I was going to write you a message, but my nose is starting to run.  Maybe in an hour or so I will come back to the forum.  I'm going on little sleep now, and I'm starting to be an ass to my wife even when I'm not having a headache.  She tells me she understands, but I don't think anyone does.  Believe me when I say I have been in horrible situations in the military (combat) and i fear this enemy more than any other I have fought.  I don't know what I want to gain from this forum, I'm not the type to talk about my problems, but i guess i just want someone to tell me that I will be ok.

Greetings to u all. I found this site and read how familiar all of this is.  Sometimes thinking of the pain makes my jaw ache. Ok so I am 38. I had regular migraines from age 6. When I was 19 I began the wonderland of pain in which we live. Because I'm female it took over a year of regular meds including antidepressants and me slicing my wrist from pain as I tried to put my head through a wall, that a doctor took the leap and said you have clusters and migraines. I have been through ergotimines, anticonvulsants, several triptians, channel blockers and steroids. Not to mention the stay in the hospital during a 3 day attack every 2 hrs, where I was pumped full of dhe... god that burns!  I gained weight and got thrush from the prednisone which used to stop the cycles. I am taking lithium as a prophylactic and dhe, migrinol currently. The side that my clusters are on never feels normal anymore and I have begun to experience spasams and paralysis on that side. Dr. Tells me that's some other rare migraine symptom. The trigger point injection used to help, but this last one seemed to blow it all up. Well, I'm not sure how much of. 19 years to cover now.... I've never had a year of remission.. god i'd love a break.  Bless you all.  Nice to see I'm not alone. I'm kinda crying.  But I can feel an attack isn' far off right now. I pray something works for us all.

There is a great "letter to friends and employers" you can print out that gives them CH in a nut shell! It's awesome to find a group you can talk about CH with out the 10 minute explanation, aint it?

By the way, watch out for alcohol also, an almost universal trigger for most while on cycle!

Joe

Welcome back to the board....don't you just HATE the unscheduled suprise cycles? Do you have a decent regimen for dealing with them? A good preventative medication? A good abortive? Do you have oxygen yet?

Joe

Many use just the oxygen, glad to hear you've got it, it's still my silver bullet! But I hear you, when I'm in cycle...I'm just ready for it to be done!

Joe

I have a few questions regarding how my cycles have been occuring recently. For most of the time, it has been severe episodes once a night for about 4 weeks. Typically, they lasted about 90 to 120 mins, with some shadow time on each side of that. For the most part, I would be completely free of episodes for about 18 months between cycles. Prior to the current cycle I am in, it had been 3 years since the last cycle.
This cycle has been different..I started to get the shadow headaches about 2 months ago....a dizzy, disorienting feeling with some minor head pain. I was chasing this with my doctor as a sinus type issue- I had never had just the shadow type headaches without the full blown CH's. It became clear about 3 weeks ago that the beast had returned - after a 3 year vacation. After I finished crying, I went back to the Doc and got a script for Sumatriptan, 100mg. He also got me an O2 machine. The Sumitriptan works, it has limited some of the worst attacks to 30-40 mins rather than 2 hours....however, I am concerned about taking that much medication (the package info on the script even says that there have not been any studies regarding taking this medication longer than one week). I still have the meds, but have been relying on the O2 and only using the Sumatriptan in dire emergencies. My plan of attack lately has been the O2 and a bag of frozen vegtables on my head.
So this brings me to my question....for whatever reason, the attacks have become less severe but more frequent....forever, they were always very severe and only once in a 24 hr period. Now, there can be as many as 4 or five in a day, 2-3 hrs apart. The shadow headaches are also different; they have been almost constant - dizzy, disorienting, buzzing/ringing in the head- and a real pain in the ass.
I understand that the O2 machine I have is insufficient - I am currently getting the paperwork for a tank of O2, the non-rebreather mask and a higher LPM flow rate - and I hope that that will work better. I should also mention that while the attacks are more frequent, they are also less severe (maybe a 5 or 6 KIP rather than the normal 9 or 10) - prehaps from the O2. I am hoping that an O2 setup as described in this site will yeild better results, but I am greatly concerned about how things have changed this cycle...anybody have any thoughts on this? I dread to think that I could be looking at another month or two of shadows and attacks, but ANYTHING is better than the way they were before.
Thanks

Sorry to hear about the lithium issues. It's been my silver bullet as a prevent for many years now. You didn't mention oxygen. Read the oxygen info on the left side of the board. It's been a highly effective abortive for many, with none of the medical side effects we worry so much about.

