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ninja mom

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A ? for chronics
Jul 23^rd, 2008 at 11:17am

I seem to be in a cycle within a cycle-if that makes any sense. Chronic since Feb 2005-daily hits ranging from 3-8 per day mostly at the lower end of the Kip scale-3-4. The past two days I have been slammed by 4 major hits per day (Kip 9+) and this really sucks. O2 alone doesn't kill these, and triptans are contraindicated because of cardiac reasons. Embarrassed

My question is: do the other chronics here experience this as well? What do you do for this cycle within a cycle?

PFDAN y'all,
kathy

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nani

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Re: A ? for chronics
Reply #1 - Jul 23^rd, 2008 at 11:26am

ninja mom wrote on Jul 23^rd, 2008 at 11:17am:

I seem to be in a cycle within a cycle-if that makes any sense.

High cycles ... ugh ... I know them well.

I get them, and just recently discovered that another issue may be triggering the high cycles. Which is why O2 won't kill mine either.
Are you having any sinus issues, Kathy? I ask because that seems to be what makes my high cycles happen. I have a form of neuralgia (which mimics CH) that is caused by structural issues in my sinus'.

Call me (or PM me your number again) if you think this may be your issue. I can offer a little assistance.

BIG hugs, sweetie, nani

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Here I sit between my brother the mountain and my sister the sea. We three are one in loneliness, and the love that binds us together is deep and strong and strange.~Kahlil Gibran

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Gator

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Re: A ? for chronics
Reply #2 - Jul 23^rd, 2008 at 11:51am

Kathy, many of us do have "high cycles" where there is an increase in the frequency and severity of the hits. For me, I stay close to my O2 tank and keep several syringes of trex primed and ready to go along with a good supply of coffee/energy drinks and ice packs. The combination of slamming an energy drink, O2 and an ice pack to the eye and back of the neck seems to work fairly well. Also, I try to stay as close to my normal sleep schedule as possible and am more vigilant in avoiding situations that might trigger an attack. Beyond that, like the Steve Winwood song says, you just "Roll with it, baby."

If you can't take triptans or ergot compounds due to cardiac risks, you might try olanzapine aka Zyprexa. Several people here have had good results using this as an abortive.

Sorry to hear you are getting pounded. Hang in there and remember that this, too, will pass.

Mike

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thebbz Ex Member	Re: A ? for chronics Reply #3 - Jul 23^rd, 2008 at 12:49pm Hi Kathy, Big bunch of juju vibes for you. I dont know about chronics. I'm not chronic but..... My thoughts are more why the cycle in a cycle. Watch the triggers. Maybe something is triggering this. Wish I could help more. all the best thebb
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BarbaraD

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Hugs to ya

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Re: A ? for chronics
Reply #4 - Jul 23^rd, 2008 at 1:03pm

Yep -- I'm in a high cycle now and it does suck.... Hopefully I'm on the downhill side of this "cycle" but they do happen....

O2, Energy drinks, coffee, ice packs..... and ride it out as best you can.... It will end and then you'll be back to the "normal" hits again...

You woudn't think that would be something to look forward to, but......

Are you on an "prevents"? If not talk to your neuro about that... I'm on topamax and that helps me a whole lot except when a high cycle hits.

Hugs BD

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DennisM1045

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One wave at a time!

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Re: A ? for chronics
Reply #5 - Jul 23^rd, 2008 at 1:22pm

I'm not chronic. But I am sending you a bunch of positive VIBES that this high cycle ends soon. Ok, and a Smiley

too.

Someone last year posted a very interesting thread on this topic. I believe it was titled epichronic or chronasodic. Can't really remember and couldn't find it quickly with a search.

Anyway, the author made an analogy between the high and low cycles of chronic sufferers and the cycles of episodic sufferers and postulated that we aren't really all that different.

He compared cyclic variations to mountains on an ocean floor (attacks) and a ship traveling along the surface (time). There are always mountains below the surface of the ocean. It takes a raising or lowering of the ocean level to make those normally not visible to break the surface.

