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Hello, think I have CH (Read 2508 times)
ForestMist
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Hello, think I have CH
Mar 6th, 2009 at 12:34pm
 
Hi all,

I think I have CH but I haven't had a definite diagnosis yet, just a "probably" - I've had a really hideous one sided headache that comes and goes during the day for a week now, have tried voltarol, paracetamol & codeine, imigran and dihydrocodeine and none of them have touched the pain. I've been to my GP today for the 3rd time in a week and she prescribed me the imigran injection, which I had done earlier today by the lovely Practice Nurse. I had a bit of a reaction to it - it felt incredibly tight across my forehead and the base of my skull, plus my blood pressure dropped by 20 systolic and 10 diastolic. The GP hasn't said I definitely have CH but that she thinks it sounds like I probably do have, and said that if the imigran injection didn't work, then the only other thing she could suggest was to go to casualty. Well, about 4 hours after the injection I have right sided head pain back again - admittedly it isn't quite as painful as some of the attacks have been, but it still hurts rather a lot. So I'm thinking that I am going to possibly have a fun casualty visit tomorrow - or am I wrong in thinking that if the imigran was going to work, it would have worked by now?

I've had migraines on rare occasions over the past 10 or so years, but I've never had anything like this before and it is rather scary. It was nice though, although that sounds a bit wrong, in finding this site and knowing that there are other people having the same kind of thing.

I think there was something I was going to ask, but I don't know what it was now, so I think I have just rambled on about nothing, so apologies!

Thanks for reading!

Mist
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Iddy
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Re: Hello, think I have CH
Reply #1 - Mar 6th, 2009 at 12:45pm
 
Take the Cluster quiz on the left.

Get youself to a Neurologist.

Read as much as you can from this site

That will be a good start.

All the best Iddy Smiley
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"If you can, help others, if you cannot do that, at least do not harm them." Dalai Lama
 
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ForestMist
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Re: Hello, think I have CH
Reply #2 - Mar 6th, 2009 at 12:48pm
 
Hi Iddy,

Well, I took the quiz and that also seems to suggest that I have CH. And if I go to casualty tomorrow, I might get more luck in getting some tests done than from my GP so will definitely press for that.

Thanks Smiley
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Guiseppi
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Re: Hello, think I have CH
Reply #3 - Mar 6th, 2009 at 1:15pm
 
By casualty, is that the emergency room? If you're not already keeping a headache journal, start doing so. When they start, how fast they build to peak, how strong the peak is, how long it stays at peak and how fast it retreats again. (The KIP scale on the left is useful for rating the pain) What meds you've tried at what doses, what has and hasn't worked. The diagnosis will be in the details.

Although it sure sounds like you've got CH. Read the oxygen info link on the left. If you do have CH, pure oxygen should be your first line abortive. I can stop an attack in its tracks in as little as 6 minutes using oxygen. It' enjoying a high degree of success on the board so certainly worth a try.

For now try chugging down an energy drink at the first sign of an attack. Monster, Rock Star, any containing the combo of caffeine and taurine. Many can abort or reduce an attack using these.

Good luck on getting the diagnosis done. A correct diagnosis is critical as there are hundreds of headache types, and meds which are helpful for one type can be useless or even harmful for others. If it turns out to be CH, don't lose this website!

Joe
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slhaas
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Re: Hello, think I have CH
Reply #4 - Mar 6th, 2009 at 2:11pm
 
Iddy wrote on Mar 6th, 2009 at 12:45pm:
Take the Cluster quiz on the left.

Get youself to a Neurologist.

Read as much as you can from this site

That will be a good start.

All the best Iddy Smiley

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Kimmie
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Re: Hello, think I have CH
Reply #5 - Mar 6th, 2009 at 9:08pm
 
Heck- I'm so uncoordinated to keep any form of book/paper journal...so if you feel the need start your own journal post on here.

You can educate yourself while keeping a journal on here daily.

-Kim
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ForestMist
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Re: Hello, think I have CH
Reply #6 - Mar 7th, 2009 at 2:44am
 
Hi

Thanks for the posts, it is much appreciated.

