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#1 Mon, 09/03/2015 - 21:11
Simon Butler
Last seen: 7 months 2 weeks ago
Joined: 06/03/2015 - 17:43

New to CH

  • Hi everyone I am Simon 45 from Devon , just been diagnosed with the dreaded ch 3 weeks ago !! Reading everyone else's conditions mine at this point are no ware near as bad as some of your other suffering this horrible thing . My so called beast started coming 4 weeks ago, the first week only when I drunk !! Instantly I gave up drinking , the next week it was bedtime every night , this week it's bedtime and during the day at about 12 . I have my sumatriptan tablets to abort they work but are slow to work, they have just put me on amitriptyline to prevent ( only started these today )  . I asked about sumatriptan injections my GP said the next thing she would get me to try is sumatriptan nose spray ( trying this tonight) .
  • many thanks and best wishes Simon.
Mon, 09/03/2015 - 21:33
Last seen: 8 years 6 months ago
Joined: 03/03/2015 - 19:21

Hi Simon,

please see some earlier posts just keep on to doctor about injections. Nasal sprays are not quick enough to abort an attack. Also start making enquiries about home oxygen

Hope your bout will be short lived


Mon, 09/03/2015 - 22:09
Last seen: 4 years 10 months ago
Joined: 26/02/2014 - 14:55

HI simon

sorry you have to join us on here, but it's absolutely the best place for advice and support.

i echo what James has said about the oxygen and the injections. I've always had success with the nasal sprays myself until recently, and this is my 5th cycle now, with long remission periods in between, so I hope that gets you some quicker relief for now (the tablets don't work quickly enough to touch the sides). But by everyone's accounts the injections work far better and quicker (I'm in the process of switching to these too).

hope it disappears as quickly as it arrived


Mon, 09/03/2015 - 22:32
Mr Git
Mr Git's picture
Last seen: 5 years 6 months ago
Joined: 26/02/2014 - 14:34

Hi Simon

Welcome to the forum, just sorry you have to be here.

In the first instance I recommend you give the Helpline a call. The number is: 01646 651 979

Just leave your details and a Helpliner will call you back. They are all either fellow sufferers or supporters of sufferers, and they are all extremely experienced and very friendly.

Were you diagnosed by a neuro consultant?

When I was first diagnosed I was prescribed Sumatriptan Injections and high flow oxygen via a non-rebreather mask. This is all as per BNF (the GP's bible). I have since moved on to a Demand Valve.

The best advice I could give you is be cautious of taking all sorts of medication until you have had time to understand all the implications of taking them. Try to get to see a neuro on the 'good guys list'. If you are able to travel then try to see the best, Professor Peter Goadsby (our patron) who is based in south London. Follow the advice of a consultant like Prof and not GP's. GP's rarely come into contact with this condition. Best act on the advice of a neuro consultant.

As a new episodic sufferer, on day 1 my GP prescribed Verapamil, which was possibly the worst thing he could have prescribed me, and could have had catastrophic consequences as Prof has previously said that Verapamil can sometimes turn episodics into chronics. Fortunately, I didn't take it. Hence, why caution should prevail.

Best of luck with it.



Warning: This forum may contain nuts

Tue, 10/03/2015 - 20:19 (Reply to #4)
Last seen: 2 years 10 months ago
Joined: 26/02/2014 - 14:55

Hello Simon ,

another warm welcome to you, sorry you are suffering,

call that helpline , you will not regrets it I promise you.

the sumatriptan tabs didn't work for me, the injections are the thing and relief so quick and that's what we need when the pain is so bad  good luck and hope you get sorted out soon,and get some relief from that awful pain, 


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