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FramCire
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Question about Episodic to Chronic
« on: Dec 28th, 2005, 11:19pm » |
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My episode started before Thanksgiving. I had a day without headaches and they returned and now I have had around 36 hours without and I have my first headache.
Any thoughts? I had my first "episode" last year and it lasted 4 weeks and went away.
Could this be becoming chronic?
If so, anyone want to help me deal with what I am looking forward to.
Has anyone with episodic CH had anything like this?
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chewy
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Re: Question about Episodic to Chronic
« Reply #1 on: Dec 28th, 2005, 11:22pm » |
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Your not chronic until you've gone 12 months with less than 30 days pain free with or without meds.
Your not even close.
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E-Double
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Re: Question about Episodic to Chronic
« Reply #2 on: Dec 28th, 2005, 11:28pm » |
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What he said.
Just enjoy the ride my friend.
Try your best to stay positive
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FramCire
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Re: Question about Episodic to Chronic
« Reply #3 on: Dec 28th, 2005, 11:30pm » |
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Not to be rude, but my question was to ask if this was BECOMING chonic. I was under the impression the episodic CH generally had a period of time between episodes of weeks or months. To have 1 day without here and there didn't seem normal.
I was wondering if people with episodic had had episodes interupted by a day or two
Again, I am worried about it becoming chronic so I am looking for anyone who has episodic who has had an experience similar to this or if this is like what happened to people who went form episodic to chronic. As you can probably understand, the proposition of going from episodic to chronic is scary beyond belief.
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nani
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Re: Question about Episodic to Chronic
« Reply #4 on: Dec 28th, 2005, 11:35pm » |
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Yes, it's scary. The definition of chronic was given above. 12 months with less than 30 consecutive pain free days. It's possible for both episodics and chronics to have PF days within their "cycles", but the chronic definition is a long way off for you. Don't sweat it... it's not worth the energy at this point. Really. Enjoy any PF moments you have.
PF wishes, nani
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chewy
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Re: Question about Episodic to Chronic
« Reply #5 on: Dec 28th, 2005, 11:39pm » |
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Are you even sure you have CH ?
Ever been diagnosed?
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E-Double
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Re: Question about Episodic to Chronic
« Reply #6 on: Dec 28th, 2005, 11:41pm » |
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As scary as it may be you really can not predict anything.
Such is the nature of the disorder.
I had episodic clusters for a decade and last March went chronic.
Throughout this relatively long cycle (now 21 months) I have had cycles within.
This means periods of high and low activity.
I have even had a week off here and there with a 3 week PF period a few weeks ago.
I almost thought I was finally finished yet they came back. They always do.
Here is the point:
Stay as positive as you can and have meds stockpiled and ready for battle if/when needed.
Life goes on ya just need to live it!
Took me a long time to stop questioning the "Beast" and to get motivated to start living.
I'm a Special education teacher/Board Certified Behavior Analyst and run home schools for developmentally disabled toddlers. I also lecture around NY and train teachers entering the field.
I go from house to house all day and have to teach, counsel, and train. It gets hectic but I have learned to never leave home without my meds regardless how I feel(sometimes feel great....then BAM!)
Keep your chin up and remember... "IT IS WHAT IT IS" so breathe and try to live to the best of your abilities.
Wishing you the best
Eric
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MJ
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Re: Question about Episodic to Chronic
« Reply #7 on: Dec 28th, 2005, 11:42pm » |
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Fram I dont think you have anything to fear.
I would just consider it a nice benefit to have pain free days in between and yes lots of folks get small breaks like that.
wishing you many more.
MJ
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Sean_C
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Re: Question about Episodic to Chronic
« Reply #8 on: Dec 28th, 2005, 11:52pm » |
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It doesn't sound it, enjoy your PF time either way 
Sean.........................
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FramCire
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Re: Question about Episodic to Chronic
« Reply #9 on: Dec 29th, 2005, 1:42am » |
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1. yes I have been diagnosed with it. I live with a Dr, and I have 3 Drs who have followed my case very closely, we have been in touch with multiple nuerologists and I am going to be seeing a headache specialist at a headache clinic as soon as an appointment can be made. Although I can't be 100% sure of anything because I myself am not a Dr, I am fairly sure the diagnosis is correct. I guess I must have pissed chewy off with something I said. If so, I appologize.
2. My fear is because I have tried everything to sleep at night. Melatonin, triptans, and multiple prescription sleep aids have all not worked. None of them have allowed me any sleep and they all have actually made me wake up with worse headaches than if I dont take them at all. This is why I am in such fear. Anyway, I am very happy to have had a couple of PF days and I am hopeful that this episode will go away and that it wont become chronic. Does anyone have any other sleep ideas? I am a stay at home dad and I can't nap during the day at all (not that it is recommended either).
3. To the poster above who is a Special Ed/Behavoir Specialist. I taught Early Childhood Special Ed for a couple of Years before i became a stay at home father and one of my favorite people was our Coops behavior specialist. She is an awesome lady and if you are anything like her, I am amazed by what you do. God bless you. Your work is awesome.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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chewy
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Re: Question about Episodic to Chronic
« Reply #10 on: Dec 29th, 2005, 7:23am » |
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Tried Dramamine?
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Wendy
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Re: Question about Episodic to Chronic
« Reply #11 on: Dec 29th, 2005, 7:48am » |
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I understand how your feeling, and we don't mean to sound like we are being smartasses. I am a chronic....without meds or my seeds(my new thing) its an all the time, never ending thing! With an a week off sometimes. But thats again WITHOUT anything. It is scary and I think we sometimes forget how scary it is when you start becoming chronic and in my case I didn't even know what the hell was happening to me til then. I saw tons of different Dr.'s and because my headaches were seasonal they all thought different things UNTIL they were all the time that I KNEW something was really really wrong. Sleep is the hardest and can wear on you like nothing else. You said you have taken sleep drugs? I know in my worst times amibenCR helped alot along with o2. The CR one last longer than the original. Anyway not to go on but we really do know how scared you are and how worn out your body and mind become, but just hang on its probably your tough week( we all get them) but please don't worry about being chronic yet , will only add to your CH. We all mean well and we do care. Best of luck getting pass this bad time and keep in touch. 
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FramCire
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Re: Question about Episodic to Chronic
« Reply #12 on: Dec 29th, 2005, 8:46am » |
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I haven't tried Dramamine and I have Ambien but I don't know if it is Cr (I'll ask my wife). You guys have been a huge help. Just knowing it can be normal to have a PF day and not become chronic takes that edge off. For me, knowledge is a bad thing. I don't know if it has been the triptans of what, but I have been very jumpy whenever I am not either in pain or very tired. Along with not having my minds normal functioning, it is not a fun time (like I need to tell any of you this).
Anyway, thanks for everyones input. Your suggestions are also very much appreciated. I woke up this morning with hope that tomorrow would be a PF day.
One more question. I have found that Maxalt (the dissovlable (sp?) kind) works best of the triptans for me but insurance wont cover it. Have any of you had any luck getting your insurance to cover more than 6 per month? The junk is lke $150 per 6 tabs.
P.S. If you like the stuff and pay out of pocket ans your Dr if they can get a coupon from the drug rep. My Dr found one.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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nani
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Re: Question about Episodic to Chronic
« Reply #13 on: Dec 29th, 2005, 9:40am » |
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Hi again, Fram.
You should look over on the left at the Oxygen info link. Oxygen has been very helpful to many of us.
Also, look here for standard CH treatments. You'll want a preventative as well as an abortive med.
http://www.brightok.net/~mnjday/chtherapy.pdf
For an alternative prevent, look at this thread (and all the threads lnked in it)
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1110584362
Melatonin and Benadryl may help you sleep at night.
For a very alternative treatment (one which I've found the most effective for me so far) look here:
www.clusterbusters.com
Oh, and don't worry about making chewy mad...he's got identity issues.
Keep asking questions, info is your best weapon. 
pain free wishes, nani
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FramCire
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Re: Question about Episodic to Chronic
« Reply #14 on: Dec 29th, 2005, 10:22am » |
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I do use O2. Forgot to mention it because I don't use it specifically to aid sleep as much as to stop an attack. Splitting hairs I know, but I do have a couple tanks at all times. Just glad my insurance covers it this time.
I will take a look at the O2 info though. It doesn't seem to work the best and I have read contradicting info as to when to use it and it has me confused. I don't get consistant relief from anything these days, not that that is anything abnormal.
Anyway, thanks again. I'll check out the links provided.
As for chewy, I guess it kinda bothers me that a few of the threads I have read have got mighty contentious where people are accusing others of not having CH in a not so friendly manner (in the other threads it was not chewy). Honestly, I'd be mighty happy if I didn't have it. Shoot, I have taken more than 1 headache test hoping that alternatvie theories will pop up. So, I am mighty confused why people get in other peoples faces about whether they have it or not. Why would anyone post here pretending they do when they don't?
Anyway, thanks again. Any other advise is appreciated. I'm being set up with a visit to the Headache clinic. So, I guess I'll learn even more soon. Good luck everyone.
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Re: Question about Episodic to Chronic
« Reply #15 on: Dec 29th, 2005, 10:39am » |
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In so far as the question of why people would post here if they don't have CH....
Doctors are very poorly informed as to the nature of this disease as a whole. Most people are misdiagnosed because the Doctor or Neurologist has never even heard of the condition, and some Doctors who have heard it as a catch all phrase are fast to diagnose it when the real culprit is something more easily treated.
Many of us have been mis diagnosed with numerous headache conditions in the past, while some of us have multiple headache conditions simultainiously.
CH medications can be highly toxic to those who don't actually need them, as well as to those who do. For safety reasons and out of care for those who are presenting with symptoms that do not meet CH criteria we try to point them in the right direction.
I hope this helps explain it.
Pegg
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chewy
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Re: Question about Episodic to Chronic
« Reply #16 on: Dec 29th, 2005, 11:46am » |
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Quote:| I have read have got mighty contentious where people are accusing others of not having CH |
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It wasn't an accusation, it was a question. If you are not accurately diagnosed with clusters then a lot of the info you are getting could be useless and potentially harmful.
Quote:| Why would anyone post here pretending they do when they don't? |
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Good question.
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BobG
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Re: Question about Episodic to Chronic
« Reply #17 on: Dec 29th, 2005, 1:06pm » |
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Don't worry about the 'chronic' thing. My clusters started 30 years ago and I've never been chronic. My clusters were always 4 to 8 weeks every year, sometimes twice a year and the very worst was maybe 12 weeks. I think that only happened twice.
You say you live with a doctor, your wife?. Medical doc? Seems like there should be lots of free maxalt samples available. No?
O2 (oxygen) Are you using a NON-rebreather mask? For relief start using it at the very first feeling of an attack and continue at least 5 minutes after the pain leaves.
Sleep........try sleeping with your head elevated. My La-Z-Boy helped get me through many nights. It won't eliminate the attacks but might lessen them some.
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FramCire
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Re: Question about Episodic to Chronic
« Reply #18 on: Dec 29th, 2005, 1:44pm » |
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chewy: I guess because your posts were so short and didn't really answer the question, I took it the wrong way. Plus I had read other threads where people have not been so nice about it. As I said before, the other threads did not involve you. I am sorry.
As for the samples, I do get them but I try not to hog them as there are plenty of Migrane sufferers out there who also use them. Being the spouse of a Dr has advantages but with it also comes the line of making sure you don't abuse the privledges. (My wife is a Family Pratice Doc.) I guess it is time to be selfish and ask her to contact the drug rep and get some more.
Thanks for the O2 advise. I have the wrong mask (thank you to the poster who suggested I read the oxygen info link on this site). The rebreather thing I didn't know about. I was also only using it for 15 minutes and that was it no matter what.
Since I am bombarding people with weird questions...does anyone else have a loss of appitite or thirst? I tend to not want to eat or drink much. I do have the tooth pain thing ... the trigeminal (sp?) nerve too so that may be part of it.
OK, sorry again for the questions but I am hoping that along with getting some answers maybe it will help others. I got some great help reading other threads here.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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E-Double
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Re: Question about Episodic to Chronic
« Reply #19 on: Dec 29th, 2005, 2:11pm » |
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Be selfish my man!!!!!!!!
Get all you can from wife
If I am peaking then my appetite suffers.
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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.
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BobG
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Re: Question about Episodic to Chronic
« Reply #20 on: Dec 29th, 2005, 2:19pm » |
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Nonrebreather. NON-rebreather. Non. NON!
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I haven’t seen any weird questions, yet. Ask anything you want. We all have and the newbies to come will ask again. And again, And again. No big deal. We’ll treat them as we always have……………
Quote:| I am hoping that along with getting some answers maybe it will help others. |
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Me too.
Quote:| I got some great help reading other threads here. |
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Then we have all done our jobs.
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FramCire
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Re: Question about Episodic to Chronic
« Reply #21 on: Dec 29th, 2005, 3:23pm » |
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OK. My mask doesnt have a bag. I guess I ought to go get one, huh? (yes, I am an idiot, but I wasn't a complete idiot pre CH, verapomil (sp?), and topamax)
As for being selfish, it is time. I had hoped that being on both Topamax and Verapomil (sp?) would cut this episode down quickly. It has only been 4 weeks, so I guess I really have nothing to complain about since many people reading this are probably chronic. Anyway, we had a friend offer her supply of Maxalt (samples my wife gave her) and I said no because she is a single mother and I couldn't imagine her having a migrane and not having the meds to take when she needed it when she was caring for her kids. As I said, I'm an idiot.
Anyway, you guys are great. (Even chewy who I got on earlier). Thanks for all the great advice. I am sure this website will help my wife and her partners if CH rears it's ugly head in their practice again. The resources here are excellent.
Also, I thought I might share a little success I have had. I have found that Ultracet has had some limited success in taking the edge off of some of my HAs when other things don't work or I couldn't take any more triptans that day. it didn't rid me of the HA but it lowered the pain enough to make it bearable until it went away.
Also, am I the only person who sleeps in a room with the lights on. I find I stay sleeping a bit longer and fall asleep easier.
OK, just looked at the KIP scale for the first time in awhile. Saw the thing about shadows. What is a "shadow"? Should I be seeing shadows or something? I don't remember a HA where I could sleep, so I never paid much attention to below 5 on the scale before. (hey look, another bizarre question!!!!)
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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jon019
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Re: Question about Episodic to Chronic
« Reply #22 on: Dec 29th, 2005, 3:42pm » |
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Hi Fram,
Been painfree (some shadows) since Sept 14. Currently on verapamil (480 mg to start, tapered to 240 and thinking about 160) and Topomax (ramped up to 100 mg quickly with bad side effects, ramped down to 25 currently and thinking about 12 or none). This combo might be keeping me out of cycle or it might just be gone on its own.
However, the hammer that stopped the cycle (SAME DAY, I'm SHOUTING THIS) was an IV of solu medrol followed by a weeks worth of tapered tabs of same. My feeling that it took 2-4 weeks for the above combo(Verap/Topo) to effectively maintain.
Regards
Jon
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E-Double
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Re: Question about Episodic to Chronic
« Reply #23 on: Dec 29th, 2005, 3:42pm » |
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Shadows are what we call lower level CH's that kinda creep. they linger. the feeling that "it's there" just waiting to attack.
kinda weird personifying the disorder huh but kinda fun
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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.
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Re: Question about Episodic to Chronic
« Reply #24 on: Dec 29th, 2005, 4:00pm » |
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How much verapamil are you taking? Most people start low, 200mg a day and slowly ramp up until they reach a point where it stops the cluster. 800mg is not unheard of.
Your Dr. Wife will probably say "How much? 800? That'll kill a horse" Just tell her "No it won't."
And some folks use lithium with the verapamil.
You just have to find the cocktail that works for you.
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