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OUCH(UK) Organisation for the Understanding of Cluster Headache

Sumatriptan injections

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#1 Thu, 02/11/2017 - 20:34
Traf1701
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Sumatriptan injections

I have sumatriptan and oxygen to help curb my ch, however thenoxygen doesn’t seem to be as effect as it once was, the injections work fine but reading the lable it says not to use more than two in a 24hr period, I’ve spoken to my doctor and he’s told me I can take upto 6 over 24hr if needed. I was just wondering if anyone else had any info on this?

Thu, 02/11/2017 - 21:02
ElizabethK
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Hi,

As you say the leaflet that comes with the injections states that 2 should be the maximum taken in a 24 hr period which is correct.  Was it your GP or Neuro that advised 6?  Two is the safe amount as this medication has an action on the heart so any more than this there is a risk or heart attack or stroke.  Please talk to your Neurologist about this!

Keep trying with the oxygen as it can sometimes appear to stop working or become less effective, we do not understand why but find perseverance can help!

Liz

Fri, 03/11/2017 - 13:19
Traf1701
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It was my gp who told me I could take 6 if needed, I thought that was a little excessive. Normally with my oxygen after 15-20 mins I could feel it start to subside and then it would be done around 45 mins but the last few times I’ve been sitting well over an hour and it doesn’t seem to be even taking the edge off, never mind stopping them.

Tue, 07/11/2017 - 17:46
ElizabethK
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Have you got a non-rebreather mask or a Demand valve for you oxygen?  Just to ensure you are getting the best out of the oxygen, the rule of thumb is get on the oxygen as soon as you feel a niggle start, stay on until the pain has gone and then a further 5-10 mins to mop up the attack.  If however after 20 minutes, the oxygen has not had any effect on your pain it is unlikely will work for is particular attack.  At that point try coming off for 10-15 mins and then go back on for 15 mins.

Sometimes if you are on the oxygen a long time frequently it can cause a rebound attack!

Thu, 09/11/2017 - 10:02
Traf1701
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I have a non-rebreather mask, I’ve asked for a demand valve but my supplier doesn’t provide them, I have been looking into buying my own but don’t know which would be best to get.

this bout of ch’s just seem to come on a lot quicker and a lot more intense than usual.

thankfully the injections do work for me and start  working around 10 mins of using one, but with me taking 4-5 headaches a day atm I can’t use them for every attack. 

 

 

Thu, 09/11/2017 - 15:52 (Reply to #5)
John S
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Hi

i purchased my Demand Valve through Oxylitre in 2015. They were suggested to me by Val from Ouch since they provided a discount to Ouch members at the time. The cost to me was about £160. I have no regrets whatsoever about the purchase it has made a significant difference.

Oxylitres telephone number is 0161872 632 and I had to quote my Ouch membership number.

Good Luck

John

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