I'm now getting much closer to a clear head as this cluster cycle now appears to fading out.

FYI - i'm still taking my Verapamil 80mg 3x a day. Haven't taken a Sumatriptan in nearly a month. Cycle started beginning of October.

The daily remaining cluster traits at this late point in my cycle appear to be -

Mildly blocked nose on cluster side for about an hour of the day.

Slight discomfort on cluster side above eye & side of nose (like the beast letting me know that i still have the condition going on but not in a painful or particularly uncomfortable way) only really noticeable at certain times of the day.

Think i'm ready for the Beer test?

With Christmas in 4 days and after over 2 months without a drink of alcohol i'm really hoping I can have a few drinks over Christmas without ruining my recovery.

Obviously wouldn't be drinking very much as i'm yet to taper down on my Verapamil. If anyone has any thoughts on when to taper that in relation to what i mentioned of my remaining symptoms too, please chip in.

Hope everyone is ok and not feeling too bad and that their preventative of choice is sorting them out.

There is not disadvantage to staying on Verap for 2-3 weeks post last attack.

Personsally, I'd rater go into the holidays dry vs. finding that your cycle isn't ove yet. But in the end, it's your head! <bg>

If you do try it, do so at home with all your abortives lined up incase the beer test fails.

The choice is yours...

My standard was always 2 weeks pain free and I'd start to wean off my prevent, lithium. By the time I hit 600 I'd know if beasty was gone. I say power down a cold, tall, frosty mug......but have the 02 primed and ready!!! ;)

Joe

Yeah i haven't had any painful attacks in about a month now since getting the verapamil dosage right and it building up in the system- it's just been shadows/twinges/pressure periods that have been slowly ramping down in intensity/discomfort with each week.

I was just hoping if i did this beer test it wouldn't stir things back to their worst point again as i've come so far since those awful pain weeks in this cycle.

I wish I had a guaranteed right answer for you on this one.... :-/...CH is so freaking personal in how it treats each person. I wouldn't think just taking a single drink would launch you back into a high cycle, neither can I guarantee you it won't. Still so danged much we just don't know.

Joe

Hi jish,
From my own experience.I think beasty is still hanging
around, just waiting for you to make the wrong move.
It's best to keep one step in front of him, and wait till
your head is clear of all signs of the  [smiley=evil.gif]

Cheers, Hoppy.

If I was in your shoes I would wait it out. I love a good beer and a good whisky as much as the next person (I recommend a good trappist ale or Samuel Smith's Oatmeal Stout and/or Bushmill's 16yr old single malt during this time of year). That being said, I have done a couple new years's and Christmas's completely sober because of shadows or the last attack being too recent. 

Hey guys, sorry long time no update.

The alcohol test worked fine so far-

Had 1 beer on the 23rd Dec  - no problem

Had 3 pints of beer on 24th Dec

Glass Of Champagne and 1 glass of wine 25th Dec

NYE - drank several canned beers interspersed with waters and redbull.

I haven't really had any problems from the alcohol but i haven't returned to regular drinking as i'm still on Verapamil as i'm kinda precautious and my head still has that very faint tightness/mild pressure/un-clear feeling to it.

After speaking to my doctor -I'm gonna taper down to 120mg next week. Would of done it this week but i've had a blocked nose on that side this week due to weather pressure making the very mild sinussy symptoms more pronounced. Ginger beer seems to calm this.

The ride out of this cycle has been as if my cycle is fading away, getting weaker and attacks getting further apart (well you can't really call them attacks because they are masked by Verapamil but you can still sorta tell). Bearing in mind this cycle began in October, it seems that it must be going out as it began.

Sound normal? What do you recon Cluster Posse?

Cycles fade out for different people in different ways. For some the frequency just drops off over time, for others the intensity just drops off and others go out with one last major CH. It even can vary between cycles for some people.

So, like so much with CH, what is normal is very much subjective.

My cycles always faded in...then faded out again.

Joe

Mine go out with such a bang I'm left face-down on the deck almost afloat in tears of joy.

There's a word that describes it perfectly but a moderator says I can't use it.

AussieBrian wrote on Jan 7^th, 2014 at 7:14pm:

Mine go out with such a bang I'm left face-down on the deck almost afloat in tears of joy. There's a word that describes it perfectly but a moderator says I can't use it.

Dang moderators are a pain in the butt!!! ;D  ;D

(PS ignore that edit notation on your post Brian...hit modify instead of quote...sheesh...those moderators aren't very bright!!!!)

AussieBrian wrote on Jan 7^th, 2014 at 7:14pm:

Mine go out with such a bang I'm left face-down on the deck almost afloat in tears of joy. There's a word that describes it perfectly but a moderator says I can't use it.

Golly AB...that describes this jonboy exactly....and I hope that forbidden word is not "exquisite"...which I either stole from you, someone else, or myself...dunno...getting old.

That final, fearsome, scorching hit marked my freedom for the next 2-3 months ....and was always desperately longed for.  The perfect description...in my mind.... has always been a hit of "exquisite pain". Seems an odd description for 'evil" pain...nez pas? Consider: def. 3 marked by flawless craftsmanship or by beautiful, ingenious, delicate, or elaborate execution

The beast at his WORST most demonically evil...but damned if it wasn't goodbye...

Best

Jon

Exquisite is a beautiful word to describe the pain/pleasure of that final hit,  Jon. Check your PMs for the word that got me into strife.

