Author |
Topic: chronic? (Read 520 times) |
|
Jobette
New Board Veteran
This too shall pass! If you don't passout first!
Gender: 
Posts: 140
|
How will you know if you evolve into a Chronic Clusterbeing. I am episodic, and I think that I have slipped from one cycle into another with only about a 3 - 4 day remission if you can call it that. The pain also switched sides.  I have been looking for some reading material to this affect but am having no luck. I am finding that I can't afford to wait for someone to tell me that this or that is what it is, because I seem to be suffering right about now, more than usual and all my tricks are not working. 
|
|
 IP Logged |
Who gave cupid those flaming arrows, and why is he shooting them into my right eye?
Where is his love?
|
|
|
alchemy
CH.com Alumnus
New Board Hall of Famer
get out of my head
Gender: 
Posts: 1639
|
 |
Re: chronic?
« Reply #1 on: Oct 28th, 2006, 7:29am » |
 Quote  Modify
|
chronic is a year with only a 3 week break during that year. some people do have tey're clusters switch sides. what are you on for meds?
jim
|
|
IP Logged |
|
|
|
chewy
Guest
|
Chronic is 1 year of unremitting pain with less than 30 days remission with or without medications.
|
|
IP Logged |
|
|
|
AussieBrian
New Board Hall of Famer
Got beer?
Gender:
Posts: 1695
|
|
Re: chronic?
« Reply #3 on: Oct 28th, 2006, 9:43am » |
Quote Modify
|
G'day, Jobette, and I know just how you feel. I recently had three, perhaps four, individual cycles back to back and all up it lasted 18 months with three days off.
It never switched sides (I hate that) but I certainly got what I call the 'wildcats' in between.
Best I can suggest is that you simply get on with life as best you can and take every day as it comes. No point worrying about what's not there.
Wish I could help more.
|
|
IP Logged |
Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
  
Gender:
Posts: 6458
|
|
Re: chronic?
« Reply #4 on: Oct 28th, 2006, 9:45am » |
Quote Modify
|
on Oct 28th, 2006, 9:43am, AussieBrian wrote:
Best I can suggest is that you simply get on with life as best you can and take every day as it comes. No point worrying about what's not there. |
|
Perfect!
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
SophiaK
CH.com Alumnus
New Board Junior
I love YaBB 1G - SP1!
Posts: 88
|
|
Re: chronic?
« Reply #5 on: Oct 28th, 2006, 12:44pm » |
Quote Modify
|
OK, since I am in the 10th month of daily pain, no time off in 10 months, does that mean if I have 11 months of daily pain, does that make me chronic? Sorry, Eric I couldn't help myself. Sound logical? 
|
|
IP Logged |
|
|
|
chewy
Guest
|
Quote:| does that mean if I have 11 months of daily pain, does that make me chronic? |
|
By definition...................No.
Depends on what happens in that 12th month.
Way I interpret it, in your situation, is 1 day of pain into that 12th month and you are chronic.
|
|
IP Logged |
|
|
|
BarbaraD
CH.com Alumnus
New Board Hall of Famer
Hugs to ya
Gender:
Posts: 5164
|
|
Re: chronic?
« Reply #7 on: Oct 28th, 2006, 5:49pm » |
Quote Modify
|
Trust me - you'll KNOW when you're chronic. Been there since 97. At first I just thought I was having a long cycle, but it never ended. Now I deal with it and do what I want in between hits. Hell, I'm old, I don't do much anyhow. 
Hugs BD
|
|
IP Logged |
What don't kill ya, Makes ya stonger!
|
|
|
Jobette
New Board Veteran
This too shall pass! If you don't passout first!
Gender:
Posts: 140
|
|
Re: chronic?
« Reply #8 on: Oct 29th, 2006, 12:36am » |
Quote Modify
|
I am on 240 mg verapimil x 2, imitex nasal, pills, and injections, red bull when needed or available, and oxygen and plenty of coffee and cigarettes. I am tyring to do the right things and take all my meds and deal with this thing but it is getting rough. The pain on the left side is A WHOLE lot worse that it is on the right, if you can believe that. Oh well, there is always tomorrow.
|
|
IP Logged |
Who gave cupid those flaming arrows, and why is he shooting them into my right eye?
Where is his love?
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
Gender:
Posts: 6458
|
|
Re: chronic?
« Reply #9 on: Oct 29th, 2006, 8:58am » |
Quote Modify
|
on Oct 29th, 2006, 12:36am, Jobette wrote:| I am on 240 mg verapimil x 2, imitex nasal, pills, and injections, red bull when needed or available, and oxygen and plenty of coffee and cigarettes. I am tyring to do the right things and take all my meds and deal with this thing but it is getting rough. The pain on the left side is A WHOLE lot worse that it is on the right, if you can believe that. Oh well, there is always tomorrow. |
|
Eventhough the same medication, be very careful when interchanging.
