Posted by Margi (126.96.36.199) on July 24, 2001 at 12:14:21:
We could all take lessons on how to be the best supporter ever from this lady: Carol, Simon's wife. Awesome contribution, Carol. Hope you don't mind me doing this, Simon. OUCH UK is doing some pretty fabulous work over there.
Read her story, and then read the thread below it. Brenda is also doing it.
This totally rocks, gang. (A link didn't work, it only took me to the main page of the UK OUCH site, so I've had to copy and paste here. Worth the read though...)
"A Bower of very little brain.....
Cluster Headaches UK Discussion: Publicity: A Bower of very little brain.....
By Carol on Tuesday, July 10, 2001 - 06:02 pm:
Have just returned from the big city, and feel compelled to tell you all of my day, in the hopes that other guinea-pigs will leap forth and help Prof Goadsby and his team.
I’m a fortunate being in that I don’t suffer from headaches of any sort, so when I was up at Queen Square with Simon recently, Manjit asked me if I’d be interested in taking part in their research programme as a control.
They had many scans of headaches sufferers but rather too few of non-sufferers. I was more than happy to help (though to be honest the fact that I knew I would have to have pain induced for at least one of the scans did worry me – how would I cope?!) They do need lots of people so that they can more accurately map the workings of the brain.
Anyway, here I am in fine fettle, looking forward to my second visit next week.
Having had everything explained in great detail, and having signed the consent form, I had one more hurdle. As I am female and under 90 I had to have a pregnancy test! (This was negative I hasten to add!)
A quarter hour MRI scan was done to get a picture of my brain. This involved lying very still in a tube that seemed to make strange grunting noises around me, but was not as unpleasant as I thought it might be. (Ear defenders provided.) Having been mildly claustrophobic, when on Outward Bound activities in caves and things, I had no problem here. Anyway, you have a panic button just in case.
After this I had a canula put in my arm, and was injected with a radioactive liquid before having a series of PET scans – I have checked and I’m not glowing in the dark. (In this scanner it’s just the head that is inside the machine.) These scans lasted just a few minutes each, and I felt quite comfortable during them. Then….
(The idea of these scans is to see how and where people’s brains react to pain. So, at this point people are given either a no-pain situation or a pain situation…)
…Manjit very gently inserted a needle under the skin of my forehead and started an infusion of an acid solution. As it got more uncomfortable he asked me to rate the pain; at about 5 out of 10 he took some more scans. This pain lasted no more than ten minutes, and I knew that at any time I could opt out of it. Once the pain had rapidly subsided, they took a further scan.
So, that was that!
I’d like to stress that I felt that I could have stopped the procedures at any time, and this made me feel very safe and in control of what was happening to me.
I really would urge anyone who is able to, to consider going to Queen Square to help with this very important research. All you need for this area is that you are one of a family with no history of headaches – clusterhead supporters can do their bit here. (Travel expenses are covered and Manjit makes a mean cup of tea!)
(As Peter Goadsby said in London, this research is also proving valuable for all neurological conditions.)
Get to it…
(PS. They did find a brain, or so they said…)
By Brenda on Tuesday, July 10, 2001 - 06:15 pm:
I was so pleased to read the above.
I went down on 5th June & had my first scan as I don't suffer from headaches either. My second scan is on 25th July. Chris was very embarassed when he asked me a grey haired lady if I would mind having a pregnancy test.
Please all you none headache people out there help if you can.
By Splodge on Tuesday, July 10, 2001 - 11:25 pm:
Thank you very much Carol and Brenda for your willingness to take part in the research. I have volunteered my uncle to Manjit as a control as he is a none headache person. Eighteen months ago I would have fallen into that category, I wish I still did, perhaps with the 'controls' help I may fall into that category in the future.
By Donna on Wednesday, July 11, 2001 - 02:44 am:
To Carol and Brenda:
How generous and unselfish of you two to volunteer to this study. It's people like you who will help put this dreadful puzzle together, piece by piece.
By ave on Thursday, July 12, 2001 - 09:12 am:
Great work (non-pregnant) ladies.
By Riccardo on Tuesday, July 17, 2001 - 03:49 pm:
Thanks, Carol, you're a great lady!
All the needles inserted are not a thing for all the non-sufferers.....
By Simon on Tuesday, July 17, 2001 - 08:21 pm:
We went back to Queen Square yesterday for round two. In order to make sure the experiment was fair, there had to be an element of doubt as to whether the good lady would get the pain again, or have a pain free experience. Fortunately it was the latter, which made the whole thing much easier. No MRI scan to begin this time, but had to have another pregnancy test (don't know what these doctors think we do all day......)
The PET scan was fairly quick and routine, so we were away pretty quickly. Unfortunately I wasn't allowed to watch so spent the time driving through London looking for a parking meter - gave me a migraine (oops sorry to mention the word).
Manjit is very keen to get another 20 or so volunteers. I gather the idea is to try and match them age for age etc. with the cluster patients they have scanned, to give a really significant readout at the end of the whole experiment.
So...if you know anyone who might help, let me know and get them in touch with me. They need to be non clusterheads with, preferably, no history of headaches of any type in their immediate family. No payment is made other than expenses, but the work (as Peter Goadsby mentioned at the London meeting) is having a wider effect than just in ch, so that is an added incentive for people.
It is also quite fascinating watching how these things operate, and you'll get a good insight into both technology and research.
Come on folks, drag your in-laws along (especially for annoying Mothers-in-Law the pain one could be most entertaining!)
By Riccardo on Thursday, July 19, 2001 - 06:47 am:
If Doc Goadsby/Matharu want a CH in remission from 3 years, I will be glad to offer my body (no sex involved) to them.
Obviously, the trip expenses to London is on my charge (sp?!?). I ask only for a quick exams serie (do all in one day, if it is possible).
I want only the same refunds of expenses of a normal Brit people, nothing else.
Let me know, Simon
By Les on Saturday, July 21, 2001 - 03:05 pm:
I am trying to arrange a meeting with my MP to try to find out, amongst other things, what money is available for research into CH; what facilities are available for this research; how much research is going on, apart from Prof. Goadsby; why do sumnatriptan tablets take 30/40 minutes before they become effective and ask if she will approach the pharmaceutical companies to remedy this.
For those who wish to e-mail their MP a list of MPs addresses can be found on the following site.
www.ukcia.org/politics/mp-email.html if you don’t know whom your MP is type in your postcode and it will tell you.
Alternatively you can log on to www.conservatives.com, click on the link “make a difference” and you can send e-mail. The site tells us that all e-mails are read and passed on to the relevant shadow minister or member of staff.
By Les on Monday, July 23, 2001 - 01:11 pm:
I have a meeting with my MP on 3rd August to discuss various aspects of CH.
If anyone would like me to bring up anything specific please mail or post asap in order to give me sufficient time to prepare background information. "
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