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        Cluster Headache Help and Support >> Cluster Headache Specific >> Input Please! Very Frustrated.
        
(Message started by: ClusterChris on Aug 12^th, 2007, 10:27am)

Title: Input Please! Very Frustrated.
Post by ClusterChris on Aug 12^th, 2007, 10:27am

My cycle started in late april and lasted a couple months. I though they were gone when I went on my Florida trip but I got hit with small shadows the whole time I was there. That was in June. a couple weeks later they got stronger and more frequent, then fired right back up again untill about 2 weeks ago. I was pain free up untill two days ago. I had two mild hits 12 hours apart, I just took a couple advil liquid gels and they were gone in about twenty minutes. Now yesterday, I woke up at 12:30 am With a kip 8 or 9. and I have been getting hit every 4 or 5 hours since. This is very abnormil for me. I was usually a once or twice a year cycle lasting about 1.5 months. This is really throwing me for a loop and I don't know what the hell is going on. Has anyone ever experienced a cycle like this? I'm a little paranoid that this could be the start of going chronic. I know that you have to wait a year to see if I'm really chronic but I would like some input from anyone that has experienced this. Thanks in advance for the replies!

PF wishes to you all!!

Chris

Title: Re: Input Please! Very Frustrated.
Post by George_J on Aug 12^th, 2007, 10:43am

Hi Chris,

I'm sure you'll hear that the beast does what it does--sometimes its sheer unpredictability is its most predictable aspect. Sorry to hear you're getting beat on again.

I recall that you recently began using oxygen. Have you been doing anything else that's different lately than you've done before? Maybe we can help you pinpoint something that could be affecting them if we have a little more information.

But it may be that the beast is simply morphing on you.

Best wishes,

George

Title: Re: Input Please! Very Frustrated.
Post by Lenny on Aug 12^th, 2007, 11:03am

Chris,

This is how the beast visits me (no alarm clock type,i have never had that)the only predictable attacks are 1/2 - 1.5 hours after i fall asleep... be careful of what you worry about... if you do it too much..it may come true,and if it does,just remember ( the big guy above will not give you nothing you cant handle)... wishing you many PFDAN....Lenny

Title: Re: Input Please! Very Frustrated.
Post by Bob_Johnson on Aug 12^th, 2007, 11:48am

Need to know what you are using, dosing, etc.

At this point, only possible to observe that it's not unusual for a med to stop working after a period of success. It may be necessary to begin a new set of trials to find a med/meds which work for you.

Title: Re: Input Please! Very Frustrated.
Post by ClusterChris on Aug 12^th, 2007, 12:58pm

Thanks for the replies. All I am using is O2 and Trex. The only thing different is that this is my first cycle using O2 so I hope to hell it's not the O2 Prolonging the abourt of this cycle. One other thing is that i just went almost 2 years PF my last remission so perhaps the beast is makig up for lost time. I don't know, This is my longest cycle in 17 years so I am totally frustrated.

Chris

Title: Re: Input Please! Very Frustrated.
Post by Grandma_Sweet_Boy on Aug 12^th, 2007, 1:03pm

Chris - I sure do hear and understand your frustration.

I was 3 years and a bit completely PF and then out of the blue got hit again about 3 weeks ago.

This has been my strangest cycle - attacks seem more random.

I'm convinced the Beast has a mind of his own and doesn't play by any of the normal rules known to mankind.

All we can do is continue to fight him and to support one another.

Carol

Title: Re: Input Please! Very Frustrated.
Post by michael on Aug 12^th, 2007, 1:11pm

I had my strangest cycle ever in 40 years this year, multiple hits every day. It seems, reading the board since I found it in April, that many on here have also had weird cycles this year.

Mike

Title: Re: Input Please! Very Frustrated.
Post by nani on Aug 12^th, 2007, 1:47pm

on 08/12/07 at 12:58:49, ClusterChris wrote:

All I am using is O2 and Trex. I hope to hell it's not the O2 Prolonging the abourt of this cycle. .

