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Posts posted by CHfather

  1. Jeebs,
    My recollection is that my daughter's first bad cycle followed a tooth extraction, when she had only had occasional "bad headaches" before that time.  The extraction itself was difficult, and for a long time we were blaming the dentist for having caused her CH (which at that time (and for much too long thereafter) was diagnosed as trigeminal neuralgia).  I don't remember specifically whether she was having those "headaches" at the time of the extraction, so I'm not fully answering your question, but the shift in severity was very large.

    14 hours ago, jon019 said:

    ....if i was yu i'd keister a Zomig....


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    Glad the verap seems to be helping!

    I have read about Indomethacin being prescribed as an abortive (to be taken to stop an attack), but I don't think we've seen anyone here (admittedly, not a large sample) who wasn't prescribed it to be taken at regular times each day, in consistent doses, as a preventive.  That's the context in which I think the previous suggestions in this thread are offered.  

    Down close to the end of this post -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- there's a section about dealing with shadows for CH.  Since Indo can be such a harsh thing, I think I might suggest that you try some of those things before resorting to the Indo.


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  3. 4 hours ago, Eli.G. said:

    I just wish we have something that attacks don't come

    The Vitamin D3 regimen accomplishes this for many people.  

    So do many pharmaceuticals, including verapamil.  But these have side effects, while the D3 regimen, if taken properly, has practically none.

    I have to say that your CH seems very extreme in the way it comes on, overwhelming you so very quickly with so much pain.  I'm sorry -- that must be particularly terrible, even for CH.  

    • Like 2
  4. Just reporting here that one person I know of has had a very manageable cycle lately, which that person attributes to having switched to Quercetin (starting with .5g daily about 6 weeks before the cycle began, and upping it to 1g when the cycle began).  Since everything is guesswork, it's not really possible to say that it was the Quercetin that made the difference, but this person feels like maybe it did.

  5. 8 hours ago, Eli.G. said:

    injectable triptan works in 6 min but when I already get attack , problem is when I had more then 2 attacks a  day and I can't inject myself with 3. rd triptan because of heart risk ,

    If you need or want sumatriptan injections in the future, you can split them so you are using less each time. https://clusterbusters.org/forums/topic/2446-extending-imitrex/   Some doctors will prescribe it in vials with syringes so you can measure your own doses.  Most people need less than the full 6mg that is in the standard injector.


  6. It's great that you are getting relief. 

    Carbolitium = lithium; Deltacortene = prednisone.  Lithium is a good preventive used for some people with chronic CH.  Hopefully you will find the side effects manageable and your doctor will help you find the right long-term dosage. 

    It is generally considered a very bad idea to take prednisone regularly because of its effects on bones and joints, among other things. 50mg/day seems to me like a pretty strong dose.

    When you say you "tried everything," does that include the preventive vitamin D3 regimen?  Does it include high doses of verapamil?  I assume it includes properly-used oxygen and an injectable triptan.  If you did in fact try everything that is typically prescribed for CH and none of it worked, then you might think about whether you have a condition that looks like CH but isn't, such as a hemicrania.  The prescriptions you are taking now would probably work against hemicrania, too.  Lithium might turn out to be okay as a long-term strategy, but I think you really have to think twice about taking prednisone for an extended time.

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  7. Great!!!  Consider splitting the injection if it's 6mg (and if you use it): https://clusterbusters.org/forums/topic/2446-extending-imitrex/.  This knowledgeable doctor might be willing to prescribe sumatriptan in vials with syringes.  You should probably try the triptan nasal spray, too.

    I suppose you could start looking on your own for O2 suppliers.  Depending on your area, Lincare and Airgas are typical big suppliers.  Just google medical oxygen.

    I don't know that many people are using lidocaine to help with aborting attacks, but maybe I've just missed that.  What I've read about it is typically a 4% solution, but again, I have very limited knowledge.

    The MRI is a good idea.

    As I say, sounds like a good doc!  Hooray!!!

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  8. 1 hour ago, TimothyH said:

    asked to get prescription of O2 but doctor said they don't prescribe that. (Going to see neurologist today to see if they do.)

    Timothy', here's hoping you see a competent neurologist today and you do get a prescription.  Let us know.  

    If you don't, you can set up your own system using welding oxygen, as many people with CH have done.  We can tell you more about that.

    Many people without O2 find that an energy shot such as 5-Hour Energy will stop an attack or significantly reduce its severity.

    Here's a file with a lot of info: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

  9. 1 hour ago, Paula said:

    We live in Hallandale and I am trying to get oxygen but not sure where I should start

    You have a prescription for medical O2 and you're looking for a supplier?  I ask because often a doctor who writes a prescription will have a preferred O2 supplier.

    Or are you without a prescription and looking for welding O2?

  10. This has been discussed in other threads.  I don't think there's a definitive answer, but I think for most people the vaccine wasn't a major trigger.  Since there are several threads, you can see them by typing the word vaccine into the search bar at the top right of the page.  Not sure you'll learn much, except that reactions vary.

    • Thanks 1
  11. CrystalAnn', you don't say if you are splitting your Imitrex injections.  If not, https://clusterbusters.org/forums/topic/2446-extending-imitrex/


    Since it's allergy season in many places, and allergies seem clearly to induce CH, I would consider Benadryl, 25mg four times a day, or Quercetin, maybe 1-3 grams/day.  https://clusterbusters.org/forums/topic/7417-ditch-the-benadryl/?tab=comments#comment-71582

    I don't know anything for certain about this, but maybe it's worth trying: https://clusterbusters.org/forums/topic/5829-does-nasal-decongestant-spray-work-for-you/?tab=comments#comment-73323

    Not sure what the welding O2 issue is, but here's a general file about it: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

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  12. Energy beverages (the 8 oz or larger drinks and the smaller "shots") work because they have a lot of caffeine in them.  Some people credit other ingredients, such as taurine.  I'm not persuaded about that.  So straight strong coffee might work, as it does for some people.  A 5-Hour Energy shot is very potent (about twice as much caffeine as a Red Bull, for example), and you can swill it down fast. Some people say the colder the better. Surprisingly, I'm going to say that 85-90 percent of people can get back to sleep quickly after taking it during the night.

