HELP HELP HELP!

Ive been in cycle now for just coming into my 5TH week, my cycles normally only last 3. Ive been taking melatonin for 2 years and managed to keep the beast away for an extra year but the son of a bitch is making me pay for it now!!

The daytime attacks have stopped or are at least managable 'cause i can catch them early with O2. Its the night time attacks that are the problem. As usual with us us 1 hour (to the minute!) after i close my eyes to sleep they start and then continue every time i nod off. Im currently taking 200mg of verapamil (before bed) and melatonin.

Im at my wits end! im getting around 1 or 2 hours broken pain filled sleep a night and im not sure how much more i can take. If i nod off in the day the same thing happens, im staying awake for 1-2 days straight but that seems to make it worse. I cant think straight,cant concentrate, im permanently on a short fuse my head is constantly sore,my appetite has dissapeared,im living on red bull,coffee and pro plus! i occasionaly get 3 or 4 hours then seem to have a good day but f**k does it make me pay for it after!! I cant work because im permanantley exhausted but after 5 weeks off things are getting desperate!!

Can anyone recommend anything for the night attacks.If i can sleep i can take anything the beast throws at me but the lack of it is driving me insane,theres no let up! The more tired i get the worse the night attacks seem to be but i cant get any rest to make them better. After a month without sleep things are starting to get REALLY funky.

At this point if knocking a 6inch nail through my skull would make this go away id do it with a smile on my face and think myself lucky for it! F***K, the way i feel right now i may just try it!

HELP HELP HELP HELP HELP HELP HELP HELP HELP

At this point i just want to say that i have the BEST wife in the whole wide stinking world! She has been nothing but a pillar of support help and understanding. Im a 6ft 14 stone lump of growling misery and she has nothing but smiles for me.

Sonia I love you. There arent words to express my gratitude!

Thanks for reading my rant,its helped!

Any practical help or advice would be massively appreciated.My appologies if it doesnt make sense at times - its taken an hour to type, i just cant focus man!!!


Simon.

Click on the Oxygen info link on the left.

Nighttime attacks are horrible to deal with.  02 helps most people knock out the beast within 10 minutes.  Drinking an energy drink with taurine (Red Bull, Monster) also helps at the first sign of a ch.

Continue to read and read some more.  There is a wealth of info here.

Give Sonia a big hug.  She sounds like a keeper.  :)

Red Bull might also keep you awake at night if you're not used to the caffeine, but you'll probably find that your body gets used to it pretty quick, so don't rule this out as an option. I know it works wonders for me late at night.

Hi guys

Many thanks for the advice but i use o2 and red bull regularly (ive already got through almost 60 cans so far this cycle and dont think i can stomach any more). i can get through a tank of o2 in one night (15ltr min with my own rebreather mask) as once the initial sleep attack hits i get one as soon as i settle down to sleep again and this will continue until i eventually give up and stay awake but i cant stay awake for ever. At the moment one hits as soon as i nod off to sleep - day or night and i simply cannot get any rest and dont know what to do.

Im after more of a preventative than an abortive - even if it shunts the attack to the daytime at least im awake then to deal with the initial signs.

i dont know how much longer i can continue without being able to sleep,its impossible. Its not that i dont try to sleep, its that im constantly woken up in pain as often as every 10 mins. I cant remember the last time i dreamt and if im not dreaming im not resting.

Does anyone know any meds that may help so i can ask my doc for some?

calisto wrote on Jul 4^th, 2010 at 11:40pm:

Im currently taking 200mg of verapamil (before bed) and melatonin.

Episodes work their way in to a peaking period sometimes, what seems the worst part of it.  At this time, the ways we deal with CH to get by may come up short. 

The verapamil dosage you're taking may not be effective enough.  Whereas a certain dosage might usually hold, I've had to move up gradually higher at times to get relief, in fact to 720mg divided up in a day for short periods. 

Before thinking the verapamil might not be effective, ask your doctor if the dosage could be increased gradually since your system is already familiar with it now.  That is, if you've not had side effects that may limit this option.

