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CHfather

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Posts posted by CHfather

  1. 15 hours ago, Juss said:

    What I don't see people discussing and what CH Father could fill in is the adjunctive therapy of Botulin Toxin. . . . 
    I hope that @CHfathercan enlighten about Botox, as he is the genius. For me, they are symbiotic and you need both to deliver results. He would know, as he is the one most in the loop.

    Juss,

    When I first joined this board, almost exactly eleven years ago, I was desperate to help my daughter (the person in my family who has CH).  That's why I picked the screen name that I have.  There was a guy who was furious with me, and let me know that in a very harsh PM, because he thought I was trying to make myself sound like something special, I guess like the "father" of CB or something.  Farthest thing from my mind, but he wasn't having it.  (He was generous enough to write me an apology, a few years later, for that and some other irritations he had with me. I have always been touched by that decency on his part (Brian, if you're listening. . . ))

    I mention this because I think you might have me confused with the guy who is indeed the "father" of this board, Bob Wold, whose screen name is Psiloscribe, and who perhaps is a genius in terms of knowing things about CH.  I have no knowledge about Botox, and don't think I have posted anything about Botox, except maybe to point someone to the research here and there. 

    If I were to need anything to convince myself that I am not a genius, it would be your posts, which I ponder from time to time, not only because of their content, which I generally can't grasp (but which I am glad to see that others, such as Bosco', Shaun', Jeebs, and jon' are learning from, so they can help teach me/us), but because they illustrate to me that I only know "a lot" about the most conventional things related to CH -- oxygen, meds, RC seeds, and a couple of others -- and the advice I share is nowhere as sophisticated as it perhaps could be.  I have been telling myself to go back and thoroughly read your posts and links so I could at least be a little smarter, and with some free time I hope to undertake that project. 

    (You reminded me of one of my favorite lines from a novel I liked quite a lot, by John Lanchester.  The narrator, who one slowly comes to realize is completely nuts, is very jealous of his brother, who many consider to be a genius.  The narrator says, "I myself have always disliked being called a 'genius.' It is fascinating to notice how quick people have been to intuit this aversion and avoid using the term."

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  2. Just plain coffee has a more caffeine per ounce than a standard Monster drink. V-8 energy drinks (preferred by spiny) have about the same caffeine as a standard Monster.  As far as I can tell, those V-8 energy drinks have no taurine.   Some people find the energy drinks/shots yuckier than just coffee.  If you think taurine is valuable (many do), you can take taurine pills along with the coffee.

    As jon' notes, there are huge variations in how much caffeine an "energy drink" or "energy shot" contains.  In your 473ml (16 oz) Monster (if it's a standard one), you are getting 160mg of caffeine. An eight-ounce Starbucks Pike Place roast will also give you about 160mg of caffeine. (Coffee roasts also vary a lot.)  So you are getting a lot of additional stuff in a standard Monster to account for the 16 ounces.  A 2-ounce 5-Hour Energy has about 200mg of caffeine.  You can see a thorough listing of caffeine content here: https://www.caffeineinformer.com/the-caffeine-database

    Like jon', I am puzzled that your pain level is so high when you are starting out on the O2, and I'm glad you're having success with the O2.

     

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  3. NR', if you put the word Nurtec into the search bar at the top right of any page, you'll see what people here have said about it.  No one reported having the success that your doctor's other patient had, for sure. It's important to recognize that mostly you are likely to see disappointments reported here, since people who have success are not particularly likely to come here to report it, so you're not getting the full picture. (In that regard, it's frustrating that some Nurtec threads tail off without closure, since it's impossible to know whether the treatment succeeded or not.)

    It's my understanding that Nurtec is an abortive medication to stop individual attacks (migraine attacks, since as you say it isn't an approved CH treatment).  Is that how your doctor prescribed it (take it to stop an attack), or are you supposed to take it regularly as a preventive?  Aside from that patient whose cycle is reported to have ended, as an abortive Nurtec seems to be not nearly as effective oxygen or triptans.    

