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#1 Mon, 13/12/2021 - 17:30
Dazzler1972
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Last seen: 8 months 1 week ago
Joined: 13/12/2021 - 17:11

Any Advice Welcome

Hi,

I currently feel very frustrated with the help I am getting from my GP and  was wondering if anyone could offer any advice.

This is only my second bout of cluster headaches. The first was six years ago, lasted about six weeks and was managable with sumatriptan 50mg tablets.

This time is a different matter. There was no real build up and the first attack which happened in the night was like nothing I had every experienced. I only had some old tablets that were two years out of date and so didn't do much. 

I'm usually having three attacks a day. One when I wake in the morning, which I have been able to catch at the beginning most times apart from once when it was a definate 7 out of 10 pain that lasted more than an hour. The afternoon one is managable as I am aware that it is coming so can take the sumatriptan in good time and apart from once where it rose to a 4 out of 10 pain and took 2 hours to go they are usually managable and go within the hour.

It is the attacks that wake me from sleep that are unmanageable. I have never known pain like it. The tablets take what feels like forever to work. I have spoken to my GP who says that oxygen therapy is what is required for these. She has referred me on the NHS with a 47 week wait. I have enquired privately but cannot get an appointment before the end of January at the earliest. 

I have been back to my GP who has prescribed my nasal spray which is useless as my nose is so blocked during a night time attack.

Today my GP has prescribed me injections but these are only two a day. I have asked what I can do about the third attack and was just told that I can only use the injections twice and cannot use the tablets as well. 

I cannot leave the attacks day or night untreated so feel as though the only option I have is to stay on the tablets and suffer terribly with the night attacks. 

I have asked if I only use one injection at night am I ok to use tablets for the two attacks during the day but no one seems to know. The GP refers me to the pharmacist who refers me back to the GP.

I really feel like I am going round in circles and it feels as though no one is taking my pain seriously as there is no way I can leave an attack without any sort of treatment however long it takes to work

Thank you for taking the time to read this and I look forward to the response of people who have an understaning of how awful these things are. 

Darren Hartley

Mon, 13/12/2021 - 23:04
Clarem
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Last seen: 9 months 2 weeks ago
Joined: 13/12/2021 - 20:28

Hi Dazzler1972,

My husband is currently suffering with a cycle of cluster headaches. He usually has them for around 30 days every four years but this year has had 2 cycles. He has used the sumatriptan tablets, injections and oxygen previously and has found the injections and oxygen to be the fastest acting form of relief.  He has just been prescribed flovatriptan (something he has not tried before) - 2 tablets a day - and is using them with the oxygen. They seem effective so far and he mentioned they were quite fast acting, providing relief within 30 mins on most occasions.  Once you are prescribed the oxygen treatment we have found it to be a really great service - when you need your canisters replaced they often arrive within 2 hours of calling them. 

I would reccomend that you try to pester your GP to get the oxygen treatment as it is good to use alongside another form of medication.

I hope this is helpful and that your cycle ends soon! 

Tue, 14/12/2021 - 09:48 (Reply to #2)
Dazzler1972
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Last seen: 8 months 1 week ago
Joined: 13/12/2021 - 17:11

Hi,

Thank you for your response - it's very much appreciated

Can I just ask if it was your GP that prescribed your husbands oxygen or was it a neurologist? I have read on this site that GPs can prescribe but mine is adamant that they are unable to do this.

Thanks again and I hope your husbands cycle end soon also!

Darren Hartley

Fri, 24/12/2021 - 10:57
Madz123
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Last seen: 9 months 3 days ago
Joined: 21/05/2021 - 10:47

Hiya,

i am afraid with GP you have to keep pestering or request a new one, I have my first cluster at 16 as was told I was being dramatic and to stop bothering the gp I finally couldn't cope anymore and got a new gp who had been fantastic but sadly they are not experts. You need to ask for a neurologist or a headaches specialist l. Many people don't understand this conditon and it will be be a fight which I know is not what you want to hear but all I can advise is keep fighting. Go to hospital if you require oxygen, keep making a fuss till someone helps you.

Thu, 20/01/2022 - 09:43
ElizabethK
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Last seen: 2 months 1 day ago
Joined: 26/02/2014 - 14:26

Hi Dazzler,
Have a look at www.ouchuk.org/basics as this sets out the treatment for CH.  Sumatriptan tablets will not abort an attack as they take too long to get into your system, you need the injections.  Yes, the injections can only be used 2 times a day so oxygen is used for any more than 2 attacks.  Both the injections and oxygen should start to bring the pain down within 10 minutes if not abort it.

Why don't you give the Advice Line a call and we can walk you through it all 0800 6696824

Liz

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