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Posts posted by itsfatboy

  1. 1 hour ago, CHfather said:

    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.)

    i will b e getting tanks from a medical o2 supplier. 
    that mask looks good, but it $25us and shipping is $32us , that’s over $70Canadian

    i wonder if a similar mask is available to us Canadians.  


    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).

    I meant that Zomig worked better at the beginning of the CH, but not sure how deep I am when it becomes strong enough to wake me , as it did just 20 mins ago


  2. So. I wrote that blurb at the office and I appear to have skipped over some things.

    My original scrip for O2 was 8-12L /min, as was prescribed by my neurologist.

    My GP has changed the scrip this time to 15L/min with a non-re-breather mask, which I believe is what you're suggesting i should use.

    My Verapamil was increased last year to 240mg slow release. 

    I was taking so much Zomig, that my benefit plan started capping it. Here in Ontario, Canada,  the cost is $28 each spray.

    When I got below 3 boes (of 2). I would literally start to panic that I wouldn't be able to find more.

    When I first started Cambia, it was very effective. Just like Zomig was at first, but I was told Zomig was to be used at the beginning, not DURING a CH.

    Maybe my GP didn't have a lot of experience in prescribing for Cluster Headaches, but I really don't think a lot of GP's have that experience.

    As for the energy drinks, is there a specific brand or certain product within a brand line? Or just plan old redbull ?

    I am a little concerned that an energy drink in the middle of the night, I may not get back to sleep?

    Mind you, the quality of sleep after a CH is pretty sh*tty.

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  3. Hi, this is my first post so take it easy on me :-)

    I have suffered with CH for about 20 yrs, but was only correctly diagnosed about 6 yrs ago.

    I had an addiction to Advil Cold and Sinus pills as a preventative measure for about 10 yrs, 3 extra strength with breakfast and 3 before bed.

    Looking back, I don't think they worked very well. I had an Ear/Nose/Throat specialist perform Sinus surgery to try to alleviate the pain, to

    no avail. My GP, after diagnosing me, prescribed me Zomig nasal sprays and as a preventative measure, Verapimil Slow release, 120mg/day.

    2 yrs ago, the Beast visited every day for a month, and I was taking Zomig every day. I asked my GP if I could take more than one, he said that was fine.

    After visiting a Pain Clinic, I was told that much Zomig was contributing to rebound headaches and was immediately taken off Zomig. 

    The replacement drug is called Cambia (diclofenac potassium). You mix the powder with a few tablespoons of water and drink it.

    It only works at the first sign of a CH and is useless when the headache is in full swing, so not usefull when the beast wakes me up in the middle of the night.

    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.  

    One of the remedies my ENT specialist once offered up was to spray lidocaine in my affected nostril, to freeze the nerves, I had some success numbing that area but

    then he was reluctant to prescribe it for some reason. The title of this message is Sucking Ice Cubes. The reason is I have discovered that as part of reducing the pain felt, sucking ice

    cubes mimicked the lidocaine effect.  I found that by sucking ice cubes and pressing them into the roof of my mouth, it would, over a period of 20-30 minutes, "freeze" a nerve in my sinus cavity that would reduce the pain and help chase away the beast. It often works in conjunction with icy cold compresses to the left side of my face.  Sometimes I even find sucking ice cubes can stop a shadow from building into a full blown CH. I bring a Yeti 30oz mug full of ice every day to work in case I need it, it keeps the ice all day in my lunch bag all day.

    I don't know if anyone has tried this before, there's just soo much information here.





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