Hi Chris. As others have said, these change. The only constant is that they change.
The O2 and Trex will abort an attack, but not a cycle. There is some discussion that overuse of trex may result in additional attacks, or prolong a cycle. I doubt oxygen has anything to do with it.
You haven't mentioned any preventatives, which help many of us keep things manageable. Of course, there is also some discussion that some prevents, like verapamil, may also prolong a cycle. :-/

Chronic, is one full year without a 30 day remission. Don't spend any energy worrying about it. Just deal with one day at a time.
pf wishes, nani

Title: Re: Input Please! Very Frustrated.
Post by horsegirl on Aug 12^th, 2007, 2:45pm

this ofcourse is just my oppinion and experience, when ever i travel to far, if it was close to when my cycle would start , it made it start, so its possible , it was to soon for you to trvel, and started it all over again, the o2 has prolonged a ha , but never a cycle for me. maybe you should get on a preventative like verapimal ,works for me.

Title: Re: Input Please! Very Frustrated.
Post by vietvet2tours on Aug 12^th, 2007, 3:10pm

on 08/12/07 at 14:45:08, horsegirl wrote:

::) ::) ::)

Title: Re: Input Please! Very Frustrated.
Post by kcopelin on Aug 12^th, 2007, 3:18pm

1. CH changes, like a Borg-it seems to adapt to each new weapon.

2. Abortive, preventative and transitional meds-you only mention abortives. Even though the efficiency of any and all of these meds can change, ya gotta hang in there and keep changing the combination til it works-always remembering 1.

3. Never, ever waste time worrying about becoming chronic.

PFDAN y'all
kathy

Title: Re: Input Please! Very Frustrated.
Post by Bob_Johnson on Aug 12^th, 2007, 4:10pm

http://www.plainboard.com/ch/chtherapy.pdf

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

Title: Re: Input Please! Very Frustrated.
Post by ClusterChris on Aug 12^th, 2007, 5:59pm

thank you once again for your great replies. I have tried preventatives however I didn't feel they were doing anything different to my cycles compared to when I wasn't taking them. Imitrex scares me enough so I don't want to put anymore toxins into my body that I really don't need. They are called preventatives but do they really prevent anything for us? I have not heard anyone say that since they started a prevent like verap that they get less cycles. Just my opinion. I also realize that I shouldn't aste my time worrying about becoming chronic but that is pretty much impossible. Anyone that is episodic and has a long cycle has to think the same thing because that is the only other thing that could make us worse off then we already are. For you chronics reading this, God bless you. As for the oxygen prolonging a cycle, I just kind of threw that out there because that is the only new thing I have done for this cycle and it's my longest one yet. Must be something realy messed up going on for alot of others to be going through the same kind of thing. There has to be a reason for it. Well, I guess I'll try to ride out the storm a little longer but The bastard is really starting to beat me down! Does anyone have any spare peices of drywall laying around, preferably the size of my head and fists? I may need a couple hundred of them! Thanks for listening, time for dinner.

Pf wishes guys and gals!

Chris

Title: Re: Input Please! Very Frustrated.
Post by ClusterChris on Aug 12^th, 2007, 6:14pm

ok I just got my dinner served to me at my computer thanks to Bob. I started reading that article and couldn't stop. Has anymore research been done with the Hypothalamic Stimulation??? That looks very promising and sounds like it wouldn't be that harmfull or dangerous. How nice would that be to just hit a switch when your cycle starts and just keep checking to see if its over. WOW. This has definately got me excited.

Chris

Title: Re: Input Please! Very Frustrated.
Post by E-Double on Aug 12^th, 2007, 8:54pm

The data is actually NOT very promising nor are the risks.

There are so many options one has prior to any surgical procedures.

Preventatives do not necessarily prevent CH from occurring but may decrease frequency and intensity.
Although it may "prevent" some from developing.
Who knows.

I went at it the past yr and 1/2 without taking meds (I'm chronic for 3+) and last month I finally decided that after 3 months of little sleep I needed to get rest.

I went inpatient for a few days and have been sleeping ever since.

I'm back to very few attacks and feeling good.