My kids got to where they could help me rig up the regulators and get the bottle running for me. Made them feel a little less helpless towards the beast!

Joe

Hello there - my name is stephanie i am 44years old i have CH.....its took over 20yrs to be diagnosed correctly - I found you now and thats all that matters.....i'm not alone x


24yrs i have been misdiagnosed - from the age of 20 i was treated for Chronic Sinusitis, gave up on all dr's & all medications age 26yrs & just put up with it. I have episodes 3 or 4 times a year,lasting 4-6wks before i get a final attack then they just disappear again but knowing they will come back. This year as been the worst i have ever had - i have had a attack every month & have only had 10days free before it all starts again - at times i'v wondered how i'v found the strength to carry on.....but its forced me to seek medical help again & at last i'v seen a specialist who as confirmed i have Cluster Headaches & i now will be trying the sumatriptan injections & other medications. Its a massive relief to know i'm not alone & there are other who understand the absolute agony these Clusters bring.....much worse than migraine,much worse than giving birth...the only way for anybody else to know is to have these Cluster headaches themselves & i wouldnt wish that on anyone. There is no cure...but i feel like a massive weight as been lifted off my shoulders - to be able to give my Russ, my children, my family a better understanding/knowledge ...not have to hide it no more.....i will never let russ or anyone be with me when i have the worst attack..... couldnt bear it, dont want to be seen - if anyone was with me i would feel i have to protect them from seeing me like this ....i couldnt cope
Deviated Septum - posh name for broken nose. My nose was broken when i was 14yrs old by my dear sister susan...never bothered me that i had and still do have wonky nose - no one's perfect Lol. This is what i'v blamed all these years for my Chronic Sinusitis (thats what i was diagnosed with) cant hardly breath on that side, always bunged up, have sleep apnoea - just put up with it....one of those things.Knew it wasnt migraines because as a little girl i used to have them & the pain is different and far far worse!!!l This year i have had so many infections that i agreed at last to a Septoplasty - was hanging in there praying that having my nose straightened would put a end to my agony. But i now know its not my bent nose causng this torture - i have Cluster Headaches & there's no cure.
I have long known painkillers DONT WORK - none of them....over the years i have looked into every alternative therapy you can imagine - i know all about herbals/essential oils/massage/hypnotherapy/meditation/exercise ect etc i could go - my last hope was having a Septoplasty. Though i am disappointed at least now at long last i know what it is - i can put a name to it - that i'm not alone. I will still be having my septum straightened some time next year which will sort the breathing on the left side & fingers crossed the sleep apnoea.
This is how it feels for me when i am having my worst attack....its like having three pneumatic drills all on full blast at the same time....one through my left eye - one coming through my neck & jaw going upwards and the third drill going through the top of my head at the back drilling down.....for three hours.....cant think, cant cry, just rock back wards & forwards holding a cold wet tea towel with one hand over my left side of my face, pressing onto my eye & cheek area - the other hand holds a tea towel over my mouth to cover the sounds of my agony....i pace up & down, roll on the floor in absolute agony, i go into the kitchen and pick up a knife, i roll the knife handle around & around in my hand wanting so badly just to cut the pain out...the tiny bit of sense i have left makes me put it back down and go back to rocking back wards & forwards. I repeat the above over & over again through out the 3hours - Times passes...3hours later the agony stops.
I have learnt NEVER to have many paracetamol or ibuprofen in the house because when its like above in my state of mind - even though i know they dont work i would take them all. I take a mega dose of Melatonin 30mg - i have to import it from America because its illegal over here & can only be got on prescription - its not a pain relieve - its a supplement to help you go into a deeper sleep, it helps me eventually by making me feel a little drowsy, a little out of it - but the agony never subsides that stays until the attack is over.
The one good thing about me finally going back to see a specialist is that now Russ knows - so do my children....it was nearly the end of me & russ 2wks ago, i was having a cluster starting on friday evening, ending on a sunday ...all day saturday i was on pain scale 7/8 in absolute agony - to russ i just had another sinus/cold but i was in extreme agony...didnt want sympathy, didnt want 2b mother cuddled, just wanted him to have a understanding to acknowledge - but he didnt see/didnt understand/didnt believe i guess the amount of pain i was in but then i guess i cant totally blame him because over the years i have become good at brushing it over....that night i had a 10+ attack....up all nite till 6.40am & i made the mistake of having painkillers in the cupboard (as i said above, i usually DONT but my kirst had been ill with throat infect so i brought them in for her) i took 10 paracetamol 10 ibuprofen 10 melatonin - why 10 i dont know, i guess subconsciously i knew 10 wouldnt kill me but i also knew they wouldnt touch the pain - just wanted not to there & away from the agony but it made no difference.
I have had many attacks like this,usually lasting 4-6wks before peaking then i would have 3/4 months free before the cycle starts again. Buit this year its been so much worse, being only 10 days free before another cycle begins - i'm just totally worn out. Usually i somehow find away to cope but this year as been so bad i'v nothing left, no strength left to hide from it no more - having my nose done was for me my final hope.....but it as helped knowing at long last what i have & now being able to talk about it to be able to show russ some videos of other cluster headache sufferers to give him knowledge/understanding a little to how very very very painful it is for me - i'm not a mardy person - i can take pain but there's only so much anyone can bare. My heart goes out to the Chronic suffers who get no painfree days....
So begins another chapter in my life....where my family now know...where fingers cross my episode as passed for now and i will be free of it for a few months but knowing it will return - and knowing this time i will have Sumatriptan injections to try & fingers crossed will help.
It will be difficult for me knowing that Russ & Kirsty will now know what i'm going through when i go down stairs at 1 -2 am in the morning and knowing that i dont want them there but we'l cross that bridge when we come to it!!!!