    A non-rebreather mask is fine.  Read the file I linked you to for advice about how to maximize its effectiveness.  The other link I provided is to a different kind of mask made just for people with CH.  Many people say it speeds up their aborts.  (It's not technically a non-rebreather mask.)

    Just to be sure -- you are getting your O2 in cylinders/tanks, not from a concentrator, which is a machine that makes O2 from room air?  Cylinders are much better than a concentrator.  (Again, there's some advice in that linked-to file about being sure your O2 supplier gives you what you need--for example, at least one very big tank and one smaller one for portability.)

    240 mg verapamil might somewhat reduce attacks for some people. It is still a low dose (as is discussed in that file I linked you to).

    I would say that to the extent that Zomig was making things worse for you, it was from overuse headaches, which are not really the same thing as rebound headaches.  If you don't overuse it, it's probably not going to affect your attack rate or the severity of subsequent attacks.  I am not a doctor, and there is lots of speculation about the possible "rebound" effects of triptans, but I think I am right about this.  Again -- with a proper oxygen setup properly used (along with caffeine), and with effective preventives (I think most people here would prefer the D3 regimen over verapamil), you wouldn't be turning to the triptans nearly as much (if at all).

    Cambia is an NSAID.  If it worked for you, that's great.  NSAIDs typically don't work for CH, and I haven't seen any evidence that Cambia does, but maybe I missed it. Cambia is prescribed for migraine.  It's relatively slow-acting, which is okay for migraines since they typically last much longer than a CH attack.  

    My point about Zomig is that you said your doctor had prescribed it "as a preventative measure."  I was just making the point that it doesn't prevent attacks (the way verapamil is supposed to, or the way the D3 regimen does), it only stops an attack that has started. So yes, you take it at the beginning of an attack.  That doesn't mean that if you don't take it in the first couple of minutes it won't help you, so I'm not sure where the specific distinction would be between "the beginning" and "during."  More effective at the beginning, but not completely ineffective during (depending, as you have said, on how far ramped-up "during" turns out to be).


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  13. Welcome, its'.  As we say, sorry you have to be here.

    First things first.

    6 hours ago, itsfatboy said:

    Last year I was prescribed Oxygen but had limited success. This time around I was prescribed a higher flow rate with a non-rebreather mask,

    hoping that makes a difference.  

    It will make a difference.  Sounds like you had a useless system the last time.  What is the current flow rate?  It's rare for a doctor to prescribe more than 15 lpm, but most people find that flows higher than 15 lpm make for better aborts.  Throw down some coffee or an energy shot as you start of the O2, use a good breathing technique, and your life is gonna start changing.  Consider getting the mask that's made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

    One way in which O2 is going to change things for you is that you won't need a triptan like Zomig nearly as often, because the O2 will stop the attack.  Only an idiot would prescribe Cambia for CH and think it was sufficient.  Only an idiot would take you off Zomig instead of cautioning you to use it less often.  (Zomig is not a preventive. It doesn't prevent attacks. It stops (aborts) attacks that have begun.)  Verapamil is a preventive, but 120 mg/day is useless.  (Could be that they intended to increase it over time, but 120 mg/day is still a low starting place.)

    The ice cube to the roof of the mouth (or sucking ice water through a straw to the roof of the mouth) is something that has been recommended here.  Glad it helps you.  Drinking down an energy shot usually works better and easier, and O2 and a sensible abortive are also going to stop the pain, so very few people have to resort to the ice cube method.

    We're not giant fans of triptans or verapamil here, but they can have their place.  The three things I would suggest you do are (1) Get your O2 going ASAP; (2) Start the Vitamin D3 regimen ASAP; (3) Read this file, which has info about (1) and (2) and maybe some other stuff that might be useful to you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    And (4) Keep asking questions, and (5) Consider busting, at least as something to have in your back pocket for the future. (Busting discussed at the end of the file I just linked you to.)



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  14. I know there are many people here who have been using oxygen for a very long time, who still find that it works fine for them.  As you said, there are people who find that once in a while O2 doesn't work for them (I think that is usually because the O2 level in the tank is too low).  I do know of a couple of older people who have been using O2 for many, many years who have found that other abortives sometimes work more effectively for them, but I don't think they have posted about that here, and I can't say whether they've developed a tolerance for O2 or whether there are other factors involved.  I suspect that maybe you are, as you say, "torturing yourself unnecessarily."

  15. You might already have seen this as you've been reading.  It gives you a sense of the treatment landscape, including basics of busting at the very end:  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    As others have mentioned, oxygen would typically be your best option, but with relatively short and infrequent cycles maybe that's more of a future consideration unless you can get it quickly.  Triptans, either injectable (Imitrex) or perhaps as nasal sprays, might be right for you this time.  The D3 regimen is a good preventive, but probably won't help you right away.  Busting works for a lot of people.  Strategies like energy shots/drinks can help you now.

    11 hours ago, Bejeeber said:

    Many blame things like imitrex use for worsening their cycles. I don't particularly doubt them, but my CH went ahead and started continually worsening before imitrex was even available in the US.

    Same was true for my daughter, who used no pharma of any kind for the first ten years she had CH.  

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