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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Questions about progression and severity of pain
        
(Message started by: 1968eric on Apr 26^th, 2005, 12:45am)

Title: Questions about progression and severity of pain
Post by 1968eric on Apr 26^th, 2005, 12:45am

I realize no two people suffer exactly the same way from CH, but I'm interested in hearing about the experiences of others during the first year or more of suffering from CH.

For those with episodic CH, was your first cycle different from the others in any way? Was the pain less intense? More severe? The same as subsequent cycles?

Did the number of HA per day increase in subsequent cycles from the first?

Do your cycles usually end suddenly or do you start getting more and more HA-free days as the cycle ends?

Do all CH sufferers experience the kind of pain (10 scale) that makes them bang their head, pull their hair out, scream, etc? Or do some sufferers never experience more than 7 - 9 scale pain that makes them pace, impossible to sleep, rock, and groan, etc, but not the more dramatic levels of pain I've read about on the front page of this site and elsewhere?

Thanks for answers to any of these questions, or relating anything you noticed about the first cycles of CH being different from subsequent ones.

-Eric

Title: Re: Questions about progression and severity of pa
Post by sandie99 on Apr 26^th, 2005, 2:55am

Eric,

back when I was episodic, my first cycle was like clock.
Attacks came at 8, 10, 12, 14, 16, 18, 20, 22, 01, 03. CH picked 3-6 times to make my life hell...

But what comes to the pain itself, the intensity and severeness has always altered a lot, without a clear pattern.

Now when I'm chronic, things are different. Ch comes in unregular hours, pain varies, etc. I'm quite qood at tolerating pain. I hope that I haven't had a kip 10 yet. But 9 I know too well.

Best wishes,
Sandie

Title: Re: Questions about progression and severity of pa
Post by marty on Apr 26^th, 2005, 7:02am

Hi Eric

I have been episodic for 10+ years. As far as I can remember the attacks have always been pretty much the same. My cycle ends as fast as it comes.

As to pain levels, I have never experienced a Kip-10 but then again, I tend to hit walls and other objects with my fists from time to time. I also drink steaming hot coffee - so hot that I sometimes get blisters on my lips - that may be a distraction?

When it comes to dealing with the pain itself, I think that it also depends on what kind of person you are. I believe that we all have a special routine that we follow when we get hit; some stick their head in the freezer, others (like me) drink steaming hot liquids, some take hot / cold showers others do physical activity stuff etc, etc.

Another factor that I think is important is that during a cycle, we get more and more sleep-deprived and as time goes, we can not re-charge (by sleeping) and our will to fight becomes weaker.

I'm in awe when it comes to the chronic sufferers since they find a way to overcome and deal with this year after year. I hope and pray that I will not have to experience a chronic condition because I am not sure that I am as strong as they are.

Marty

Title: Re: Questions about progression and severity of pa
Post by thomas on Apr 26^th, 2005, 8:59am

This is my 14th year. In the early days my cycles were very short and the CH's were less severe. My 3rd year was when I really got suicidal because the pain was much more intense and the CH's were more frequent. That is when I got a diagnosis. For the next several years the cycles got longer and more intense, I attribute this to the introduction of imitrex. For the last 2 years I have been off imitrex and my cycles are a lot shorter again and the CH's are less painfull than in previous years. Don't get me wrong, they still suck but I'll take a 5 over a 9 anyday.

Title: Re: Questions about progression and severity of pa
Post by Bob P on Apr 26^th, 2005, 9:37am

Episodic for 34 years.

Don't remember my first clsuter cycle. Do know that for the first 20 years I had a 4-6 week long cluster cycle every 8 or 9 months. 2 to 3 attacks a day. All the same. 0 to 10 in 5 minutes. Last about an hour. 10 to 0 in 2 minutes. I either had a full blown cluster or nothing. There was no in between.

14 years ago the cycles jumped to every 2 years but the cycle itself became unpredictable. Since then I've had remissions over 3 years but also had cycles that lasted 15 weeks. Just don't know anymore.

Title: Re: Questions about progression and severity of pa
Post by Ruth on Apr 26^th, 2005, 9:43am

I am a 36 year suffer, and my experience is almost just like Bobs.

Title: Re: Questions about progression and severity of pa
Post by BlueMeanie on Apr 26^th, 2005, 1:49pm

Hi Eric,

First cycle 1979. Longest remission 18 months. There have been around 6 years worth of double cycles. Spring/fall. Lucky for me, it's now been 15 months and hoping to break a new record for remission.

Each cycle is always pretty much the same. Without Imitrex, there is no such thing as a hit below KIP 8. Average 3-4 CH's a day. Shortest cycle 8 weeks, longest cycle 18 weeks. For me, Imitrex doesn't make a difference as to how long the cycle last. I do get a few more hits than normal when I use Trex though. It's all up to the Beast when it ends. I was using Trex during the shortest cycle and during the longest cycle.

