, to be sure they understand what a CH patient needs.  Most of their customers are folks using low-flow O2 and nasal cannula, maybe from a concentrator (a machine that makes O2 out of room air), and they might try to give you some or all of those things.  Your prescription is fairly likely to specify 15 lpm and a non-rebreather mask, and those are things you want (if you can get higher lpm or even a demand valve system, that would be great, but unless they're prescribed, you probably won't get them).  The prescription probably won't specify how many tanks and what sizes.  You will want at least two tanks, at least one large one (an "M" tank or an "H" tank), and at least one smaller one for portability (most likely an E tank).  As I mentioned in a previous post, these different size tanks require different regulators.  It seems safe to assume they will know that.  As I also mentioned previously, you will want some kind of stand to hold your O2, preferable a rolling one.

    You might get by fine with the standard non-rebreather mask (you will want to modify it a little by blocking the circle of open holes there might be, and by cutting the strap so the mask falls off if you fall asleep). On some masks the circles of open holes have a gasket behind them. You don't have to mess with that.  But on many, one of the circles is just open hols.  You block it, with tape or with your thumb, so that when you inhale you aren't getting any room air.  You would be wise to order the "ClusterO2 Kit" mask, which is specifically designed for people with CH.  http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

    Finally, when they deliver it, have them set up the large tank and show you how to use it (if they know -- they might well just be delivery people).  But at least make sure it works.  When my daughter's first medical O2 was delivered, they didn't tighten the regulator or provide her with a wrench, so we had to run out and buy a large wrench before it would work properly.

  16. Sorry it's a normal-person 8.  I hope NOTHIN' was the correct diagnosis.  Wish we all hadn't learned to have so little confidence in doctors.

    No one's ever interested in my stories of why I give a low pain rating to something that's very painful.  (As you know, I don't have CH, but I've had some very severe pancreatitis, which is up there on the non-CH pain scale. Because my pancreatitis was caused by MSG, I kept getting it over and over again until I finally figured out the cause myself, many years later.)  'Nuf about me -- hope you're feeling a lot better soon.

  17. muggle, many thanks for the information.  I hope the melatonin keeps helping you.

    Of course, from what we have seen it's not at all impossible that the nurse practitioner's daughter has never been prescribed O2, either!  But you would think that with a medical professional in the family, someone has actually bothered to look something up, so it seems like there's a good chance she will be knowledgeable about O2.  If you click on "Download PDF" here -- https://jamanetwork.com/journals/jama/fullarticle/185035 -- you'll get the full O2 study, which you could print out and bring with you.  Hope it goes great!! 

  18. 3 hours ago, muggle said:

    I did try melatonin last night and had my first headache free night of sleep in over two weeks! Anyone else have good results with this?

    A lot of folks report good results.  Melatonin is low in people with CH during their cycles.  How much did you take, and, if you don't mind, what kind--chewable, under the tongue, or just swallow it?  

    You are right to ask about reusing needles. I have read -- I'm not any kind of expert on this --that they get dull quickly, so the injection can hurt a little more, and they can cause a local infection.  I have never heard of either of those things happening with one or two re-uses of the Trex needles.  I have also read that it is not wise to clean the needle with alcohol (as one might be inclined to do) because it removes the silicon coating that helps the needle slide in smoothly.  The tradeoff seems to be between the apparently small risks of reusing needles and the effects of repeatedly injecting 3 or 4 unneeded mg of Trex (not to mention the cost).  

  19. Just one more note about welding O2, and then a couple of other things.  Welding tanks come in many different sizes, always (at least as far as I know) measured in cubic feet of O2.  The bigger the tank you can handle, the better off you will be, but they get pretty unwieldy above 80 cu ft.  So what you get depends in part on what you are able to lug.  (You have to bring them in to get them refilled.)  Denny has a giant one (welding tank, I'm talking about :)), which I think is about 250 cu. ft.  120 cu ft is large and heavy, weighing at least 50 pounds when it's full.  In any event, you will want to get a rolling stand, but that of course is essential if you are getting a big tank.  We (my daughter and I) have found that having two 60 cu ft tanks was most manageable for us. Over time, we have added more tanks until we have a pretty large collection of them.  Remember that you also want one or two smaller tanks (20 or 40 cu ft) for portability (to have in the car, for example).