    My goodness, it is expensive!  When you say "without insurance," if that means you have no insurance, that's one thing, but if you do have insurance but it won't cover it because it's not approved for CH, maybe you could try something like Emgality, which works in essentially the same way, on CGRP receptors, and is approved for CH.  If you decide to go ahead with this purchase, you can get it for a little less using a coupon from at goodrx.com.

    Can we assume that you are using all the standard CH treatments -- oxygen, D3 regimen, etc?

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  4. Nice going!!!

    If your mask has open holes in it (a circle of small holes, typically on one side, whereas the other side has typically has the same holes but with a gasket behind them), be sure to block them with your thumb as you inhale, or cover them with tape.  They let room air in as you inhale, and that reduces the effectiveness of the O2.

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  5. I had horrible neck pain some years ago.  Every day a misery, wearing a cervical collar all day, unable to do anything comfortably.  I was in the hospital for a week just because I was going nuts from the stress.  The first day I was there a doc came in and said he had looked at my MRI and he was ready to do surgery whenever I wanted (fecking ambulance chaser).  Nothing they gave me, even morphine or steroids, helped at all, and when they kicked me out they gave me giant bottles of things to take daily (neurontin, oxycontin, oxyIR . . . ). I flushed them down the toilet on the third day (too bad -- street value was probably pretty high). 

    It happened that we had a connection with a top neurosurgeon, and I counted the days until my appointment with him, thinking he surely was going to rush me into surgery and finally fix the pain.  Instead, he said to come back in two months after doing physical therapy regularly.  I was crushed.  I wanted it over, and I was terrified of doing anything to make it worse.  Turned out that waiting was the right thing to do, and I never did need that surgery (and I never miss a day of doing my neck exercises).  

    There are those famous studies where they would look at people's spines and try to predict who was having back pain. Turned out that except in extreme cases there was no connection between spinal condition and back pain. One person could have three herniated disks and be suffering, and another person could have something that looked just the same and be having no pain.  And the other way around -- no structural issues but serious pain for some and no pain for others.

    So maybe, like me, you were just having some kind of awful episode and it's going to get back to normal or normalish and just become a memory.  Or, of course, maybe not, but it sounds like they're ready for you if surgery is what you need.

    Love you, Denny, and sorry you're going through this now, too.  

     

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  6. Acan', the D3 regimen is ultimately a healthier, and better, preventive strategy than any med.  It will take effect as quickly as verapamil, if you need high doses of verapamil to be successful and have to be titrated up to those levels (that is to say, the D3 regimen might not be effective right away, but verap won't be, either).  I can't say whether that same kind of time period before effectiveness is true of topirimate or other meds, and I'm not saying not to try any of them -- just saying that D3 is a better solution for most people.

     

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  7. 41 minutes ago, Twisted said:

    Where can I find info on treatment of CH with LSD?

    The basics are covered if you click on the blue "NEW USERS ..." banner at the top of each page.  Beyond that, there are terrific people here who can help you.

    Strongly recommend that you also start the "Vitamin D3 regimen."  It really helps a lot of people.  I don't know where the latest info on that is, but someone will connect you to it.

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  8. Generally successful at stopping the pain for a while.  Generally not successful at breaking a cycle, but sometimes it does. The dosage recommended by a leading expert is 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks.  

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  9. Agree with all the comments above.  The fact that you had such a severe bad reaction to Imitrex might support a hemicrania diagnosis, since hemicranias are generally not responsive to triptans.  (They are also not generally responsive to oxygen, but you still should push as hard as you can for O2 -- as Jon' said, if necessary, get the prescription and self-pay, or go to welding O2 (we can tell you more about that)). This distinction doesn't make any real difference, but since you get periods of relief, it might be paroxysmal hemicrania rather than hemicrania continua.  https://www.ninds.nih.gov/Disorders/All-Disorders/Paroxysmal-Hemicrania-Information-Page   There are some parts of what you describe that aren't really consistent with typical hemicrania (length of the severe attacks), but as has been said, a fair test of Indomethacin will help you rule that diagnosis out or in (as will a test with oxygen).  A test of Indomethacin usually starts at 25mg three times a day. This is a relatively low dose, but you have to see if your system will tolerate it.  Can go as high as 75mg three times a day before you really know if it's going to help.

