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Batty

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Hello Lunatics!
Jan 19^th, 2011 at 6:43pm

Hello chaps, My name is Gary, I am 56 this year and from the UK (so some of my 'terminology' might seem a bit odd....).
I just need to have a 'bitch' and a bit of support!

I had lurked on here a couple of years ago when a new,keen Doctor came to my local practice and told me I had 'Cluster' headaches after answering two,simple questions which were "Is the pain only on one side of your head?" and "Do they wake you up at the same time at night?". Thank you Dr. Paolo Barba!

They started in late 1999 when I was going through my first Divorce.... I thought I had a brain tumour.....The pain was behind my left eye and was SO EXCRUCIATING I wanted to spoon out my eye and crush some Paracetamol in the socket....
I went to an Ophthalmic Specialist who said "Yes, that's what we call 'Ice Pick in the eye syndrome" He then put dilating dye into my eyes and then shone THE brightest light I have ever seen into my eyes, I am convinced if anyone had looked at the back of my head, they would have seen the glow through my skull!....He was looking for a detached Retina etc., but only found 'floaters'.
They came and went, thankfully I did not have them with the same frequency that some of you POOR souls do. Just 3-4 months of the year.
It took about 5 years to realize that booze triggered an attack....I don't mean 'hammered', I am saying 1 mouthful of wine would be enough to wake me 2 hours after I had gone to sleep if, I was in the 'cycle'...Beer,Wine,Vodka, anything!
This went on at the worst, two cycles per year until the diagnosis about 4 years ago (I had gone to see him about High Blood Pressure and said how did I feel? That's when I mentioned the headaches.....
Slowly over the years the pain has migrated from the back of my eye, to the centre of my left temple,just below the skin,almost as if it is vein or something....The 'Demons' new home is far better than where he used to live! I think the worst attack I ever had was 5-6 clusters over 8 hours...
I have had to live with this with no treatment people...The new Dr. left my practise before he got round to dealing with the clusters and I am left with my original 'Quack' who is more concerned about his budget than the Hippocratic oath (Do I sound bitter?) so Oxygen treatment is just not going to happen!
But listen peeps!, I found something about 18 months ago....
I think I was on morning shift (up at 4:40am) and was into my second attack, I desperately needed sack time before I went to work..As I told you earlier, the pain is nowhere near as bad now, as it was when it lived behind my eye..But it is like putting a 'G' clamp on your head and some b******d screwing it in, but you cant feel it on the right hand side (know what I mean?) just the left....He turns it to my breaking point and leaves it for about 4 minutes, then just as you were thinking it isn't going to get any worse, he comes and gives a little,quarter turn more....
Anyway, I had some 'Vick's Vaporub' on the bedside table, so I thought "what the hell" and rubbed some into my left temple,where the pain was....
It worked !!!! It lessened the time and the severity of the cluster, if I put some on when I get the 'shadow', it gets rid of that too and, it's been working on every cluster for 18 months, so its not a coincidence or 'a one-off'...Try it and see! I am now looking at getting some '4head' Gel here Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

it has the same ingredient 'levomenthol' as the Vaporub but 3.75% instead of 2.75%....

Back to my story...To say I am stressed to hell is an understatement, I am not drinking to sleep, I am drinking to stop thinking eating salty, ready microwave meals (they are so nice tho!) and, guess who has come to the Party? YES! our 'little bit of hell inside us' has moved in for a couple of months again....
I cannot honestly say whether stress has anything to do with clusters or not, I think it has after the last 8 months...If I am aware I am 'wound up' about something. it brings on the 'shadow' and I can feel my blood pressure going up along with a sickly feeling I associate with the coming attack ( I have had them recently during the day at work, when I haven't been drinking! (NOT impressed!) I actually tried a sleeping tablet instead of booze one night, but still had 2 clusters!
Its not such a big issue now as it used to be, someone said 'Pain, is just weakness leaving the body..' At least it does go...but the Mental pain stays on.....

