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loqusiste
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For the first year its come twice
« on: Dec 5th, 2007, 7:56am »
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Hi all
 
My name is Ian and I am 33 years old. For the last ten years in the autum I have suffered for about two weeks a debilitating series of headaches, which my Dr put down as . . . .
 
"one of those things that young men suffer from"
 
This autum in my usual visit to the hospital a Dr looked at the pattern and asked quite a few questions relating to cycle, pain intensity, orientation etc, and diagnosed cluster headaches.
 
In many ways I am pleased to have this diagnosis, although I would rather not have the condition. But at the very least, it has allowed me to do some reearch myself, and to see that I am not some sort of work shy freak on my own, or worse still a hypochondriac - as some of my previous work colleagues have said.
 
"Its only a headache, why are you off work ?"
 
I have been fortunate to only suffer from a single bout annualy, up until this year. To my horror I woke up recently screaming feeling like somoene was trying to pull my right eye out of my head. It felt like there was blood running down the side of my head from the eye (it wasnt !).
 
I am 4 days into my present cycle and exhausted. My days are "relatively" issue free, but the debilitation from the night attacks leaves me unable to do much but to float between bed and an extremely hot bath.
 
I am fortunate to have a new boss at work who understands these things happen unlike my previous boss who would challenge very harshly.
 
Anyway I would like to say hi to all the folks here and thank you for creating a comunity here that I can feel part of and not always have the residual feeling of being different (not in a good way).
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Re: For the first year its come twice
« Reply #1 on: Dec 5th, 2007, 9:11am »
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Suggest you hit the OUCH button, left, and get associated with the group in GB. Good source of support and dealing with your health care system.
 
Talking to your doctor about starting a preventive medication would be helpful. Untreated suffering is not acceptable. Print both of these articles and use a tool to discuss your options.
--------
 
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
================
Treatment guidelines from Europe
 
------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:  
EFNS guidelines on the treatment of cluster headache and other  
trigeminalautonomic cephalalgias.  
European Journal of Neurology. 2006; 13: 1066–1077.  
 
Download free full text:  
http://www.efns.org/files/guideline_49.pdf  
(Thanks to "cluster" for link.)
 
 
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Bob Johnson
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Re: For the first year its come twice
« Reply #2 on: Dec 5th, 2007, 9:27am »
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Talk to your doctor about trying melatonin to get you through the night.  (6-18mgs)
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Re: For the first year its come twice
« Reply #3 on: Dec 5th, 2007, 11:16am »
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Hey welcome to the "community" as you put it! You'll find we are a pretty tight family that prides itself on takingcare of each other. Unfortunately it's not unusual for the condition to change as it has on you. From once a year to twice a year cycles, shorter or longer cycles, it's one of the more frustrating aspects of the condition.
 
You need to read the articles Bob posted for you, with the following 2 pronged treatment in mind.
 
1: a preventative medication strategy. This will be a medication you take while you are "on cycle", that is getting your headaches, to reduce the frequency and the intensity of your attacks. I use lithium, other popular preventatives are verapamil and topomax.
 
2: an abortive strategy. You have a headache starting, now what? Your first line abortive should be oxygen. Many can stop a headache in less then 10 minutes using ONLY oxygen. It's really a miracle treatment for many. Other abortives are imitrex injectable or sprays, (pills are worthless, take too long to absorb)....these are effective but very expensive.  
 
Other good abortives in a pinch are strong coffee or energy drinks, Rock Star, Monster, any that contain the combo of caffeine and Taurine. Some can abort a hit by chugging one of these down at the start of an attack.
 
You have much reading to do. You will find the more you know and understand about the condition, the better chance you'll have of assisting your doctor in finding an effective treatment plan. Meanwhile stick around the board and get to meet your new family!!!
 
Guiseppi
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Re: For the first year its come twice
« Reply #4 on: Dec 6th, 2007, 4:30am »
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Hi Ian,
Sorry I'm late getting in on the act but I will do all I can to help I promise.
 
I need to ask you some questions though (cos I'm a nosey old bag!) so I can make suggestions for you to discuss with your doctor.
 
First of all what meds have you been prescribed both now and in the past and what worked or didn't work?
 
Have you ever tried high flow Oxygen?
 
How long do your cycles usually last?
 
How long do your attacks usually last and how many do you usually get in a 24 hour period?
 
There are a lot of options - we'll help you find the best ones for you.
 
As far as explaining things at work, follow this link and print off the letter to friends and colleagues explaining what it is. It will probably help alot.
 
http://www.ouch-us.org/downloads/ch_syndrome.pdf
 
I'm having a meet and greet (which is a polite way of saying a complete bun fight!) for other clusterheads at my house in Bingham, Notts on the 14th Dec. I realise its quite a way from you but there are others coming from pretty close by to you who you could get to know too. You and your's are more than welcome to come and join us  Smiley  Let me know if you're able and I'll pm my address and phone number etc.
 
