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(Message started by: synergy2120 on Aug 13th, 2004, 9:51am)
Title: Question about chronic
Post by synergy2120 on Aug 13th, 2004, 9:51am
Hi everyone.

Ive just spoken to someone on the helpline from OUCH about the O2 therapy and marc.

I explained that marc doesnt really get a warning when he is going to get an "attack" becuase if he is not having a full on attack he is either having constant shadows or the pain rests at a level 2-3. They seemed to think that maybe it wasnt clusters.

I just need to know if this is the same for other chronics or do you remain PF between attacks?

luv sarah xx  :-/
Title: Re: Question about chronic
Post by pubgirl on Aug 13th, 2004, 10:02am
Hi Sarah

If Marc is in CONSTANT pain between attacks there is a chance he is suffering from several things, the most likely being a condition called Hemicrania continua (this is a constant pain then overlaid by severe Ch type attacks) good link at http://www.achenet.org/articles/6.php

but there is also a chance if he has been taking a lot of OTC drugs he may also have what is delightfully called a  'medication misuse' headache on top of CH. There is another syndrome too called Chronic Daily Headache syndrome but that doesn't really have CH symptoms.

Some sufferers during a very bad cycle have 'shadowing' between the attacks, but I think few of us would actually call it serious pain, more a feeling that the pain is there, waiting to strike.

If Marc is in constant pain, the Ch diagnosis is beginning to look more doubtful

Wendy

P.S. I am on the volunteer on the Helpline today and I haven't spoken to you. Bit confused now!
Title: Re: Question about chronic
Post by synergy2120 on Aug 13th, 2004, 10:15am
Hi Wendy - sorry of to have confused you!! I rang the wrong number and got through to Les who answered my questions!

I have spoken to marc and he says that its more like a face-ache between attacks but that he does know when an "attack" is coming.

All marcs other symptoms look like CH but marc also reminded me that he has constant toothache as well at the mo so that is probably not helping - waiting for his GP to sort out a dentist for him.

Maybe he has got CH plus another kind of headache on top - how much more can god pile on him?! talk about a double whammie, "kick ya when your down" kinda thing!

We have written everything down and im sure Goadsby will be able to confirm it as being CH - hope it isnt but if it is then we know we have tons of support from everyone here and at OUCH uk.

luv sarah xx
Title: Re: Question about chronic
Post by synergy2120 on Aug 13th, 2004, 10:25am
Just read the document on the link.

All marcs symptoms point to CH plus he was on Indomethacin for about 3 weeks with no improvement.

It gets very confusing all these "headaches" - they all seem to overlap in quite a few of the symptoms, no wonder it takes a long time to get diagnosed!

Thanks anyway Wendy xx
Title: Re: Question about chronic
Post by pubgirl on Aug 13th, 2004, 10:35am
Sarah

It's OK, was just a bit worried that for some reason you couldn't access the Helpline. Les is about as knowledgeable as it gets.

You are going to the right place to get the best diagnosis and the best treatment.
Don't panic in the meantime, Marc WILLl get the help he needs.

Wendy
Title: Re: Question about chronic
Post by Prense on Aug 13th, 2004, 10:56am

on 08/13/04 at 09:51:27, synergy2120 wrote:
I just need to know if this is the same for other chronics or do you remain PF between attacks?


For the most part, yes...

I still have little to no warning of an attack though.

Chris
Title: Re: Question about chronic
Post by UN_SOLVED on Aug 13th, 2004, 11:05am
Chronic or not, most of us get PF times between attacks.

I too have little warning. When the pain in my eye starts, I only have minutes before it's full blown !


on 08/13/04 at 10:25:19, synergy2120 wrote:
he was on Indomethacin for about 3 weeks with no improvement.

If the Indomethacin didn't work within the first 6 days, it's NOT going to.

