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Finding a good GP :)

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#1 Wed, 01/10/2014 - 21:00
David_J
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Last seen: 1 year 3 weeks ago
Joined: 18/09/2014 - 10:31

Finding a good GP :)

Aah, what a delight it is to walk into a gp surgery, not knowing how things are going to go, and then for the doctor to tell you she treats other sufferers, and get this, they even have high flow O2 available in the surgery that I'm welcome to go and use whenever needed! How fantastic is that? It's unlikely that I'd ever use it as I'm normally too far away during the day but it's great knowing the option is there.

She was happy to represcribe the zolmitriptan nasal based purely on my say so and refer me back to my old neuro at Leeds general. She was also happy to prescribe the lidocaine nasal spray or drops, but they didn't appear on the prescription list Sad She said they might be on the "amber" list and only the specialist can subscribe. I thought it was odd, but I was scanning the screen with her and they weren't listed.

Aah, what a relief to know that I won't have to fight (even if it did take 15 days to get an appointment). After the miserable 10 hour shadows I've had today, it was such a blessing.

Thu, 02/10/2014 - 09:08
Mike
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Last seen: 5 years 2 weeks ago
Joined: 21/03/2012 - 12:43

Yes David you will find the odd helpful GP.

The only listed treaments in the BNF are high flow O2, sumatriptan injections and as a last resort the nasal sprays.I have said as a last resort because most of the spray goes straight down the throat - some 90%. This partly to do with the blocked nasal passage CH sufferers have during an attack. This small amount causes a delay in aborting the attack to up to 20 minutes. I assume you have O2 at home.

 
 
 
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Thu, 02/10/2014 - 10:12 (Reply to #2)
David_J
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Last seen: 1 year 3 weeks ago
Joined: 18/09/2014 - 10:31

Hi Mike,

The zomig nasal for me aborts in 11 minutes, so a reasonable timeframe. Nowhere near as quick as O2 mind, but hey-ho. You're right that there is a degree of post-nasal drip but enough of it must get up there! Until someone starts making a sub-q zolmitriptan, it's what I'm stuck with. Sumatriptan and I do not get on.

No O2 at home; it's very rare that I'll get hit there, I'm normally at work or out so I don't think it justifies the cost to have big cylinders sitting at home as ornaments just in case. I'll be discussing with the neuro about getting ambulatory cylinders and trying the lidocaine. Some research papers are suggesting under 5 minutes abort time, plus the benefit of not hitting my BP for 6, I reckon it's got to be worth a try.

PF last night and so far today. I'm off to Germany for a long weekend tomorrow, and feeling optimistic.

Wishing you all the best,

David

Thu, 02/10/2014 - 11:13 (Reply to #3)
Colin Allen
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Last seen: 1 month 1 week ago
Joined: 21/03/2012 - 15:19

David,it might be a good idea to take Frovatriptan before you leave our shores. It may keep you pain free for the duration,and it doesn't have the same impact on the blood pressure as the subcutaneous version.

Thu, 02/10/2014 - 11:59 (Reply to #4)
David_J
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Last seen: 1 year 3 weeks ago
Joined: 18/09/2014 - 10:31

Thanks Colin, I did think about that last night but forgot to mention it to the GP Sad Not sure there's a lot I can do now besides cross my fingers unless there's a walk-in centre I can visit.

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