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 to your new home Steph.

You have been through a lot on your own :o

   It is truly salvation just knowing there are others like us, and plenty of people to talk to.

Cant believe you went so long on your own
   Get to the doctor, and get the proper testing.
Have you tried O2 yet?    It is the best abort!
    Hang in there, and keep us posted  :)    lorac

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

coach_bill wrote on Nov 17^th, 2009 at 7:54pm:

.................Get some 02 and cut that 3 hours down to 5 minutes.......                                   Coach Bill

Yep.

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

You story brought me to tears.  Something about the way it flowed seemed, like Jon said, seemed like it was written by me after a few weeks of clusters....

3 hours is a long time to endure the agony.  See a headache neurologist, and get some proper treatments.
(02 is a life saver)

I'm glad you found us; only fellow sufferers could understand our pain.

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

Thank you all for your kind words....its been a comfort....i know i went on abit!!! Its been 5days now i have been cluster free - everyday is a bonus & i am hoping it will stay that way for a while (long while wud b gd) lol!! After my last big attack which lasted for 3days (fri 23rd oct - sun 19th) during the day it kept coming & going - lasting for 20 mins,coming back 1hr later, lasting 45mins, just coming & going,each time different, going from 3kip - 8. It was frm midnight it went beyond the 10 scale (i wont go into that but i knw u all knw wat i mean) but then over the next 2wks up untill 5days ago i was still have bouts of pain behind my left eye/stabbing/throbbing/pain over cheek/bunged up/snotty nose/watery/droopy eye lid - bearable, kip levl3 (i read the kip scale, what a gd idea to be able express ur pain level) that kept coming & going continually through out the day, lasting for a few mins at a time, longest time about 10mins but then clearing up again with just a"pins n' needles" effect around eye cheek/eye ache - is this the normal ish for others too? Is this what they call "shadows"
I have only had 10 free of it this year before it starts again - i will be so relieved when i go past day 10 - fingers crossed.
My next appointment with my dr is thur 29th nov - the next app at the hospital is thur 24th dec ( i knw what a day 2go) but luckily for me its my day off work.
I'v read about the 02 working/helping alot of others so i waiting to see the dr to be able to try that & the injections. I am optimistic that they will work.
My partner dives & we do have o2 in the shed - would i be able to try to use that when i have a bad cluster?
The other question i wanted to ask, is finger crossed when i do get the o2 & the injections to try - do i use them when i am having a lower painful cluster (kip 3-8 say) or do i only use it when the really bad ones happen? If i used it at the lower end of a attack will it stop the big one coming at all? Do you build up immunity to o2 or injections if you have to use either too often?
I have told a few others what i have been diagnosed with but i know in my heart they they dont understand/believe anything can be SO painful - i accept that - how could they ever know without feeling it themselves & i wouldnt wish it on anybody ever so its one of those things. When i'v asked them to try to remember a time when they'v visited a dentist & the dentist accidental touches a nerve for a split second - how agonising that split second felt - they all wince - to try to imagine that same pain lasting from 10mins -3hrs, going & coming back again over so many days/weeks (mine pulsates a well behind my eye, is that the normal for some cluster suffers as well??) - you can see the look of horror & sympathy for a min but then you see in their eyes that they find it hard believe ANYBODY can survive that sort of pain.....but somehow we do....again & again & again.

I sound abit doom & gloom dont i but i'm not.....i am just so relieved to know what it is - relieved to be able to find information on clusters (knowledge is power so they say) relieved to have found this wonderful support group - to know i can have this long long moan and just "get it all off my chest"  GOD DONT I FEEL SO MUCH BETTER 
I count my blessing that its not with me all the time like the chronic suffers....i cant bear to think of how they suffer!!!!
Well time for me to sign off...i'v gone abit again sorry - thank you for your warm welcome - have a gr8 wk end one 

Just to finish on a lighter note - have you seen this funny video taken from the childrens tv show "rainbow" its so funny, hard to believe it actually went live on air - how times have changed Lol !!!