Unsolved <PF at the moment>
Title: Re: Question about chronic
Post by ex_pat_asia on Aug 14th, 2004, 10:15am

on 08/13/04 at 11:05:54, UN_SOLVED wrote:
Chronic or not, most of us get PF times between attacks.

Unsolved <PF at the moment>


Unsolved - How many attacks are normal say in a one week period? Do you have any attacks that are easily aborted or do they all run for awhile?
Title: Re: Question about chronic
Post by UN_SOLVED on Aug 14th, 2004, 11:38am
Most clusterheads get 1 - 3 attacks daily...some may get more. I guess i'm not the 'norm'...If I only get 2 or 3, it's been a good day. I usually get 4 - 6 attacks per day on average. If it hits me more than that...I can't handle it for long....I go get DHE IV infusions.

99% of my attacks are aborted within 15 - 20 minutes with a 4 mg Imitrex injection. O2 won't work (for me). Neither will any other Triptans. Even at 15 - 20 minutes of pain ... it's still very severe.

Unsolved
Title: Re: Question about chronic
Post by mynm156 on Aug 14th, 2004, 2:40pm
I very rarely get any warning.  I do have painfree days but they are once twice a week onlu and shadows can hang around quite a bit.

MYNM156
Title: Re: Question about chronic
Post by Jonny on Aug 14th, 2004, 2:49pm

on 08/14/04 at 11:38:43, UN_SOLVED wrote:
Most clusterheads get 1 - 3 attacks daily...some may get more.


What would you say to someone that claims to have CH and says they get 20 HA's a day, most of which only last four mins?.............(This is not a trick question, just your thought on this)

....................................jonny
Title: Re: Question about chronic
Post by UN_SOLVED on Aug 14th, 2004, 3:00pm
Jonny,

I would tell them to get a neuro ... and ...
I would say that they have CPH (Chronic Paroxysmal Hemicrania

Unsolved
Title: Re: Question about chronic
Post by Margi on Aug 14th, 2004, 3:01pm

on 08/14/04 at 14:49:47, Jonny wrote:
What would you say to someone that claims to have CH and says they get 20 HA's a day, most of which only last four mins?.............(This is not a trick question, just your thought on this)

....................................jonny


Me, I'd say CPH - try indo.

Do I win a prize? :D
Title: Re: Question about chronic
Post by UN_SOLVED on Aug 14th, 2004, 3:05pm
Good answer Margi.  ;)

Indomethacin is proven to be 100 % effective in treating CPH.

Unsolved
Title: Re: Question about chronic
Post by Jonny on Aug 14th, 2004, 3:34pm
BINGO!....Margi and Unsolved

Sorry, no prize....um, I could send you a picture......LOL

Nah ;;D

Gotta love the folks that insist that they have CH and get 20 HA's a day......LOL

........................................jonny
Title: Re: Question about chronic
Post by pubgirl on Aug 14th, 2004, 3:59pm
Couldn't agree more!
Criminal really when those people could be pain free in days if they got diagnosed right.

The good news for Sarah's partner is that he is seeing Godsby ( ;;D) soon.

Wendy
Title: Re: Question about chronic
Post by synergy2120 on Aug 14th, 2004, 4:50pm
Sorry guys - may of got the wrong end of the stick here - do you mean marc might have CPH becuase he has already tried indo to no avail (or are you meaning someone else)?
Title: Re: Question about chronic
Post by Jonny on Aug 14th, 2004, 4:54pm
Sorry Syn......my question had nothing to do with Marc

Sorry bout that

.....................................jonny

Edit


Quote:
If it makes you feel any better, my cycle peak lasts around 6-8 weeks. That's right before they end and I typically get hit anywhere between 8-20 times per day.


Any guess?.......LOL ;;D
Title: Re: Question about chronic
Post by UN_SOLVED on Aug 14th, 2004, 7:36pm
If someone were to say that they were having more than 10 headaches a day on a regular basis ... I Would think CPH and not clusters.