Guiseppi - yes, our casualty over here in the UK would equate to your emergency room. It's not somewhere I would probably have thought of going to but as my GP said to go there if the imigran injection didn't work, I thought I had best do that. I have a sneaking feeling that they won't do anything, but at least then if I still have the pain on Monday I can make another appointment knowing that I've done what they ask me and ask them how we go about confirming that I have CH rather than just thinking that I do.

The headache journal is a good idea, thanks for that. I've got a few notebooks that I bought because they were pretty but haven't used yet, so this is the ideal opportunity to make use of them I suppose!

Thanks again for the posts, it is really appreciated and I don't feel quite so alone.

Mist
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Katie
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Re: Hello, think I have CH
Reply #7 - Mar 7th, 2009 at 3:04am
 
Hi Forest.

I am in the UK.

I strongly recommend contacting OUCH UK, they can suggest neurologists and headache clinics around the UK that you can ask for a referrall to.
It is worth asking for a headache specific clinic. A standard neurologist clinic might sound good but been there done that and the neuro I saw was more interested in MS with no interest in headaches.
A specific headache clinic actually listened to me describe the type of pain and what it did to me. Much better.

Yes you could go to A&E but you could be sat there for hours unless you go in an 'active' cluster state. Travelling with a cluster at full pelt is my idea of hell, being stuck in the waiting room trying not to scream and scare the little kids with cuts and bruises silly even less so.
Been there done that and by the time they finish checking for meningitisis and anuerysms the headaches usually easing off. Smiley Without an offical label of CH the A&E guys have no choice but to suspect more sinister causes of headache first and you risk being treated as if its status migraine - which is treated differantly to acute CH.
IF you do need to go to A&E make sure its an A&E at a hospital with a neurology department attached as that way you stand a chance of a neurologist being on call.

To be taken seriosly go to the London Migraine Clinics website, download their monthly migraine diary as that is a pretty good one. This will allow a neuro to see how many days you are losing to pain and if it is fitting a pattern.
Use the CH diary [can someone post a linky to a good one] to describe the location, time and how the pain felt and what you were doing to try and make it feel better.
This matters a lot.

I strongly urge you to insist the GP follows the UK BASH guidelines and makes a referral to a consultant neurologist with an interest in CH and other headaches. It is important to rule out headaches that mimic as the treatments are very different or if like me you have more than one type which makes treating more complex.

And as soon as you do get the CH label ask for O2 at home on the HOOF/HOTS forms [you can only have this for CH]
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ForestMist
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Re: Hello, think I have CH
Reply #8 - Mar 7th, 2009 at 6:20pm
 