We are new today to this site.  My husband has been diagnosed with ch in the last few months.  He had this two years ago without diagnosis but it subsided.  He has now had ch since Sept. 17.  He has been hospitalized twice, given narcotics, had injections, took medications.  He has been unable to work since then.  It has taken such a toll on our life.  He has been bed ridden and lost 30 pounds.  ER more times than I can count.  I just had breast surgery in July and emergency laminectomy in August.  We are having a very hard time.  We have seen many drs without success.  Now on Depakote 2000 mg daily.  Also, blood work revealed low B12 and low folic acid.  Now on supplements for these.  How do people keep a job and deal with this?  Help!

Sorry you needed to find us but welcome home!  All that post are going to want to know exactly what your husband is using in the way of prevents and abortives.  I see you just posted and are still on line so if you would like to PM me I will be glad to share all I know.

Wishing for some pain free time for ya'll

Dallas Denny

Thanks for the sweet welcome. This has been a scary road to haul. It started in July and has been almost constant since then. I have missed work, lost money, missed out on time with friends and family and because of eye drooping am starting to look a bit like Sandy Duncan doing a Wheat Thins add. It's great to know that there are people out there and hope to make some local friends that I can talk to about this and also get to know otherwise. Hope that everyone has a pain free night and that "the beast" can be kept at bay on Friday the 13th

I am so happy to finally have someone to talk to about ch that actually understands. I have been suffering for 10 years and it morphs every year. The only constant i have is that I wake up with an attack at 2 am always!!! It usually lasts about an hour and it is unbearable. My only savior is prednisone. I have been using it for about 6 years now and it has done wonders.

Greetings, All!!

I'm Tim. Apparently, I've been a Cluster-Head since I was 15 or 16, or 20 years. I had seen a couple of doctors, and was prescribed Motrin. Obviously, that didn't work.

Finally, in June of 2006, my wife (Bless this woman!!) insisted I see another doctor, and was diagnosed with Episodic Clusters. He prescribed O2 and Imitrex. The Imitrex works VERY well, but was quite expensive.

So, after that episode with the Demon, I went until December of 2009 without any hint of a headache. Then, out of nowhere, they're back. I'm on the tail-end of my cycle, and for the most part, it's been pretty routine. Keeping my fingers crossed, and popping Imitrex like a mad-man.

So, I'm glad to have found you folks, and thankful that, as severe as my cycles are, it seems they could be even worse. Hard to imagine them being worse.

Anyway, pleased to meet you all, and I'll be around.

Tim