    You'll also need to buy a regulator and a mask.  Unlike medical tanks, where smaller tanks use one type of regulator and larger tanks use another type, all welding/industrial tanks use a CGA-540 regulator.  [Gosh, I just realized that I posted a whole thing about all this over in the ClusterBuster Files section.  I'm just going to link you to that.  It has everything I was just going to say.  https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/?tab=comments#comment-56717]

    In addition:

    You should be doing the vitamin D3 regimen, which you can read about here: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

    You can split your sumatriptan injections. Most people don't need more than 2mg, 3mg at most, and the standard autoinjector is 6mg.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/


  20. 31 minutes ago, Collin said:

    Ive taken rizatriptan ODT but it didn't have much effect, but than again I've only taken it twice. 

    In general, oral medications are too slow-acting to affect CH, so injections or nasal sprays are preferred.  Since your pain is constant, I don't know what to say about what effect might have been expected.  Some easing of the pain in 20-30 minutes, I suppose.  I hope you'll follow up on that hemicrania continua possibility.

  21. So first step ought to be to try to get indomethacin.  It will tell you if you have HC.  It's an unpleasant med that had gastrointestinal side effects that are severely uncomfortable for some people and not so bad for others, but it might take away your pain.

    Also, start on the D3 regimen: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

    You could share this with your doctor who "hasn't heard of anyone doing [oxygen] ": https://jamanetwork.com/journals/jama/fullarticle/185035

    If you have CH, you are indeed getting a "crapload," since it's all crap in terms of treating CH.  No one has ever prescribed a triptan (such as Imitrex)?  Seems weird.


    54 minutes ago, Collin said:

    i smoke marijuana and cigarettes which I know can be a cause for clusters.

    Nah. Not really.  Some people get CH attacks from marijuana, but you don't.  Most people with CH smoke, but lots don't and never had.  ~80% (my guess) of people who quit smoking say it has no effect on their CH.

  22. The usual excellent information and advice from Freud.  And his follow-up question is very pertinent.  If your headache is constant and meds that should help with CH don't work (though we'd need more information than "crapload" to make this assessment :) ), you might well have hemicrania continua (HC), which has these characteristics and is treatable with the drug indomethacin.  If indomethacin wasn't part of the crapload and the symptoms match, then you want to try indomethacin.

    • Affect only one side of your head
    • Are daily and continuous with no pain-free periods
    • Cause moderate pain with spikes of severe pain
    • Respond to the prescription pain reliever indomethacin (Indocin)
    • Can become severe with development of migraine-like symptoms

    In addition, hemicrania continua headaches are associated with at least one of the following:

    • Tearing or redness of the eye on the affected side
    • Nasal congestion or runny nose
    • Drooping eyelid or pupil narrowing
    • Sensation of restlessness


  23. 11 hours ago, CHfather said:

    sometimes an oral triptan will work

    I made this significant mistake in my earlier post.  I should have written sometimes a triptan nasal spray will work.  

    You could probably contact the ER and find out what was in the three-drug cocktail, but I am guessing it was probably something like the Benadryl you mentioned plus Compazine, and Toradol.  Benadryl is helpful for CH, but it is not going to have quick results to abort an attack.  Compazine and Toradol are usually ineffective against CH.  I'm saying that O2 often knocks out a CH attack on its own.  One of our CH citizen scientists discovered that Benadryl taken as directed (I think that's 3 times a day at 25mg and 50mg at bedtime) will significantly affect CH.  Many people now add it to their treatments.