His theory said that the conditions for CH are always present in the brain. However it is only when the conditions are right (wrong?) that there is a change in our natural ability to supress the attacks. Episodics go from no attacks into a cycle of attacks. Chronic sufferers go from a base level of attacks into high cycle. What separates the two is the baseline ability of our bodies to control the symptoms.

I know this doesn't help but I always found the concept interesting.

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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maalstroom CH.com Old Timer Offline ''Dance to my tune''.... the hell I will! Posts: 491 the Netherlands Gender:	Re: A ? for chronics Reply #6 - Jul 23^rd, 2008 at 1:28pm To me, that seems a very interesting analogy, Dennis. If you find it, could you copy/paste it into the new m-board please? I'd love to read it.
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Charlotte

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Re: A ? for chronics
Reply #7 - Jul 23^rd, 2008 at 3:15pm

ninja mom wrote on Jul 23^rd, 2008 at 11:17am:

I seem to be in a cycle within a cycle-if that makes any sense. Chronic since Feb 2005-daily hits ranging from 3-8 per day mostly at the lower end of the Kip scale-3-4. The past two days I have been slammed by 4 major hits per day (Kip 9+) and this really sucks. O2 alone doesn't kill these, and triptans are contraindicated because of cardiac reasons. Embarrassed

My question is: do the other chronics here experience this as well? What do you do for this cycle within a cycle?

PFDAN y'all,
kathy

Yes, Kathy, I get cycles within cycles. I have the ph and occipital neuralgia thrown in there and the ph also has cycles within cycles.

It is a real struggle. I don't know what to say, except "I love you."

Can you use red bull w/the heart problem or is it out?

Charlotte

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Barry_T_Coles CH.com Alumnus Offline Posts: 2073 Karratha\|,West_Australia Gender:	Re: A ? for chronics Reply #8 - Jul 23^rd, 2008 at 11:47pm Hi Kathy You may be interested in the post I have just done on the meds board "I'm convinced" it's not perfect but it helps. Cheers Barry
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MJ CH.com Hall of Famer Offline Posts: 1205 x1\|\|USA\|usa\|299\|85\|MN Gender:	Re: A ? for chronics Reply #9 - Jul 24^th, 2008 at 2:53am Quote: It is a real struggle. I don't know what to say, except "I love you." Charlotte That made me smile. Way to go Charlotte. Sorry I cant help either Kathy as my chronic periods were allways high cycled.
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Jill

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Re: A ? for chronics
Reply #10 - Jul 24^th, 2008 at 3:59pm

Cycles within cycles.. I hate that part! You get in a 'routine' and 'used to' the hits that come and then the beast changes the game..

It amazes me that other chronics, all clusterheads actually, can understand exactly what you mean even when you may not. So cool.

I am also reaching a high cycle and it does bite, the hits start coming back to back and they are all on the high end of the scale.

I cannot offer much but lots of vibes and understanding sent your way.

I do hope that all calms down soon.

Jill

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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."

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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: A ? for chronics Reply #11 - Jul 25^th, 2008 at 5:26pm It could just be the horrendous smoke from all the fires we've been dealing with for the last 5 weeks too, Kathy. I wouldn't be at all surprised if the bad air quality doesn't have a lot to do with it. Linda
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ninja mom

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Re: A ? for chronics
Reply #12 - Jul 26^th, 2008 at 3:03am

Thanks y'all! Linda, you may well be right-our air quality has been in the dager zone off and on since June 21. It is wrecking havoc with my sinuses. I always carry an energy drink with me (don't leave home without it )

Went to buy a Rockstar Zero Carb at the corner market the other day. They had none in the fridge but I found a small stack of them displaed on the front counter. Figuring I could pack a couple on ice I grabbed one can. The clerk asked me if I knew what it was. I said "Of course! It's my favorite energy drink"

She was laughing as she unscrewed one end of the can...they were stash cans for "stuff".

Ordinairly I would have found that hilarious. But right now my sense of humor seems to have taken a vacation.

Thanks again, and I wish all y'all
PFDAN,
kathy

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