Unsolved
Title: Re: Question about chronic
Post by synergy2120 on Aug 15th, 2004, 6:55am

on 08/14/04 at 16:54:52, Jonny wrote:
Any guess?.......LOL ;;D



im with ya hun - hear ya loud and clear!!!!
Title: Re: Question about chronic
Post by Jonny on Aug 17th, 2004, 6:29pm

on 08/14/04 at 19:36:36, UN_SOLVED wrote:
If someone were to say that they were having more than 10 headaches a day on a regular basis ... I Would think CPH and not clusters.

Unsolved


Nuff said  ::)

..............................jonny
Title: Re: Question about chronic
Post by Superpain on Aug 17th, 2004, 7:06pm
Yeah, too bad I don't have cph.... :P
Title: Re: Question about chronic
Post by Superpain on Aug 17th, 2004, 7:11pm
Indo is innefective, the neuro said it wasn't cph... And you guys know alot less sometimes than you think.
Some people get hit alot more than other's. 20 ha per day is not exclusive to cph.

Before the peak of my cycle when I only have 4-5 per day is it OK if I say I have cluster's? ::)
Title: Re: Question about chronic
Post by Jonny on Aug 17th, 2004, 7:42pm

on 08/17/04 at 19:11:03, Superpain wrote:
20 ha per day is not exclusive to cph.


According to whom?......LOL  ::)

.................................jonny
Title: Re: Question about chronic
Post by UN_SOLVED on Aug 17th, 2004, 8:00pm

on 08/17/04 at 19:11:03, Superpain wrote:
Indo is innefective, the neuro said it wasn't cph... And you guys know alot less sometimes than you think.
Some people get hit alot more than other's. 20 ha per day is not exclusive to cph.


Indo not effective for CPH ? These guys will have to re-write their stuff then, huh ?

http://www.headaches.org/consumer/topicsheets/paroxysmal.html

http://neuro-www.mgh.harvard.edu/neurowebforum/GeneralFeedbackArticles/ChronicParoxysmalHemicrania.htm

http://www.mhni.com/faqs_other_headaches.html#CPH

http://www.upstate.edu/neurology/haas/hpcphex.htm

http://www.headachedrugs.com/archives/cph.html

http://www.clusterheadaches.com/wwwboard/messages/26910.html

http://www.clusterheadaches.org/library/general/ch_general.htm

http://www.clusterheadaches.com/wwwboard/messages/2807.html

http://www.ahsnet.org/journal/1999/1112/art9nov99.pdf

http://www.ninds.nih.gov/health_and_medical/disorders/paroxysmal_hemicrania.htm

http://brain.oupjournals.org/cgi/reprint/120/1/193.pdf

http://www.loftusmd.com/Articles/Cluster/ihscluster.html

http://www.pulsus.com/Pain/05_01/edme_ed.htm

http://www.pacificpointclinic.com/headache.htm

http://www.headachedrugs.com/archives/excerpt_headache50.html

I got tired. I could've listed more. I guess all these docs are wrong (according to you). I doubt it. CPH does respond to Indo. I (we) never said it was effective for CH.
I never said you had CPH or CH either.

And you couldn't handle 20 of my headaches per day !!

Unsolved
Title: Re: Question about chronic
Post by Jonny on Aug 17th, 2004, 8:22pm
I dont think there is a person alive that could do 20 CH'ers a day for more than two days.

But thats just my HO, plus, theres not enough time in the damn day

........................................jonny
Title: Re: Question about chronic
Post by Prense on Aug 17th, 2004, 8:39pm

on 08/17/04 at 20:22:38, Jonny wrote:
plus, theres not enough time in the damn day


That's what comes to my mind...

Chris
Title: Re: Question about chronic
Post by Superpain on Aug 18th, 2004, 3:29am
Jonny... #1 Says me... #2 What you think is your "HO", and exactly and only that... Come visit me in cycle. There are 24 hrs per day, that's plenty of time.

