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 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. I have a Deviated Septum - posh name for broken nose. My nose was broken when i was 14yrs old by my dear sister susan (special needs & was having a temper tantrum)...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!!! 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 on- 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. Its a massive relief to know i'm not alone & there are other who understand the absolute agony these Clusters bring...
To try to describe this pain to a non sufferer - is to ask them " have you have ever been to the dentist & had treatment and the dentist accidental touches a nerve...just for a split second....how that agony feels....WELL THATS WHAT A CLUSTER feels like but much worse AND lasting up to 3hrs at a time...non stop....that raw piercing pain,stabbing,throbbing all over the left side of my face, behind my eye,neck, inside my head - can you imaging that agony...that one split second you felt in a dentist chair, just on that tiny part of your mouth - is FOR ME 3HOURS LONG - NO PAIN KILLERS WORK!!!! " I just have to bear with it till it passes.....knowing that 10,20,30 minutes later it will come again!!!! Up to 6 clusters a day some lasting 10mins.....15min...5mins....the worst always happens 1am/2am.....dont know why....3hrs long.....i can understand why this is called suicide headaches & why others have sadly committed suicide 
I have been given Sumatriptan - 4tablets to be exact & am now waiting for a referral to see a neurologist to be officially diagnosed and to have a scan & i am hoping to be able to try the injections before i another really bad episode (i have now been 3 days without any pain) but still have bunged up nose and now have cold sores but totally bearable - anythings bearable compared to the agony of Clusters. I have spent the last 10days researching as much as i can on the internet...made me cry to see the youtube videos.....knowing now others suffer in this dreadful way as well as gave me comfort knowing i'm not just a mardy bugr.  I have sat down stairs in the living room in the early hours on my own, not wanting to wake kirsty or Russell up....sat with a wet tea towel in one hand over my eye & left side of my face and another tea towel over my mouth so nobody would hear me - rocking backwards & forwards/pacing up n' down the living room/rolling on the floor/curl up in a ball then back to rocking on the settee, praying 2give me strength 2get through this pain, believing that it will pass  - up to 3hrs it lasts when i'm in the final stage of a episode (where i get re-occuring attacks lasting from a few days to over a few weeks, leading to where i will get up to 6 in a day leading to a final attack then with luck i wont get another episode again for a few months)  & i'm clocking watching every second, hanging in there the best i can - its such a relieve to know what it is....and YES the thought as gone through my mind to get a knife and cut my eye out..i'v stood up going back & 4wards into the kitchen picking up the knife, holding it and turning the handle over and over again in my hand - .to take  too many melotonin to knock me out so i dont wake up - not 4ever but till the agony as passed.......all this time i thought it was sinusitis..

The worst attacks always starts in the night 1-2am....i get up & go down stairs...... This years been a tough one i havent had a month free but it forced me to get help this time whereas i'v just been struggling on - its made me let russ know. I'v showed russ the information & he as seen a couple of the videos so now he as a understanding  - i will never let him or anyone be with me , 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

i have suffered these attacks now for 24years and though i no there's no cure i feel like a massive weight as been lifted off my shoulders - that i can mention it now & my family will have a understanding.





i

Welcome,

Im a chair rockin fool, cryin like a 10 year old little boy. You will learn alot here. Get some 02 and cut that 3 hours down to 5 minutes. Best advise yet.


                                  Coach Bill

WELCOME HOME Steph.....you've found a second family that will love, support, understand, affirm, and help you to help yourself. Read on...ask away! Rant if you need to, support others, share, laugh (this is a funny bunch) and DO let us know of your triumphs...we ALL love us some of that!

Your story had me in tears...agony for your agony...
frustration for your long walk in the wilderness...and recognition of having been in exactly the same place...much of it I could have written myself. There may not be a whole lot of good stuff about ch...but ch.com is one.

You aint alone...NO MORE!

Best,

Jon

I just want to give you a big ((hug)). I've literally have sat in my bedroom and cried because I have NEEDED to go to bed. So exhausted, but feared the beast. So I just stay up.  It's the worst feeling in the world. Being so tired and drained, but all you can do is  sit their and wait.

O2 is a life saver, really.
my thoughts are with you
Jrcox

I've heard a different name for the lingering effects afterwards, but I've forgotten it.  Don't get too hung-up on being like everyone else, cause symptoms are varied.