If it didn't work or if things really start up again then no ifs ands about it I will be "busting"

Feel good and breathe

Title: Re: Input Please! Very Frustrated.
Post by barry_sword on Aug 13^th, 2007, 8:45am

Hey Chris, sorry you are getting beat up. I am into my 10th month with this cycle and no signs of it letting up. I have found the right dosage of Verap. (480mg daily) that seems to be keeping the beast at bay, for now. The odd hit sneaks through but my o2 takes care of them quickly.

I hope you find something as a prevent that can give you some relief. This is the worst and strangest cycle for me also this time.

Hang in there buddy, we are in this together.

Barry

Title: Re: Input Please! Very Frustrated.
Post by aceserve on Aug 13^th, 2007, 10:22am

Chris,

Try this, which I feel has had some effect: Take a bunch of melatonin, at least 6mg, before hitting the rack. If you wake up with a shadow, take another 2 mg with a Red Bull, drunk all at once. Have the Trex handy if that doesn't work within a few minutes.

Suerte,

Andrew

Title: Re: Input Please! Very Frustrated.
Post by ClusterChris on Aug 13^th, 2007, 11:00am

Hey Barry,

I thought you ended you cycle. Sounds like you are going through the same shit I am. I am going freakin nuts here, I had two solid weeks with nothing, I got drunk a couple times and still nothing, then bang. Have you tried the shroom treatment yet?? I think I'm going to give it a shot. I just strted my 3 week vacation from work and I am desperately going to try and end this cycle so i can enjoy at least a week of it. Thanks for the tip AceServe. I'll giveit a shot sometime, Redbull in the past seemed to have no effect on my ch but maybe the combo will change that.

Frustrated as hell,

Chris

Title: Re: Input Please! Very Frustrated.
Post by Guiseppi on Aug 13^th, 2007, 11:21am

It's been a weird year for cycles. After about 28 years of cycles you could set a watch to, 2X a year spring and fall 8-12 weeks, out of the blue I was blessed with an 8.5 month cycle. When they tell you not to worry about going chronic, they mean don't obsess on it. Of course you'll constantly be thinking you've drawn the black marble and now this thing will never give you a break, just don't let those thoughts blacken your world.

As far as prevents, I use lithium. It has never shortened or broken a cycle for me, it just means instead of the usual 2 headaches a day, I average 1-3 a week. manageable with oxygen and the occasional imitrex jab. I hear you as far as the amount of toxins we shove into our body, it's a balancing act, the whole quality of life issue. A very personal, intimate decision that is entirely up to you.

I know sometimes it gets said too much on the board but really, attitude is your best weapon. The headaches will be what they'll be, don't let them change you. Hang in there.

Guiseppi

Title: Re: Input Please! Very Frustrated.
Post by barry_sword on Aug 13^th, 2007, 11:39am

Hi Chris, I had thought my cycle had ended a couple of times but as soon as I started to taper off the Verap. WHAM!! I am staying on the Verap. for awhile yet. I remember my first cycle lasted 2 years, that is when my GP was treating me for "sinus troubles".

I don't think I will try the srooms as I have something that seems to be working for me, for now.

Sorry this had to happen with you starting holidays, that really sucks! I am on my 2nd week of my holidays but I am able to ride and do stuff thanks to my med and o2.

Guiseppi said it best, ATTITUDE!!!! Fight the fight, but do not let the beast win!

Take care Chris, this will pass.

Barry

Title: Re: Input Please! Very Frustrated.
Post by ClusterChris on Aug 13^th, 2007, 11:50am

Thanks for the motivation guys. Guiseppi, 1-3 Hits a week??? I'd give my left nut for that. I have never had less then 3 hits a day while in cycle. Keep up the good work! That definately boosted my spirits.

Chris

Title: Re: Input Please! Very Frustrated.
Post by Bob_Johnson on Aug 13^th, 2007, 12:18pm

Re. Oxygen: although many folks here love it, we have also seen reports here and in the medical literature, of it stopping being effective for ???? reasons. But this is also true of all the meds we use. Much frustration but doesn't mean that you are anymore abnormal than the rest of us! <bg>

Re. hypo stimulation:

Brain. 2005 Apr; 128 (Pt 4): 940-7

Hypothalamic stimulation in chronic cluster headache: a pilot study of efficacy and mode of action.