You may want to consider a long-lasting triptane to catch up on some sleep. Versus imitrex, zomig etc. these have a half-life of 24hrs. They have never worked 24hrs for me but can yield 8-10hrs. Not a long-term therapy but maybe useful for a few days to get the tiredness out of your bones if other prevents arent doing the job.

Consider discussing Verapamil dosage with your doc. 240mg strikes me as low. Many here take 480mg and upwards for effective prevention.

It's not clear whether you are using Verap. from time to time in an effort to block night attacks OR are you taking this dose every day for long term prevention. If the former use, it won't work. This med takes some days to become effective and it requires rather higher dosing for CH prevention.

An old med which is helpful--if you can find it (check with the drug store)--is ergotamine, 2mg SL. Dissolved under the tongue about one-hour before bedtime, it often blocks night attacks and attacks which are triggered by exercise, etc.--any activity which raises the body temp.

Hi Calisto sorry to hear you are having such a hard time.

I would definitely ask your doctor to UP your verapamil asap.  200 mg a day seems like a low dose to me.

Give your doc a call and let him know you're getting creamed. When nothing else would work I'd occasionally go on a prednisone taper, in the middle of a cycle, just to get caught back up on rest.

As others have mentioned, your verapamil dose is relatively low. Some on the board go as high as 960 mg a day to get relief. A short 10 day prednisone taper should give you a break from the beast while he ratchets the verapamil dose up. Hang in there. :'(

Joe

Wow guys what can i say but thank you. the response has been fantastic.

Ive tried steroid tapers before and it did nothing. Ive got an app with my doc tomorrow but i cant go through another night like this. im going to try upping my verapamil dose tonight,not a huge amount just up to about 280 and then increase gradually.rather than take it all before bed im taking smaller amounts throughout the day. ive been on it for a month now and i feel fine so i should be ok to increase. I agree about the doseage it is rather low. i havent increased earlier because my cycles normally ended by now and ive usually managed without it. At this point ill try anything.

On a lighter note, my wife said before she left for work,

"youre not going to do anything silly are you?"

"like what?" i replied

"like knocking a nail in your head!"

that got the only response it could,

"silly arse!!!!"

(im always saying id willingly knock one in if itd stop it and you know what? i would!!)

With regards to the ergotamine, can i use it with imigran and is it available in the uk? Anyone know the doseage cos i doubt my doctor will but she will take advice cos she knows how long ive had ch's and knows im not silly with my meds.

Again a big thank you to everyone whos taken the time to post a reply.

Are you taking the sustained release version of verapamil, or the standard, "all at once" formulation? If you don't know, you should find out. Then insist on the "all at once," non-sustained type. It has been proven to work much better for CH.

You CAN NOT take ergotamine with any triptains such as imigran in your system.  The side effects can be deadly.  Your heart just can not take it.

Karla, a single 2mg dose of ergot. is not a threat. Using both triptans and ergot. on a daily, full dosing basis--yes, not good.

But, since ergot. is a prescription med, she will--as we all should--discuss our meds use with our docs.

Brew wrote on Jul 5^th, 2010 at 12:07pm:

Are you taking the sustained release version of verapamil, or the standard, "all at once" formulation? If you don't know, you should find out. Then insist on the "all at once," non-sustained type. It has been proven to work much better for CH.

Correction: Sustained Release Verapamil doesn't work for Some CH sufferers but in the right dose does work for others.

JustNotRight wrote on Jul 5^th, 2010 at 3:30pm:

Correction: Sustained Release Verapamil doesn't work for Some CH sufferers but in the right dose does work for others.

Correction: Sustained Release Verapamil doesn't work very well for the vast majority of CH sufferers. If it works for you, good on ya. Please don't miss my point.

Didn't miss your point Brew,  ;)  just wanted Calisto to be aware that SR Verapamil does work for Some CH sufferers. 

Obviously, whatever form he's taking is either the wrong type or not enough.

Too True   ;)

I'm tailing off finally from a cycle that has lasted 2 months, the worst one ever.  Prednisone and verapamil have been effective in getting this under control, but the Dr. had to increase the verapamil three times before any effect.  480 mgs. seems to be getting it under control for me so people's advice about discussing increased dosage seems to be appropriate.  The only way I was able to get any sleep was with Lunesta.  Up until a week ago I hadn't slept more than an hour or two - same stuff you describe.  Hang in there, good luck.  George

God bless, Calisto!
I could have written this post 3ish weeks ago - I was a mess - desperate. 