"Rainbow"
A classic segment from the British children's program Rainbow in which the characters dabble in sexual innuendo.

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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!

Hi Steph,

When you go to the doctors, ask for a Non-re-breather mask.  They always give me one, the disposable kind, pre wrapped.  They work just fine for me at home with my set up.

Good luck and welcome to your new home,
Angela

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

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.

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

That's correct. Scuba tanks contain the same air we breathe.........there is a rare exception for professional deep divers who custom mix tanks using pure oxygen but that's a rare exception and you would definitely know if you had pure 02 tanks.

So it WILL NOT  be of any help for CH.

Joe

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

That's correct. Scuba tanks contain the same air we breathe.........there is a rare exception for professional deep divers who custom mix tanks using pure oxygen but that's a rare exception and you would definitely know if you had pure 02 tanks. So it WILL NOT  be of any help for CH. Joe

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 everyone - thank you again for your replies :) Since saturday i'v been getting the "shawdows" again. Ok one minute then very quickly i'm all bunged up/snotty/watery,droopy eye/stabbing pains to left eye - painful (kip 3/4) but bearable as only lasting a few minutes at a time. In the past i would just be thinking i;m coming down with another infection - over the next few days it would come more often, last longer until the last day or so when its agony (kip 7 - 9) till my worst attack - always 1am ish where its beyond agony. I am a little nervous now

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

I am nervous because now i know what it - its not a sinus infection - Cluster Headaches - what a strange name for such agony......i'm nervous thinking is this the start of "a cycle" I know i have no choice but to wait & see. I am VERY ANNOYED at my partner at the minute...i tried to explain to him....to try to describe "how the pain feels" when its bad - i said what i have prev written on here - to ask him to remember a time he as been to the dentist to have treatment & the dentist accidental touches a nerve just for a spilt second - thats the nearest thing for me to try to describe the pain to a non - sufferer but to imagine that pain pulsating/stabbing for you to 3hrs then coming back again - well his answer to me was "yes i'v had that happen to me before and its not that bad, just makes you jump abit" WELL IMAGINE THAT LASTING?NON STOP FOR 3HRS i said nicely back.....but he just shrugged his shoulders as if saying "yea, as if - its not that painful" i could kick his teeth in!!!!! But instead i am quietly seething...hurt & upset..... :'( I have to accept i suppose that he will never understand, that he obv thinks i'm just being mardy - that he doesnt believe anything could be that painful!!!

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.


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Hope that helps,
Angela

Hi Angela - thanks for that. I have down loaded the information & printed it off. Its my day off work today & i'm just chilling...doing some research on clusters...wrapping some things up i'v sold on Ebay ready to post later today...few chores (u can never get out of that one Lol) nipping to the gym & goin to c my sister. I did tell my other half that he pissd me off/hurt/upset me with his flippant comments - feel betr that i told him (other wise it just eats u away) he apologised but i know he cant get to grips with it. Thats why i have only told 3others, my daughter kirst age 20yrs, my son Nick 27yrs and my best friend debs - all have been gr8 - knw i'd been really bad with "chronic sinusitis" but didnt knw just how bad the pain was. I have added a fw pics :)

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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)

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Just one more pic - this is me on my Moon Hopper that my daughter brought me last year for christmas....hav to say i loved it when i had one as a child and LOVE IT even betr now  ;D I cant help but laugh my flipping head off when i'm bo'ngin all over the living room & around the house.....ok i'v havent been out the house on it , well once, with it in the back garden - not been brave enough to go down the street on it yet tee eee - mayb  we shud all get one & bo'ng down the street together [smiley=2vrolijk_08.gif]

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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

Also if you ring the hospital and ask for any cancellations you can get seen a whole lot quicker - just a thought!