Unsloved... You misunderstood me. Yes Indo is effective for CPH. It did nothing for me... Case in point. And not to argue, but I think you were one of the first if not THE first to suggest to me that I might have CPH... I could be wrong and forgive me if so, but the way I remember, it was you that prompted me to explore the possibility of cph because of the # of hits I was getting per day. I don't have CPH.

And
Quote:
And you couldn't handle 20 of my headaches per day !!

I'm gonna that write off to you misunderstanding me...
You don't know shit about me or my headaches except for what I tell you. I take offense at that statement... And I thought it was an sort of an unwritten law around here to not diminish other people's pain.
That statement is assinine and shows nothing but selfishness, ignorance and a complete disregard of  empathy. I can withstand 20 ha's per day. What's the most you get? K10 is not an option for me. How high do yours go? My headache will kick your heads ass!!! ::)

Stupidity at it's finest... A pissing match over an undeterminable subject with no winners. ::)
Title: Re: Question about chronic
Post by synergy on Aug 18th, 2004, 6:09am
Break it up you two - i didnt start this thread to cause an argument!!!!!

[smiley=argue.gif]

superpain - how long did you take the indo for? im not going to judge i just wanna know.
Title: Re: Question about chronic
Post by Prense on Aug 18th, 2004, 9:25am
20 attacks in a 24 hour period sounds rather...  Well, that averages out to 1.2 hours per attack.  Of course, there would have to be a rest period to define individual attacks...how long, 10 minutes?  10 minutes would make each attack time average out to 1.36 hours.  Assuming you get 4 hours collective sleep, the attacks would average back to 1.16 hours still with a 10 minute breaktime between individual attacks and leaves no time during the day for anything else...

If this is what you put up with for even one day out of your cycle, you're a bad mo fo.  I lose my friggin mind after my third daily attack, but I am averaging 2.5 hours per.  That would be the equivalent of your 7th...

Chris
Title: Re: Question about chronic
Post by Superpain on Aug 18th, 2004, 5:11pm

on 08/18/04 at 09:25:15, Prense wrote:
20 attacks in a 24 hour period sounds rather...  Well, that averages out to 1.2 hours per attack.  Of course, there would have to be a rest period to define individual attacks...how long, 10 minutes?  10 minutes would make each attack time average out to 1.36 hours.  Assuming you get 4 hours collective sleep, the attacks would average back to 1.16 hours still with a 10 minute breaktime between individual attacks and leaves no time during the day for anything else...

If this is what you put up with for even one day out of your cycle, you're a bad mo fo.  I lose my friggin mind after my third daily attack, but I am averaging 2.5 hours per.  That would be the equivalent of your 7th...

Chris

3 days of indo....
Prense, the amount of time a headache lasts and the frequency that they happen changes daily for me in "peak". It's like the beast has a timer he likes to play with and he sets it for different intervals each day. One day I might get 20 minute headaches every other 20 minutes, the next I'll get 30 minute headaches every 45 minutes... It's weird... But whatever interval they occur in, they are +/- 2minutes accurate all friggen day and night.
[smiley=laugh.gif] 4 hrs of sleep! I wish... There's just about no such thing as sleep when I'm in that period. I'm lucky to get 45 min's to an hour at a time in my peak.
I get hit constantly with K7 and above that last anywhere from 10 minutes to 2 or 3 hrs for an average of 6 weeks... I'm not a bad mofo. I just have no choice in the matter. I almost lost my fuckin mind this last time. I was sleep deprived, depressed and in pain almost constantly. I was on the verge of a full blown nervous breakdown. I had to take a leave of absence from work and I couldn't do anything except get ready for the next one.

Then I found this place and got welder's O2 and found a good doc. Thank God.

The neuro said I was one of the most extreme cases he had seen. I discussed CPH with him and he said he was sure that I did not have cph, but with my urging he gave me the script for indo anyway just to make sure... Actually he gave me everything I wanted and then some.
Then within 3 weeks I was completely PF. I think it may have just been the end of my cycle, but the pred, O2 and imitrex brought immediate relief when I most needed it.