Episode is still continuing - going on 8 weeks - but Verapmil (240mg total) and cyproheptadine (12mg total) three times a day with magnesium (400mg) and just a touch of lamictal (25mg) before bed have at least mostly brought them under control.
I'm taking a bit unusal med regimen because I'm pregnant  :D  but it is working pretty well...

I slept 6 hours straight last night before waking up with a CH - but heaven knows, that is fantastic compared to where I was...

Please hang in there and let your doctor know that you need help.  It WILL get better!!!!!!!

WOOOOOOOOOOO HOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!

7 HOURS SLEEP AND FEELING GROOVY!!!

Increased the verapimil slowly over the day to 280mg worked a treat! it could just be a flash in the pan so im going to increase that to 320mg today. I can feel the beast crawling around behind my eye and in my neck but its only niggly and isnt getting any stronger. Ive slept and i feel good.

SO COME ON YOU HAIRY ARSED BASTARD YOU WANNA HIT ME TODAY GIVE IT YOUR BEST SHOT COS IM READY FOR YA!!!

The suns out (in enland honest!) the birds are singing and all is groovy,at least for now.

A BIG thank you to all replies and advice. What a difference a nights sleep makes!

Ive got a medical on monday for my immigration visa ( to Australia) does anyone know if the verapamil will effect the result of any blood tests?

Quote:

Ive got a medical on monday for my immigration visa ( to Australia) does anyone know if the verapamil will effect the result of any blood tests?

Yes. You will have verapamil in your blood. ;D

Glad you got some sleep. Feels great, eh?

Well i kinda guessed i would have verapamil in my blood but the leaflet inside the tab box said it could affect the outcome of a blood test.

Im seeing my doc later today,ill ask her.

Dude - It was a joke. I thought you'd be in the mood for a joke after a great night's sleep. That's the reason for the little laughy face guy at the end.

I have no clue what it might do to the results of a blood test - I guess it kind of depends on what they're testing for.

Ahhhhh Poor Calisto has been initiated !   ;D ;D

Glad you got a good nights sleep it's about time!

Be PF!

calisto wrote on Jul 6^th, 2010 at 4:52am:

Increased the verapimil slowly over the day to 280mg worked a treat! it could just be a flash in the pan so im going to increase that to 320mg today. I can feel the beast crawling around behind my eye and in my neck but its only niggly and isnt getting any stronger. Ive slept and i feel good.

Increasing gradually in small increments is safer while your system gets accustomed to new levels.  Check your needs to try not going beyond what is sufficiently effective for the term left in this cycle.  When the time comes a CH hasn't knocked for about two weeks and if you may want to try decreasing, slow increments also.   


Quote:

Im seeing my doc later today

Explain the increase to let your doc know.

Hey Brew no worries mate it was taken as a joke,sorry you couldnt tell. Sarky english humour i guess.

My profile says im new to this site but ive used it for years. Ive had clusters for over 20 years now. I rarely visit when im not in cycle because its not something i like to dwell on. I try not to think about them when im not in cycle. I know this doesnt help others but its just my way of coping with them. Im "lucky" enough to be episodic and please god let me stay that way. How the hell all you chronic sufferers manage is beyond me. In my line of work (hairdressing) id have to give it up,people just dont understand. Next week will be my 6th week off work. Im lucky enough to have a very understanding boss but after next week ive gotta go back no matter what. I have to take propranolol while i work (not at the same time as verapamil i stress) to stop my hands from trembling,so ive got to start reducing the verapamil dosage next week.

O well we shall see.

thanks all.

Quote:

I rarely visit when im not in cycle because its not something i like to dwell on. I try not to think about them when im not in cycle. I know this doesnt help others but its just my way of coping with them.

You might want to reevaluate your position on this. If we all took your approach, nobody would have been here to help you.

Maybe it's time to pay it forward. You'd be surprised what it does for the soul when you shift from being self-focused to becoming other-focused.