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 Andy, I know of a lovely compassionate neuro in Bath who I have met personally at the International Headache Congress. I'm actually going to Bath to speak to some of her patients on the 8th Dec. She trained at the ION under Prof Goadsby and is well known to him and Manjit Matharu. If you like I can pm you her details??

I would be more than happy to. If you want me to find one nearer to you that won't be a problem either. I will only go on recommendation from a few people I trust or recommend people I've met myself. I'm very fussy! LOL

Helen

*edited to add - if you are "allowed" to travel out of area to see PG you would be allowed a referral anywhere. There may not actually be a headache specialist neuro near you which means then you can be seen in an area of your choosing. Also it is your right to have a second opinion which often means going out of area so in either scenario - not a problem. I'll help happily with anything I can

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

Hi Andy, PM sent with full details - hope it helps!
Helen

Hi Helen - thanks for recommending a good Neurologist at the QMC. I  am seeing my GP n Monday 30th Nov ( i wrote him a 3page A4 size letter & passed it on to receptionist to give to him) marked it Private & Confidential in big letters & high lighted it to make sure it will be him that only reads it (otherwise the receptionists open it & put it in any Dr's "in " tray. I gave him a full account of everything (as you know they cant hardly wait to get you out - or you forget something) I will make sure i have another note to leave with the Dr so he can refer me to Dr Evangelou - I cant tell you how happy its made me to get a name of a good Neurologist.
I had been 7days pain free but starting from wednesday its been coming back - on & off throughout the day, each day that as passed the pain intensity has increased - last night up untill i went to bed 12.30 its was kip 5/6 - was thinking will it be the worst one last....i am nervous about it (its a massive relief to know what it is but at the same time i cant quite get my head round it) thats mainly because for many years its always been a headcold coming on which brings on another sinus infection or its spring/summer, infected sinus from that. I'm trying to look for  pattern/cycle with it but  - its like looking at it with different eyes now. And its THE KNOWING that the big one will come....starts 1am ish and is kip10+ , lasts up to 3hrs, completley goes but comes back once more or twice & that would the end of it for me except for a few lingering shadows (as its called here) for a few days after then its completely gone .....its that time i'm really scared of now!!! I know it sounds stupid when i'v had it for so long but stupid as it sounds i was in my own way, unaware the big would always comes (usually had 2/3 attacks a year which is why i suspose it was diagnosed at chronic sinusitus)
Its this year thats changed everthing - since feb i have had a attack every month, being 10days free at the most then starting again. Its not always 10kip+ - it builds up to that over 2/3wks - getting shorter attacks to start with last few mins at a time but kip2/3 but bearable because their reasonable short. The one's i had last night  was lasting up to 20mins pain 5/6 up to 8/9 - didnt think i would get to sleep but i did eventually - and the big one didnt come. I thought it would last night - so i wait....
I had been at the end of my tether - no strength left - was ready to give up (i was calling it a day with my other half as well, i kept trying to explain to him the agony of this pain but  he just dismissed it) at times have not wonted to be here no more - i dont mean it now of course but when its bad your mind doesnt/cant think and that knife as shouted at me many times recently just to "CUT IT OUT-CUT IT OUT"
I'm hoping that it will stop soon and go back to be a episode cluster head Lol!!! You have to laugh or you would defiantly go barmy.
I will ask my GP if he will prescribe the injections & the oxygen but i dont hold up much hope yet - i think he will wont be to be "officially" diagnosed first by the neurologist ...so i will just hang in there.
I told my boss the other day (after they asked me about when i would be having the operation for my deviated septum) i knew obv they was only asking becuz they are wondering how much time i wud have off!!!  Well i told them that was on hold for now, because having that corrected could possible cause nerve damage & that after taking my full symptoms he diagnosed me with Cluster Headaches - i told her a little bit about how bad its been for me this past year, that its something i'v had for over 20yr & i told her what Cluster headaches are - i could practically see her eyes roll...the look saying Yea,alight,as if!!!!" Was totally uninterested - didnt believe it could be much painful than migraine. I dont think i will be mentioning to any others.
How long have you had clusters - how do your cycles go for you - what are your symptoms? Hope you dont mind me asking? Its just that it helps me to have more of a understanding and to know that symptoms do vary with others - and in some way it comforts me knowing the symptoms i have are the same as other suffers - that i know it is how the cluster cycle runs. Can i also ask is there anyone who as had it for a long time and has the years go by the symptoms get lighter and then disappear never to come back again. The thought of being a 60yr/70yr/80yr old and still having this agony come visit you when ever it wants - is just too much...i dont think i would have the same strength then to be able to get through it.
Anyway its time for me to order our Chinese takeway - its bliss not to cook for a change - then its a dvd to watch - just brought the new terminator  one - watched it at the cinema and its quite a good one. Bye for now - steph X

