Hi All, I'm fairly new on the site and have been reading a lot of the posts, but I haven't seen much about baseline pain/headache. I have ongoing pain around my eye, cheek, and side of head that hovers around a 2-3, sometimes 4/5. I don't always have it, but do much of the time.
I'm curious if others here have the baseline pain like I do in addition to CH HAs.I'm wondering if this is a common issue. I've read in some of the medical pubs that it is common.

Also, I can't touch alcohol without bringing on a major episode. I took the survey here and it showed that many drink. Is that really possible with CH?

I'm a chronic CH sufferer going on 16 months without remission.

-Chris

alcohol big problem i dont post much but read the board like a bible member for 5 yrs.chronic all my life but still drink a beer every once in a while i dont let this thing in my head run my life. I take no meds i deal with this thing in my head He will not concore me.

What it sounds like you are describing are "shadows", a term we use to describe a lower level HA that often presages a full blown hit, or follows a hit.  However, some of us will have them that will last for an hour or more without ever going full blown.  When my prevents are working properly and I've been faithful in keeping up with them on schedule I will often get a shadow that is not worth getting on the O2 or drinking a 5hr Energy to kill it.  Sometimes some Ibuprofen is enough to kill it, or I'll just ignore it.  They are irritating, but not anything to be concerned about for the most part.

As to the alcohol, most episodics cannot drink without it triggering an attack.  Some chronics are able to drink without it causing a prob.  I can't explain it, nor can I speak from experience as I don't drink.  The description you were reading about many drinking was not about people in cycle I can promise you.  That was just a background lifestyle question looking for commonalities.

Good questions.  Keep reading and learning.  Feel free to ask as things come to mind.

Jerry

Callico wrote on Oct 24^th, 2010 at 4:16pm:

Some chronics are able to drink without it causing a prob.

I've been having CHs for just under 6 months now, so it's likely I may be chronic (although I'll need to wait for another 6 months before I can officially meet the definition of chronic).

I am fine drinking beer, wine and spirits, although I "just know" which days I can have a drink (just one) and when I can't. I've only once ever had a CH on a day when I've had a drink.

However once when just getting over a CH someone came near me who had just used an alcohol based hand sanitizer which instantly triggered a new CH.

So maybe there is something, for me at least, that makes me sensitive to alcohol only when prone to a CH?

G'day, Chris, and welcome to the nut-hut. Regarding alcohol and the temptation caused by having it close by, many CHeads get extreme relief by sending their beer to Uncle Brian's Recycling Works where it is returned to the soil in the most inexpensive and environmentally-sensitive way imaginable.

(This information brought to you purely as a public service.)

Mike, you're a lucky man. I've had to swear off going on about a year now.

Aussie B, I would have expected I could have shipped all the unused suds down under.Have a pint for me, would you mate.

-Chris

Mike,

I'm thinking the hand sanitizer has a fragrance that is triggering you rather than the alcohol.  Many fragrances will trigger me immediately and hard, but an unscented sanitizer will not.

Jerry

Everyone seems to experience variations in symptoms and this may be the case.  You mentioned ongoing pain ongoing pain around your eye, cheek, and side of head much of the time.  If this is an almost constant or constant thing you should investigate this thoroughly with your Neurologist.

I can’t say that I experience baseline pain but…
   
Following severe attacks I experience low level/residual nerve pain primarily behind my right eye that can also involve the right nostril, temple, jaw, forehead, and/or scalp.  This can last several hours into the following day but never reaches high levels of pain.  However, this is not almost constant and can be linked directly to experiencing a major attack.
    
Shadows are also experienced occasionally where I have all the twinges of attacks in all the usual places that never blossom into full attacks.  These are more of a nuisance with very low pain levels.  When these occur they are intermittent throughout an entire day and for me typically indicate that an unusually nasty night is ahead.  These are frequent enough to be noted in the journal but do not occur frequently enough to be considered almost constant.
   
I’m with you in the alcohol, it will trigger major attacks and it triggers them quickly.  In my case solvents (gasoline, paint, paint thinner, pesticides, etc.) can also lead to major attacks but not rapidly like alcohol consumption.  I’m not sure I can consider solvents triggers but instead think of them as contributors to increased severity in attacks that occur following their use.
 
burnt-toast
(Tom)                  

Off cycle, I enjoy my blended whiskies, micro brew beers and red wines. On cycle it's almost a guaranteed hit for me.

The baseline pain. On cycle I almost always feel "something" behind my eye and in my ear. It's  a little different from what I call my shadows, where I feel a CH beginning that never really materializes. But when I'm in cycle there is just "something" there....

Joe

Hey Chris,

I also often have the baseline headaches that you speak of.  My neuro/ HA specialist is very aware of them, and did not seem concerned in the least.  Since they are low-level and usually present, I do not take any abortives to try to help, and can tolerate them for the most part (though it is Very annoying). 
I would share with your doc, see if they have any comments?  Always good to let 'em know what's up! 

As far as drinking on cycle (what's a cycle? hah) - I am chronic and do drink... I did not for the first 6 mos of my "ongoing cycle" - at first alcohol did trigger CHs.  I tried one day and they were no longer triggering!   :P  Some chronics can get away with it... I am sure some can't. 

Val

Hi Val!

Been missing you around here!

Jerry

The docs are well aware of my symptoms but are really focusing on the major episodes. Since I'm chronic with no remission as yet other than 3 amazing days I had where I thought I was cured for good. That didn't last long. I've tried a drink here and there, especially when I first started, but no good.
You folks that are episodic have a nice light at the end of the tunnel. I'm sure that doesn't help much for the pain while in cycle, but at least you know it's temporary. Full time 24/7 presents a different outlook. It actually seems most here are episodic, thank god.