I have maintained for a long time that we, as individuals, can never be truly happy unless and until we become completely focused on the happiness of others. Kind of a paradox, I know. But you should try it. ;)

Brew Brew Brew,

Are you trying to be antagonistic?!

How many times have i said thank you to everyone for their advice since i posted yesterday morning. We all have our own way with dealing with this condition and i really dont appreciate being called selfish or "self focused" as you put it. You really dont know me from adam so you are in no position to judge me or to comment on the way i deal with my cluster headaches. When im not in cycle im not too proud to admit the thought of starting again scares the bejesus outta me so i try to forget about it until the shadows start again and i have to plan for when they kick in in full. im sure there are far more people who are like me and use the site when they are in cycle and not when they arent. I havent seen one name on here who was using it the last time i did and i have looked.

And putting a smiley at the end when youre insulting someone really doesnt make it any better! :'(

Im obviously going to have opened a can of worms with this, i really dont want to argue with you because A. i just cant be arsed and B. It gives me a headache!

Im greatfull for your advice regarding my clusters but if you have any opinions about me personally please keep them to yourself.

I do see where youre coming from, but please respect my right to be scared shitless by my clusterhead aches and to not constantly remind myself about them.

Have it your way. Go about your business.

All that other stuff I said? Nevermind.

Yeah thanks, i fully intend to.

Sorry but im gonna have to hit ignore.

Ok...held my peace long enough on this one...the following is to NO ONE in particular but to serve as a reminder to all CH sufferers either here on this board or not.

You can not goad/bully/push/insult in anyway shape or form someone to do something that they do not want to do, nor should we even try to do so.

For some people continuously thinking about their CH problems whether suffering at the time or not only seems to bring them down further or makes them feel like they are dwelling on a bad thing when they'd rather be out living their life. 

You may think of this as denial, avoidance or what ever you wish, but the fact is we all handle things differently and shouldn't be looked down upon or thought badly of because someone handles it differently than we would.

We all suffer the same disease that doesn't mean we are all the same.

Please try to be more respectful of others.

(stepping off soap box now)

calisto wrote on Jul 6^th, 2010 at 7:40pm:

Sorry but im gonna have to hit ignore.

Won't be the first time. Won't be the last.

If a regular prednisone taper doesn't work, you may ask about a Medrol Dospak.  The stuff is wayyyy stronger than regular pred and should buy you 3 to 4 pain free days.

Thank you Ginge and well said!

On my 2nd pain free (so far!) day. Had a couple of shadows one of them meaty,but who gives a crap about a shadow.

Too be honest im not sure if its the increase in verapamil or my cycles just come to an end. Am i gonna stop the meds to see?
Am i F**k! ;D

Gonna start to taper them off next week after my migration medical so ill soon tell. Fingers crossed ol hairy arse had pissed off for a couple of years,next time he pays me a visit ill be an Aussie (then the fun'll start - itll cost a bomb for my meds there but i aint lettin it rule my life you know?). Sunshine sunshine sunshine here I come!!!

Thanks guys!!!!!!!

Quote:

Too be honest im not sure if its the increase in verapamil or my cycles just come to an end. Am i gonna stop the meds to see?

i am so sorry but seems i can't answer at all.this question makes me continuously for the time being thinking about my own ch problems whether suffering at the time or not seems to bring me down further or make me feel like i am dwelling on a bad thing when i would rather be out living out my life.
sorry but i ll think about my own ch problems while you think yours.hope someone else comes along to help.
with all the respect
We all suffer the same disease that doesn't mean we are all the same

Black,You petty little man!

You havent even quoted the full paragraph! if you could read properly you may have noticed that it was a RHETORICAL question.

The other things youre accusing me of saying werent even my words, they're someone elses.

Why do you feel the need to attack me anyway? what on earth have i ever done to you? You know absolutely nothing about me or my life


Quote:

We all suffer the same disease that doesn't mean we are all the same

You can say that again!!

I work 6 days a week and regularly clock up over 60hrs,(and i still manage to find the time to stay after work for charity events!)that leaves me 1 day to spend with family and friends and thats what i choose to do (although i dont know why im explaining myself to the likes of you!) so yes i very much choose to forget ive got cluster headaches and to "live my life",i see little enough of my wife as it is!