Hi again!

Well - your doctor is kind of on a sticky wicket with NOT prescribing you the injections given that he's already given you the pills - its the same drug, merely in a faster acting format (and a hell of a lot more expensive!)
If he doesn't want to prescribe I can 100% guarantee it will be on grounds of cost and thats unacceptable.

In the case he does say no, point out he has already prescribed imigran, all you are asking is for him to change the method of delivery and tell him if he refuses you will go to the PCT (Primary Care Trust)
They WILL overrule him and he'll get a slapped wrist too so I don't think he'll be overly keen to go that route.

Doctors sometimes get edgy with really expensive drugs (and Imigran is £126 per stat dose kit - two injections!) A  lot of them aren't aware (or are too lazy) that they can get extra money from the NHS for high cost patients so their budget isn't compromised. That's when you know if your surgery has a good practice manager or not!

As for Doctor Evangelou - I would be overjoyed if you get to see him, he's wonderful. His secretary is a lovely girl too and if you get an appt a long way away, ring QMC and ask to speak to Dr Evangelous' secretary and explain you're in pain and in cycle and can you be considered for any cancellation appts. She is so sweet and will absolutely do her best to fit you in too.

I know you've been reading here etc but I also know how much "overload" there is when you first find this place. Have you tried strong coffee or redbull when you can feel it building? It really helps. Don't sip either though, drink them as fast as you can! Sugar free or normal makes no difference by the way. I actually use Asda's own "Blue Charge" version of red bull as it's so much cheaper, frankly though, I don't like the taste of ANY of them!! (love the effect though!)

We all fear it coming back, you're not alone in that. It's overwhelming for you now to finally know what it is and to know there is treatment, hope and other people to talk to but I know how it is, there is still this small voice inside you that thinks - what if they're wrong? What if I don't have CH? I don't seem to have it like this one or that one? You can be full of doubt and fear, I know I was. I can't tell you how many times I went back to the doctor saying I had sinusitus just HOPING antibiotics would shift it. I really didn't want to believe the diagnosis and I just wanted a quick fix which of course - didn't happen!

You will get more confident, as you learn more and get better meds and realise you CAN cope and even more, that when it DOES come back, you can abort it.. you'll stop letting it have that power over you. It sounds very easy for me to say now, I'm sitting here telling you what to do - but I was new to all this and new to ch.com once too and I haven't forgotten exactly how confusing and scary it was and how I felt. I won't tell you I don't fear it sometimes now because I would be telling you a big fat lie but I CAN tell you that I do not think about it in between attacks (my own CH that is -everyone else's is different!! I'm allowed!) For me, the dread sets in when the shadowing starts and I cope by aborting it as soon as I can, whether it be with caffeine or O2.

As for your boss, you are covered under the disabilities at work act with CH so you can't be discriminated against because of it. They will have to count sickness due to CH separately to normal sickness so if ever you do have time off for it, make sure your sicknote is marked accordingly.