Well, what a fun day at A&E I had.
Was in some pain when I got there, and the triage nurse was really nice and told me to sit where I could see her and to come and tell her straight away if the pain got worse. Well, the pain did get worse but by that time her shift was over and the other nurse didn't have my notes but did go and tell the doctors, but it was still probably another 30 - 45 mins before I was called through, by which time I was at about 8 1/2 - 9 on the kip scale thingy and sitting there crying and almost pulling my pashmina apart! Unfortunately I got seen by the most unsympathetic registrar I have ever come across (and I used to work as a ward clerk so I have met rather a lot of reg's in my time, although admittedly the ones I knew weren't A&E ones) - I described all my symptoms, told him the medication I had taken that hadn't worked and that my gp thought it was probably cluster headaches. He told me he wasn't an expert on headaches, but then proceeded to tell me that I was having a migraine and hadn't given the medication a chance, although I don't see the point of taking potentially addictive medication when I'm not having a bad attack (I've been lucky enough in that I tend to get the really bad attacks from between about 11am and 2pm and have the evenings relatively quiet). He then said all he could do was give me stronger painkillers and that I would have to get my gp to refer me to anyone else. I was at this point crying with the pain, and he must have had a brief moment of sympathy as he came back in the room again and said that if I wanted, I could have the strong painkillers there and stay there to see if they worked, and if they did then fine, I could go home and if not, then I would be admitted onto a neuro ward. Of course I said yes, had some painkillers (although by this point, about ten minutes after the dr had said his piece, the pain level had dropped of its own accord to about a 7 - 7/12), then my blood taken about half an hour later and then about twenty minutes after that went and sat on the CDU ward. I rang my other half to say what was going on and asked him to pack me a bag in case the painkillers didn't work. Well, about another 2 hours the pain level was exactly the same as it was when I had taken the tramadol so I was all expecting to be staying in overnight. And then the registrar came in to see me, asked if the pain level had decreased since taking the tablets to which I said no, told me my blood results were all fine (which was a relief, I have to say) and then said that he was sending me home with some co-codamol. I said "but the painkillers haven't worked" and he just repeated that he was giving me some more painkillers, was going to send a discharge letter to my gp, that I just had a migraine (!!) and that I should get my gp to refer me onto a specialist, and then just walked off the ward! I almost burst into tears, but managed to wait til I got home (I managed to catch my partner before he left home so rather than him & his dad coming to bring me clothes, they came to bring me home). The only good thing is that I know my bloods are ok, which rules out some other nasty alternatives - but whether there were no beds on a Neuro Ward or whether the reg decided that as my bloods were ok that I didn't warrant being admitted, I don't know, but I just felt really really down. So it looks like yet another GP appt on Monday (although at least I can say that I did what I was told and went to casualty) and asking to be referred to a specialist to get a definitive answer as to what the hell is going on.

Katie - thank you for your advice, I will definitely try that on Monday!

And sorry for the rambling rant above, but it was a total nightmare that I think you peeps here would understand
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Katie
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I just get 'those' headaches.


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Re: Hello, think I have CH
Reply #9 - Mar 8th, 2009 at 3:11am
 
MIST!!!!!!!!!!!!!!!!!!!!!!

(((very gentle hug)))

I am so sorry you had to go through with that.
Do try calling OUCH UKs helpline- its what it is there for.

When I have a little more time later today I will pm you the URLs of the UK relevant stuff so you can go back to your doc on Monday and begin to push for real help.

Please bear with me though, I have my own little beastie trying to chew out of the chains I keep trying to tie it up with but I also know that having the right info helps you to get the GP to help you.

[ I can tell you right now co-codomal [8/500; 15/500 0r 30/500] is addictive, I have it for when the pain of migraine soars OTT and I have maxed on triptains or when neuralgia from an OTT TMN is tapdancing across my face BUT it does NOT touch the pain of cluster at all. You were treated well- IF you had a bad migrainesadly most A&E guys in the UK never get to see someone in cluster and tend to treat it as if its a bad migraine. Shame he never tried O2!]
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ForestMist
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Re: Hello, think I have CH
Reply #10 - Mar 8th, 2009 at 11:43am
 
Hi again Katie,

The co-codamol the grumpy Reg gave me is the 30/500 one, and I've taken two lots today and the pain hasn't changed each time - I've been on about 6 since I got up at 8.30 with a couple of bouts (thankfully shortlived) of 8. I don't really like taking medication, but I thought I would give it a proper go today so at least I can say I have tried! But if it doesn't work today I'm not going to take it tomorrow as its not doing me any good and the addiction thing does worry me. But at least when I make an appt tomorrow I've done what the GP last week told me to do and I've done what the Reg told me to do, so I'm being a good obedient girl at least!

I'm kind of kicking myself about not asking for oxygen but I was in too much pain to start with to think straight and then I was so upset about him saying I would be admitted and then him changing his mind that I didn't think straight then either. Will have to try better next time!

I know work are going to be a bit peeved that I won't be in again (I've not been in all this week) but I'm finding it hard to concentrate on doing things cos of the pain and I have to admit, I'm scared about having a bad attack when I'm out on my own because it just hurts so much, but I think that's something I'm just going to have to learn how to live with.

Any info you could give me to take tomorrow would be exceedingly appreciated - and thanks lots for the hug too! Smiley

Hope your beastie lets itself get chained up in a quiet cave somewhere far, far away too!!

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Katie
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I just get 'those' headaches.


