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acidcase
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Hi every one from a newbie
« on: Aug 11th, 2006, 7:18am » |
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Hi my name is Ken I am 28 years old and live in London.
I have been a Cluster head for 3 years now but only diagnosed a week ago by my new Dr!!
I am currently in week 3 of a cycle, so far I have one attack a night lasting 1 - 2 hours I have had one instance of 2 attacks in the same night, I have my first appointment with a neurologist on Monday.
At the moment I am taking Triptan in tablet form and today my Dr added C0-Codamol to the mix.
I came across this site yesterday and have found all the medical information incredible but almost more amazing has been to find that there are other people out there that feel as I do and know what it feels like to go through an attack, its hard to deal with people that seem to think that I JUST have a headache.
Glad to be a member of this site and a huge thank you to every one that has been involved in creating and maintaining this site!!
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LeLimey
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Re: Hi every one from a newbie
« Reply #1 on: Aug 11th, 2006, 7:45am » |
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Hi Ken its nice to meet you
Triptans in tablet form are next to useless for CH. They don't work quickly enough. You should be having Sumatriptan (Imigran) Injections, Zolmitriptan (Zomig)Nasal sprays as these are the most effective methods of delivery.
The injections are really auto injectors so its only a little prick (just shut it okay?! I KNOW what you're thinking! LOL) They work in under 10 minutes,
Zomig takes up to 20 mins to kick in but will give you 12 hours PF time (Imigran only lasts for two) Don't accept Imigran nasal sprays, they're rubbish and for tablets the only ones worth having are Frovatriptan (Migard) These take up to two hours to kick in as all the tablet tiptans do BUT they will give up to 26 hours PF time which is brilliant.
Triptans are vaso constrictors, they constrict the blood vessels right around your body which can cause problems if you have a dodgy ticker (technical parlance again!) That's why you must not exceed two doses of any triptan in 24 hours and you should never mix triptans either.
Co Codamol won't help, they're the wrong sort of pain relief so you'll be taking them for the sake of taking them, not because they will help.
Read as much as you can between now and your neuro appt on Monday, we'll help all we can with giving you all the info etc to go with.
Now.. tell me about your "name" here.. I'm intrigued!
Helen
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acidcase
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Re: Hi every one from a newbie
« Reply #2 on: Aug 11th, 2006, 8:22am » |
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Hi Helen,
Thanks for the info on the meds, I had asked my DR about Injections (read about them on the site yesterday!!) but she said that she would rather the Neuro prescribe them as she didn’t know enough about them, she offered me the nasal spray but I was not sure if it would work as my nose becomes rather runny or stuffed ,
The triptan pills I am taking are Sumatriptan (succinate) and I am taking 100mg at the moment witch although does not kill the attack seems to dull it slightly although as you mentioned they take way to long to kick in.
One question I have is I am 100 percent certain that I am a CH sufferer from the info that I have read on the site speaking to my Dr and reading other peoples accounts on the site, having said that will a MRI or other scan with my Neuro on Monday help in anyway ?
As for the name hmm that relates to mischief I used to get up to many years ago and may have something to do with me now having CH !!!!
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E-Double
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Re: Hi every one from a newbie
« Reply #3 on: Aug 11th, 2006, 8:47am » |
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Funny you mention your theory as to why you may have CH.
I used to think the samething, HOWEVER>.........
If you read here www.clusterbusters.com
you will see that it is just the opposite.
Anyway, I have plenty of information for ya but I am at the office so I am sure someone else will post my favorute files that we spread.
Good luck and happy trails 
E2
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acidcase
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Re: Hi every one from a newbie
« Reply #4 on: Aug 11th, 2006, 9:12am » |
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Hi E-Double,
Thanks for pointing me in the direction of that article some interesting reading, I have a lot of info to get through dont think i will be leaving my P.C this weekend !!
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LeLimey
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Re: Hi every one from a newbie
« Reply #5 on: Aug 11th, 2006, 9:14am » |
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Ken Eric has just told you exactly what I was going to!
And yes you do need an MRI just to rule out anything else, this sort of pain should always be investigated.
Helen
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thebbz
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Re: Hi every one from a newbie
« Reply #6 on: Aug 11th, 2006, 1:18pm » |
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Hello Mr. Case,
Welcome and listen to Helen..she is so cool. Lots of good information here and OUCH follow the links and enjoy the reading, you are off to a good start. The more you know the better to fight with.
all the best
jb
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Sandy_C
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Re: Hi every one from a newbie
« Reply #7 on: Aug 11th, 2006, 1:41pm » |
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Welcome, Ken.