Cycles start and stop on a dime. One day I get a CH and weeks later I get my last one. I hardly know when it's gonna start or stop. Shadows gives me a slight clue but that isn't even for sure.

PF vibes,
Bob

Title: Re: Questions about progression and severity of pa
Post by Kevin_M on Apr 26^th, 2005, 2:51pm

For those with episodic CH, was your first cycle different from the others in any way? Was the pain less intense? More severe? The same as subsequent cycles?
I'd say less intense because I remember riding a lot of them out, about an hour each, still, very painful.
The first time I saw a doc for them, got imitrex but definitely not enough, so he supplemented fioricet also which worked back then while the prevent search started. The fioricet subsequently quit working..

Did the number of HA per day increase in subsequent cycles from the first?
Yes, more night time hits, usually three, four including morning, daytime frequency also about three. I don't remember the first cycle having hits that often.

Do your cycles usually end suddenly or do you start getting more and more HA-free days as the cycle ends?
The morning hits are first to appear in the beginning, followed by the night time ones, then the day hits start. The daytime disappears first, and the morning ones last. Mine are always 6-9 month yearly cycles and this time, with sparse use of trex, I am on my way to 7 months anyway.

Do all CH sufferers experience the kind of pain (10 scale) that makes them bang their head, pull their hair out, scream, etc? Or do some sufferers never experience more than 7 - 9 scale pain that makes them pace, impossible to sleep, rock, and groan, etc, but not the more dramatic levels of pain I've read about on the front page of this site and elsewhere?
As some have stated above, without aborting there's no stopping the limit of pain. Since having a useful prevent, the oncoming seems more gradual and I have been able to start turning it around by a 7-8 with abortives when they do occur. When mistakes are made, they will surpass that.

Kevin M

Title: Re: Questions about progression and severity of pa
Post by ErikY on Apr 26^th, 2005, 4:13pm

I have had them since I was 15, I am now 30. I get them every 5 years.

From what I remember, my first cycle I had no clue what I had. I got several per day, it seemed like as much time per day with them, as without them.

This past cycle, I got 2 per day for the most part, one or two days with 3-4 per day.

I think for me as I have gotten older, I get less hits per day, BUT, the pain is far worse now then it was when I was younger.

When I was younger I could get through them without taking anything, or doing anything to abort them other than taking OTC which does not work.

No longer, I now need to abort!

Title: Re: Questions about progression and severity of pa
Post by maffumatt on Apr 26^th, 2005, 6:32pm

My first CH was in 97, I think. I was working in the woods and thought the heat was causeing them. It wasn't but it did bring them on and increase the kip. Pain has a funny way of slipping out your memory. I am not sure if they hurt more back then or not. I also cant remember how long or how bad the cycles lasted back then.

My recent cycles last 8 to 10 weeks, at first they are like bad shadows that build up to a full blown CH after a week or two. I then get 3 to 5 a day ( i think the meds increase the number per day but lowers the severity). This lasts for about a month. They stay around 7 or 8 most of the time, but I get 9s or 10s for around a week, peaking? Then it goes back to 7 or 8 for a week or so and tapers off again.

Title: Re: Questions about progression and severity of pa
Post by E-Double on Apr 26^th, 2005, 7:05pm

Quote:

For those with episodic CH, was your first cycle different from the others in any way? Was the pain less intense? More severe? The same as subsequent cycles?

My CH started in Spring 1995...always one bad one in the middle of the night....for about 4 weeks then would leave throughout the summer and return in the Fall then leave in winter and return like clockwork...never knew what they were until last yr finally got diagnosed

Quote:

Did the number of HA per day increase in subsequent cycles from the first?

Yes! As far as I recall they started with one then maybe 2 again only @ night until last yr....

Quote:

Do your cycles usually end suddenly or do you start getting more and more HA-free days as the cycle ends?

They used to.....This cycle never ended....My wife and I found this place in the beginning of June 04 after dealing with a beast beginning to go heywire for a couple of months......So again they used to end as suddenly as they came. The only thing I knew for certain was that for 2 relatively brief periods in the year I would go sleepless and dread the night.....I'll let you know if it ends ;)

Quote:

Do all CH sufferers experience the kind of pain (10 scale) that makes them bang their head, pull their hair out, scream, etc? Or do some sufferers never experience more than 7 - 9 scale pain that makes them pace, impossible to sleep, rock, and groan, etc, but not the more dramatic levels of pain I've read about on the front page of this site and elsewhere?

