OUCH(UK) Organisation for the Understanding of Cluster Headache

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#1 Fri, 01/08/2014 - 11:45
Amethyst73
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Joined: 01/07/2014 - 12:43

Wish Me Luck

Got my Atos assesment last one they aborted as nurse felt uncomfortable as laid on couch trying to cope she asked questions as suffer from Chronic Bi Lateral patellofemoral arthritis so laying down is easier they made me stand for 20 mins as chairs too low told could take any pain relief as affect assesment so was in agony so when laid on couch was easier but she said wasn't comfortable doing assesment so aborted it said had enough info on knees but not on my 'bad migraines' each time she said it I get mad she said go back to your gp get us more info on "on my bad migrains" so as she said that said "they are cluster headaches" she said same as migraine " so looked at her & in a calm voice said "sorry I forgot your a nurse so you would not of had the training to know the difference between the two if you had you would never classify a cluster as a bad form of migraine so I understand your lack of medical knowledge is why you keep calling them just bad migraines" she gave me the look of daggers two people waiting were trying not to laugh but sadly my gp didn't bother to fax the info so now got to go through all this again but if do get a headache & they stop it again they will stop my money even though not my fault so feeling very scared knowing how nasty & patronising they are so will be thinking of all the support I get from site & just try & get through this degrading medical xxxx

PS is there a way to get some more copies of the cluster headaches explained for family & the booklet you get in your member pack as mine has gone AWOL willing to pay for new booklet & info sheets & how do to attach a photo to a forum post as need to add couple photos cheers.Amethyst 

Sat, 02/08/2014 - 01:58
Phil
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Joined: 26/02/2014 - 17:02

Good luck.

_________________________________________________________________________ Yeah I know, my coat's already on.

Sat, 02/08/2014 - 09:27
Dorothy
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Joined: 19/02/2014 - 10:16

Hi Amethyst.  There's a download section at the bottom of the home page where there are documents describing CH that you can print out.  When is your next assessment?  I have a spare booklet I can send you - pm me if you want me to do that. 

Photos - click on the square image box on the reply toolbar.  Click the blue "browse server" then click upload on that toolbar. This takes you to your photos, choose one, upload then insert. Hope that isn't as clear as mud!

Dorothy

Sat, 02/08/2014 - 22:18
Amethyst73
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Last seen: 11 months 1 week ago
Joined: 01/07/2014 - 12:43

Sadly don't have a lap top & can't down load or print be great if could have the book as well will ring help line to ask for the fact sheet the Atos went so quick asked more about my bad left hip that got to have x-rayed to see if arthritis has got it & also my injury that affects my shoulders asked about muscular Fasciitis told her was going to be referred to a neuro hospital instead of asking for info & name of consultant as last one they aborted due to lack of info this time didn't ask about it seems even though will need double full knee replacement won't cure won't get full movement ever again & not a cure but can help ease some of symptoms but found out that was on list in 2011 but a 2nd surgeon disagreed so was removed then after last op my knee surgeon of 20yrs has been refusing to do the op so as only 41yrs will have huge fight to get them done so seems my headaches & knees will be magically cured in 3-4 yrs according to DWP nothing wrong with me just lack confidence & that's only thing wrong with me nice to know will remember that when having next cluster attack thank you again for offer of the book Amethyst x

Sun, 03/08/2014 - 09:22 (Reply to #4)
Dorothy
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Joined: 19/02/2014 - 10:16

I sent you a private message Amethyst x

 

Dorothy

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