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Singing??

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#1 Tue, 25/11/2014 - 12:18
Phil
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Singing??

Either my singing reaches a kip level of at least 6,
or the motor trigeminal nerve is stimulating the other,
but it has had a better effect for me than the Red Bull trick so far.

The biggest surprise was bursting out in song while battling
a kip 6 with freezing water to the face in the early hours.
Have I completely lost it?

Tue, 25/11/2014 - 19:00
Mr Git
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No, but I think you've lost that loving feeling......:bigsmile:

Have you considered the X-Factor?? ;)

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Wed, 26/11/2014 - 11:35
Val
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Well!  That's a first - singing during an attack - here's a thought, is it your brain's way of sucking in more oxygen because you inhale deeper when singing????  Do you have 02 Phil?

 

Val.

Wed, 26/11/2014 - 12:58
Phil
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No oxygen, just the injections.
I've had to argue with the doctors' surgery for pretty-much every prescription over the 14 years I've been having them. I'm at my intimidating, obstinate limit; as I've said in an earlier post, to get an O2 prescription out if their hands as well as sumatriptan, I'd have to break fingers.

Wed, 26/11/2014 - 17:11
Mr Git
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That's shameful Phil, sounds like your GP needs publicly exposing and reversing into a corner.  Is it possible to change GP's??  I've no idea as I have been blessed with one of the good guys for 23 years. My GP gives me everything I need.  He actually looks forward to seeing me because he says he learns so much about the condition and appreciates the updates regarding treatment options which, he says, have benefitted other CH patients.  If only they were all like him!!

Val - just a thought, but could one of Mike's previous 'reverse into a corner' letters be adjusted and turned into a generic template which could be downloaded from the website?  This could help compile the basic framework of a letter which includes key phraseology leaving the GP and/or whatever is the up to date equivalent of the PCT with no option other than to prescribe according to the BNF (as opposed to their preferred budget).

Don't get me wrong Phil, I've read this forum long enough to appreciate that you know far more about CH than I'll ever know and you'd be more than capable of doing this, it's just that over the years Mike has become an expert in dealing with GP's like yours, and knows the terminology which leaves them with nowhere to go - just a thought as it could help others.

In the meantime, have you considered entering BGT and singing 'I will survive' whilst having a full blown red-eye?  I'd vote for you!  ;)

Looking forward to the album - 'Beauty and the Beast'??  :bigsmile:

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Thu, 27/11/2014 - 12:48
Phil
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Actually, my gp surgery is backing itself into a corner:
In one of their attempts to wriggle out of prescribing injections,
they reckoned a neurologist had told them sumatriptan injections makes the condition worse. So the next step was to arrange an appointment.
I naturally agreed-
Choose and book: Uncle Manjit.

In my last argument, I managed to slip the phrase "Trigeminal Autonomic Cephalalgias" into a sentence.
Not bad for a deep-furrowed, leonine, over-masculinated CH sufferer.

But to be honest, I don't usually need O2.
My bouts have been known to skip a year, and the cold water trick usually aborts an attack in the early stage, the injections are mostly for the waking, screaming attacks.

Thu, 27/11/2014 - 08:30
Mr Git
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I thought I had heard of all the 'tricks of the trade', but that's a new one on me, I'll give it a go, I'll try anything.  In the early days (pre Polar Powder) Jane used to wrap crushed ice in a cold wet flannel, so I guess that was on the same theme.

I once read about a guy who would get in his car in the middle of the night and drive at speed with his head sticking out of the window.  I wouldn't recommend this, Phil's idea sounds infinitely safer!!

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Thu, 27/11/2014 - 12:33
Val
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I've sat in my car in the driveway with the aircon going full belt when I ran out of 02 once!  It did work but took much longer than sucking the 02!

 

Val.

Thu, 27/11/2014 - 13:23
PeppermintGiraffe
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Joined: 21/11/2014 - 11:29

Just seen Mr Git's post about 'Polar Powder' - instantly it peaked my interest. Currently I use those cooling sticky gel strips which smell weird and look like I have a sanitary towel stuck to my head (this is most amusing when you wake up forgetting you had one on, stumble out to the car to get mcdonalds drive through and wonder why everyone is laughing at you).

I've checked out their website but they are out of stock at the moment - I will need to keep looking to find them as they say they're reusable. £££ savings to be made!

 

Thu, 27/11/2014 - 13:36
Phil
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Joined: 26/02/2014 - 17:02

Hot or cold showers have been a CH trick for many.
I have a stand fan that seems to make a bit of a difference, especially on hot day attacks.

Some things worked just once or twice:
Crunchy oat cereal.
Trying to rip an old-style post-box out of the ground.
Press-ups.
Brushing my teeth.
A taxi journey.
A number 2.
Blasting music through headphones.
Posting on the forum.
Washing my hair.

I think it's random stuff
that makes the beast think "What the-"

Thu, 27/11/2014 - 13:42
Phil
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Must try the sanitary towel trick. :bigsmile:

Thu, 27/11/2014 - 16:06
Mr Git
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I think my post about 'Keeping a Cool Head' was on the old forum, but I seem to recall Val used it in a subsequent newsletter, so you might find it in an old newsletter PeppermintGiraffe.

I still find Polar Powder is the best option for me.  However, just a slight word of warning.  Following my post I thought I would update my Polar Powders as my original ones were looking seriously warn/tired (bit like me really!).  I ordered two new ones.  Unfortunately, they are not as good as the originals.  The manufacturers appear to have reduced the amount of powder in them.  This has had a seriously detrimental affect.  The whole reason why they work so well is that they are cold but still mold around your head.  As a result of less powder they now come out of the freezer like a stiff envelope with all the molding characteristics of a paving slab!!

If I had more time I would have whinged to the manufacturers as I suspect this may have been a cost-cutting exercise.  However, in doing so they seem to have eliminated the product's USP function.

In the meantime, I continue to use the old ones.

Stay cooool out there 8)

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Tue, 02/12/2014 - 08:24
Val
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Joined: 21/03/2012 - 15:16

You can get gel packs that you can pop in a freezer between uses, I still have one that I've had for eight years.  They usually come with a nice soft cover so it doesn't stick to your head and give you freezer burn!  Try chain chemists such as Lloyds etc.

 

Val.

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