Schoenen J, Di Clemente L, Vandenheede M, Fumal A, De Pasqua V, Mouchamps M, Remacle JM, de Noordhout AM.

University Department of Neurology, University of Liege, Liege, Belgium; University Department of Neuroanatomy, University of Liege, Liege, Belgium.

Summary We enrolled six patients suffering from refractory chronic cluster headache in a pilot trial of neurostimulation of the ipsilateral ventroposterior hypothalamus using the stereotactic coordinates published previously. After the varying durations needed to determine optimal stimulation parameters and a mean follow-up of 14.5 months, the clinical outcome is excellent in three patients (two are pain-free; one has fewer than three attacks per month), but unsatisfactory in one patient, who only has had transient remissions. Mean voltage is 3.28 V, diplopia being the major factor limiting its increase. When the stimulator was switched off in one pain-free patient, attacks resumed after 3 months until it was turned on again. In one patient the implantation procedure had to be interrupted because of a panic attack with autonomic disturbances. Another patient died from an intracerebral haemorrhage that developed along the lead tract several hours after surgery; there were no other vascular changes on post-mortem examination. After 1 month, the hypothalamic stimulation induced resistance against the attack-triggering agent nitroglycerin and tended to increase pain thresholds at extracephalic, but not at cephalic, sites. It had no detectable effect on neurohypophyseal hormones or melatonin excretion. We conclude that hypothalamic stimulation has remarkable efficacy in most, but not all, patients with treatment-resistant chronic cluster headache. Its efficacy is not due to a simple analgesic effect or to hormonal changes. Intracerebral haemorrhage cannot be neglected in the risk evaluation of the procedure. Whether it might be more prevalent than in deep-brain stimulation for movement disorders remains to be determined.

PMID: 15689358 [PubMed]
=================
Neurology. 2006 Jul 11;67(1):150-2.

Hypothalamic stimulation for intractable cluster headache: long-term experience.

Leone M, Franzini A, Broggi G, Bussone G.

Istituto Nazionale Neurologico Carlo Besta, Milano, Italy. leone@istituto-besta.it

The authors report long-term results of continuous hypothalamic stimulation in 16 chronic drug-refractory patients with cluster headache (CH). At a mean follow-up of 23 months, 13 patients are persistently pain-free or almost pain-free, and the other 3 are improved. There are no persistent side effects. Hypothalamic stimulation is an effective, safe, and well-tolerated alternative to surgery for chronic patients with drug-refractory CH.

PMID: 16832097 [PubMed - in process]

Title: Re: Input Please! Very Frustrated.
Post by ClusterChris on Aug 13^th, 2007, 1:04pm

yes bob, That is the article I was refering to.

Chris

Title: Re: Input Please! Very Frustrated.
Post by seasonalboomer on Aug 13^th, 2007, 1:37pm

Hey Chris,

sorry to hear you are having a bad time.

I also had years of consistency. The past couple of years are just wierd. Some cycles that were a walk in the park. Other's that seemed like they'd never end (like this present one).

O2, for me, has seemed to lessen in effectiveness this cycle but the Imitrex still works. O2 used to "bat" almost .800, now it is in a slump, batting less than .300.

The darn things change, which seems to be the only guarantee around here.

I'm crossing into 8 week territory with my cycle and hoping to see a few signs of its departure soon.

Scott

Title: Re: Input Please! Very Frustrated.
Post by buhrly on Aug 13^th, 2007, 3:24pm

i was 5 years pf till a couple months ago. does seem to be a strange year with the other posters also. my meds arent working like they used too either(verapamil & depakote) caffine used to be a trigger and now its a preventive. just doesnt make sense. just keeping at it day to day

Title: Re: Input Please! Very Frustrated.
Post by UN solved on Aug 13^th, 2007, 7:04pm

I don't mean for this post to sound negative ... but 2 things have bothered me about this thread:

(1) I've seen Trex, O2, Verapamil, Melatonin, and other drugs mentioned in this thread, but only one person (Bob) has mentioned a doctor. You need to find a good doctor, prefferably one that has treated cluster patients before.