Sorry it dragged on Peeps!
Thanks for listening...
Gary

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« Last Edit: Jan 26^th, 2011 at 11:12pm by Batty »

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Hello Lunatics! Reply #1 - Jan 19^th, 2011 at 6:51pm Demand oxygen and bag the useless vicks. Potter
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Guiseppi

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Re: Hello Lunatics!
Reply #2 - Jan 19^th, 2011 at 6:59pm

Welcome to the nut house, always good to find another of our lost sheep has wandered home! Grin

This really is your new second home, you will not find a more comprehensive collection of real world knowledge about CH, anywhere. Sounds like your doc sucks, I don't know what your options are for swapping docs, but there are so many effective treatments for CH, it sucks to see someone suffering because there doc is clueless. If there is anyway to get to a "Headache Specialist Neurologist" do so. It's really your best shot at an effective regimen.

Potter is a man of few words, but he's spot on with the oxygen.

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

or

Read this link, if the doc won't give you oxygen, go the welding oxygen route. I went from 90-120 minute attacks to 6-8 minute aborts just by huffing oxygen, it's a real miracle abort for CH'ers.

Look into energy drinks, any containing the combo of caffiene and taurine, Monster, Red Bull, etc. Chug one down at the first sign of an attack, will abort or at least reduce a hit for many.

Keep reading like crazy, an educated CH'er hurts a whole lot less! Wink

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: Hello Lunatics! Reply #3 - Jan 19^th, 2011 at 6:59pm Hi Potter! Just how quick does the Oxygen work then? Vicks beats Paracetomol hands down for me (Its all I've got anyway) Forgot to say two things... Great site and I feel a lot better mentally doing that post! Gary
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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: Hello Lunatics! Reply #4 - Jan 19^th, 2011 at 7:04pm Thanks Joe, I am going to see the nurse at the Doc's on Friday as my BP has gone sky high, for bloods.. I will tell her about the clusters and say Joe said!..... Thanks for the welcome! Gary
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bejeeber

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Re: Hello Lunatics!
Reply #5 - Jan 19^th, 2011 at 10:15pm

GaryW are you a writer/humorist for a living?

If not, you should be - that was an entertaining read!

(aside from the grueling stuff you've had to deal with) Shocked

Congrats on moving the beast out from behind the eye and into the temple. Please provide detailed instructions on how to do this. Cheesy

Yeah out here in the wild west many CH'ers will flip the bird to the doctor who refuses to prescribe O2, and just go snag some of the same stuff cheaply without prescription at a welding supply place. I haven't followed whether that approach is feasible in the UK but I hope it is!

Please hang out here, provide some more of that prose and humor, and take in the very valuable info and advice. Many of us now have a revolutionized (for the better!) CH experience after implementing what we've learned here.

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« Last Edit: Jan 19^th, 2011 at 10:26pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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crosspescara

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Re: Hello Lunatics!
Reply #6 - Jan 20^th, 2011 at 3:22am

Hi Gary,

Another Garry and also a Brit. Currently 8 weeks into this bout. Also used Vicks, does offer relief for me but doesn't kill the monster. I saw every gp at my local surgery all of which did what they could but none were experts. It was only after finding this site that I suggested O2, the doctor then rang a neurologist who said 02 would be the first thing they would prescribe. 3 hours later BOC turned up at my door with 3 bottles of the stuff plus masks and instructions on how to use. BOC now deliver within 24 hours of calling with no ref to gp office.

Does it work / how fast does it work?

Well if you imagine a scale similar to a fuel gauge in a car, empty being zero and full being a 10 then if you hit the 02 at 15LPM when your at a 3 to 4 then all vestiges will disappear within 10 mins. Some of our American friends will tell you that 15LPM is too low - its the best were going to get on the NHS. If you attack a CH when your up to a 6 or 7 on the scale then the 02 will halt it there but will take considerably longer to shift but it will stop it deteriorating further.

Incidently, just been reffered to neurologist, got a call from them yesterday, they can see me on the 7th feb (NHS) but for GBP250 they can see me tomorrow!

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Batty

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I thought it was CH...but
my helmet is too tight!