I've had CH for almost 15 years. Actually it's since two days after the birth of my second son and I can tell you to the day and minute when I had my first attack too! It was very "memorable" LOL Up to 2004 I was just having cycles every spring and autumn and then I went chronic and have been ever since. One "good" thing about being chronic is you don't fear it coming back at least. I use O2 as my main abortive because I love it, I love how fast it works for me and how little damage it does TO me and it's portable - I can take tanks with me wherever I go.

There are several people here who have had CH cease for them. It is thought that, as you get older, it diminishes so there is a lot of comfort in that. Right now the thought of it continuing for ever is particularly harrowing for you as you don't have effective meds yet, once you do, and it doesn't have such a hold over you - I promise you that it won't be nearly as important! You'll get defiant and you'll take your life back and you'll be damned if you waste a minute you don't have to!

The first time I tried Oxygen - Oh my God!! It worked!! And it worked so fast!! I really had my doubts about it, I couldn't see how just BREATHING could get rid of this AWFUL pain, but it did and I was absolutely euphoric - I wanted to phone all my friends! I wanted to stop people in the street and tell them, it was just so.. so incredible and so empowering. I wish I could bottle that feeling. It's indescribable. Its the best feeling there is. Having an "empty" head is just so wonderful LOL (Anyone else reading this - shut up now, do not say a word! I know where you live and I will flippin' thump you!)

I hope you enjoyed your chinese! I'm hungry now thinking of it but it's only 10:30am now and the rotten git's aren't open yet *pout*

Have a great Sunday
Helen

Hi everyone - well i'v had my GP appointment today and i knew before i went it in,it would be a COMPLETE WASTE OF TIME!!!
I wrote him a letter last week explaining everything - what Professor Nick Jones had said in his Otorhinolaryngology clinic (though i knew he knew that already as i had asked for copies of the letter that was sent to him) and i also tried to explain how bad the pain is when its at its worst. I requested the GP to do me a referral to see a specialist in Neurology (DR Evangelos who runs a clinic at the QMC hospital ) who was kindley recommended to me by Helen.
Well as soon has i got through the door i could feel the vibes - he said he had read my letter and that he wasn't happy about doing me a referral as i was already being seen by Professor Nick Jones at the QMC.
I said i was very grateful for the professor diagnosing me but i wanted to see a Neurologist who knows about Clusters so i can get it diagnosed officially & put onto my records & be able to get the correct treatment.
My GP refused - he offered to give me another script for the Sumatriptan tablets but that was it (which i refused) I had to wait untill i see Professor Jones on 24th Dec 9am in his Otorhinolaryngology clinic. My GP said that he doesnt go behind a another dr's back,especially someone has well respected has Professor Jones .And that he was more than well qualified to see me!!!
Well i disagreed with him some more but it made no difference - what more could i do??? He wasn't going to do a referral AND THAT WAS THAT!!!! No matter what i had to say it made no difference - i had to wait till i saw Professor Jones & see what he wanted to do next.
I am pissed off/upset/angry but i didn't expect any other after all i have read on here about GP's!!!! So i will plod on - hang in there until i see this Professor on the 24th dec.
I tell myself i'v had it this long that another few months will make no difference - at least i know what it is now - that i know it wont kill me - that i can try strong coffee/ice packs/hot running shower/red bull & a few other thing to try when a cycle starts again (thanks alot everyone for all the tips) i have been pain free 2days now and maybe i will be lucky and have no more for a few months ....
Its obvious to me the GP didnt take any notice at all about how bad the pain is - i know now from others that it is one of those things that you have to accept that if  NO ONE else has every felt this sort of pain that most just don't believe it and that includes GP's  :(
Well i'm going off to lick my wounds now - the house is empty (my daughter working till 8pm/my partner diving in Scotland till 2mz) think i'm going to go and have 45mins on the crosstrainer/put on my ipod and get lost in my music for abit.
Sod em/fuck em all  >:(

Steph if you want to pm me your number I'll call you and explain some options! I'm very pissed on your behalf and this is stopping now.
I know the 9th is only next week but even so, I want you armed to the teeth with info!