I have both.....To be honest what made me finally seek help and a diagnosis was the fact that none of my old tricks were working anymore....coffee NO, tight bandana NO, steam NO, ice NO,...nothing so I figured something was wrong......This is my first cycle EVER using HA meds....I will never know IF the meds are the reason that I went from brief 1 month-6 week tops cycles to now recently becoming chronic or if it is just the nature of my particuliar beast.....don't really care; just learned to cope!!! Someday I will try to detox again.... Just can't seem to find the "right" time.....when I do I'll be sure to try something else.....However, I'm functioning fairly well considering the battle so I do not complain

Quote:

Thanks for answers to any of these questions, or relating anything you noticed about the first cycles of CH being different from subsequent ones.
-Eric

You bet Eric!!

Eric ;)

Title: Re: Questions about progression and severity of pa
Post by purpleydog on Apr 26^th, 2005, 10:11pm

My first cycle wasn't any different from subsequent cycles. My very first HA was what I would term annoying pain wise. Second one was a 10, and they stayed that way, everytime I went into cycle, which was every 16 months for 16-18 weeks. They started off slow, and ramped up to 8-10 times a day, then ramped back down.

The pattern stayed the same until last April 1st, when I went into cycle and haven't stopped since. The pain level is from 6 - 10. I ramp up to 8 or 9 hits a day, then back down to 2-3. The only difference I've noticed is that alcohol and cigarettes are no longer triggers.

I guess being chronic is good for something.

Title: Re: Questions about progression and severity of pa
Post by yikes-another-one on Apr 27^th, 2005, 1:17pm

in 1996 and 1997 I had headaches that would go away when I went to sleep.
Then suddenly I started getting a headache every other hour, from Sunday, Monday, Tues, and Wed.
then I would be headache free until the next Sunday.

that happened in March and April for 3 years.
Once in October, once in December.

then I started getting random attacks through the entire year, and now I am on prevenatives in case I happen to turn "chronic" but I have had pain since Sept, 2004.

In the beginning the pain was different levels.
Always more than a 5 but less than an 8.
When it turned random and I got my first level 10,
and since then it is anything goes.

I didn't keep good notes about it,
and always was in denial about the pain,
even now, if I don't write down a pain level
when I notice it, later I say, "it couldn't have hurt that bad." But you know it really does.

Title: Re: Questions about progression and severity of pa
Post by 1968eric on Apr 27^th, 2005, 6:46pm

I don't get what's happening with me. I'm all but absolutely certain beyond a doubt that it is CH. I have all the symtoms. I listed the symtoms in my intro if anyone is interested. Basically, I had nightly HAs for around two months that woke me up at the same time. The only daytime ones I'd get were triggered by strenuous exercise - exactly 1.5 hours after finishing a run I'd get an H/A which was about 2/3 painful as the nightly ones.

Now it's been a few days since one woke me up, but I've been getting random ones at various times in the day, but they are nowhere near as painful as the ones that were waking me up every night, tho the pain is in the same place and otherwise "feels" the same.

To complicate things, I finally got referred to a neuro who I see for the first time this Friday. She will be the 5th doctor I've seen for this. During the 2 months I was getting hit every night my docs were trying everything from antibiotics to indomethecin but never looked at CH until now. My only concern, being military, is that I'll have to jump through the same hoops with another set of doctors when they come back - supposing this is the end of my first cycle of CH.

In my reading, I've seen shadow HAs mentioned, but I'm not clear on what they are or how they come about in relation to CH cycles.

Based on how I've seen docs act in the past, I'm almost certain that when I mention the random, less painful HAs over the last few days, she'll latch on to that and not take into account over 2 solid months of classic CH symtoms. At this point, I'd be happy just to get oxygen prescribed because its worked as an abortive.

Title: Re: Questions about progression and severity of pa
Post by BarbaraD on Apr 28^th, 2005, 6:07am

Mine started out episodic and would last about two months. The first month I could tolerate them, but the second month put me down for the count. I'd usually have to do the DHE-IV treatments to break the cycle and then it took a week or so to recover from the DHE.

Then in 97, they just didn't stop and nothing would keep them away. I would hit a 10 in about 2 minutes (right after my eye started swelling shut). I was getting hit numerous times a day and during the night.

About the middle of 99, the neuro put me on topamax and they quit (except for an occasional breakthru). I actually had a life again.

They really don't seem to follow a pattern except to appear out of nowhere and go back there when they're thru with me. Right now I'm taking Melatonin at night so I get sleep (until about 3-4 in the morning) and that helps deal with the day hits.

Coffee and O2 will sometimes abort the early morning hits, but if they go over a 6-7, I hit the cafergot without hesitation.

My neuro is great (he has migraines). He keeps up with headache studies and what's working and what's not working. We keep trying prevents, but so far haven't found anything to stop the darn things.

Hugs BD