Perhaps youre the one who should focus more on helping others rather than attacking them when you dont have ALL the information.

My appologies if this offends anyone who has helped me the past couple of days, all the advice has been massively appreciated, but this guy has really wound me up!

Dear All,
Please stop picking on Calisto.  He has every right to deal with his life (and any and all events within it) the way that suits him and his the best within their capabilities.
He came to this site for understanding and support - not a guilt trip, not attitude - because, ahem, this is technically the 'Worldwide cluster headache support group'. 
Sincerely,
Lettucehead

Well Put Lettucehead !   8-)

Nobody's picking on anybody. I think we're all big boys and girls here.

He chose to voice his opinion about sticking around and helping others, I told him he might want to rethink it, he told me to stick it. As has been so eloquently pointed out on this thread, everyone deals with it in their own way.

He takes a stance, he can deal with other people's opinions about that stance. Just like I can deal with him telling me off.

If anybody can't take the difference of opinion, they have the choice to hit the "ignore" button.

Support doesn't always mean being 100% in agreement. He has CH, I have CH. CH sucks. We have something in common. Where we disagree is in sticking around to help others when CH isn't in the fore. He's entitled to his opinion, I'm entitled to mine. Vive la difference.

You can agree to disagree and do it politely... IMHO

Yes, absolutely, Ginger!

But also, I very much doubt that Calisto is emotionally in a place to be able to dispassionately step back and be able to assert his own needs in protecting himself by not thinking about CH when not in cycle.

Just 3 or so days ago, the man posted a heart-felt pleading statement for help as he was on his last legs.  Yes, he's gotten a night or two of better relief since then, but I think that we all know it takes some time to recover from the type of severe beating that the beast can give us.   :-[
He just, likely, is not in a place where he can defend his 'stance' without emotional pain. 

Plus, he has bared his pain to us - he is hurting terribly, and he has come for help to us who supposedly know answers to help him.  This is a situation not unlike a mental health counselor and client or a doctor and patient - those in this group are considered the wise and knowledgeable in beating CH, those coming here are asking for help and are very vulnerable.  We need to be extra careful  (even in cases of disagreement) that our authority as those with the 'answers' is never used to harm those we mean to help.

If you came to my defense like this, I'd thank you for the sentiment, then ask you to kindly allow me to defend myself, if you don't mind.

The point is we shouldn't have to defend a relatively new person to this board who is seeking HELP and UNDERSTANDING!

calisto wrote on Jul 7^th, 2010 at 4:33pm:

Black,You petty little man! You havent even quoted the full paragraph! if you could read properly you may have noticed that it was a RHETORICAL question. The other things youre accusing me of saying werent even my words, they're someone elses. Why do you feel the need to attack me anyway? what on earth have i ever done to you? You know absolutely nothing about me or my life Quote: We all suffer the same disease that doesn't mean we are all the same You can say that again!! I work 6 days a week and regularly clock up over 60hrs,(and i still manage to find the time to stay after work for charity events!)that leaves me 1 day to spend with family and friends and thats what i choose to do (although i dont know why im explaining myself to the likes of you!) so yes i very much choose to forget ive got cluster headaches and to "live my life",i see little enough of my wife as it is! Perhaps youre the one who should focus more on helping others rather than attacking them when you dont have ALL the information. My appologies if this offends anyone who has helped me the past couple of days, all the advice has been massively appreciated, but this guy has really wound me up!

Maybe if you were here more regularly you would understand what Black had to say. 

                     Potter

::)   Oy Vey   ::) 


            ;D

Hi ya'll.  I see both sides but wanted to point out that a great reason to hang out here a bit when not in your cycle is to get ready for the next.  Yep might be a year or 2 from now but they are coming back.  Get your arsenal ready now when you are feeling good because once they start it is harder to deal with it.

Being a former pilot, we tried to always be prepared BEFORE the emergency happens.

