OUCH(UK) Organisation for the Understanding of Cluster Headache

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#1 Sat, 19/07/2014 - 14:56
Amethyst73
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Last seen: 1 year 2 months ago
Joined: 01/07/2014 - 12:43

Support

Are there any Sufferers that live in or near Oxfordshire as be great to get a support network locally as well as on here 

Sun, 20/07/2014 - 11:17
Val
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Last seen: 3 days 4 hours ago
Joined: 21/03/2012 - 15:16

There are quite a few sufferers in your area, and they will no doubt contact you.  It might be a bit quiet here this weekend as there is an OUCH meeting on and regular contributors to the forum are in attendance!  Anyone in the oxford area, if you want to meet up with Amethyst (beautiful name!) suggest you contact her by private message when arranging venue.  The world and his neighbour can read our forum and there are some funny people out there! 

Welcome aboard Amethyst - is the black cat on your logo to do with a certain ship's cat?  I'll explain that; HMS Amethyst was caught up in an international incident in 1949 when it was fired on by communist Chinese forces.  They were holed up in the Yangtse river for several days but broke through a blockade at night to escape.  The ship's cat was awarded the Dickin Medal for bravery in continuing to kill the rats in the bilges while under fire - he was a black cat salled Simon. 

Now back to CH, tell us a bit about yourself, you'll always get a reply on here and don't forget we have a helpline as well as the Facebook group and you can e-mail to helpline@ouchuk  etc if you don't want to talk on the phone.

Val. :)

Sun, 20/07/2014 - 18:44
Amethyst73
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Last seen: 1 year 2 months ago
Joined: 01/07/2014 - 12:43

Amethyst is my birth stone hence used it for my name the black cat was picked as wouldn't let me upload a pic of my catMocha Choca Latte or Mocha to his mum as when have a attack Mocha & my other cat Minnie stay next to me just the same as when my chronic arthritis plays up (got nasty long ambulace journey all the way to Bristol soon am sure wont be pleasent & a waste of time as no surgeon will touch my knees with a barge poll) or after a dislocation & the pain has been bad they lay next to me as am single spinster they are my comfort as my dad doesn't beleive in headaches can get that bad & brother thinks am a drama queen & wants nothing to do with my health so hence asking for some support as still learning I read posts by others so can see how others cope & tips all of which have been very helpful especially from Colin who has been my cluster headache light in the tunnel even though my emails seem cryptic but just can't word things the right way so as have no support so thankful for this site & Colin as now don't feel like a "drama queen" still bad use 15 ltrs but not for every headache as if I did need a lot more & not sure allowed it so going to speak to oxygen nurse tomorrow was only diagnosed last year after my regular gp was away so i saw a different one who noticed my increased need for migraine tablets & visits to out of hours with eye pain swelling watering eyes kept think was allergic reaction so he asked me some questions when he printed out the Cluster headache after i read it I was so happy finally everything made sense & have been very lucky as I got all the drugs & info I needed but still find out about Ouch till recently as I was trying to cope alone till now & discovering Ouch really has been the best thing ever recently had my Atos assesment the "Nurse" kept  was happy with my knee info but soon told me couldnt  take my pain meds for my knees even though had to stand & wait as chairs too low asked again as knees were so painful as walked to far again told no as will interefer with assement then was talking to me about my migraines which really got me upset tried to give her the info sheet she refused & as laid down down due to my knees then felt my left eye getting really painful which is my first sign the one is on way went to cover eyes she saw oxygen & aborted the assesment told me needed more info from gp on clusters but asked gp she needed to say which gp diagnosed & what led him to it what meds & how it affects you but she didn't write much which means will have to go again but this time alone as my support worker has left & not sure if get anther so will have to be going to be given the Spanish Inquisition & bullied about clusters & with no support or some one say back off seems cant get that support so its me vs the non believers of Clusters am scared very scared as they insist on calling them migraines so about me live in Oxfordshire with Minnie & Mocha who i got from local cat rescue that i still help I have Chronic arthritis in both knees left hip & hands & Clusters used love doing crafts but sadly can't do much my only passion & interests left are cake baking & decorating which now have adapted kitchen & lots of gadgets I can still do also have a gift as a spirituial healer (bit like reki ) & can help others sadly cant seem to help myself go to my local Christian spiritualist church where get healing they picked up on clusters been taught great breathing techniques which try & use for the "Aftermarth" of the cluster willing to try anything that may help found my humidifier with lavender helps as the humidifier is great as colour changes & soothes a little bit & every little bit that helps is worth it that's a kind of guide to me but still learning about how to deal with the headaches but its so much better now have Ouch & its help & advise 

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