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ClusterBusters

ThatHurtsMyHead

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Posts posted by ThatHurtsMyHead


  1. DK,

    I've been keeping up with the thread, wondering if it was going anywhere.  As others have pointed out.  Someone comes to the board every few weeks announcing a cure.  There is no cure.  Only remission.  I myself have gone 2 years without an attack, then back to episodic then to chronic.  Others 10 years or more and it comes back.  I manage my beast with the natural medicines primarily discussed on this board. 

    That said.  I like to follow Bob's lead and let people speak freely without fear of repercussions.  MM was once thought of as being a quack management technique.  It is now, thanks to Bob and others like him, in my opinion one of the best treatments out there along with Oxygen.  

    If you feel cured, then I'm happy for you.  I'd recommend not claiming a cure though.  Those of us that have been around are sorta tired of people claiming a cure, yet they're clearly simply in remission.  I thought verapamil was a cure many years ago.  The first time my doctor prescribed it for me, my CH disappeared a few weeks later.  I was over the top happy that I finally found something that worked.  The next year my CH came back and I went to the doc for another script of verapamil.  It didn't do anything.  Absolutely nothing accept give me tachycardia.  (A dangerously slow heart beat).  I realized thinking back.  The first year was about 2 months into my cycle.  At the time my cycles ran 2 to 3 months.  I realized then, that my cycle had simply stopped on it's on, and had absolutely nothing to do with the verapamil other than coincidence.  I've read about others having similar experiences with Kudsu, chriopractic care, hot baths, hotsauce up the nose, having the facial nerves cut, Adkins diet, vegetarian diet, etc etc. and the list goes on.  They were not cures, just chance coincidence, or at best something that provided a small bit of help (which we all need at one point or another).  What works for one person, may or may not provide help for another.  

    It's great you're in remission, but people will not take you seriously by claiming a cure.  You're in remission, that's great and happy for you.

    Cheers,

    J


  2. I think Seth meant to post this here:

     

    Crazy thing, this my 3rd cycle. And, also on this one, it will skip a day, skip almost two days and come back. And also the time of episodes have varied. I’m episodic and seems to be every 2 years (2015, 2017, now 2019). These clusters super suck, I tried explain it to co-workers as at times I need run off and deal w/ this crap. But, explaining really don’t bring justice. No obvious open wound or blood shown, people don’t understand to much. But, this my first cycle really using oxygen, finally got this doc to prescribe me. Last cycle, she literally told me during a visit and discussion that, “I just gotta deal with it”! Tell me how yal feel about that. I was hot and damn near cried, like this stupid darn ......... Oh well, thanks be to “God” always. 


  3. Exiegous,

    If you haven't gotten that script for sumatriptan  filled yet, don't bother.  Oral sumatriptan is pretty useless for our condition.  You need the 6mg auto injectors.  I was given the oral stuff wayyyyy back, and would just throw it up after 10 minutes of an attack. Also, it takes too long to get in your bloodstream to help us at all.  The auto injectors usually work within 3 to 5 minutes.  (I don't like the stuff, but it can be a life saver when nothing else is available).

    Cheers,

    J


  4. Exigeous,

    Correct, as Spiny mentions.  O2 toxicity is only a risk at higher pressure than sea level PPO (partial pressure of oxygen) - SCUBA Diving.  The only real risk at sea level or lower pressures is alveoli collapse in your lungs,  (Those are the sacks that transfer Oxygen to your bloodstream and extract CO2 from your blood) but that's only a risk if staying on O2 for very long periods of time.  This is due to Nitrogen washout.  Nitrogen washout in the lungs can be prevented by simply taking a breath of regular air every 20 to 30 minutes when breathing 100% O2.  That adds enough Nitrogen back to your lungs for proper function for a very long time.  

    Definitely O2 is the #1 abortive.  There's no side effects and it's much safer than ANYTHING :) the doc can give you.

    Cheers,
    J


  5. O2 doesn't need a flame to spontaneously combust with hydrocarbons.  I know lots of people do this, so I'm not knocking it.  Just wanting people to be aware they should be very careful. 

    Example:  Say a mechanic comes in with oily hands and is getting hit.. He goes for the bag and bang... He's on fire in a second.  Hydro carbons are all around us.

    Again I know lots of people do this without issue, but just wanting there to be warnings also.

    Cheers,

    J


  6. We all will do about anything when the CH monster is on our back. The only challenge I see to this method is it could be a bit dangerous if someone were to use a bag with hydrocarbons in on or around it.  100% O2 will flash burn when exposed to hydrocarbons.

    I've done some pretty risky stuff myself (and didn't even know it at the time) when my monster is in full swing.

    Cheers,

    J


  7. BOF,

    Funny, yea the food list as high in Tyramine is pretty much exactly my CH food trigger list.  It's very interesting that they included Cluster Headache in the study information:

    "Research reveals a possible link between migraine and elevated levels of tyramine. A 2007 review published in Neurological Sciences[19] presented data showing migraine and cluster headaches are characterized by an increase of circulating neurotransmitters and neuromodulators (including tyramine, octopamine and synephrine) in the hypothalamus, amygdala and dopaminergic system. Migraineurs are over-represented among those with inadequate natural monoamine oxidase, resulting in similar problems to individuals taking MAO inhibitors. Many migraine triggers are high in tyramine."

    There's a few key words that coorelate - CH, Tyramine, Hypothalamus.  Maybe someone will connect the dots some day.  

    Cheers,

    J

     

     


  8. ClusterSwarm,

    I rarely ever edit posts, but I changed the title from "Cured" to "helped".  Claiming a cure is a bit of a sore spot with Ch'ers.  Many have claimed to be cured, and rarely does the said cure work for anyone else, or it stops working for the person claiming the cure.  

    CH is a nasty condition.  It changes all the time.  When I was episodic I went 2 years between attacks (cycles) once and other times it was 1 month between cycles.  It's great that you think you're cured.  It's always good to stay positive.  Just remember that CH does just stop (or pauses) for most everyone from time to time.  It's just what it does.  No one knows why.

    Cheers,

    J


  9. manishkpratap,

    I'm also in the camp of only sometimes I get a blocked nose or sinus.  It's also always after I'm hitting a Kipp 6 or higher, never before.  So I'd suspect the sinus inflammation is a result of the attack, not cause.  I can definitely appreciate your sharing what works for you. :)  On the other hand if the blocked nose or sinus was the cause of the attack.  Wouldn't it stand to reason that anytime we get a cold, flu etc, then we'd also get attacks when we're sick with a blocked sinus or nose?  Just thinking out loud.  Again, I think it's great that you found something that works for you.

    Cheers,

    J


  10. ClusterSwarm,

    I think what you have stumbled across are trigger foods, not necessarily a cure.  It's a known fact that foods high in a chemical called Tyramine are highest on the CH trigger list.

    Alcohol, Chocolate, Fermented Cheeses (the processed stuff is ok, since it's not really cheese and not made by fermenting milk), Aged or preserved meats, etc.  All of these are high in Tyramine, as Tyramine is a byproduct of food breaking down.  Case in point:  One person might be able to eat a banana without a CH attack, but another person it's a trigger for a CH kipp 10 attack.  Why?  One person ate the banana when it was just starting to ripen (low in Tyramine).  The other ate the banana when it was fully or overripe.  The overripe banana is VERY high in Tyramine.

    Now, why Tyramine is a primary trigger has yet to be identified, but it's a fact that foods high in Tyramine are also the most common CH food triggers.

    Cheers,

    J

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