Dosages are different and can lead to complications.
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
Charlotte
CH.com Alumnus
New Board Hall of Famer
I love YaBB 1G - SP1!
Gender:
Posts: 1932
|
|
Re: chronic?
« Reply #10 on: Oct 29th, 2006, 11:15am » |
Quote Modify
|
you have my sympathy on the side switch thing. I'm a rightie. I think they seem worse because the last thing you want is to get hit on the other side. I'm doing good right now, cross my fingers, but sometimes i get days with multiple left siders. Sometimes they seem like an echo and sometimes they are just at a different stage but overlapping.
No advice, just sympathy. Hang in there.
Charlotte
|
|
IP Logged |
|
|
|
leftsideonly
New Board Newbie
We can make it - - TOGETHER!
Gender:
Posts: 20
|
|
Re: chronic?
« Reply #11 on: Oct 31st, 2006, 1:50am » |
Quote Modify
|
Hi Jobette
I hope things are going better for you today Hun. I too am worried about this episode being way to long and becoming chronic. My episodes usually last only 8 - 12 weeks longest. I went a long time without them - 3 years prior to this on cranking up. I am in week 14 and still getting 2 to 3 shadows daily along with the occasional 8 - 10 kip. I guess its better than the 6 - 8 kip 10's I was getting at peak.
I guess I just want you to know your not alone in being worried about the chronic thing. Remember - they can be gone as fast as they came on. My prayers are with you - lets hope for the best Hun
Peace and PF wishes,
Andre
|
|
IP Logged |
Put your faith in JC
|
|
|
Kirk
CH.com Alumnus
New Board Hall of Famer
VINIMUS, VIDIMUS, DOLAVIMUS
  
Gender:
Posts: 1914
|
|
Re: chronic?
« Reply #12 on: Oct 31st, 2006, 2:18am » |
Quote Modify
|
I was episodic from 69 to 2000. I just thought it was an abnormaly long episode. The rest as they say is history.
|
|
IP Logged |
|
|
|
Stju1970
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 7
|
|
Re: chronic?
« Reply #13 on: Oct 31st, 2006, 9:37am » |
Quote Modify
|
I am sorry for those who have chronic CH. I know I don't have chronic CH caused I don't experience the same thing like most of you have had.
How does one go from Episodic to chronic CH? What caused this to happen from Ep. to Ch. Cluster Headache? Finally, what is the likelihood(%) you will become Chronic CH? Or is Chronic CH born with it?
You see my family does not have any Ep or Ch Cluster Headache. I am the first one in the family that has this condition.
I am sorry. I ask too many questions.
Thanks,
Steve
|
|
IP Logged |
|
|
|
chopmyheadoff
New Board Old Timer
Its only a headache, deal with it - SMACK
Gender:
Posts: 481
|
|
Re: chronic?
« Reply #14 on: Oct 31st, 2006, 10:06am » |
Quote Modify
|
on Oct 31st, 2006, 9:37am, Stju1970 wrote:I am sorry for those who have chronic CH. I know I don't have chronic CH caused I don't experience the same thing like most of you have had.
How does one go from Episodic to chronic CH? What caused this to happen from Ep. to Ch. Cluster Headache? Finally, what is the likelihood(%) you will become Chronic CH? Or is Chronic CH born with it?
You see my family does not have any Ep or Ch Cluster Headache. I am the first one in the family that has this condition.
I am sorry. I ask too many questions.
Thanks,
Steve |
|
Dont worry about asking questions matey - thats why were here -
iv always been chronic.
my neurologist told me that there is about a 20% chance that an episodic will turn to a chronic but virtually no chance a chronic will turn to an episodic.
sorry if thats not what you wanted to here.
saying that though, although he is an expert, he is not a sufferer and peoples experience on here may differ from the statistical evidence.
pfw
chop
|
|
IP Logged |
|
|
|
Bond007
New Board Old Timer
Gender:
Posts: 255
|
|
Re: chronic?
« Reply #15 on: Oct 31st, 2006, 6:30pm » |
Quote Modify
|
on Oct 31st, 2006, 10:06am, chopmyheadoff wrote:
but virtually no chance a chronic will turn to an episodic.
|
|
NO NO NO NO NO NO NO NO NO NO NO NO NO
That's it! Who wants to be listed in my will??? I've just been diagnosed as "spontaneously" chronic!!! I don't know that I can handle that kind of news, dear chop!! 
|
|
IP Logged |
Sometimes life bites you in the ass -- that's what drugs are for!!
|
|
|
Jobette
New Board Veteran
This too shall pass! If you don't passout first!
Gender:
Posts: 140
|
|
Re: chronic?