You've come to the right place to get information on CH. And, Helen (our resident Brit) is brilliant! So take her advice - get that MRI.
That being said, nooooo, I don't think because you did some "stuff" in your frivoulous youth (eg. "acidrain" that it caused you to have CH now. You see, I was in my lovely 20's during the "drug revolution", yet I never once tried anything - not even pot. I was what you could call the go go girl rather than flower child.  Yet - I've CH???
So nothing stupid you did back then has caused what's happening to you now (in MY humble opinion). Just make sure that you don't do something stupid in the future. Get that MRI, see that neuro, and start learning how to live with CH. You are your own best advoc - learn everything you can about CH, print it out, and take it to your doc.
Wishing you PF.
Sandy
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serendipity
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Re: Hi every one from a newbie
« Reply #8 on: Aug 11th, 2006, 1:49pm » |
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Hey, acid. I'm fairly new here, too, so we can be buds. =)
First of all, you did not cause your CHs with the "stupid things" you did in your youth, so get that idea right out of your head. Smoking (cigarettes) and alcohol use have been linked, but I've never read anything about...*ahem*...other things being linked to CH.
Secondly, I second whoever said that the pill form of any triptan isn't the ideal abortive. I use Frova, which is also a triptan pill, but I use it in conjunction with oxygen therapy, which is an absolute LIFESAVER. Don't be surprised if your neuro doesn't suggest O2 for you, but if he/she doesn't, suggest it to him! In fact, I'd demand it.
You're relatively new to this, but what you're going to find is that even neurolgists don't know all there is to know about cluster headaches, and that you will often have to help them along by researching the best treatments and insisting on them. Hopefully your doctor is one of the open-minded or well-informed kinds.
Best of luck to you, and welcome!
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| « Last Edit: Aug 11th, 2006, 1:50pm by serendipity » |
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seasonalboomer
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Re: Hi every one from a newbie
« Reply #9 on: Aug 11th, 2006, 2:00pm » |
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nice to have you aboard there AC!
You're getting nothing but great advice so far here and having Helen nearby you there in the UK, what a bonus.
your question about the "reason" for the headaches is fair and reasonable. eventually, like many of us, you can write off these thoughts (or actually find humor in the concern later) as for me I've written off concerns such as:
- divine retribution for being mean to people, taking illicit drugs, sneaking out before "oh what was her name" woke up, speeding, leaving the seen of a fender bender, saying mean things about my mum, and so on.
- residual damage from some of the above and many other acts, habits and behaviors.
- divine screw-up, actual punishment was supposed to be "going blind from doing that so often.
- late on-set of effect of "if you keep making that face it's just going to stick one day".
- sunspots
- etc....
There's help for folks like us and the advice your pulling down is the way. O2 and Imitrex has been my magic bullet so far. I'm going to test an alternative this fall when I go into cycle again.
Best regards,
Scott
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Margi
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Re: Hi every one from a newbie
« Reply #10 on: Aug 11th, 2006, 2:11pm » |
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Hi AC,
Nope, you didn't cause your clusters. Your hypothalmus (it is believed) is different from non-clusterheads. You have extra tissue there and, for whatever reason, it does the chicken on you every now and then and makes you have cluster headaches.
As E-Dub says, though, the clusterbuster folks believe (as do a lot of us) that imbibing in seratonin regulating substances (such as acid, shrooms, seeds) can reset your hypothingamajiggy into believing it's all good.
There's tons of research here and knowledge really IS your best defense against the beast.
Hope you find your own magic balance here.
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acidcase
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Re: Hi every one from a newbie
« Reply #11 on: Aug 11th, 2006, 2:55pm » |
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Hi Guys,
Just wanted to say thanks for all the replys on my post and for the info lots of reading to do before my neuro appointment on monday !
I will add to this post after my appointment and let you know how it all went and what the neuro had to say .
I will also be sure to speak to him about triptan injections and oxygen .
Thanks again and speak to you all soon hope you all have pain free weekend !!
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Sandy_C
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Re: Hi every one from a newbie
« Reply #12 on: Aug 11th, 2006, 3:44pm » |
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on Aug 11th, 2006, 2:00pm, seasonalboomer wrote:nice to have you aboard there AC!