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E'Port Cheshire UK
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Re: Hello Lunatics!
Reply #7 - Jan 20^th, 2011 at 4:23am

bejeeber wrote on Jan 19^th, 2011 at 10:15pm:

GaryW are you a writer/humorist for a living?

If not, you should be - that was an entertaining read!

(aside from the grueling stuff you've had to deal with) Shocked

Congrats on moving the beast out from behind the eye and into the temple. Please provide detailed instructions on how to do this. Cheesy

Yeah out here in the wild west many CH'ers will flip the bird to the doctor who refuses to prescribe O2, and just go snag some of the same stuff cheaply without prescription at a welding supply place. I haven't followed whether that approach is feasible in the UK but I hope it is!

Please hang out here, provide some more of that prose and humor, and take in the very valuable info and advice. Many of us now have a revolutionized (for the better!) CH experience after implementing what we've learned here.

Hi Bejeeber!
Thank you from the bottom of my heart for that comment! I cant tell you how much encouragement you have given me, to get through this awful time in my life....

I read it a couple of times before posting and thought 'Is there is still a little bit left of the old me in there?'....And you have just confirmed to me,that there is!

It was an 'Exorcism' for me writing that, things unsaid, that,thanks to this site, have now been heard and I feel much better for getting it out...A shoulder to cry on Buddy!.

Well, back to why We are here..
I wish I could offer some advice in re-housing the beast! But it has just been 'Old Man Time' I think, it is the only reason I have not pursued any treatment I guess, because on the kip scale, the pain has gone from 9 down to 4-5, is over far quicker now than 11 years ago, to 20-30 mins...
The biggest problem I have with it is sleep disruption....2 x 2hrs of sleep and then work a 12hr 6-6 shift (and I am on my feet most of the time) is not enough and driving home after is.....!

I will give my Doc one last chance and if he doesn't deliver, I will give him the quote that 'Neo' said in 'Matrix' to Agent Smith and take my quality illness elsewhere!

If no support from 'Broken Britain's' NHS, I will go to our local BOC and tell them I need some oxygen as I am renovating a Sherman tank and also get an old Russian Mig 21 pilots mask and helmet from Ebay (no one would look at me twice in Wal-Mart would they?)

I hope I am able to put into this community half of what I have already come away with...
Even if I can give someone a wry smile for a second...because as Tesco says 'every little bit helps!'

Thanks
Gary

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Batty

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I thought it was CH...but
my helmet is too tight!

Posts: 210
E'Port Cheshire UK
Gender: male

Re: Hello Lunatics!
Reply #8 - Jan 20^th, 2011 at 4:39am

crosspescara wrote on Jan 20^th, 2011 at 3:22am:

Hi Gary,

Another Garry and also a Brit. Currently 8 weeks into this bout. Also used Vicks, does offer relief for me but doesn't kill the monster. I saw every gp at my local surgery all of which did what they could but none were experts. It was only after finding this site that I suggested O2, the doctor then rang a neurologist who said 02 would be the first thing they would prescribe. 3 hours later BOC turned up at my door with 3 bottles of the stuff plus masks and instructions on how to use. BOC now deliver within 24 hours of calling with no ref to gp office.

Does it work / how fast does it work?

Well if you imagine a scale similar to a fuel gauge in a car, empty being zero and full being a 10 then if you hit the 02 at 15LPM when your at a 3 to 4 then all vestiges will disappear within 10 mins. Some of our American friends will tell you that 15LPM is too low - its the best were going to get on the NHS. If you attack a CH when your up to a 6 or 7 on the scale then the 02 will halt it there but will take considerably longer to shift but it will stop it deteriorating further.

Incidently, just been reffered to neurologist, got a call from them yesterday, they can see me on the 7th feb (NHS) but for GBP250 they can see me tomorrow!