(2) You dont want to put 'toxins' like Trex in your body, but you think think that Deep Brain Stimulation "looks very promising and sounds like it wouldn't be that harmfull or dangerous.". I think you need to research the subject alot more. They do drill a hole in your skull (does that sound harmful or dangerous?) ... and they do place electrical wires deep in your brain (does that sound harmful or dangerous?), and don't forget the easiest part of it all, the batteries implanted in your chest (harmful? Dangerous?).

No worries though, because you wouldn't be picked for a DBS anyways (Not in this stage anyway). (There are others that are worse off than you that has been suffering longer than you)

I do hope you find some relief soon Chris! I hate to hear about another in pain!

Goodluck & PF Wishes

UNsolved

Title: Re: Input Please! Very Frustrated.
Post by rolo65 on Aug 13^th, 2007, 7:42pm

on 08/12/07 at 15:18:09, kcopelin wrote:

Never, ever waste time worrying about becoming chronic.

It's a waist of time. I quit worrying about being chronic years ago because I am chronic and I know I'll be out of cycle when I kick the bucket! ::) :-X

Title: Re: Input Please! Very Frustrated.
Post by sldrswyfe on Aug 13^th, 2007, 8:18pm

Hi Chris,

So sorry you are going through this and so terrfied... :-[

I am chronic, 14 yrs. now, (and I accept your blessing, the same to you!), anyway, I thought, for this first time in fourteen years, I was turning episodic!!

CH's for me are random, they don't discrimate..day, afternoon, evening...nite ::) but I noticed a defininative pattern about three months ago...every night at about 6:30-7:30pm. for 27 days straight I got a kip 10, and it would never fully go away...

Then, things went back to the same way after 27 days...so, as everyone is saying, these are ever-changing. I won't tell you "don't worry", because that won't help...though you shouldn't. Im chronic, and you handle whatever you have to somehow.

Do the very best you can. And please, if possible, don't scare yourself senseless. You will get through this...You are in my prayers. :)

Title: Re: Input Please! Very Frustrated.
Post by ClusterChris on Aug 13^th, 2007, 9:11pm

nsolved, I hear ya bud. I didn't ever think that I would be considered for the stimulation, I was just saying I would be really interested in hearing more about it. Perhaps the procedure may be dangerous but that doesn't scare me one bit. Living with my headaches for the rest of my life scares me a hell of alot more. I know I'm sounding a little bit like a whiner but Please don't take it that way! I've dealt with it for 17+ years now, I think I can manage. sldrswyfe, Thank you for the kind words. You chronics are always in my prayers!

Chris

Title: Re: Input Please! Very Frustrated.
Post by brauer100 on Aug 13^th, 2007, 9:17pm

I know how frustrating the fear of waking up every day with a cluster can be. I've been chronic for two years now, and I keep hoping I'll wake up tomorrow without one. And maybe I will! But sometimes the serenity prayer helps me get through the frustration of what I can't control:

God, grant me the serenity
To accept the things I cannot change
The courage to change the things I can
and the wisdom to know the difference

Sometimes it helps. Sometimes it just pisses me off.

Sorry, I hope it helps. I hope you get over the cycle soon. Worrying about it doesn't help, if anything it will just make you crazy. Sorry, I wish there was more I could offer, but I do know that worrying won't change anything, so it's best to just let it go and see what happens. Every day is different. That's what sucks about cluster. Just when you think you have your cycles figured out, they change and go crazy on you. I hate that crap, and I really hate that you're going through it. Sorry it's going crazy on you. Hang in there. You'll sort it out again. And hopefully your cycle will go away and give you a break soon.

If it's any consolation, when I went chronic, my cycle didn't get crazy and change on me like that...it just never stopped. So hopefully this change doesn't indicate that you're going to suddenly go chronic; maybe it's just one of those crazy cycle changes that happen to us all from time to time.

And even when we do go chronic for a while, we can always flip back to episodic. That's the hope that keeps me going.

:)

Kate