Probable Triggers for Me When I Am in a Cycle:                     

Alcohol
Dark Chocolate
Tea
Aged Cheese
Frozen or Iced Foods/Drinks
Mold
Dust
Seasonal Allergens
Wind
Sudafed
Puppies/Kittens/Small Furry Animals
Fresh Paint
Eye Drops
Fans
Car Air Conditioner
Eye Dilation
Dental Novocain Wearing Off/Dental Work
Sudden Movement after Lying Down
Lying Down Too Long
Removing My Contact on Affected Side
Wearing Contacts Too Long
Moving From Cold to Hot Air Too Suddenly
Moving From Hot to Cold Air Too Suddenly
Stopping/Changing Medications
Exercise That Increases Heart Rate
High Blood Pressure
Body Warming Too Much
Wet Hair in Cool Breeze or Air
Hotel Air Conditioners/Rooms on the Beach (Mold)


My Medications:

Verapamil  (Year round/Double for cycle)
Nasonex (Only during cycle)
Zyprexa (New Abort)
Paxil (25 mg year round)
Amitriptyline (10mg year round)

Once, during a particularly bad cycle where I was having multiple headaches a day for a long period, my blood pressure was high (even with the Verapamil) so my doctor added another BP pill (Corgard) and it helped tremendously.  So now I keep a check my BP.

My doctor told me I could use Nasonex more than prescribed during this time if needed.  When I am starting a headache, I give it an extra shot and it often helps.  (I do this instead of Prednisone if possible)


Other Observations during My Cycle:

Can’t Wear Headbands/Glasses/Hats
Painful to Lie on Affected Side
Must Keep Head/Face Covered If Cold Outside
Smoking During HA Causes More Intense Pain
Sore Swollen Head Sensation on Affected Side
Sensitive Skin on Affected Side
Painful Stiff Neck on Affected Side
Painful Stuffy Ear on Affected Side
Eye/Head Pressure on Affected Side
Stuffy Nose on Affected Side
Sore Teeth/Gums on Affected Side
Pupil Size Difference on Affected Side
Generally In a Mental Fog during Entire Cycle

Helpful for Me:

Keep Daily Schedule/Movement/Routine Going
Keep Moving During HA
Breathe Lamaze Method
Stay Calm
Chiropractor/Massage
Log Headaches to Learn Pattern
Watch Clock for *Half Life

Note:
The only thing I know of that will start a cycle for me anytime is quitting or changing some medications (Antidepressants, particularly SSRI’s, Steroids). 

It is also possible that staying in an older beach hotel (mold in window air unit) for an extended period of time or living with a new puppy may cause a cycle.  It has been hard to determine due to the fact that I usually have at least one cycle every year regardless of what I do and it is easy to be near that cycle and blame it on the mold or puppy.  The longest I have gone pain free is 2 years when I started Verapamil.

Zyprexa is new to me this time and has worked well.  It is a 24 hour pill and does keep me pain and shadow free for 24 hours, though, a little loopy at first.  More later.

*Half Life is what I call the first moment during my HA that the pain stops accelerating and starts decreasing even the smallest amount.  I know the worst will soon be over and it is de-escalating.  Much like watching the monitor with labor pains.  The time for me is usually about 30-40 minutes until halflife.  Knowing that the next 30-40 minutes will not be quiet as bad and there will be an end to it brings hope.  Of course, this is the pattern if I don’t have an abortive or it doesn’t work.
:)

Thanks....I wondered about that deal with changing meds.
  My cycle started two months early this year, and I had taken some prednisone for poison Ivy, It was the first time it affected me unfavorably, so I quit it.
   I was wondering if that could have been a trigger for me.? 
   Had not heard of Zyprexa...Is it new?
  My Verapamil is not working as good as it did at first, may have to find an alternative.   lorac

lorac wrote on Aug 28^th, 2009 at 3:44pm:

Thanks....I wondered about that deal with changing meds.   My cycle started two months early this year, and I had taken some prednisone for poison Ivy, It was the first time it affected me unfavorably, so I quit it.    I was wondering if that could have been a trigger for me.?     Had not heard of Zyprexa...Is it new?   My Verapamil is not working as good as it did at first, may have to find an alternative.   lorac

Stopping Prednisone would certainly do it for me!  I have just started the Zyprexa and it has been great so far.  Keeps me pain and shadow free for 24 hours so far.  You only take it when you are getting a headache, but I just took a half of one a few minutes ago for shadows that started and it has already helped.  I'm still experimenting, but so far, so good!! 