Hi Garry,
Thanks for the info and encouraging news that there are some GP's here who will listen to their Patient!
Are the masks Full Flow as recommended here or the tubes you put up your nose? (last thing I should imagine you would want to entertain doing during a cluster!)
Another question, even if you go to bed 'knackered' when 'it' wakes you up, do you feel tired? I don't, and have often wondered why? Because if I am awoken by a noise say, from a normal,deep sleep, I feel groggy!....
Hope your cycle ends soon mate!
Best wishes
Gary

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37-41withrestrictions

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Re: Hello Lunatics!
Reply #9 - Jan 20^th, 2011 at 5:06am

Hi Gary

I check the site regularly and was shocked when I opened your post to see an Ellesmere Port location! I'm a Chester lass!! Shocked

I joined the site early this month and have scrolled through many posts gaining valuable tips, info and most of all support, when the pain strikes its a lonely place to be. I find comfort (although I don't wish this on anyone) in knowing I'm not alone.
2 days ago I started with twinges during the day, 'shadows' last night it hit... today I feel as if I'm hungover and vacant!! (hubby would say I'm vacant and dippy most of the time!!!)
I should be writing reports for work but I thought I would take 10 minutes to catch up on my safe place.

Have you been referred to a neuro?
I see Dr Dugeon at the COCH she good, diagnosed me straight away but insisted I took a medication holiday as I was whacking the meds paracetamol, ibuprofen, co-codamol, meds prescribed for my hubby!! diclofenic dihydrocodein basically anything I could get my hands on, stopping it all sorted out the rebounds!
I'm now on verapamil as a preventative and sumatriptan when the CH start,
I saw the neuro in early Jan and that night entered into a cycle, i was really ignorant about CH's (I was only diagnosed last year and received a printout from the hospital on all types of headaches, clusters were only a paragraph! )I don't know why I didn't research them further but I didn't! any way following the visit and the start of the cycle I thought I would have a look on the Internet and found this site, what a find!!! I am now arming myself with requests (demands!!) and knowledge to try to make my future PF or as PF as it can be!!!
just concerned that the NHS reforms will impact on future treatments?? and potentially my job! I'm a psychiatric nurse!

Glad things are settling with your family and hope to type again soon!
Sue

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Batty

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I thought it was CH...but
my helmet is too tight!

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Re: Hello Lunatics!
Reply #10 - Jan 20^th, 2011 at 5:57am

Hi Sue!
Thanks for replying!
I too was trawling the posts and read your entry where you said you wanted to 'take your eye out'
Bizarre I know but, the first thing I thought was 'now there's a girl I can identify with!' LOL!
And then saw you were from down the road and thought what the hell and PMed you!....

The more info we get as you say, the better armed we are...When I see my Doc I will find out how clued up he is about 'CH', then mention the person you said at the COCH....
As I have said previously, I dont think my attacks are (now) severe enough for medication but, it is the loss of sleep that is the real problem and if O2 can reduce the disruption, I would be happy (less unhappy!) with that situation....

From what I can see from this forum, meds are very hit and miss, what works for one doesn't necessarily work for another but, O2 seems to be 'The Holy Grail'!

Hope your cycle ends soon Sue...
Nice meeting you BTW
Best wishes
Gary

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crosspescara

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Re: Hello Lunatics!
Reply #11 - Jan 20^th, 2011 at 6:26am

Gary, Sue,

I live and work in London - 15 yrs, but was born and bred a Lancashire man (Bury)

I have a full mask with bag and proper exhale valves. Mentioned this before but am on 300mg of sumitriptan per day, 1 full tab last about 6 hrs. Generally take one before I go to bed, then have half tabs thro uout the day, still leaves me short thou.
Know what you mean about waking up, I reckon its the adrenalin kicking in.

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Batty

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I thought it was CH...but
my helmet is too tight!

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Re: Hello Lunatics!
Reply #12 - Jan 20^th, 2011 at 6:49am

Hi crosspescara!
Getting to be a smaller world now, I was born in St.Helens!

The reason I asked the question about not feeling tired when 'it' wakes me up is, I had not read about anyone else mentioning it (I have not read all the posts here yet!) so again,
another piece to my puzzle!

And thanks for making my journey at bit less bleak!

