Just Saying Hello

[DesertHeadache]

Hello Everyone it has been sometime since I was on and just wanted to check in.  I began episodic clusters in the Spring of 2003 at age 41, no-one in my family had ever experienced these before and it was a painful beginning.  My headaches reappear every 2 years right on time in March or April and last until July or August.  In 2013 they threw me a curve ball and started on December 27th right after Christmas.  Before this episode in 2013, I dealt with them using Prednisone and Triptans it was rough.  I finally went to a Neurologist in January 2013 and was placed on Verapamil, 2 weeks after going on 80mg 3 times a day I broke my cycle.  Now its September 2015 and on Saturday19th, I started feeling that twinge in my nose, what appeared to be a sinus headache every night and very very light pain around my eye and gums on the left side (it always comes on the left side) it was like pressure.  I knew immediately what it was and also knew that 3 or 4 days later the cycle would begin.  Learning over the years and the last time especially, I broke into my stash of Verapamil and started taking 2 tablets every day.  At this point it is very under control, no headaches and I get to sleep at night .  I still get the drainage and the twinge feeling on the left side of my nose but no headaches or pain.  I see my Neurologist tomorrow and get a new prescription for meds.  At the beginning this was very hard on my family and my job, now to me its just like having the flu or something, still feel a little drained but can function.  All of you new Cluster Heads, don't let this get you down and read all of the great posts on here of experiences and what meds work for certain people and which ones don't.  

[ThatHurtsMyHead]

Great post DH...  hmmm,  I should spell that out DesertHeadache,    (my humor is sorta bad I know)

 

Keep us posted how the Verapamil does for you, cycle to cycle.  I found it (seemed) to work great the first year, but the second year not so much.  Instead it (or might have been combined with the Imitrex), triggered a heart condition called PVC's (Premature Ventricle Contractions), that took 2+ years to go away.  Thankfully it went away on it's own, but I'll never touch that verapamil stuff again.  Definitely glad it helps some people though. 

 

Again, great post.

J

[CHfather]

Like THMH said, you're very fortunate, and may your good fortune continue, without side effects.  If this should stop working so well for you, remember that we're here, and that there are plenty of effective things you can do without potential side effects.

[weatherman]

Hey DH,

 

Any idea what started your cycle in December?  I'm at the "trying to figure out new cycles" thing too, and have not come up with any solutions.  Just the nature of the Beast, I guess.

Also, what type of Triptans were you taking.  There's some new one's that are giving may success (thinking 5-MeO-Dalt).

Good luck with the current situation.  Many of us also get the autonomic symptoms without pain.  It's kinda bizzare, but sure beats the crap outta the usual painful outcomes.

 

weatherman