Anyways up to the individual how they run their lives.  People here are great and have lots of advice.  People will stay when they want or need to and move on when it makes sense. :)

Good luck everyone! >:(

Shaggy

oh my goat!ok let me say just my opinion.
all the information (99,9%) needed are already stocked up here and even if in a magic way all the seven thousand members tomorrow morning decide to leave it for taking a walk and a drink in a beach bar and headbanging afterwards alltogether without music,a newbie here could still find his way with searches but it could take some more time than it is anticipated so what people are giving here already not asked is their TIME to show what anyone could find alone.i mean there is nothing more precious than TIME.there are about one thousand posts per sec. which say look in O2 section on the left which by now it should be like Las vegas and lights bleep from the counts,melatonin for night sleeping and verapamil works better around and even higher than 480 mg if tolerated and yet every time I ADMIRE people for repeating these.And as you calisto already said you are not a newbie as you have already taken the tour years ago
you must have seen something from these except if you were web surfing with the pc not plugged.
And you come here with the SOMEONE HELP which raises the necessary well attention.
excellent advises coming on and on and me the reading all these and if there is something that i may have to contribute.
and then after a few hours of good sleep i read the
oh brew brew brew why are you so antagonistic?
in the most kindest request which the man believes benefits both parties.
and then this

Quote:

You can not goad/bully/push/insult in anyway shape or form someone to do something that they do not want to do, nor should we even try to do so. For some people continuously thinking about their CH problems whether suffering at the time or not only seems to bring them down further or makes them feel like they are dwelling on a bad thing when they'd rather be out living their life.  You may think of this as denial, avoidance or what ever you wish, but the fact is we all handle things differently and shouldn't be looked down upon or thought badly of because someone handles it differently than we would.

which you agreed as well said
in which brew appears to goad/bully/push/insult
you agree with second paragraph also with yourself an evening crying for someone help and a few hours of good sleep later saying you push me around,i want to continue my life and now that i feel better i am thinking the rhetorical question that maybe it wasn't even the isoptin but my cycle ended so thanks guys!!(for what?the advise or the time i am thinking...you know retorical question)

so all i had was to raise these words as if it was a mirror since it seems it is a principle and should work both ways no matter if it is convenient.i never attacked you just took your words back which you agreed when it was easy it seems.it's your choice whether you brush your hair or spit it.and seems that yes i am a pette little man...

p.s.i don't defend brew in anyway.he can defend himself just fine if needed.i am just pissed off with myself wasting time with this.
p.s.i don't believe ginger believes what she writes down.just women defend till death a hairdresser no matter what, better than the 300 the leonidas guy. :D

pf wishes to all and to you callisto.
life is short,hairs are longer

FOR THE LOVE OF GOD!

HOW PATHETIC IS ALL OF THIS!

I mearly took exception to being called selfish or self-focused,i have used this site for 4 years AND I HAVE LEFT POSTS HELPING OTHERS! My wife and I have decided to emmigrate to australia so i work like a bastard to make enough money to give us a comfortable life there,this unfortunately does not leave me enough time to sit on the internet at night or on my 1 day off a week. I stay after work for free on a 10 hour day for charity fund raising event for cancer research,acorns childrens hospice,cyctic fibrosis and others. I can not be everywhere at once.

Im lucky enough with my c.h. to get by on a small amount of meds so i hjave not used even half the drugs mentioned on this site.Any information i could garner anyone with can be readily found imbeded on this site. Just because im not leaving posts on here

black wrote on Jul 8^th, 2010 at 12:12am:

p.s.i don't believe ginger believes what she writes down.just women defend till death a hairdresser no matter what, better than the 300 the leonidas guy.

;D and I actually believe and stand by everything I said on this topic, thank you.

I have been PM'd and basically told off regarding this topic, which I found to be absolutely ridiculous and I will be saying no more on this topic as of today, I've said pretty much all I had to say on it.

Calisto and all other newbies who've had issues like this, I offer my apologies and hope your future experiences here are better ones.  This site is loaded with good information and good advice, yours for the taking.

sorry this is continued from my last post....

Just because im not leaving posts on here DOES NOT MEAN THAT IM NOT HELPING OTHERS. I know 2 other new clusterheadache sufferes in real life who i have given help and advice to.

I have never once told anyone to "stick it" on here,i have had nothing but gratitude for all help given,i just take exception to being preached to by someone who knows nothing about me!