Hope your cycle ends soon!
Best wishes

Gary

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37-41withrestrictions

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Re: Hello Lunatics!
Reply #13 - Jan 20^th, 2011 at 7:17am

Hi crosspescara

I take the sumatriptan as soon as I start to feel an attack coming on, only on a small dose (50-100mg) however it knocks me off my feet I feel as if I'm being put under a general anaesthetic!!
I have not taken the sumatriptan as I should due to the effect it has on me. I drive as part of my job (my office is also 40 miles from home!) but I cover from Basildon to North Yorkshire so really need to be able to drive, what I've found from starting the verapamil and having an attack is that I now experience the headache 'hangover' and feel really spaced out after an attack and probably shouldn't be driving then either!!!
I have been strongly advised by my neuro to take the meds as prescribed and explain the situation to my boss...thank god for an amazing boss is all I can say, I have been allowed to work from home if I am unable to drive!!! how good is that!
only trouble is if he leaves the service he will have to take me with him!!!
Sue

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crosspescara

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Re: Hello Lunatics!
Reply #14 - Jan 20^th, 2011 at 9:20am

Hi Suzie,

I'm on 3 100mg tabs a day. But I gave up taking it as prescribed - ie take when you feel one coming on, its just too slow to take effect, once you in a ch nothing but 02 is going to touch it.

What seems to work for me is taking the tabs as preventatives. Firstly take notes, is there a pattern? if you can identify that then take accordingly. For me I take a whole one before I go to bed, then will take half a tab from 5.30 onwards and try to last 4 to 5 hours before next half. Not perfect cause I seem to metabolize 100mg in about six hours, which means my daily dose only lasts for 18 hours per day, have to make sure I have the 02 handy for those bits in-between just in case.

Regarding the hangovers, I suffered from those as well but think I have nailed those, have you seen the thread on water treatment. Basically drink a glass of water, when finished drink another 7 or 8 glasses and when you finished that drink about 4 more.

Basically drink more water than you have ever drunk. I also have a long commute, M1, M25, M11, had a few uncomfortable moments trying to get to the next service station!!

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Mike NZ

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Oxygen rocks! D3 too!

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Re: Hello Lunatics!
Reply #15 - Jan 20^th, 2011 at 3:57pm

37-41withrestrictions wrote on Jan 20^th, 2011 at 7:17am:

I take the sumatriptan as soon as I start to feel an attack coming on, only on a small dose (50-100mg) however it knocks me off my feet I feel as if I'm being put under a general anaesthetic!!

Do try oxygen and you can avoid this. I can abort my CHs in about 6-8 minutes without feeling knocked off my feet like you describe. I know how it might seem that people are a bit fanatical about promoting oxygen but it really, really does work well when used right (see link on the left) at a high flow rate via a non-rebreather mask.

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crosspescara CH.com Junior Offline Posts: 34	Re: Hello Lunatics! Reply #16 - Jan 21^st, 2011 at 3:07am Hi Saw the Nurologist yesterday and got told of for using sumitiptan as a preventative. Aparrently when it wears off its sends out messages for more Sumitriptan - basically another headache!
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37-41withrestrictions

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Re: Hello Lunatics!
Reply #17 - Jan 21^st, 2011 at 4:05am

Maybe a head transplant is the only way forward!!!! Cheesy

there are so many meds discussed in relation to CH but the O2 seems to be the key to pain relief, Crosspescara do you use O2? did your PCT argue the funding my neuro has mentioned it but stated it is an expensive treatment? I had realised the benefit of O2 before my last appointment but I'll make sure I request it next time.
Have a good weekend
Sue

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crosspescara CH.com Junior Offline Posts: 34	Re: Hello Lunatics! Reply #18 - Jan 21^st, 2011 at 4:39am Just done 10 mins on the oxygen. Funding costs never came into it at my local gp's This is my third bout of ch in 10 yrs, first time on oxygen thou and its made a huge diff this time round
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crosspescara CH.com Junior Offline Posts: 34	Re: Hello Lunatics! Reply #19 - Jan 21^st, 2011 at 4:40am Its Garry by the way, Crosspescara is my xbox name
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