I understand everyone's guidance relating to a high number of HA's and CPH... And for the most part you are probably right. But I am an exception, and I think there are other's like me that are extreme cases, so I think we should be careful to dismiss people's headaches to cph based soley on the number of headaches one has.
Sure it doesn't hurt to give the indo a try, unless you develop ulcers....
I don't know... I've done the dance for 18 yrs, and I KNOW I have cluster's. I was diagnosed my first cycle... And I guess I just get pissed when people try to tell me that I don't, and I couldn't handle that many headaches.
When newbies cry because they're in their 3rd week of a 4-6 week cycle, I laugh to myself but I try not to diminish their pain or circumstances. And when I say I'm extreme; until you've walked in my shoes, or lived in my head as it may be, or you've developed little doctors initials after your name, just believe me. I'm not new to this.
Geez... ::)
Next thing I know you guys will be telling me I have migraines. [smiley=laugh.gif]

Peace and PFDAN to you all. :)
Title: Re: Question about chronic
Post by Prense on Aug 18th, 2004, 6:04pm

on 08/18/04 at 17:11:45, Superpain wrote:
4 hrs of sleep!


I did not say four hours of uninterrupted sleep...  And if you say you only get 45 minutes to an hour of total sleep a day for more than a few days, I'd say you are full of shit.

...but, like you said...  I have never had 20 attacks in a 24 hour period.  Guess that just makes you a bad mo fo.

Chris
Title: Re: Question about chronic
Post by Superpain on Aug 18th, 2004, 6:17pm
I misunderstood. Sorry.

I'd say 4 hrs sleep per day is about right... Broken up in 20-40 minute naps, maybe an hour here or there...
Title: Re: Question about chronic
Post by Lizzie2 on Aug 18th, 2004, 6:40pm
Hmmm just read this one...

I have the constant headache that never leaves...regardless of CH.  It is a type of Chronic Daily Headache that Wendy was mentioning.  Ever since I got that headache, I"ve always had eye watering and nasal congestion on the right when it is at its worst.  AFter my figure skating accident in March of '03, that's when I started to get attacks that seemed like CPH.  They only lasted like 2-20 minutes.  However, I am completely unresponsive to indomethacin.  Then in November of 2003, I got a whopper that went for 4 hours.  And very shortly after that I started getting headaches at 5pm, 7pm, 9pm, 11pm, 2am, and 4am.  During my December to January hospital stay, I was diagnosed with clusters, got some O2, and the attacks went down to about 2 /day.  Since then, I've kinda gone up and down with number of attacks, and once in awhile, I have cluster-free periods for about a week at most (generally).  I don't have any pain free time between attacks, but that is because of my other headache type...not related to CH.  My neuro calls it one of three things, depending...either chronic migraine, new daily persistent headache, or hemicrania continua.  Hemicrania continua seems to be what it is most related to, but I don't respond to indomethacin, which usually diagnoses HC flat out.  And then I have the CH on top of that.  Currently averaging 4-6/day after quite a long period of only 2/day.

I don't really know what all this will contribute to your arguments other than the fact that I guess maybe sometimes people have more than one headache type, which can make getting an accurate diagnosis pretty difficult sometimes.  My CH's usually last about an hour or so if unmedicated, but the time can vary a little bit.  With O2, I can usually knock the bastard out within 20 mintues, but sometimes O2 doesn't work.  I'm thankful that it works at least some of the time.

At any rate, it's important that everyone gets an accurate diagnosis and gets the medication they need.  Just remember that if indomethacin doesn't work, it doesn't mean it is not CPH or Hemicrania Continua.  There are the weird flukes out there...including me, maybe. ;)  

Sarah, I hope that Marc has good luck seeing Goadsby!!

