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Posts posted by ThatHurtsMyHead

  1. 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.



  2. 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.



  3. 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.



  4. I'm feeling some tension in some posts here.  Everyone has a bad day, week, month etc.  Let's not make personal jabs.  I see a lot of good intention on posts that are being interpreted at a different angle.  

    Back on the thread subject:

    I used a very strong mint lotion type stuff on my temples a long long long time ago.  It seemed to help some, but wow...  Don't get it too near your eyes.  :(


  5. Maybe a bit of comparison on my Kipp Scale, for those that have a different interpretation:  

    I've broken my wrist before.  It was 10 at night and I didn't feel like going to the emergency room.  I decided to go to bed and go in the morning.  I went right to sleep like a baby 15 minutes after breaking it.  Slept fine got up.  Put my wrist in a tshirt sling and went to the emergency room.  My kipp level was maybe 3 out of 10.

    I've de-gloved 2 fingers on my right hand in a sailing accident.  The index and middle finger had the meat pulled right off the bone.  My middle finger bone was sticking out like a skeleton you see at Halloween.  Of course both fingernails were peeled off as well.  We were docking a large boat and my fingers got caught in a cleat.  I yelled up to the guy on the bow not to dilly dally, that he had to take me to the emergency room as soon as the boat was tied up.  I grabbed a hand towel from the galley and ran back on deck spewing blood everywhere.  I finished securing the stern and port of the boat before showing my friend what happened.  He drove me to the emergency room where they reassembled my fingers.   Oh and without any anesthetic.  I'm immune to the anesthetic they use for nerve blocks.  My peak pain through the entire event was maybe a 4.  My pain tolerance is VERY high due to my years with CH I can only assume.

    I've had 3 kidney stones.  Passed one of them.  Kipp 5 to 6.  Other two had surgery to remove and were maybe Kipp 3 tops. 

    To say my pain levels with a CH K10 are worse than an amputation without anesthetic is a no brainer.  My K10's are much worse.  Everyone is different, but pain is pain.  Support for our CH family here is what's its all about. 



  6. The reality is everyone has a different pain level from their CH.  They also have different pain tolerances.  I'm one of the people that have attempted suicide due to my CH.  When I get a K10, it IS a K10...  I've passed kidney stones and they were a walk in the park compared to my K10 attacks.  I've beat my head on the floor till I've passed out.  

    Because some people with CH don't really get K10's doesn't mean others don't.  I wouldn't downplay any description.  Otherwise you shouldn't complain if someone just tells you to go take an aspirin when YOU have an attack.  (see the comparison?)

    I've spoken with people that can't understand why some of us use indole ring hallucinogens to treat our CH.  They've said.  "CH isn't that bad.  Just wait till the attack passes".  "Why would anyone take an illegal substance to treat their CH.  It's not that bad"...   The examples go on and on.  To those people...  I seriously question if you really have CH.  I KNOW how bad mine was before I started self treatment.  I'd never go back to that world, or I'd be outa here if I did.

    I think healthy debate is healthy.  Let's just not downplay someone else's description just because your pain isn't as bad as theirs.  You might wake up one day and find your pain IS as bad as theirs and reassess your own Kipp scale.  (I certainly hope not though).



  7. HazBaz,

    When in cycle I'm guaranteed an attack when I break the surface coming up.  Going down on a dive is fine.  I learned the hard way a long time ago, when my CH is around then SCUBA is off the schedule.


  8. Typically most of our food triggers for CH are foods high in Tyramine.  

    Chocolate, Alcohol, Any preserved or aged meats (salami etc), Any fermented foods (Aged Cheese, soy sauce, etc).  Tyramine is a byproduct of food breaking down and triggers inflammation in some people.  There's a common trigger list CHFather put together some time back.    

    When my CH hits, if I conform to a strict diet I can significantly reduce my attacks.



  9. Definitely not heard of rebounds from O2.  As for cycle changes, yes.  I think quite a few of us have had our cycles change (or extend some) after starting O2 therapy.  That said, I'd definitely rather have the Oxygen than not.  Keeping my attacks to a K4 for 20 minutes instead of K10 for 2 hours is a complete game changer.  100 percent high flow Oxygen is a life saver.


  10. AlexItalian,

    Going on almost 10 years since I started busting, and I'm more healthy physically now than I was 10 years ago.  No known physical harm mm does that I'm aware of.  It's been taken for thousands of years.


  11. I get several weeks of VERY vivid dreams a few weeks before my CH comes back.  Bad dreams, like pretty terrible stuff.  Always first person.  When I'm PF, I either don't remember my dreams or have normal dreams.  I've spoken with a few others that have a similar experience with their CH.


  12. Sadly Verapamil while likely one of the most prescribed drugs for CH, has terrible efficacy.  Through data compilation of Dr's Halpern (etc) Verapamil has shown to have about a 5 percent efficacy.  I'd suspect diet and a simple termination of peoples cycles are more the cause and not the Verapamil itself.  The first year I tried it, I thought it was a miracle drug.  The second year it didn't work at all and instead It gave me heart palpitations (PVC's). 

    Glad it's doing good for you. :)


  13. JohnCluster,

    Sounds like you're going about it the right way.  Try one thing, then another.  Keep good notes.

    On Tyramine:  It's the chemical created when food breaks down.  Anything fermented is high in tyramine, alcohol, fermented cheese, aged and preserved meats etc.  A person could eat a really... really fresh steak and be just fine, but have one that's close to it's expiration date and it'll be high in tyramine and would be a trigger.  Bananas are the same.  Eat them when they're almost green and all's ok.  Eat banana bread and watch out...  I think that's why some people find some odd foods are triggers, but the same food isn't a trigger for another person.  It's more about the age of the food, not necessarily what it is.  But again, anything that's fermented or aged, is going to be high on the trigger list.



  14. Batch,

    Spot on!!  Their breakthrough is really no breakthrough if it only has a positive efficacy for 2 out of 10 people.  I'd be curious how it works long term.  I'd bet massage has about the same efficacy.. ha ha..  I'll give them this though, at least someone is doing something...  I'm sure their results will swing quite wildly with a larger test group.  If they did a 50/50 split (I didn't read the details) of the control from test subjects then out of 53 people they only had approx 10 that responded to the treatment positively.  That's not going to provide very accurate results.  


  15. SwiftLaw must be a sailor.  I don't think anyone else would get that. ha ha...  Always Reef Early.  That, and make sure you watch the wind direction.  Never had an accidental jib, and don't want one either.  :)  (ok sorry, I'll get back on the thread subject, ha ha)


  16. JohnCluster,

    I don't mean to be a downer, but it sounds like your cycle just came back, regardless of diet.  I can say diet can make a positive impact to reducing the severity and frequency of attacks.  (Staying away from any foods with tyramine in them).  If you look at any common trigger list, you'll see the worst triggers are always the highest in tyramine.  Tyramine being a trigger for individual attacks, but not a trigger for the core cause of our condition.  It's good you had such a long time pain free.  Diet can definitely make a positive difference. :)  

    Our cycles change over time.  I've gone 2 years without a single attack, then out of the blue I had 2 cycles in one year.  It constantly changes.  (as does our brain chemistry).