I used to think that I had found triggers. One by one, I discovered that I was mistaken. I've been chronic for over 13 years, so I've had the time and the motivation to test them. (not saying you are wrong, just relating my experience)

Eventually, over the years I learned that the hits were going to come - almost regardless of what I did. The right preventative and abortives are the only answer for me.

Not counting the food related items, many of the items on your list actually helped me to cope with my hits.

Things like moving from warm to cold, frozen/cold/iced drinks, cold air conditioning, getting really chilled in a strong cold wind (or big fan) and vigorous exercise were all things that I relied on to help me.

It is fortunate that you can avoid having attacks by avoiding the things on your list. Hopefully others can too, but my experience on this board tells me otherwise.

Marc

Marc wrote on Aug 28^th, 2009 at 6:12pm:

I used to think that I had found triggers. One by one, I discovered that I was mistaken. I've been chronic for over 13 years, so I've had the time and the motivation to test them. (not saying you are wrong, just relating my experience) Eventually, over the years I learned that the hits were going to come - almost regardless of what I did. The right preventative and abortives are the only answer for me. Not counting the food related items, many of the items on your list actually helped me to cope with my hits. Things like moving from warm to cold, frozen/cold/iced drinks, cold air conditioning, getting really chilled in a strong cold wind (or big fan) and vigorous exercise were all things that I relied on to help me. It is fortunate that you can avoid having attacks by avoiding the things on your list. Hopefully others can too, but my experience on this board tells me otherwise. Marc

Hey Marc-
You must have overlooked the heading for that list..."Probable Triggers for ME When I Am in a Cycle."  Then on down, I have stated exactly what you said...that a couple of things MIGHT start a cycle but that I get them anyway so it is difficult to tell.  I have had clusters for 25 years and there are 9 others in my family that are affected.  Each of us have our own little triggers DURING A CYCLE, but there are also many similarities.  It really helps us to share that info, so I was just passing it on hoping someone might be helped.  I did not expect everyone to be the same and did not intend to state it as facts.  I thought I was careful to identify that they were MY characteristics and they certainly happen for me.  I have been logging my headaches for about 15 years.  I apologize if it was confusing.  Also, we are all episodic in my family and I know nothing about chronic.  I do think it is good that you stated your perspective because someone may be helped by that, too.   :)   

My perspective is like Marc's.

After 29 years of episodic CH, I don't believe there is any external trigger that will start a cycle for me.

During a cycle my triggers that will induce a hit are alcohol (of course, that's no big honking revelation, but WOW did I learn the hard way), sleep, including naps, and one that isn't probably mentioned much here, or isn't a factor for many people: meditation.

Lorac,

when Verap became less effective for me I tried Kudzu.  It's all natural and doesn't have the side effects I was experiencing with Verap.  The worst is a little bit of gas, but I'll take that.  I've found it to be at least as effective as the Verap, and most of the time better than the Verap did when it worked well.  There is an extensive post on the old message board about it.  I don't have time to look it up right now, but it isn't hard to find if you look for it.

Jerry

bejeeber wrote on Aug 30^th, 2009 at 10:24pm:

My perspective is like Marc's. After 29 years of episodic CH, I don't believe there is any external trigger that will start a cycle for me. During a cycle my triggers that will induce a hit are alcohol (of course, that's no big honking revelation, but WOW did I learn the hard way), sleep, including naps, and one that isn't probably mentioned much here, or isn't a factor for many people: meditation.

You and Marc are so lucky that nothing triggers a cycle for you, however, I suppose I am lucky, too...that a change or stop in those particular medications is the only thing I know will actually do it.  It took us years to figure that out, so now I know better.  It is the only cycle trigger for many in my family.  We aren't very lucky with the triggers DURING a cycle, though!  Yes, alcohol, sleeping, or napping is an enemy for sure with us, too (in a cycle).  Years ago, doctors and readings mentioned clusters being a "vacation headache" in that people apparently had them when they relaxed.  I haven't heard that in years and it doesn't apply to me, but it reminds me of your meditation. Interesting, though. 

Good luck!
Joni

Joan,
Sorry, I didn't mean to insinuate that you had said something wrong.  I didn’t mean to offend.

Yes, I accurately read what you said - you were very clear. I was assuming that your 25 years worth of Cluster Headache experience was your guide in providing a list of "Probable triggers for ME when I am in cycle."  After 25 years, I figured you pretty well nailed what you need to avoid in order to avoid an attack while in cycle. I wasn’t even thinking about jump starting a new cycle.