Hugz,
Carrie/Lizzie2 :)
Title: Re: Question about chronic
Post by Prense on Aug 18th, 2004, 7:07pm

on 08/18/04 at 18:17:00, Superpain wrote:
Broken up in 20-40 minute naps, maybe an hour here or there...      


That sucks though...  Naps will kill me!  I am fortunate enough to "typically" get at least 4 hours sleep uninterrupted.  Naps are da debul! [smiley=sgrin.gif]

Chris
Title: Re: Question about chronic
Post by Superpain on Aug 18th, 2004, 7:12pm
Yeah, that's the thing... Wether it's bedtime or in the middle of the afternoon, 20 or 30 minutes of sleep means it's time to get hit.

BUT I did find relief for a couple nights just before I went to see the doc with 18 mg of melatonin. I'll never forget the first night. I got 8 hrs of almost completely uninterupted sleep except for the occasional shadow. I subsequently tried smaller doses but it seemed to make me more agitated feeling than anything else.
Title: Re: Question about chronic
Post by Jonny on Aug 19th, 2004, 9:11pm

Quote:
This time however the cycle is almost a yr old and I've just in the last week kicked into the serious pain all the time phase... I'm having what I call "four-bangers" about every 30 mins ( because they bang like hell for 4 mins)


Guess who?

..............................................  Mister ;;D
Title: Re: Question about chronic
Post by synergy on Aug 20th, 2004, 9:46am
Marc is very similar - he is always in pain (normally rests at a level 4) then the pain will peak throughout the day and night. He never gets a break (4 PF days in 3 years).

He was diagnosed by one of the top specialists (close to Goadsby) who said it was CCH - but a rare form.

According to Prof. Zach you have episodiac CH, and then there are 3 types of Chronic CH, the most common one which the majority of CCH have and then there are two extreme versions of CCH with slightly different symptoms
(like being in pain 24/7).

Marc has also been on indo for 3 weeks - with no effect.

Just because somebody is having more attacks then somebody else it does not necessarily mean that it is not CH. There is a chance that what Superpain, marc, and some others have is another form of another similar headache but if a specialist in the field diagnosis it as CCH and is sure it is not CPH then thats it.

As i said - there are 3 types of CCH - all the same but we some different symptoms - and that is what a specialist said.

luv and PF days to all - sarah xx
Title: Re: Question about chronic
Post by Prense on Aug 20th, 2004, 10:03am

on 08/20/04 at 09:46:21, synergy wrote:
...but if a specialist in the field diagnosis it as CCH and is sure it is not CPH then thats it.


If that were true, the CH population would be about 20% of what it currently is.

Chris
Title: Re: Question about chronic
Post by Jonny on Aug 20th, 2004, 10:56pm
Pick your affliction and jump on board......Christ!!

.............................................Mister ;;D
Title: Re: Question about chronic
Post by Jaime on Aug 21st, 2004, 1:12am
Thanks for sharing your story, Superpain.  I'm 3 weeks into my very first cycle, and you could almost be telling what my life has been like.  I'm not quite as severe - averaging 6 - 8 severe attacks a day, some days more, some days less. The days when it is more I feel like I'm losing my mind, and it makes the days when there are fewer seem like a relief. [smiley=eek.gif]
Title: Re: Question about chronic
Post by Jonny on Aug 24th, 2004, 7:15pm
;;D
Title: Re: Question about chronic
Post by pubgirl on Aug 24th, 2004, 7:25pm
Sarah

Must have missed this. Who is Prof Zach?

Wendy
Title: Re: Question about chronic
Post by synergy on Aug 25th, 2004, 5:09am
She is a professor at Barts London in Hospital - she specialises in facial pains and seems to know Goadsby very well.
What she said might not be right but it does make sense to me as there are some people with CCH that have all the sympotms and some slightly diferent ones.

luv sarah xx
Title: Re: Question about chronic
Post by Jonny on Aug 25th, 2004, 7:27pm
;)


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