In the meantime, hang in there. We'll help all we can
 
Helen
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Re: For the first year its come twice
« Reply #5 on: Dec 6th, 2007, 5:08am »
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Hi All  
 
Thanks for the response.
 
Helen to answer your questions . .  
 
1. My Dr has not really prescribed anything much for it except a heavy dose of anti inflamitories and paracetamol. To be honest I am kinda glad that it now has a proper label rather than "just a headache"
 
2. No have not tried oxygen, but have been PM'd links on that so will be reading upon it.
 
3. Cycles are usually for a approx week to week and a half.
 
4. I would say I normally get 6 to 7 attacks per day from anything from 10 minutes up to 90 minutes with 5 minute transitions either side.
 
 
I hope this is the info you were asking for.
 
Regards  
 
 
Ian
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Re: For the first year its come twice
« Reply #6 on: Dec 6th, 2007, 7:11am »
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Ian that sounds more like Paroxysmal Hemicrania than CH. They are very similar but differ in the length of time of attack and also their responsiveness to different meds.
 
They are both from the same group of HA's which is TAC's or Trigeminal Autonomic Cephalagias.
 
The pain is the same, the duration of attack and amount of attacks is the biggest key really.
 
What I want you to do is go to your doctor and ask him to try Indomethacin. Its an NSAID but it's very rough on your stomach so you do need to take another med to protect your stomach at the same time. The good news is that PH is highly responsive to it and it will block just about every single attack for you. It's definitely worth a try!
 
Let us know how you get on okay?
 
For further reading on Paroxysmal Hemicrania you might want to look here.  
 
http://www.ouchuk.org/html/other_parox.asp
 
I'm not a doctor, I'm not diagnosing you - I'm just making a suggestion based on the info you've given me and I'm keeping my fingers crossed we've found a magic bullet for you!!
 
 
Helen
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Re: For the first year its come twice
« Reply #7 on: Dec 6th, 2007, 8:26am »
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Thanks Helen
 
I am booked in to see my GP tomorrow and will take your observations with me.
 
I Have my fingers crossed for a result here.
 
Regards  
 
Ian
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Re: For the first year its come twice
« Reply #8 on: Dec 6th, 2007, 8:35am »
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Also worth noting I made an error on posting duration of attacks, I can spot this now as I have not had an attack since shortly before that post.
 
Durations are between 1 hr and 3hr, mostly about 90 mins but has on occassion been as little as 10 mins.
 
Man  I hate not being able to concentrate.
 
Sorry for any confusion.
 
Having read up on it a bit, there may be something in this, but am I right in thinking that PH are a little more random, where as CH tends to be more like clockwork? I understand it will be different from person to person and I may well have missed a point.
 
Regards
 
 
 
Ian
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Re: For the first year its come twice
« Reply #9 on: Dec 6th, 2007, 9:56am »
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It can work either way with either condition to be honest Ian. Your timings are different to your first post but having said that A week of Indo is well worth a try anyhow.
 
You need to speak to your doctor about abortives. Meds to take when the attack gets going. Oxygen at a high flow rate of 15 litres per minute is, to use a technical term - BLOODY BRILLIANT!! Your doctor will have to fill in a HOOF for that (Home Oxygen Order Form) as its delivered directly to your house. It's also centrally funded rather than practice funded so he's going to like that option a lot better than the next one I'll come to!
 
Ask him to tock the box for "Ambulatory Oxygen" as well so you can have portable cylinders for carrying out and about (no much bigger than a 2L coke bottle) and get him to write "Cluster Headaches" in the comments box.
 
I know several people who use O2 for PH as well as CH so don't write it off. You also need non rebreather masks which will be supplied by the O2 company (BOC in your region) if you ask them when you order Oxygen each time. I can guide you through all that once you are prescribed (get him to fax the HOOF over too)
 
Next up - the expensive option! Imigran injections are the only licensed treatment for CH in the UK at present. They are bloody expensive and you can only use 2 in 24 hours. They are an auto injector so you don't need to worry about syringes etc - very much like an epipen sort of thing.
 
They work very quickly - usually in about 10 minutes but the downside is they have a half life of 2 hours so bascially you are protected for up to 4 hours out of 24 which isn't so good when you get hit as much as you do.
 
(subliminal messaging - stress the O2 here!!)
 