Helen

I am sorry steph. Doctors can be worthless at times. I remember when I asked for a referral to a specific doctor but my family doctor would not refer me outside the park nicollet clinics. So I had to see their neuro first. Finally I was able to find one that I have been using for a few years now. She was not bad but we had some differences. But am switching again. Thanks Helen. Hope you all the best in your fight.

PFDAN
jrcox ;)

Nov 17th .....was the 1st time i joined this forum under my name of "steph" - Dec 1st i un-joined LOL!!! I laugh but at the time i was totally exhausted & drained from the last few weeks...months..years. I have had CH for over 20yrs and have only recently found out what it was from a professor Jones at the QMC hospital in Nottingham. If you get chance to read or have read my previous emails on here you will know its pretty much the same story for everyone - misdiagnosed as seasonal sinusitis. This year i'v had a infection every month with around 10 free days before it starts again (though i'm relieved & pleased to say the last 10+ was the 11th oct) after that the shadows persisted on & off with pain 5/6 4/5 2/3 then pain free 7days then another cycle starting again and ending Nov 30th kip 7/8 then shadows over next weeks or so then PF. The last 3days have been getting shadows again - not bad 1/2 - stabbing pains in my left eye, snotty,water eyes etc, bearable.

Its a big learning curve for me - i found this wonderful forum & being honest....this place saved me. But the battle is still not over for me in the fact i am still fighting to be referred to a Neurologist - my own GP gutted me when i last went 2c him on 30th nov - i wanted him to refer me but untill Prof Jones (who diagnosed CH) had finished treating me - he REFUSED to refer me, even though i wrote him a letter before my appointment to see him, explaining everything and when i saw him i told him how long this as been - how bad the pain is but he just totally dismissed me. I felt exhausted & my soul was just drained with no energy - i felt that i was letting this CH take over my life, everything was revolving around it - my spare time was now taken with researching everything i could on it - i have told only a few but the reaction from most is not good, mainly i think is that no one believes ANYTHING can be THAT PAINFUL... but we all know on here it is.

I decided to call it a day - go away & lick my wounds for abit so i came off here - took my info about this off my facebook - didnt mention it again to no one. Like it never existed - in me - in anyone - in the world LOL LOL LOL but we all know it does, there's no running away from it and it sure has hell found me again LOl

I laugh bcuz u hav2 or go barmy, dont u???

Though i have been licking my wounds has i call it - i'v not given up. I have been working/keepin healthy with exercise, allowing myself to sit and think, to still learn about this beast  - 2accept that i will have to bang my head against this brick wall a few more times before it will start to crumble - AND IT WILL.

I see Prof Jones next thur 24th dec 9am - i'v sent him 4page a4 letter by post/by email/by fax and i will take a copy with me just "incase they all got lost" or he coudnt be bothered to read it all - going through EVERYTHING AGAIN - and am hoping when i get to see him he will have read it and have a understanding - will refer me on to Dr Nikos Evangelou (recommended to me by that wonderful, knowledgeable Helen) will wait with baited breath!!!

If i hit my head against a brick wall agaiin i will write to the PCT - i have copies of my letters/of referrals i'v had in the past to see eye specialist who couldnt find anything wrong/opticians where i'v had emergency appointments to see them becuz of this pain in my eye/dental app where i have even had 3teeth pulled on that side of my face - i have  copys of my OOH's that people ring when their GP practise is closed and you ring for advice (they send a photo copy to ur own GPS)
I work at a GP surgery myself & i can tell you most GPs no nothing of CH - i have spoken 2all 8 dr's and all of just think it a headache, abit like a migraine treated with the same type of medications & its not that painful LOL LOL LOL LOL
General Practitioners THATS WHAT THEY ARE & THATS WHAT WE HAVE 2REMEBER - they know a "little" about most things - ok for the most common ailments but anything else its their job to refer you.

Ohhh well enough of me moaning again - time 4me 2out my trainers on & go 4a run LOl x