« Reply #16 on: Nov 1st, 2006, 1:47pm » |
Quote Modify
|
What is "spontaneously chronic"?
|
|
IP Logged |
Who gave cupid those flaming arrows, and why is he shooting them into my right eye?
Where is his love?
|
|
|
Bond007
New Board Old Timer
Gender:
Posts: 255
|
|
Re: chronic?
« Reply #17 on: Nov 1st, 2006, 1:52pm » |
Quote Modify
|
on Nov 1st, 2006, 1:47pm, Jobette wrote:| What is "spontaneously chronic"? |
|
It means no case of CH prior to going chronic. I was never diagnosed with CH prior to this point even though I do recall an episode in my early 20's that "could have" been a CH attack, but I can't be certain. It was a long time ago and the details of the episode are fuzzy.
|
|
IP Logged |
Sometimes life bites you in the ass -- that's what drugs are for!!
|
|
|
Jobette
New Board Veteran
This too shall pass! If you don't passout first!
Gender:
Posts: 140
|
|
Re: chronic?
« Reply #18 on: Nov 1st, 2006, 11:37pm » |
Quote Modify
|
I remember the last 12 yrs of being what I understand to be a episodic clusterheadache sufferer. The last 2 yrs i have spent alot of time trying to remember when this all began.  As I remember it, the first 5 yrs were just 1 to 2 very small episodes, that lasted about a week or 2. I guess the next 5 yrs were just a little worse, just enough to remember all the OTC meds that I was taking, and the drs and hospital labeling me a drug seeker  . The last 12 yrs are etched in the mind, body and soul. I have been in hell, I can see how this thing has evolved  I can only speak for myself and the pain that I am feeling. I know that the pain will leave eventually! I know everyone is different in their pain tolerance and the different things that trigger, and the things that half ass help to slay the dragon. But how do we really know how and when a person slips from episodic to chronic. I know "Don't worry until it happens", but what if it is YOU dealing with this and no one to REALLY help you through it. You are the one suffering and feeling hopeless or at the least like DAMN, is this going to ever end? Oh well, sorry, but I had to let that out, maybe now I will make a better fighter 
|
| « Last Edit: Nov 1st, 2006, 11:41pm by Jobette » |
IP Logged |
Who gave cupid those flaming arrows, and why is he shooting them into my right eye?
Where is his love?
|
|
|
BB
CH.com Alumnus
New Board Newbie
I love YaBB 1G - SP1!
Posts: 0
|
|
Re: chronic?
« Reply #19 on: Nov 2nd, 2006, 1:13am » |
Quote Modify
|
At this stage I dont know if anybody knows who, why and when someone with CH will become chronic.
I have heard of cases of people started as episodic then becomming chronic after some years, others ( fewer ) start out straight away as chronic, and then other people after a long time being chronic seem to revert back to episodic ... There doesnt seem to be any hard and fast rule to this.
My husband is going through his first cycle and so far it doesnt seem to want to end, started late July and still going strong, 2-3 attacks per day. We raised the question with the neurologist and was adviced that no one knows, we just have to wait and see. If he goes for 12 months straight without a break then he is chronic.
He told us to try not to worry or panic about it ( easier said than done ), just take one day at a time and try to enjoy any painfree time in between, as worrying about whether one is going to be chronic or not wont help anything, but will make one feel depressed.
So we are playing the waiting game and praying.
Painfree wishes to all.
Annette
|
| « Last Edit: Nov 2nd, 2006, 5:27am by BB » |
IP Logged |
|
|
|
MJ
New Board Hall of Famer
Gender:
Posts: 911
|
|
Re: chronic?
« Reply #20 on: Nov 2nd, 2006, 1:46am » |
Quote Modify
|
Twice chronic for me, only 3 year cycles with no remission each time though..
Each time I "spontaneuosly" reverted back to epi cycles of less than a year.
Chop your doc is wrong or the definition of chronic needs to be revised to over 3 years. I'm fine with a redefinition as I dont claim to be chronic just variable episodic.
|
|
IP Logged |
MJ
|
|
|
chopmyheadoff
New Board Old Timer
Its only a headache, deal with it - SMACK
Gender:
Posts: 481
|
|
Re: chronic?
« Reply #21 on: Nov 2nd, 2006, 2:56am » |
Quote Modify
|
on Nov 2nd, 2006, 1:46am, MJ wrote:
Twice chronic for me, only 3 year cycles with no remission each time though..
Each time I "spontaneuosly" reverted back to epi cycles of less than a year.
Chop your doc is wrong or the definition of chronic needs to be revised to over 3 years. I'm fine with a redefinition as I dont claim to be chronic just variable episodic.
|
|
my "doc" is Dr Silver who works closely with Professor P.Goadsby of the royal institute of neurology in London.
and at what point did i mention anything about the definition of being chronic ?
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss