I am terrified to ask this question: Can episodic people turn into chronic? I have now been out of remission for over 5 weeks and I can't get the beast to go back in remission. This whole cycle has been so off beat for me....I have been getting clusters since I was 17 years old, but my clusters was misdiagnosed as Migraines until I was 37 years old. I didn't realize there was a pattern to my headaches. I would be out of remission for about 3 months and then they would go back in remission for about another 3 months. As I got older my remissions became longer, up to 18 months. Once I was properly diagnosed with Clusters the doctor gave me Prednisone to take for 15 days and the clusters would go back in remission without fail, until NOW!!
This whole cycle has been offbeat for me!! Normally the sign of being out of remission was the headache itself, but this time I was feeling the beast trying to show its ugly self for about 2 months before coming out of remission. I came out of remission on Nov 1st, but started my Prednisone 3 days before coming out of remission (I could just feel the very dull cluster for weeks before it really hit me). When I was done with the 15 day RX of Prednisone I had to get a 2ND refill because I was not even close to being in remission.
I have other medical issues going on right now and I was thinking that might have been the reason for the warning signs. I had growths on my vocal cord (one was very large and the others were small) I also had a blockage in both sinuses. I had surgery on Nov. 14Th and that was the last cluster I had until Wednesday when I decided to have a couple of beers. I ended up having a few beers and a shot….really 4 shots of Imitrex injections after getting 4 clusters in 8 hours. Now I am wondering if I have changed from episodic to chronic or could it be I am still recovering from my surgery and have swelling that may be putting pressure on nerves!!
Can anyone answer this very long question??  :-[

Yes you can turn chronic

By definition, chronic is going 12 months without a pain-free break of 30 days or more.

I believe that I'm chronic now too. Before, mine were on "to the date cycles" and the longest cycle was 8 weeks. Now, I'm approaching 16 weeks. However, there is a good side to mine. Not as many are "monsters", but I am almost constantly in the shadows. Before, about 70% of my attacks would be "monsters". Now they have dropped to about 40%. Is that a good thing? I'm not sure. Before, about 95% of my monsters came at night (this left me able to have half a life). Now, I'm not sure when they will hit. The ratio varies for me from week to week. It has interferred with my work schedule and all aspects of life. Before, I could take getting 2-3 hits a night and function during the day knowing that most likely I won't getting hit hard. They have taken a strange new pattern for me. I can't say if I like this new pattern and monster ratios or not. Of course I hate having CH's, but man.....I'm having a hard time with adjusting. I think if I didnt have a boss who suffers as well.....I would have lost my job a month ago. Which brings me to a question I have been wondering. If diagnosed with CH's.....does that qualify us for disability? People with seizures can, why can't we? I'm not saying that I want to lay around the house and wait for attacks or anything, but man I miss a lot of work because of these. I am thinking that we won't qualify because of remissions and how long they can last. Anyone know anything about this please chime in.

:'(, OK Tim...you got me crying!! Have you taken the Prednisone treatment?? Was there a way for you to get them to go in remission and end the cycle early or have you always let the cycle run it course? :'( :'(
I think I already knew the answer would be "yes" you can turn chronic...but you described my new pattern as well. Before this cycle my ch would be on a pain scale of 8 to 10 with my crawling on the floor to get to the bathroom to be sick. I would sweat as if I ran 10 miles and once the pain stop I was wiped out and feel asleep. This time the pain ranges from a 2 to 5 on the cluster scale. I have only had two ch that made me sick. Before I would get about 3 to 4 a day, with this cycle I am getting 4 to 8 a day mostly hitting me when I try to sleep. Since my surgery I did have a week of pf days and that is when I thought I finally was in remission again. Until I decided to have two beers two nights ago. I had a pf day yesterday and so far today, but its getting time for bed so I still have time to change that.
I too think we should qualify for disability!! Maybe if they could see us during a headache!! I get white as a ghost (even with the mild ones) and need to be in a dark cold room. I just pray the monster hasn't changed the game for me, but Tim's and mine sounds a lot a like!!  :'(

I've often gone 12-18 months without so much as a one day break but never regarded myself as chronic because they were always seperate cycles back-to-back.

During one such cycle-within-a-cycle I found beer to be a dead set trigger and that became the longest 11 days of my life since trying to pass the finals exams at kindy.

One day at a time, Nancy.  Just one day at a time, and we're always here for you.

J Headache Pain. 2005 Feb;6(1):3-9. Epub 2005 Jan 25.

Chronic cluster headache: a review.

Favier I, Haan J, Ferrari MD.


Department of Neurology, K5-Q Leiden University Medical Centre, 9600, 2300 RC Leiden, The Netherlands.

Cluster headache (CH) is a rare but severe headache disorder characterised by repeated unilateral head pain attacks accompanied by ipsilateral autonomic features. In episodic CH, there are periods of headache attacks with pain-free intervals of weeks, months or years in between. A minority of patients have the chronic form, without pain-free intervals between the headache attacks. Chronic CH can occur as primary or secondary chronic CH; the rarest form is episodic CH arising from chronic CH. In this article, we give a review of the chronic forms of CH and focus on demographics, clinical manifestations, social habits, predictive factors, head injury, genetics, neuroimaging and therapy. IT IS REMARKABLE THAT LITTLE IS KNOWN ABOUT RISK FACTORS THAT MAKE CH CHRONIC.

Publication Types:
Review

PMID: 16362185 [PubMed] 
===========
The last sentence is the controllin reality: no way to predict.

I'd be talking to the doc about using your preventive 100% of the time and not depending on the short term Pred. If you are using Verapamil, it's a med which can be used for long periods without concern. In past years, we've had folks who were on it 100% with good effect.

Of equal importance is your state of mind. Trying to predict the future is a quick route to chronic anxiety and loss of quality of life. Beyond learning how to treat ourselves as effectively as possible, learning how to cope with the unpredictable is a real survival skill with any chronic disorder.

Would encourage you to consider:

PAIN VS. SUFFERING

Please, reader, do not approach this little essay as an alternative treatment or cure for CH! Nothing outlined here is a substitute for good, sound medical care and treatment.

AT THE HEART OF THESE PARAGRAPHS is the recognition that pain and suffering are rather different experiences which can and must be changed by rather different responses. The pain of our CH is the subject of many of the messages we exchange, the topic fills the medical literature we read, and is the primary purpose for the multiple visits to doctors.

Suffering is quite a different animal. It is an emotional/psychological condition which is often experienced even when there is no pain; it is commonly experienced as fear, anxiety, depression, hopelessness, dread, and fearful anticipation.

Suffering is a normal, even automatic, response to pain, loss (as in death, divorce, or other major losses), and a host of other difficult experiences. However, suffering can be intensified, sustained, and even created quite independently of any of these experiences. In the case of our CH, suffering is too often experienced when we are not having attacks.

The hard paradox is: WE CAN SUFFER EVEN WHEN WE ARE NOT IN PAIN!  This is the paradox which we need to resolve if CH is not to be the controlling experience in life.

As you read our messages about CH they fall into two broad categories: causes, prevention, and treatment; and, the subjective experience or emotional side of CH. 

A sample of the "experience" messages which we see are along the lines such as:

"Ch is horrible; it never stops!" (Or it will never end; or they will go on all my life, etc.)
"I can't bear the pain!"

" Nothing makes me feel better!" (Or no medication works; all have failed and so on.)

"It's not FAIR!" (Or variations along the lines of, "why is God doing this?", "am I being punished?")

"I feel so GUILTY!" --because of how I burden my family or can't work, etc.

"The WORST thing in my life!" (Or some variation on how CH is a catastrophe that I can't handle.)

(Before moving on, you may recognize this concept as the core of cognitive therapy or Rational Emotive Therapy. These therapies are rooted in the basic idea that how we think about an experience creates corresponding emotional reactions--for good or bad. The research on the effectiveness of this approach is very good; outcome research shows that it is an effective form of therapy for depression, anxiety, and addictions of various types.)

Cognitive therapies teach people to recognize:

A. These thoughts may be spontaneous and automatic but,
B. They are not rational thoughts, and so, in their very lack of reason they,
C. Stimulate emotions which are disruptive, distorting, and which intensify the difficult experience of CH and,
D. This style of non-rational thinking and the associated emotions tend to spill out (generalize) into our larger lives affecting relationships, our beliefs in how effective we are, how well we are able to run our own lives, and so on.

IF (and this is often difficult to both see and to accept!) we can begin to see HOW our thinking may not be fully rational and HOW these ways of thinking feed our SUFFERING--then it may be possible to change our thinking habits.

The next step--past a willingness to consider that we may be thinking  this way--is to learn how to dispute with ourselves, that is, how to argue that our own thinking is not reasonable, that it is self-harming. Then we learn how to change these thinking habits (with the goal in mind that by changing how I think about my experience will change how I feel, how my emotions affect me.)

(Understand that this is an outline of a fairly involved process. I'm just trying to quickly summarize how this method of self-help works. Sources of material are at then end.) So, let's go back to the sampling of expressions which we see in our messages about CH and see how cognitive psychology would deal with them.

1. "CH is horrible; it never stops!" First, recognize the despair and hopelessness which arises from this statement: where will this line of thinking take me? So, we learn to respond more rationally, i.e., "Yes, it's hard pain--but it has always stopped even when I don't treat it. I can survive this attack as I have every other one. I need to do what I know helps."  The long term effective of this change in thinking is to increase self-confidence and a sense capacity to benefit ourselves.

2. "I can't bear the pain!" Response: "I always have. I know pretty much what to expect; I've got some medication which helps. I can bear the pain because I always have!"  Notice, this is not a denial of the pain; it's not a "let's pretend". The goal is to deal with the reality of temporary pain; pain which, as bad as it is, has always stopped with our return to reasonable well being. It is the denial of this, our personal experience, which arouses suffering and despair.

3. "It's not FAIR!", or thoughts of GUILT, or that I'm being PUNISHED. Response:  "This is my body not working right; it has nothing to do with morality or sin or fairness. My job is to care for ME, NOW, not fret about fairness." (The consequence of  an appeal to "fairness" is that we become victims. The problem with "guilt" is that we have to find a "sin" which justifies having CH or we must convince ourselves that we have chosen CH to avoid something or to hurt someone, hence, our sin. In the end, this line of thinking is not reasonable or rational and serves to create more suffering.)

4. "CH is the WORST thing in my life!" I often see folks express in their messages a sense of anticipation, of feared expectation about the next attack of cycle. There are few responses which lend themselves to the development of suffering better than this one: waiting for pain; looking for the next sign; assuming that it will come. Reflect a moment on what the impact is on our emotional well being and you may begin to appreciate why changing thinking habits is of value.  How to respond?  "It is the worst experience--when it's occurring--then it's over and I return to my full life. My whole experience says that I'll come through the next  one--when and if it comes. I don't have to wait and look for it; there is living to be done, now."

If you are interested in exploring this way of altering your thinking habits there are three readily available sources of information:

1. Go to Amazon.Com and put "rational emotive therapy" in the book search box.

2. Go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and get the catalog. (This is the homebase for Dr. Albert Ellis, the founder of Rational Emotive Behavior Therapy.)

3. Look for a paperback, FEELING GOOD: THE NEW MOOD THERAPY, David Burns, M.D. While this title is written around the issue of depression, the general framework can be applied to coping with cluster headache.
  This is true for many of the titles you will find at #2; REBT and  Dr. Burns' cognitive restructuring approaches have been used for a wide variety of problems--the general framework is fairly universal, in this sense.

I am getting to the point where think the labels of episodic or chronic are more trouble than they are a help. And I  am wondering if it isn't more critical to focus on abortives that work than preventatives that may or may not actually prevent the next attack. Here's what I mean: as Bob has said, suffering is probably an automatic reaction to pain. Stop the pain and while you may not have stopped the self-induced suffering you've at least cut off its legs. Then, while you feel more confident the pain can be managed or even abated, the search for a preventative could be more fruitful. I'm not saying don't search for a preventative. I'm saying in my experience I've been much more succesful with finding abortives, and this has improved my outlook dramatically.

On a side not, I wonder what percentage of us can say a preventative has really prevented a CH and for how long? blessings. lance

Nancy, sorry I don't mean to cause despair. I was just voicing about how my cycles have changed, along with the attacks. No, I haven't actually subjected myself to any meds other than OTC because every doctor and neuro have either always said they were either "migraines" or "well nothing showed up in the CT or MRI....no bleeding in the brain.....come back to the ER if they get worse". Round and round I went....so I gave up. Just figured that this was my fate, and there was no cure. I was just damned with them. Once I realized that I did infact suffer from cluster headaches (never formally diagnosed), I reasearched them and realized that medical science is basically clueless about them. I will however go to a HA center after the holidays, but yet I remain skeptical. I really just want O2, a preventative, and some kind of injection abortive. I have accepted that I will have to live with these for the rest of my life, but I just want to make my suffering as easy as possible for my supporters.

Yes Nancy, my attacks are very similar to what you described. I'll tell you mine stage by stage. First, the good ol shadow. A bruning/tingling sensation mixed with a warm feeling blanketing the right side of my head (very much like a head rush). At this point I know to look for a "hiding spot". Usually I remove as much clothing as possible. Secondly, the throbbing begins (not horrible pain yet) and the stinging sensations behind my right eye begins and becomes worse and worse with every throb. Now I begin to feel my temperature rise, not sweating yet but its definitely getting hotter. Now the pain begins to really come on. I find myself starting my breathing exercises and putting pressure at the base of my neck and between my eye.(Sometime I get lucky and it will go away at this stage) Next, I really start to sweat, my right eye begins to swell and tears form. These tears are not like normal ones, they will glue my eye shut if I don't wipe them away. Also, I can't open my eye any further than a squint. At this stage, if I am at home, I have completely isolated myself and am in the darkest room I can find.....sitting down and really focusing on my breathing. Next, the pain behind my eye has become so intense that I MUST cup it with the palm of my hand. (I hear people say that they press on their eye.....NO WAY can I press on it) Now I can feel sweat rolling down my back and with every heat flash I can feel faint....I pray to faint.....it never comes. I stay at this stage for quite some time....not sure how long. Then, the pressure begins to build rapidly. Feels much like my brain is in a blood pressure cuff. This is usually when I take the beast for a walk. Staggering down the hallways and entering unoccupied room after room looking for a cold place so I can breath. Nothing brings me relief now, sitting is about as appealing as trying to lay down. (This next thing will sound bad) Thoughts of suicide cross my mind. I begin to uncontrollably cry. No longer can I remain quiet. I wail and my son tries to come and be by my side by my girlfriend intercepts him. Now the pain is at a 10. I could be anywhere in the house at this point but you can be sure its not well-lit. I suddenly will stop crying and focus the remainder of my energy to get my mind off the pain....well as much as possible. Usually I'm propped up in a corner, arms at my sides, eyes glued shut, teeth grinding, and fists clentched tight. I begin to hold my breath in attempt to faint, but it never works. This is how I remain until I begin to feel cold. (This is when I know the beast is leaving) I have snot running down my chin, tears have fused my eye shut and I become aware of where I am at. If I can find the strength, I'll take a cold shower. Usually I just collapse in bed. Many things pass through my mind at different stages, such as visions of my son smiling, the smell of my girlfriends hair when she gets out of the shower, and flashes of the sins I commited in the past that damned me like this. If its a good day, I'll awaken just exhausted after 3 hours. On a bad day, awaken at about K5 and it will go to a 10 again. I'm so glad I don't have 10's everytime, but atleast one day and night a week in my cycle I will suffer 10's and have about 5-6 attacks in a 24 hour period. I used to watch the clock so I would know when my attacks were almost over, but now I know to wait for me to stop sweating and start cooling down.

First, I want to say thank you to Bob Johnson, your posts are always informative and helpful.  I find that it's helps me to realize that, not only are there other people out there who know what I'm going through and are making it, I too have made it and long before knowing what "it" was.

I took Verapamil for a while, and it seemed to help, but I was spending everyday with the effects instead of 3 - 4 months every other year with CH.  For me, I agree with Lance (wimsey1), I have better results with abortives.  Also, I never had a cycle in the winter until I took the Verapamil.  I got a cycle as soon as I stopped taking it and now I feel they are less predictable.  Seeing some of the other posts, that may be "normal", but I always associated it with the Verapamil.

One of the most frustrating things about episodic CH is it feels difficult to know if something worked or if it just stopped on its own.  It can take several cycles to figure these things out.  Good Luck with it all Nancy.

Re.#10, past para: YES! But you are not alone nor does this reflect some error on your part. Over the years we have had a steady streamof reports of a med stopping being effective after years of use.

The only option is to start working thru the standard treatments to find an alternative. (Likely the by-product of a Character-Building-Gene which the gods gave us to insure some moral modesty. <sigh>)

But see PDF file, below.

---

Quote:

The only option is to start working thru the standard treatments to find an alternative.

Or working through the alternative treatments to find one that works.  ;)

wimsey1 wrote on Nov 24^th, 2012 at 8:16am:

I am getting to the point where think the labels of episodic or chronic are more trouble than they are a help.

I agree with you on this Lance. It isn't as if there is any real difference between how CH is treated between episodic and chronic. There isn't a sudden change when someone just goes over the 365 day mark. It is more just a label to indicate how long they have gone without a break.

It also seems to cause a lot of people needless anxiety.

Quote:

It also seems to cause a lot of people needless anxiety.

Amen, brother.

Let me start by saying a huge thanks to everyone who has replied to my question!! Bob Johnson...I love your words of wisdom and I will look up the books!!
I did get emotional when I first read I could now be chronic, but I think deep down inside I knew that already!! I think part of that is I feel beat up right now...I had 3 weeks with 6 to 8 ch a day (most of them at night) and had to work 10 hours a day with very little or no sleep. Then I had surgery on my vocal cord and sinus with a ruff recover. My surgery was just 10 days ago! Then I got a week of pf days from the ch but felt like crap from the surgery. Then back to more ch!! My body feels like its been through a war!
Tim in Texas...you did a great job describing ch's!! I too find someplace where I can be alone!! I don't want anyone to talk to me or look at me during a ch, it hurts to talk and I look like death. Mine are on the left side and yes I do cup and hold presser on my eye at the high point of pain. My eyes also tear, but does not seal closed, my nose also runs. I start off in a dark room and once the pain in unbearable I too either crawl or hold the wall and go from room to room for no other reason that I can't sit still! I usually end up in the bathroom so I can get sick!! I open the bathroom window in the winter so I can get cold air on me. I also go outside in the dead of winter (my body will steam from my body temp), I find if I can cool my body temperature down the pain lessens. In the summer I will lay on the floor with a fan blowing directly on me. I know the headache is almost done when I start shacking from being cold!! I sometimes fall asleep on the floor and once I wake up I am so weak.
Tim....What is a HA center? Any good Neurologist should be able to correctly diagnose you with ch from what you just wrote me!!
You can shorten the ch with a shot of Imitrex or
sumatriptan Succinate injections and they come in pill form, but the shot works faster and I can't hold anything in my stomach. Don't wait until after the Holidays....print what you wrote me and find a good Neurologist next week!! Also have them give you the 15 day Prednisone treatment!! It worked great for me for over 15 years (until this cycle)!! Its 60mg for 5 days, 40mg for 5 days and then 20mg for 5 days. I would be pf by day 10 but still had to finish my 15 day treatment before I would consider myself in remission again.
Please let me know if you get help, I feel so bad for you!! I was misdiagnosed for 20 years!!

Thanks again everyone!!  :-*

Head Ache center. I want to go to them because the one I want to go to has Neuro's that deal only in Clusters. My boss knows a Neuro who will most certainly script me O2.....and that is what I really am after. Would also like a "sure-fire" abortitive. A preventative would be nice too. I am waiting for the holidays to see of infact I have gone chronic. I am clinging on the hope that this is just an unusually long cycle. I think its not....but I can hope. I have reached the point to where the shadows aren't. With me all the time, and I've been able to abort mine with breathing exercises and other non-medicinal methods. I think....err I PRAY that this cycle is coming to a close. I won't need a letter describing my headaches to a Neuro. Been having these damned things for years. Anyhow, I gotta 4 year old fighting for my attention. I hope a PF night for you and everyone here....GoodNight!

I'm chronic now. I went into a cycle in September of last year, and it hasn't left me yet. In some ways, it's been easier to be chronic. I always have my meds lined up, and I have a continually replenished stockpile of Imitrex. Oxygen in the car, in the house, at work. I have FMLA leave if I need it (if the beast hits too late in the day to go to work, I won't have to worry about unemployment). In a word, I'm prepared.

Being ready is a small comfort in the face of daily pain, but it's what I hold on to. I wish you the same.

I can't get my meds stocked piled!! My insurance is only covering 5 vials of Sumatripta Injections (Imitrex every 7 days) Each vial is suppose to be for 1 headache and I have been getting 6 to 8 a day (although I have been getting a few less this past week). I straight my vial as far as I can...I can get 3 to 4 shots out of one vial by only using 10 cc for each headache, but I still find myself running out before the 7th day when I can get more. I am going to call my insurance company tomorrow and talk to them with hopes of being able to get more or get them more often.
I had a 5 year 9 month remission before this cycle!! I don't want to be chronic!! I want my life back!!  :'(

Just a side note: I am a very active person!! I am on the go all the time! We have a mobile home on a lake that we go to every weekend in the summer. Its a two hour drive one way. We have a group of friends at our resort that was do all kinds of fun things together. How am I going to do anything with not knowing when I am going to get hit!! I am in fishing contests and take the boat out by myself! What happens if I am on the lake and get hit!! So many questions!! I am trying to stay positive, but I'm having a very hard time doing that. I have a temp job that is about to end and I don't have any family leave or medical time to take off..I could lose my job, Then when and I find another job, how long would they keep me!! I would have to work as I have right now, with NO SLEEP. I can't afford oxygen, I tried years ago...its way expensive and my insurance sucks!! I feel like my life is over!!!!!!!!!!   
OK, Debbie downer is done!! Yes, I am feeling sorry for myself right now!! I hate my life! I'm normally a very upbeat, fun loving, practical joking kind of person that always has a smile on my face! I'm not used to feeling this down!! I find tears in my eyes several time a day. :'(

Nancy,

Don't fear chronicness.  I've "enjoyed" it now for about 12 yrs, give or take after over 20 episodic.  The biggest advantage to me is I expect to get hit on a regular basis, so I'm mentally ready to deal with it.  When I was episodic I was constantly looking for the end of the cycle instead of dealing day to day.  Also, when I was between cycles I was living in fear of when they would return.  While I would love for CH to disappear I would rather remain chronic than to deal with the uncertainties of living episodically.

As to O2, there are options that are much less expensive than some medical suppliers.  Also, if you approach a med supplier as a cash customer you can often get a major reduction in the prices charged.  One supplier I used to use did that for me.  Unfortunately, they were bought out by Walgreens and will no longer allow me to use my own regulator or to use a Y to connect two tanks together.  Since they know I am a patient that uses more than 15 lpm (their highest regulator) they will no longer provide O2 to me, knowing I would use my own regulator.  I suggest you look into welding oxygen.  It is a bit of an investment in the beginning, but in the long run is very economical, especially if you purchase a transfill device that allows you to fill a smaller cylinder from a large tank.

Jerry

Jerry,

I really don't have the money right now to invest into oxygen. I am still trying to catch up on bills from when my job of 14 years downsized and I was let go! I couldn't find a job for 3 years until I got this temp job I am at now! I have been at this job for 18 months but its due to end on Dec 28th, I'm hoping to get it extended, but its not looking good!  And then as my (our) luck would have it...my husband got hurt and had to go on workmans comp for 6 months. He is still recovering from his surgery and is on light duty at work.
There is nothing good about being chronic....I would have long remissions when I was episodic and I could live a normal life!! Then when I came out of remission I would go on the 15 day Prednisone treatment and go right back in remission. I would much rather fear the ch coming them to have them come all the time, that's a no brainier. Plus with my active spring/summer life, being chronic will put a stop to that!! We have a very large group that enjoy have a few drinks/beers around the campfire or going on the lake and for a hillbilly yacht club party. As if right now, just looking at a beer gives me a ch.
It looks like I will just have to sit inside and wait for the next ch to hit me instead of enjoying the life I used to have.
   

Well you can do things that way, Nancy, but I'm telling you I've tried your method and found it lacking. No matter how much I tried to run from CH, it would find me. So staying inside, avoiding the campfire and other people? That only isolates you. If you're going to get a CH regardless of what you do, it makes sense to live life and let the CH come when it does.

If you don't feel that oxygen is worth struggling for, then there are other options. (BTW, it's totally worth it!) Before getting 02, I would run sprints or hyperventilate regular air. It helps. Ice packs, hot packs, and energy drinks do too! Venting feels pretty good, no doubt, but stick around for some more options. We gotcha!  :)

I was episodic then chronic then episodic.

Here's something to consider:

Almost every clusterhead I've ever asked has said that which ever they are (either chronic or episodic) is easier to deal with.

In other words, every chronic I've asked has said unequivocally that they couldn't imagine not knowing when it's going to hit. Conversely, almost every episodic has said they couldn't imagine getting hit every day.

So what we have is a classic case of people thinking that their own side of the fence has the greener grass.

My own advice - stop worrying about it. Both presentations suck.

Mer,

Your not going chronic.

Go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and then read some more.

Coach Bill

Nancy, I'm going to have to agree with the posters above. You are already putting money out on imitrex (by the way, you should read and employ the imitrex tip at the left to stretch out the shots regardless of what the Rx label says) which isn't as effective as O2, so why not stop that and try O2? It could well be the abortive you are looking for and need to restore some sense of management to your life. People here will help you with a set up if you can't get medical O2. We wouldn't be pushing this if we didn't find it to be the best abortive around. OK, my last word on the subject. God bless. lance

I pray you guys are right about me not going chronic!! It has been a week since I have had one, but I still feel the shadow just waiting to pop out. I can't wait to read the link you sent coach Bill.
I will keep everyone posted! I pray I can go back in remission!!  ;D

See?  I was right all along!

One day at a time, Nancy.

One day at a time.

I know everyone was right!! But its hard to see when you are on the pitty pot!!  :D
Thanks for all the support everyone!! I needed to get kicked in the butt to get myself to fight this monster back!! I am not going to let it win over my life!!

I truly hope this remission follows through.   :)

In the past, a prednisone taper has helped you for short cycles.  If though, that does not conclude an episode, when the pred taper is done, clusters can come back with a vengence.  The Imitrex has helped but can run short.

Your cycles may be longer if they return and you don't want to repeat this experience.  It might be good to expand your treatment, like starting a preventive med or treatment also when you start the prednisone, so something is protecting you when that taper ends. 

You've tried oxygen before, it can work and we can help you with it, keep it at home if you like.  Use the Imitrex on the road and on the job if needed.  Starting the pred taper with a preventative and having oxygen and Imitrex may allow you to manage an episode so as to not interfere with life and work so much.    Next time.        :)

You can also start the D3 regimen at this time and see if it can do any preventing for you against future bouts.

I just took day 4 of the D3 regimen!! I'm not sure if that is why I have not had a ch in 6 days, but I am just happy to start counting pf days again. I do still feel the shadow of Mr. cluster, I just hope the shadow leaves me soon! I'm here to let the monster know he isn't welcome in my life!! >:( One can only hope!!   :)

Stick with it, Nance.

Chronic as of December 1. It's a lovely club, come on in and sit down. Have a glass of wine and some shellfish.

It's just a label. We all suffer, some more than others, some longer than others. The goal here is to help each other through it as best we can and try whatever means possible to figure out what works best for the individual. Sometimes it's just talking, venting and yelling to let it out. I hope you are feeling better and you can and will great help here.