    Prednisone also typically helps in the short term with hemicranias, as it does with cluster headaches.  

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  10. 25 minutes ago, Shaun brearley said:

    I've tried the ice cube in my mouth but can't  keep it there long enough for some reason 

    It is said that sucking ice water through a straw aimed at the roof of your mouth will also accomplish the desired "brain freeze."

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  11. [Edited to say that I was writing this as your post came up.]

    I know that link I posted earlier is a lot to read, but I'd urge you to go through it (or ask your wife to).  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    Remember that you can divide your Imitrex injections so there are a lot fewer side effects: https://clusterbusters.org/forums/topic/2446-extending-imitrex/  I might not be in the majority about this, but I don't think a couple of 2mg injections of sumatriptan are going to make your situation worse, and I'g go for stopping the pain.  You can do all the better things later.

    29 minutes ago, Acanderson34 said:

    I was always under the impression I had to breath the o2 through my nose and exhale from mouth?

    Lots of people use just a breathing tube in the mouth, with no mask.

    Would this mask from Canada be available sooner?  https://www.performancehealth.ca/nonrebreather-mask   They are very inexpensive -- any chance you could ask for one from a local EMT unit, hospital, or maybe fire station?  (I'm not sure whether it'll make much difference at 3 lpm, though.)  Did you ask your O2 supplier about getting proper equipment?  

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  12. Most people think that plug-in unit (a concentrator) is pretty ineffective, because it's less than 100% pure O2, since it uses room air to make the O2.  Also, most concentrators don't go high enough in flow rate to effectively treat CH.

    A basic red bull would be sufficient.  Many people find that the smaller energy shots, such as 5-Hour Energy, are preferable, in part because you can get them down quickly and in part because they actually have more caffeine than the larger Red Bull-type drinks.  For more than a few people, a strong cup of coffee works, at least in the earlier stages of CH.

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  13. If Western ProResp is an oxygen supplier like we have in the US, they should be able to give you a mask and a higher-flow regulator (and bigger tanks).  Unless your doctor prescribed cannula and 3lpm, which seems very unlikely.  They are giving you what would normally be given to a person with COPD.  They might never have had a patient with CH.

    I think some people would recommend taking the cannula off and just sucking O2 through the tube for possibly better results.  If you have to, you can buy a simple non-rebreather mask at amazon.com, or a fancier mask designed for people with CH here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit, and you can buy your regulator(s).   It's possible that you might get better results just inhaling air from an air conditioner until your system is right.

    In addition to a larger tank (or tanks), you want to keep one or more smaller ones for portability.

    Of course, you will have much faster aborts with a proper system.  For now, try energy shots or some of the other abortive strategies listed in this document (toward the end, under "Treatments without O2 . . . ").  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  The whole document might be worth looking over.  Unfortunately, your pattern of mild early cycles followed by more severe one is not uncommon, so you need to learn to manage your CH and start preventing cycles.  

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  14. 2 hours ago, Shaun brearley said:

    She is 1 great woman .

    Yes, the usual amazing post from spiny.   Like her, I have to ask -- Only Emgality?  That would be very unsatisfactory.  The Emgality might work, but there are strategies to get you out of pain now.  And regarding that Emgality prescription, it is for 300mg?  That's what is needed for CH.  

    Even with a migraine diagnosis, you should have been prescribed Verapamil and some kind of triptan (perhaps the injectable form, Imitrex, but maybe tablets or a nasal spray).  Did none of that help you?  

    spiny has covered it all so well that there's not a lot to add, but this post might have something useful for you to know: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

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  15. Agreeing with the advice and info you have received so far.  D3 and oxygen are where you want to be.

    In the meantime, if you have any old Imitrex, it will probably still work, even from three years ago.  But you ought to be splitting doses. See this file: https://clusterbusters.org/forums/topic/2446-extending-imitrex/  Once you get O2 set up, you will be using a lot less triptan.

    There are some things that work for some people when they don't have standard abortives.  If you look in this file -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  -- under "Treatments without O2" (down toward the end), there a bunch of things to try, including energy drinks/shots (often works), voluntary "brain freeze," standing in superhot water (this seems to help a lot of people), and inhaling cold air from a home or car air conditioner.  You might also try starting on some Benadryl (4 tablets/day, or what you can handle and still function), because allergies have been shown to have a big effect on CH.  Also in that file, there's a long discussion of oxygen and maybe some other things you'd want to know.