It's funny you mention that, I'm episodic, have been for 32 years, and I can't imagine the horror of being chronic. I've met many chronics on this board, and in person, they can't imagine the confusion of being episodic and never knowing when it is you're going to get hit again! ;)

Funny how 2 different people can have such a different perspective. The good news is, for both chronic and episodic, there is hope. keep plugging away, when you find that magic combo of a decent preventative and abortive, it makes it all worth it.

Have you visited   clusterbusters.com   yet?   Alternative treatments that have been producing some pretty impressive results for CH'ers who were struggling with finding relief using traditional methods.

Wishing you peace and some pain free time soon.

Joe

I agree with Joe that it is funny how we deal with this mess.  After 20+ yrs episodic I've been chronic for 8+(I quit counting) and unless they end I'd rather stay chronic.  I know what I'm dealing with, and I've developed a pretty good regimen for dealing with it.  You have not yet gotten a handle on CH, so for you it is a more difficult matter.  To me, when I get a couple of days PF I'm on pins and needles just waiting for it to hit again.

I actually had a break of almost 9 weeks with nothing more than light shadows with a couple of 5's just for fun, but when they hit again I had forgotten how bad they were and had trouble dealing with them again.  I had lost the mindset. 

You'll get there.  Once you find what really works for you you'll just live with it and make the mot of your life between hits.  I guess that is the main thing.  Getting a handle on dealing with it so that you can make your focus on the good times rather than the bad.

Jerry

Hi Chris,

Two years ago I was in a cluster for 9 months.  I thought that I was chronic.  I went to a neoro and got help from her.  She told me that alcohol is a trigger and unless I stay away from it during a cycle, I would continue to put myself in one.  So I stopped drinking (I am not a big drinker, just have 1-2 beers every other month) and stayed on my preventatives and finally saw the light.  The pain went away and stayed on those prevenatives for a few months with no alcohol just for safe measure.  Everybody is different so maybe trying to avoid alcohol, cig smoke, paint smells, etc.  What are you on for preventatives?  I currently am in a cluster and can't seem to shake this with the preventatives.  UGH!  Good luck to you and hoping you can find some pain free days!   :)

Callico wrote on Oct 26^th, 2010 at 10:03pm:

II actually had a break of almost 9 weeks with nothing more than light shadows with a couple of 5's just for fun, but when they hit again I had forgotten how bad they were and had trouble dealing with them again.  I had lost the mindset.  You'll get there.  Once you find what really works for you you'll just live with it and make the mot of your life between hits.  I guess that is the main thing.  Getting a handle on dealing with it so that you can make your focus on the good times rather than the bad  Jerry

Jerry, that's where I am right now. Blessed relief from years of chronic hits, and while I'm grateful, I am waiting for the sequel to come out. I hate sequels.  Blessings. lance

Praying they stay away forever Lance!

Jerry

bradish wrote on Oct 27^th, 2010 at 9:38pm:

Everybody is different so maybe trying to avoid alcohol, cig smoke, paint smells, etc.  What are you on for preventatives?  I currently am in a cluster and can't seem to shake this with the preventatives.

Just as everyone's trigger pattern is different, so it is with preventatives. Sometimes a preventative will work once or twice (as ergotamine and caffeine did for me) but not another time after that. Verapamil in low doses worked for me in the beginning, but only now on much higher doses. Some of the more common preventatives you'll see around here are both Rx and OTC. Things like verapamil, lithium, topamax, even anticonvulsants like depakote. OTC remedies include kudzu, melatonin, Batch's ph diet, nonhaullicinogenics, and energy drinks. O2 of course. It does seem these things are like runaway trains. It's easier to stop them before they get momentum. Prayers are with you. God bless! lance

And thank you, Jerry. I know that and it's a great feeling being surrounded by so great a cloud of fellow sufferer's.

wimsey1 wrote on Oct 29^th, 2010 at 7:56am:

bradish wrote on Oct 27th, 2010 at 9:38pm: Everybody is different so maybe trying to avoid alcohol, cig smoke, paint smells, etc.  What are you on for preventatives?  I currently am in a cluster and can't seem to shake this with the preventatives. Just as everyone's trigger pattern is different, so it is with preventatives. Sometimes a preventative will work once or twice (as ergotamine and caffeine did for me) but not another time after that. Verapamil in low doses worked for me in the beginning, but only now on much higher doses. Some of the more common preventatives you'll see around here are both Rx and OTC. Things like verapamil, lithium, topamax, even anticonvulsants like depakote. OTC remedies include kudzu, melatonin, Batch's ph diet, nonhaullicinogenics, and energy drinks. O2 of course. It does seem these things are like runaway trains. It's easier to stop them before they get momentum. Prayers are with you. God bless! lance And thank you, Jerry. I know that and it's a great feeling being surrounded by so great a cloud of fellow sufferer's.

Thank you Lance for the tips.  Just over a month ago I started Verapamil at 240mg.  500mg made me way dizzy!  So I do 240.  Headaches came everynight like clockwork.  But then the 11pm and 2am ones went away.  I couldn't shake the 5am headaches.  So I thought what if I get up at 5am and just started my day.  I tried it 2 days ago and no headache!  Again this am no headache!  So lets see how long this lasts.  Headache free for 2 days!!!!  Yay!  Thanks!
~Becky