I thought my cycle had come to an end but last night i had another attack which i believe was bought on by the tedium of all this. Im not working at the moment due to my cycle and im not used to sitting around so things like this understandably play on my mind. As i said before i take exception to being called a selfish man when that is very far from the truth.

I was going to stop using this site after this but why the hell should i.

Brew i notice you leave on an average of 22 posts a day,very commendable but i simply do not have the time or resources to spend that much time online.When im not stood up at work for 10 hours a day,there are still things that need doing at home,in 2-3 months ill be the other side of the planet so i choose to spend time with family and friends some of which in all likelyhood ill never see again,yes this is my choice but it does not make me a bad person because im not posting on here.

So i choose to forget about cluster headaches when im not in cycle and why the hell shouldnt I! Id rather not remind myself that in a short while im going to be crying like a child in more pain than i think i can take. How dare you people judge me when you dont even have half the information.

Black i find it difficult to follow what you have written. You decided to attack me and to put word into my mouth that i had not written and to miss quote me,i have the right to defend myself,and you were being petty!

I came on here the other night because i was at my wits end and didnt know what else to do. All i said was that i was not a regular visitor to this site,now you know why!

I wish this had never started!

Calisto,

The people posting are not hurtfully picky about staying in residence.  Taken as an open invitation extended to hang out can be a socially friendly gesture, and being unneeded to appear in any defense of Brew, he pointed out some good aspects of doing so if you wish,


Quote:

I stay after work for free on a 10 hour day for charity fund raising event for cancer research,acorns childrens hospice,cyctic fibrosis and others.

which you apparently can conceive, but explain you do selflessly on behalf of other causes and afflictions. 

We're here if you need for CH.         :)

i apologize for not reading the entire post but i have found sleeping on my back with a very samll pillow or none at all in hopes of keeping my neck straight, i have cut out the night time attacks completely

AO

That's another one of those wobblers. Some have posted that lying flat with no pillow reduces attacks, others sleep heavily propped up or even in an almost straight up and down position in a recliner. One more example of lots of trial and error to figure out what works for you.

Joe

O.K. lets calm down Calisto.

I can assure you that Brew has a life, a job he goes to every single day and a family.  We all do.  Some of us stick around because we choose to do that,  and give back some of what we have recieved here.  We try to help the newcomers out because that is what we got when we were new and it improved out lives tremendously!!!!!!!!!!!

In 1998 I typed clusterheadaches in a search engine and found this place when it was brand new.  I learned a lot since then due the dedicated people who research and post here.  10 yrs. ago schrooms were not in our vocabulary.   Today they are helping so many.

Even something as simple as the energy drinks were learned about here.  High-flow oxygen, Kudzu, I could go on and on...because when something new is discovered you will hear it HERE first!!!!!!!!

If you choose to, take what you need and leave the rest.

watching the river flow...Linda  ;)

Excellent post, Linda, and exactly why I stick around: to get help and to help. Even were I pf forever (something I fervently pray for us all) I would still be here. It's kinda hard to explain since I've never been a support group joiner, but this place is different. I like it here. Blessings! lance

[In 1998 I typed clusterheadaches in a search engine and found this place when it was brand new.  I learned a lot since then due the dedicated people who research and post here.  10 yrs. ago schrooms were not in our vocabulary.   Today they are helping so many.

Even something as simple as the energy drinks were learned about here.  High-flow oxygen, Kudzu, I could go on and on...because when something new is discovered you will hear it HERE first!!!!!!!!

If you choose to, take what you need and leave the rest.

watching the river flow...Linda  ;)[/quote]


Wow same here, 1998 etc. Never would have learned about 02 or "alt" therapies. I have to be honest, I lurked and lurked for years, never posting, never helping, but getting the information I needed to survive. This is the first cycle I have jumped into the discussions in over a decade. I understand where Calisto is coming from, I too stayed away for years at a time so I wouldn't have to deal with thinking about the beast when I was in remission. For me however that will never happen again, I am more than happy to pay it forward at this point but it took me a long time to get there. One never knows what life and circumstances will bring to us all and we all deal with it differently. The MOST important part of this thread is it has helped someone, and we do not know how many others reading it my also get help from it, that alone makes his initial post a way of giving back.