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Re: Hello, think I have CH
Reply #11 - Mar 8th, 2009 at 12:17pm
 
Sent you a pm- hope its coherant and the URLs work.

Its one bad beastie today. Hope you have a better evening that you did last night if you can and do let me know how you get on with your GP and if you have any joy contacting OUCH UK for info on neuros nearer to where you live.

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ForestMist
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Re: Hello, think I have CH
Reply #12 - Mar 8th, 2009 at 1:46pm
 
Hi Katie,

the PM did indeed make sense and is responded to.

Luckily I am near Southampton which has a neuro unit so that is one positive thing at least.

Will update on the GP appt tomorrow, so fingers crossed till then!
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Guiseppi
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Re: Hello, think I have CH
Reply #13 - Mar 9th, 2009 at 8:11pm
 
Glad our UK people chimed in! Wishing you the best with your appointment.

Joe
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Batch
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Re: Hello, think I have CH
Reply #14 - Mar 9th, 2009 at 9:26pm
 
Forest,

Holy Shit Batman...  YGBSM!!!  The next time you stroll into casualty with a head-splitting high kipper... take a snap-top can of chunky beef and vegetable soup along for the ride...  If you don't get any action with a request for oxygen therapy on the spot...  step over to a quiet corner of the torture chamber with your back to the head mistress Marquis de Sade, snap the lid off the can of chunky goodies, make a retching sound, and spill the contents of the can on the floor...

If that fails to get any attention with a bottle of oxygen and mask, grab your chest and scream out... "THIS COULD BE THE BIG ONE!!!!"   Roll Eyes  That should get the triage nurse loading his or her depends to the breech tut suite...  

Just remember to say, "I feel much better" when the come after you with the defibrillator paddles.... Shocked  

Remember, there's more than one way to trick the social medicine droids into favorable action...

In all seriousness, it sounds like the good folks at OUCH (UK) have their good stuff tightly tucked into one sabot...  Stick with them...  they know the ropes.

Take care,

V/R, Batch

PS.  Sorry the Marxist trained community organizing idiot in our White House has seen fit to attempt to destroy 233 years of cordial diplomacy and shared blood with the good folks there in the UK by dissing your PM on a State Visit...  The so-called gift of 24 DVDs of old Hollywood movies only shows the level of ignorance on his part and that of his inner circle ...  

Not only that...  These DVDs were in the in NTSC format instead of PAL so they will not play there in the UK...

I didn't vote for the pantload... 
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« Last Edit: Mar 10th, 2009 at 8:39am by Batch »  

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Re: Hello, think I have CH
Reply #15 - Mar 13th, 2009 at 8:04pm
 
Hello, I'm 58 years old and have had CH for over thirty years. I thought I outgrew them but just last month they started again. Behind my Right eye. I have tried every medication and drug, had numerous tests, been to all kind of specialists but still no remedy. I hate to discourage you but the only thing I've come up with as a cure is to cut my head off. I was just thinking today while going through one of my attacks, what if I died and the pain continued? The main thing that keeps me going is hope the pain will go away. When it does, I'm so exhausted but my head feels so much better than it did. I have no idea why this thing is happening to us but just hang in there, you'll be ok. I know it hurts but it can't last forever.
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Guiseppi
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Re: Hello, think I have CH
Reply #16 - Mar 13th, 2009 at 8:31pm
 
Hey Rod welcome to the board and glad you found us. Start a new thread in this same section, sort of an announcing your presence! Have you tried oxygen yet? And more importantly have you tried it correctly? Read the link on the left titled oxygen info, complete with pics. been  alife saver for many. Welcome to your new second home.

Joe
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Re: Hello, think I have CH
Reply #17 - Mar 13th, 2009 at 8:43pm
 
Thank you for the welcome Joe.
Yes, I've tried oxygen. I even tried keeping a few bottles at home with me for the night time events. You know, it was such a long time ago that I don't remember if it worked or not. Probably not since I still get these things. If it did work, you can believe I'd be one of those people that carry around oxygen tanks all the time. LOL
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