There is another triptan option thats worth asking about and that is Frovatriptan. Its a pill so is absolutely worthless for acute use - ie when an attack starts. You need to take this one way before an attack is due - up to 2 hours in advance in fact! The beauty of this is that it will protect you for up to 26 hours and you can take two pills in a 24 hour period. The pills aren't cheap either but they are cheaper than the injections and are worth considering (Injections are £56 per pack of two so £56 per day! Pills are around £6 each)
 
See why O2 is looking good?! I can abort an attack with O2 as quickly as with imigran. The trick is starting to huff it quickly enough but we can teach you all about that later.
 
I hope this helps - check back and ask all you can so you go armd with lots of things to discuss tomorrow!
 
Helen
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Re: For the first year its come twice
« Reply #10 on: Dec 6th, 2007, 1:51pm »
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Hi Helen
 
I have telephoned my GP in advance and they are open to the idea of oxygen but would like to see some documentation behind it.
 
Is this something that is an "official" remedy, or something that people have just found to work?
 
Are there any references you are aware of that I can print out for them and take in with me tomorrow ?
 
Again many thanks for your interest and support
 
 
Ian
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Re: For the first year its come twice
« Reply #11 on: Dec 6th, 2007, 2:05pm »
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Here is the info from OUCH UK
 
http://www.ouchuk.org/html/clusters_abortive.asp#2
 
Here is the info from OUCH US
 
http://www.ouch-us.org/medications/oxygen/o2info.shtml
 
 
and probably most useful
 
http://www.patient.co.uk/showdoc/40001603/
 
I am a chronic clusterhead and I have a six year old who has been diagnosed with CH since the age of three. We both use Oxygen and for Jasper, it is the ONLY treatment he can use.
 
If you would like my phone number for them to be able to as anything I'll happily pm it to you. I know I sound like God Almighty here too but I'm also the Vice President of OUCH US if you think that will carry any weight! I'm damned and determined we're getting you a prescription tomorrow in case you can't guess LOL
 
Helen
 
 
 
modified cuz aye karn't spayull  Roll Eyes
« Last Edit: Dec 6th, 2007, 3:31pm by LeLimey » IP Logged





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Re: For the first year its come twice
« Reply #12 on: Dec 6th, 2007, 2:08pm »
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And trust me, when you have that witch Lelimey on your side, there is nothing that can stop you! Wink Another STRONG vote for the oxygen, it has been a "miracle" treatment for me!!!
 
Guiseppi
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Re: For the first year its come twice
« Reply #13 on: Dec 7th, 2007, 5:27am »
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OK been to doctors, they have prescribed Indomethacin and are investigating O2 so I am happy to report that progress has been made. I will keep you posted as to what happens with the O2 investigation.
 
I am really not a medicine person, so the O2 certainly has my interestas it is not a produced medication as such.
 
Regards
 
 
Ian
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Re: For the first year its come twice
« Reply #14 on: Dec 7th, 2007, 7:28am »
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When are they going to let you know with regard to the O2 Ian? Did you ask about Imigran at all? I really don't like you being without anything to abort these attacks.  Undecided
 
As a fix-me-up have you read anything on here yet about coffee, ice/heat or red bull? If not I need to do a spot of earbending to tell you all about them!  Wink
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Re: For the first year its come twice
« Reply #15 on: Dec 7th, 2007, 11:21am »
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I have read about them.
 
Been chockingback the red bull this week - hasnt noticably helped. As for coffee, would tea would as well or is it a particular to coffee that is the benefit ?
 
As for the O2, still have not heard from dr's even after a chase telephone call.
 
Will be on their doorstep first thing in the morning with my "I am not a happy bunny at all" head on
 
On a great note, had a totally pain free day today! really gee'd up.
 
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Re: For the first year its come twice
« Reply #16 on: Dec 7th, 2007, 11:57am »
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Coffee is better as you can make it stronger - its the caffeine hit you need! Caffeine is a vaso constrictor same as Imigran and Oxygen (high flow) and that's what's needed to reduce the blood vessels which are causing the pain.
 
Red Bull is great as it has taurine as well which is kind of like a turbo boost for caffeine! The trick is to take it early enough in the attack. Basically at first twinge. The longer you leave it the less chance it will work and the longer you have to suffer - not good!
 
I'm sending "early morning transmission failure on the M1" vibes to your bloody doctor right now... PIG!  Angry
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loqusiste
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Re: For the first year its come twice
« Reply #17 on: Dec 12th, 2007, 9:33am »
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OK so the oxygen is on order and should be here in a day or two. Had to see the senior practitioner to get this sorted.
 
Thanks to all here as he said that the research notes provided were comprehensive and well researched.
 
I am looking forwards to this to see if it will help.
 
Regards
 
 
Ian
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