David

davidj35 wrote on Jul 12^th, 2010 at 12:43pm:

I understand where Calisto is coming from, I too stayed away for years at a time so I wouldn't have to deal with thinking about the beast when I was in remission.... The MOST important part of this thread is it has helped someone, and we do not know how many others reading it my also get help from it, that alone makes his initial post a way of giving back. David

I totally agree!  It has taken me a long time to get more involved, apart from anything else, the fear associated with CH made it so I did not want to think about CH when it wasn't happening.  Also agree that every post, whether asking for help or receiving can be seen as being helpful, simply because it gets us thinking.

I thought the comments towards Calisto where really harsh and uncalled for.  Each of us should have the freedom to find ways of dealing with CH in our own way and in our own time!  We 'ought' not judge others because they choose to respond in different ways, and really 'ought' to understand the stress associated with this disorder.  It is a real shame that he has decided not to continue on this site - but I totally understand.  (messages sent via PM) 

I hate it when stuff like this happens!  The people who choose to stay on out of cycle are a godsend, and we are lucky to have them.  But that ought to be a choice, noone should be 'guilted' into staying around if that is not what they determine is best for them at that time.

Off my box now and expecting the angry responses that will surely come ...  :-/

Kate

As far as I can tell, he's still a member here.

Very scary to think about it, but I've wondered if dwelling on it and thinking about it could cause an attack. So I try not to think about it. I wouldn't have found this site had I not been having attacks. If I have a remission, I probably would be afraid to read all this everyday, but am thankful for those that are here for support and understanding. I'm so new here and have seen alot of arguments but I rack it up to all the unbearable pain that we go through. With CH, what works for one may not work for the others. If it did, it would all be figured out and we wouldn't even be here. But what works for one has helped and worked for many others and that's what is great about being here. There is so much helpful information on this site. As someone new though, I'm afraid someone will get mad at me, and I want support and understanding, but get scared of making posts because I don't want anyone to get on me like I've seen on some other posts.   ....but I admit I'm  more sensitive than most.  I was so afraid to take verapamil til I asked you guys [the neurontin did nothing], I was afraid it would kill me. After advice from here, I started it and it has been a miracle for me in preventing attacks. May not work for all, but it has been the best for me in 22 YEARS and it sat in the sack for a week til you guys gave me the courage to try it. Thank you so much!

Diamond Lucidity wrote on Jul 14^th, 2010 at 2:15am:

Very scary to think about it, but I've wondered if dwelling on it and thinking about it could cause an attack. So I try not to think about it. I wouldn't have found this site had I not been having attacks. If I have a remission, I probably would be afraid to read all this everyday, but am thankful for those that are here for support and understanding. I'm so new here and have seen alot of arguments but I rack it up to all the unbearable pain that we go through. With CH, what works for one may not work for the others. If it did, it would all be figured out and we wouldn't even be here. But what works for one has helped and worked for many others and that's what is great about being here. There is so much helpful information on this site. As someone new though, I'm afraid someone will get mad at me, and I want support and understanding, but get scared of making posts because I don't want anyone to get on me like I've seen on some other posts.   ....but I admit I'm  more sensitive than most.  I was so afraid to take verapamil til I asked you guys [the neurontin did nothing], I was afraid it would kill me. After advice from here, I started it and it has been a miracle for me in preventing attacks. May not work for all, but it has been the best for me in 22 YEARS and it sat in the sack for a week til you guys gave me the courage to try it. Thank you so much!

Glad you found us and so sorry you had too!
I'm even more glad that this site and the people on it have helped you Diamond.  Keep posting and don't let the sometimes heated debates scare you.   :D

PF Wishes to you!

i was getting them right at a hour every night after i fell asleep also! doc up'd the verapamil and gave me the imitrex tablet to take every night before bed for about a week or 2 till the verapamil and the lithium combo levels got to the appropiate level to prevent them.

That Verapamil Lithium combo has proven a big help to many for whom one or the other was ineffective. Glad to hear you're catching some relief from it.

Joe

I absolutely love this site. The people here have been a great support for me, full of great information. I've have not posted in a while but I certainly will never leave this site. I posted earlier today under treatment and remedies concerning ginger tea and honey if anyone's interested.