You're getting nothing but great advice so far here and having Helen nearby you there in the UK, what a bonus.
your question about the "reason" for the headaches is fair and reasonable. eventually, like many of us, you can write off these thoughts (or actually find humor in the concern later) as for me I've written off concerns such as:
- divine retribution for being mean to people, taking illicit drugs, sneaking out before "oh what was her name" woke up, speeding, leaving the seen of a fender bender, saying mean things about my mum, and so on.
- residual damage from some of the above and many other acts, habits and behaviors.
- divine screw-up, actual punishment was supposed to be "going blind from doing that so often.
- late on-set of effect of "if you keep making that face it's just going to stick one day".
- sunspots
- etc....
There's help for folks like us and the advice your pulling down is the way. O2 and Imitrex has been my magic bullet so far. I'm going to test an alternative this fall when I go into cycle again.
Best regards,
Scott
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acidcase
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Re: Hi every one from a newbie
« Reply #13 on: Aug 12th, 2006, 7:56am » |
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So the beast sat with me last night and taunted me, it was strange as unlike other attacks in that i felt the pressure build behind my eye but nothing beyond that till eventualy after an hour it subsided.
I had thought that this was a sign that I was moving closer to remision as this week it had felt like either the triptan tabs were working or that prehaps the cycle was comming to an end as the pain levels had not been as bad as last week , but then the beast decided to wake me this morning and remind me who was the boss .
After lots of kicking rolling around knee banging pacing my room and my vocab being reduced to that of 4 letter words as well as trying to crush my head with my own hands and no effect from the trip tabs a thought popped in to my head or what was left of my head, i had read here taking hot showers works for some people witch after managing to locate the bathroom with my eyes closed i did (i have bad light sensativity)! i must admit it did not kill the pain but it did have a calming effect on me and provided some relief .
Today i will head off to get some red bull and try that tonight .
I feel fried
Roll on neuro monday .
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LeLimey
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Re: Hi every one from a newbie
« Reply #14 on: Aug 12th, 2006, 8:26am » |
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heat works for some, ice for others, I'm an "ice" person and the old bag of peas or sweetcorn trick in a teatowel works wonders for me!
I'm so sorry you're having to go through this, there's you and another girl called Shazza in the same boat this weekend and it's killing me knowing there's so little I can do to help solely cos its a flaming weekend 
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Shazza
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Re: Hi every one from a newbie
« Reply #15 on: Aug 12th, 2006, 3:50pm » |
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Hi
I saw my name so I though I may join in on this thread.
I have just been diagnosed by my GP and am due to see the neurologist next month. This feels like forever lol.
My doctor only prescribed me with some co-codamol and gave me no advice whatsoever, so to find this site and with the really good support from everyone, especially Helen, it's a bit of a relief.
I know that this is going to be a long weekend, but roll on monday!
Good luck with the neurologist!
Shazza x x
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acidcase
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Re: Hi every one from a newbie
« Reply #16 on: Aug 13th, 2006, 4:57pm » |
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Hey Shazza
Sounds like we are in the same boat !!
Your right though it is a relief finding this site and also in knowing that i can put a name to whats going on with my head !!
Got hit again this morning monday is the start of week 4 !!!
Also tried some co-codamol but Helen mentioned it wont help much also it made me feel a bit out of it !!
How long have you been going through all this ??
Well off to get some shut eye .
Hope you had a good weekend and wake up tomorrow with out the beast knocking on the door.
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Jonny
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Re: Hi every one from a newbie
« Reply #17 on: Aug 13th, 2006, 5:08pm » |
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Nice tatts, dude.....Im a collector myself.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Shazza
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Re: Hi every one from a newbie
« Reply #18 on: Aug 13th, 2006, 5:09pm » |
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Hi Ken,
I had this for two years now, I know that I'm quite lucky to have a recognition from the GP, as people go on undiagnosed for years.
The co-codamol spaces me out to, just helps have a nap that's all.
I give up looking on the bright side now, I dont bother hoping to wake up pain free lol, it's staying for a while longer I feel, and there aint sod all I can do about it, just live with it.
Sharon x x
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acidcase
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Re: Hi every one from a newbie
« Reply #19 on: Aug 13th, 2006, 5:51pm » |
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Hey Jonny cheers for the comment checked out your web site , working my way up to a full sleave, i will get there one day !
Also a fan of a perfect circle , i saw Tool live recently !
I wonder how many heavily tattoed CH'rs the are out there ..lol
Shazza hang in there the cycle will come to and end and you will get decent meds when you see that Neuro !
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| « Last Edit: Aug 14th, 2006, 4:48am by acidcase » |
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