My intent was to discuss the difference in our perception of "good/bad" for Clusters, based on my own experience and what I’ve read from others on this site for the last 10 years.

You indicated that you have 9 episodic Cluster Headache sufferers in your family. All I can say is, Wow, that’s amazing.

Hope you find what works reliably for you!

Respectfully,

Marc

Marc-

No apology necessary.  I just wanted to make sure I didn't assume anything for others.  My husband says the worse thing about the internet is the lack of tone and inflection in writing...you can say one thing and it can sound like another to someone else if they project a different tone while reading it. 

My list does looks crazy, but I have had people ask me so many times that I finally put it on paper.  I hope that it can help someone else if they are new and wonder about what caused theirs.  Maybe nothing on my list does, but they can be vigilant until they know.  You know, the detective work we all have to do! 

You are kind to reply.  I am jealous that you don't have so many triggers, but happy for you!  I seem to be one of those Scandinavian decent body types (red hair/freckles/fair skin) that is extra sensitive and comes with a hosts of things to deal with that aren't serious, just a nuisance.  At least that is what my doctor says.  I had never heard of that.

Hope this finds you well.   :)

-Joni   

Marc, once again-

I forgot...yes, my family is cursed with them for sure.  Ten in all.  Three are deceased.  Out of the seven left, one has changed over to migraines recently and the two youngest don't have good patterns yet.  Three of of us have had regular patterns for years and years and last but not least is a nephew that had regular patterns for years, but to be quite honest, probably is doing "other things" to stop his lately.  We have all adapted rather well just by seeing the others go on with life as usual.  That's the good thing about having them in the family.  My sister has them the worst and she is the oldest, now.  Time will tell more of the story.

-Joni   :)

Forgive me if I missed it, but I didn't see any mention of using oxygen as an abortive.

Joni.......what part of Ky are you from? I live in the western part (Madisonville). As does LindaH.

Brew-

I tried it years ago without directions, so therefore, without success.  I guess I am just thinking if Zyprexa works then I don't have to bother with trying the explaining O2 to my doc, getting it, replenishing it, worrying about smokers, and carrying it with me.  It is so easy to take a pill as long as it works.  However, I am so pleased to see on this site that it works so well if all else fails for me.  Do you like the O2 as well as the others?  Thanks for checking with me about it!  Maybe I'm making more out of it than there is...last time, it just seems like trouble and I was a little afraid of the tank.  Silly me.  :-[

Joni   :)

Jimi wrote on Sep 4^th, 2009 at 10:43pm:

Joni.......what part of Ky are you from? I live in the western part (Madisonville). As does LindaH.

I live in Lexington.  I went to college with Laura Fazenbacker from Madisonville.   :)

I'd rather use O2 than any other abortive. They bring it to my house if I desire.....I carry it in my vehicle....up until 2 months ago I was a smoker. No biggie.....just used common sense in handling it.

Sure not afraid of the tank.....I love those damn things.

Racer1_NC wrote on Sep 4^th, 2009 at 10:50pm:

I'd rather use O2 than any other abortive. They bring it to my house if I desire.....I carry it in my vehicle....up until 2 months ago I was a smoker. No biggie.....just used common sense in handling it. Sure not afraid of the tank.....I love those damn things.

Thank you so much for sharing the encouraging remarks about O2.  I always live in fear of nothing working and it is so good to know that about the tank.

And a BIG CONGRATULATIONS on being a non-smoker!!!   ;D

Joni

I'm with Racer on this one. O2 is my absolute first choice. I keep a tank at home, one in the car, and one in my office. The only time I'll use another abortive is when I have to be "on" - usually meaning on stage. That doesn't happen too often.

Works fast (you have to do it right and have the right equipment), and absolutely no side effects.

Read the oxygen info link at the left of the screen.

Thanks, Brew!  I'll read it again.  It is comforting to know!

Joni   ;D

I know the Fazenbaker family. If you ever get down this way you gotta stop. Or if I can get tickets to see a game this year, I will let you know.

Jimi knows everybody in Madisonville.

Pretty soon they're gonna change it to Jimiville.

Jimi wrote on Sep 4^th, 2009 at 11:20pm:

I know the Fazenbaker family. If you ever get down this way you gotta stop. Or if I can get tickets to see a game this year, I will let you know.

I am never over that way that I know of, but you let me know if you come this way! 

Joni   :)