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.

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


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!!

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


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.      

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

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, 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   

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

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


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

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



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!!!   

Joni

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

Joni   

Jimi knows everybody in Madisonville.

Pretty soon they're gonna change it to Jimiville.