    Busting is also something you want to have as an option.  There's a summary of busting principles at the end of that file.

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  16. Agree with Jeebs on all counts (except insofar as those counts apply to me), and with Jon'.  

    Just a reminder that welding oxygen can be used as the basis for an easy to set up, cost-effective O2 system. Lots of people with CH do it that way. You've already been exhorted about the difference O2 can make.

    5 hours ago, Kprice said:

    Dr wants to put me on Xywav, but I have concerns considering the reactions I've had to sumatriptan. I did read about a small study on 4 cluster patients who were treated with Xyrem that showed promising results. Just a tad weary of putting something else in my body. 

    Don't blame you for your misgivings about more meds.  For those who don't know the brand names, Xyrem is sodium oxybate and Xyway is a low-sodium version of Xyrem.  The study that Kprice mentions, on four folks with chronic CH, showed results that were pretty amazing -- 90 percent reduction in attacks for three of them, over an extended period, I think.  There was a person here, with chronic CH, whose attacks stopped for quite a few months after taking Xyrem, but then started again.  Maybe there's more about sodium oxybate over at clusterheadaches.com.  

     

    • Like 4
  17. There is a brief discussion/illustration of hyperventilation beginning at about 7:20 in this video (which is at this CB site): https://clusterbusters.org/resource/oxygen-therapy-for-cluster-headaches/

    Batch (now xxx) describes and discusses a hyperventilation process here (no video) -- https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ -- but he is doing it differently.  He has 30 seconds of hyperventilation with room air -- ten fast, intense inhale/exhale cycles of about 3 seconds each -- followed by a deep inhalation of O2 that is held for 30 seconds and then forcibly exhaled with a strong "crunch," then followed by another 30 seconds of hyperventilating with room air, then another inhalation of O2, etc.  You should read what he says about all that. It begins following the instructions and photos related to the "redneck bag."  I found it a little more jumbled than Batch's usual descriptions, but the info is all there.

     

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  18. 1 hour ago, Kprice said:

    I've had this (all the symptoms as described above) happen a handful of times since then

    First of all, it doesn't seem that you have oxygen.  That is essential!  First priority.  Get started on the D3 regimen also, but oxygen is essential. It will stop your attacks and it will reduce your intake of triptans.  Too many triptans create big headache problems of their own (medication overuse).

    Do the bad symptoms you describe always happen with the spray?  Ever with the tablet??  It sounds like you're saying that you typically have enough warning (even "several hours") before an attack that you can go through your progression of tablet/spray/injection.  Am I reading that right?  And are you also saying that you can sometimes/often lay down as you deal with an attack?  And I think you are saying that an injection will stop an attack, but not always since sometimes they go on for three hours or more.

    There are a lot of seemingly unusual situations here.  I wonder how much triptan you are taking in (the nasal spray is usually zolmitriptan, not sumatriptan). One thing you can/should do is get less than 6mg with your injections.  One way to do that is here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/.  Another way is to get a prescription for vials and syringes so you can measure your own doses.  For most people, 2mg is enough; practically no one needs more than 3.

    1 hour ago, Kprice said:

    Also, I did inform my Neuro of this. He sympathizes with me, hence the prescription for all 3 forms of Sumatriptan but he has a total of 3 cluster patients & he's pretty young so not very experienced on the topic. He sort of brushed it off & said it sounded like a type of dystonic reaction but he couldn't say for sure without seeing it. 

    Many of us here have had physicians brush off symptoms that they don't understand.  What you are describing seems serious enough to me that a second opinion seems important.  Do you have access to a headache center?  They will have seen practically any kind of triptan reaction, I would think, since triptans are prescribed for many "headache" conditions. 

     

    • Like 3
  19. Thank you for this, Merle.  Dr. Robbins has been a good friend to people with CH. He has spoken at annual ClusterBuster conferences and published some valuable papers.  Was there a particular way in which they were helpful to you (a new prescription; some good advice; etc.)?

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