I think mine is a fade in and out type - don't really know what to do about tapering off verapamil though. Really want to do it because the peak stage was mid november (cycle started in mid october).

If i am a fade out type, does anyone know what i can expect tapering off now with the symptoms i list above?

jish wrote on Jan 8^th, 2014 at 6:48am:

If i am a fade out type, does anyone know what i can expect tapering off now with the symptoms i list above?

If the cycle is over then when tapering off a preventive you'll remain pain free. If it isn't over yet then you'll see CH symptoms return which could be shadows or full blown CHs.

I would be fine one day, then not the next, Spring & Autumn
Then after 3mths of getting hit twice a day, they would just
disappear overnight. I was once told by a Professor back in Oxford. That i was a classic case suffering from CH's.

Hoppy.

It seems i can drink the odd beer but i'm definitely still in the cycle so i don't bother.

I dropped one pill from my verapamil and you could tell within a day that the acute shadows i feel got slightly stronger. Also every week or so i have slightly un-painfull stronger shadows, mild head and ear pressure and the other night slight tooth ache which is probably an attack that is being masked by verapamil.

It's been going 3 months now.

My last beer test was a miserable failure.  I'd been pain-free and alcohol-free for about a year when I decided to experiment.  Drank 5 or 6 beers over the course of about that many hours and enjoyed them immensely.  That was a Saturday.  On the following Tuesday the headaches returned with a vengeance and were a daily nightmare for about 2 months.  That was about 6 months ago, and I'm still having the occasional attack. 

Each case is highly individualized, but I know in my heart that those beers were the source of my relapse.  I did find it hard to believe that there was about a 3 day delay in the attacks beginning again, but I'm still sure beer was the culprit.  I'd always been an enthusiastic beer drinker (also a bit of Scotch and vodka) - drank enough of the stuff in my 40s alone to float a battleship.  My clusters didn't really start 'til I was in my 50s, but there were omens of bad things to come (unilateral pain in healthy teeth, etc) I didn't recognize at the time.  Anyway, I've had to swear off my beloved beer and would recommend that anyone who suspects it as a trigger do so immediately, at least on a trial basis.

I've had good results with the D3 regimen and also take 20 mg melatonin daily.  And energy drinks (which I learned about on this site - THANK YOU!) can be lifesavers.  Limited resources, no insurance have prevented me from trying O2 and or prescription medications, but my beast seems to be mostly under control for the time being.

I'm sorry to have rambled on here, but if anything I've mentioned is of help to someone then I won't feel too bad about it.  I do have a few questions of my own and would greatly appreciate any input.  I'm not sure I'm posting in the right place, but here I go:

Is it alcohol alone or other ingredients specific to beer that cause the problem?  Never been much of a wine drinker (and I know reds have a bad reputation with headache sufferers of all varieties), but I might try some vodka if I thought it was relatively safe.

Is there a list of suspected triggers posted anywhere?  I think I've identified a problem with MSG in my case (and that damn stuff can be lurking anywhere in processed foods) and am beginning to suspect that eating liver may be problematic.

Thanks for bearing with me.  Happy new year, and good luck to you all in getting your beasts under control.   

For people who have alcohol as a trigger, a drink will normally trigger a CH within a few minutes. So the cycle starting three days later is quite likely just a coincidence. Don't beat yourself up about you causing it to start.

People normally fall into one of two camps, they can either not drink without it causing a CH when in cycle or there are a minority who find it doesn't affect them to cause a CH. I've seen an odd person post that they can drink some types of alcohol, e.g. spirits but not red wine, etc., but this seems pretty rare.

As with so much CH related, what really counts for you is what works for you. So you can either try different drinks, keep a dairy and see which one(s) result in CHs. Or just skip alcohol until your cycle is over. It is your choice as to what you do.

For other triggers, ones commonly mentioned include stress (either high levels or low levels or changes in stress levels), getting tired, getting hungry, solvents and MSG.

But you need to work out what affects you and a good headache diary can help with that.

fstub wrote on Jan 16^th, 2014 at 12:03pm:

Is it alcohol alone or other ingredients specific to beer that cause the problem?  Never been much of a wine drinker (and I know reds have a bad reputation with headache sufferers of all varieties), but I might try some vodka if I thought it was relatively safe. Is there a list of suspected triggers posted anywhere?  I think I've identified a problem with MSG in my case (and that damn stuff can be lurking anywhere in processed foods) and am beginning to suspect that eating liver may be problematic.

For me, when in a cycle any alcohol is a trigger, it doesn't matter the type or quantity.  I can't even do an ounce of NyQuil  :( .

I don't know of any specific list of triggers but I can tell you my biggies:  Alcohol, Stress (bad or good), and sleep (in cycle it seems every time I go to sleep I get a CH, even mid day naps).  Foods I have learned to avoid during cycles are hot dogs, nuts and nut butters, and chocolate.

Mike NZ wrote on Jan 16^th, 2014 at 11:18pm:

People normally fall into one of two camps, they can either not drink without it causing a CH when in cycle or there are a minority who find it doesn't affect them to cause a CH. I've seen an odd person post that they can drink some types of alcohol, e.g. spirits but not red wine, etc., but this seems pretty rare.

This is me...
Some light beer or even a Margarita is fine, but Red Wine would bring one on in an instant.