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Finally a pattern

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#1 Sat, 01/11/2014 - 23:38
Jazzioooo
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Last seen: 6 years 3 months ago
Joined: 03/09/2014 - 16:54

Finally a pattern

Hello all, just to let people know that I went to see my neurologist last Tuesday and after nearly 3 years we finally have a pattern with my CH's, I have my main bouts around January may and September!has anybody else have similar patterns? 

Moo-cow

Sun, 02/11/2014 - 09:09
Phil
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Last seen: 1 month 4 weeks ago
Joined: 26/02/2014 - 17:02

Christmas, new year and Easter are special times for CH. :party:
Most sufferers have bouts around clock-changing times,
it's all to do with the body-clock (suprachiasmatic nuclei)
in a little part of the brain (Hypothalamus)
that isn't quite right. (we're buggered)

Mon, 17/11/2014 - 09:02
Jazzioooo
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Last seen: 6 years 3 months ago
Joined: 03/09/2014 - 16:54

Well Im going through attacks now Sad so my theory is throught the window, so angry with my consultant , yet to put letter through to my doctors, I've handed my HOOF form in and they still haven't processed it, Im here pacing the floor with no help! 

Moo-cow

Mon, 17/11/2014 - 12:20
ElizabethK
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Last seen: 5 days 15 hours ago
Joined: 26/02/2014 - 14:26

Hi Moo-cow,

You may be experiencing a late Autumn bout, everyone is different and changes as times go on.  Why don't you give the Helpline a call 01646 651979 you won't regret it! You will get support and some great advice, make that call!

take care

Liz

Tue, 18/11/2014 - 00:53
Phil
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Last seen: 1 month 4 weeks ago
Joined: 26/02/2014 - 17:02

Manda, I did hint you might regret signing " Moo-cow". :bigsmile:
I'm in bout at the mo too: Small world 'ey?
(Newspaper pirate hat on.)

Tue, 18/11/2014 - 23:38
Val
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Last seen: 1 month 1 week ago
Joined: 21/03/2012 - 15:16

Moo-cow, have you tried calling the prescriptions adviser at your local CCG [Clinical Commissioning Group - previously PCTs] and telling them that you are not getting your oxygen as listed in the BNF and that the hold up is at your doctor's surgery.  All the GP has to do is complete the HOOF form, fax it off to the oxygen supply company and they then call you direct to arrange delivery.  Dear God, its sooooo easy for them! 

Val.

 

Sun, 23/11/2014 - 18:32
Jazzioooo
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Last seen: 6 years 3 months ago
Joined: 03/09/2014 - 16:54

Oxygen has been approved by the doctor having received my consultant letter x although I was told this Wednesday that he will send the HOOF form asap I'm yet to hear from the supplier which is a bummer because I'm in a bout now Sad

Moo-cow

Mon, 24/11/2014 - 08:12
duetto
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Last seen: 6 years 4 months ago
Joined: 26/02/2014 - 14:54

chase up the o2 supplier on the phone and explain the urgency of delivery.

Mon, 24/11/2014 - 08:16
duetto
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Last seen: 6 years 4 months ago
Joined: 26/02/2014 - 14:54

if the supplier is dolby ask for TWO masks as they only come with one washer each covering the holes [should be two washers as there are two holes]. so you need to peel one of the spare so both holes are blocked.

 

anyone know why they do this? 

Mon, 24/11/2014 - 13:13
Jazzioooo
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Last seen: 6 years 3 months ago
Joined: 03/09/2014 - 16:54

Air Liquide (Homecare) Limited
NHS regional oxygen lead contact: Viv Smith and Karen Hatch, I think are the suppliers if this makes sense x 

Moo-cow

Mon, 24/11/2014 - 14:28
duetto
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Last seen: 6 years 4 months ago
Joined: 26/02/2014 - 14:54

I had very good service when Air Liquide (Homecare) Limited delivered.

Mon, 24/11/2014 - 15:39
Jazzioooo
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Last seen: 6 years 3 months ago
Joined: 03/09/2014 - 16:54

Fingers crossed I'll hear off them very soon x

Moo-cow

Sun, 30/11/2014 - 12:00 (Reply to #12)
Sare Heid
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Last seen: 7 years 12 months ago
Joined: 30/11/2014 - 11:01

Know how you feel m8, suffered the same few years back , phoned up Ouch , they advised me to call Nhs 24, who would forward prescription to nearest 24 hour supermarket that had chemists, so that i could then collect, Not sure if that procedure is still on the go.

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