My shadows come on before, or between hits, and are basically mini clusters. like kip 1-3. same feeling as the big ones, just bearable and more constant. i sometimes get a stab, or a jolt, of severe pain as well.
After a big hit, i have a numbness around the area that was hurting and I usually am very tired/sleepy.  Never do I remember pins and needles, like when my hand falls asleep but, thats just me.

oxygen has no side effects, and hasn't been known (correct me) to reduce effectiveness.  It can be used on any type of cluster, from any Kip level, and can abort.  I've heard the 2am wakeup hits, kip 8-10, still are tough and might not respond.  But i also hear its very effective at knocking down smaller hits, even better the early caught.

your scuba 02 is good enough, but you won't have the proper non-rebreather mask and high-flow demand valve to get the best out of it.  take a look at oxygen info link here on your left.

imitrex maximum daily safe dose is 12mg, or two injections.  there is a way to spread them out into more (again, info on this site), but there are more potential problems associated with sumatriptans and side effects can occur.

good luck at the doctors!

Martin wrote on Nov 24^th, 2009 at 10:10am:


The closest I've been to scuba diving is Mr. Cousteau on TV...I do believe that scuba tanks hold compressed AIR...not O2...won't do ya a dang bit of good. Any divers out there with first hand knowledge?

Best,

Jon

Guiseppi wrote on Nov 24^th, 2009 at 9:28pm:


Glad these people are here, I stand corrected.  I guess my buddies dad is a 'pro' diver then hahah.  I know he has pure 02 in his garage; he gets pretty upity about when there's people smoking anywhere near his tanks and hes sure to remind them of the pure 02.

hi ,i just thought i would say hello as there are not many people on here in good old blighty !!! so there you go  HELLO,,, Dave

Your right Steph.
It is tough for some people to understand the severity of the pain.  You might have seen this letter already, if not, show your partner.  Maybe, just maybe they might get the hint how painful the headache is.

I think all of us here have a had a run in with a non-believer, and been equally upset.  But, someone so close to you, you'd think they would have some sympathy.


Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Hope that helps,
Angela

I dont know how to add more than one pic - well i'v tried but its  not let me lol.....prob me not doing something right. Anyway below is a picture of my with my son Nick - he's getting married next year at Thrumpton Hall in Nottingham...i'v already brought my outfit from Coast (off Ebay of course, i like my bargains)

Hi Steph,
I'm in Notts too and ready to take on your bloody doctor I can tell you.
SUmatriptan pills are like throwing smarties at a shark. The BNF (their prescribing bible) actually states that the injections are the only useful form to use for CH. You go back and tell her/him you want the subcutaneous injections and that you want Oxygen too. They'll need to fill in a HOOF - home oxygen order form and they need to tick the box for ambulatory oxygen and write Cluster Headaches in the comments box. You need to be using at 15LPM too. I can't recommend it enough. It's brilliant.

I also can't recommend Dr Evangelou at QMC enough either. Ask her to refer you to him specifically. He's MY neuro and he's wonderful. He's compassionate and really understands about CH, he should do after dealing with me for the last five years bless him! Seriously, I can't recommend him enough.

If you need help with anything let me know, I can't be far from you!

Helen

H all,

LeLimey just a question please?
I'm in Cornwall and was on Peter Goadsby's team, but he left that department at NHNN and now I see another Consultant.  I'm going around the 'try again' drug list for my CCH and yet there is no progress.  You mentioned a great Neuro Consultant, but is there any listing of CH specialists?, I've looked on the web and can't narrow it down among the Neuro's. If a member finds a great CH understanding Consultant, we apparently have the option of being treated at another hospital - do you know if we can do this?  I travel from Cornwall to London for 6 months OP and it takes 25 hours start to finish.  Like, I guess, most CHr's I'd go anywhere for effective planned attempts to quieten the beast, so Nottingham is 'just around the corner'!
Thanks Andy

Hi LeLimey,

Great!
Many thanks for offer, I'm very new to the forum and don't know if I have to do anything to get it, but a pm with details would be great.  I guess I ask my GP to contact the other Neuro, but anyway I saw my GP this evening (27/11/09) and he telephoned NHNN while I seeing him and firmly demanded that I need to be seen urgently.  Reply was 'could I get in by 5.30pm'.  Nice idea but even in UK people local people wrongly assume we all live locally!  He replied that it was at least an overnight train journey from our location and the only train suitable leaves at 22.35!  The NHNN person replied they would send me an appointment for as soon as possible!
He's very concerned about my current mental status as it's been totally 24/7 (with no lie, just at varying KIP levels) for so long it's getting harder to keep fighting.  So to stop being boring, any info would be great.  The next Neuro might have no more answer to give, but I'd love to try.
Thanks and LOL
Andy