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Not quite sure what route to persue next.

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#1 Thu, 08/11/2018 - 15:54
Jenny_t
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Last seen: 1 month 5 days ago
Joined: 08/11/2018 - 15:06

Not quite sure what route to persue next.

Hi. 

Im a 20 year old teaching assistant who was diagnosed, by my doctor, with cluster headaches a year and about 3 months ago. 

Since then I’ve been given so many painkillers and medication to try, but none have worked. I’m currently on verapamil with minor if any improvement, and imigran sumatriptan injections, which I have only taken twice (Boxing Day last year and another a few moths ago) however I have such a bad reaction to them (Not being able to stand, severe sickness, having to be carried and the feeling of the worst hangover of the century) that I’m petrified to use them and would prefer to deal with the pain then take it. 

After about a 3 month time off from getting the attacks, that was recently ruined by it returning again Sunday night and have been recurring on average of 2 at least everyday since. And between each attack I am left with a screaming and incredibly painful migraine. And have unfortunately been unable to return to work since after suffering an attack at work Tuesday morning. 

I don’t quite know what to do next and was wondering if anyone could shine a light on what to do next. I haven’t been back to the doctors for a year as they don’t believe I need to see a specialist or neurologist, however if I don’t get seen by someone that understands cluster headaches I fear I won’t be able to carry on my job. 

Any suggestions are appreciated 

thank you 

Jennifer Tubbs

Fri, 09/11/2018 - 08:00
John S
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Last seen: 2 weeks 1 day ago
Joined: 26/02/2014 - 14:41

Hello Jenny,

i am am sorry to hear about your Clusters. In the first instance I would ring the Ouch helpline and talk your specific situation through with them. They are very experienced and will be able to advise on the most appropriate way forward.

You don’t say if you have seen a specific headache neurologist, they are an important step for most of us in confirming a diagnosis and the best medication to take. I am an episodic sufferer and my bouts are normally about 5 weeks.  As a consequence I have never taken verapamil for such relatively short periods but abortive medication. This has consisted of High Flow Ogygen and Sumatriptan Injenctions, both are common amongst sufferers although I note sumatriptan may not agree with you . Oxygen is by far the best abortive for me.

I know you you are new to all this and there is so much to get to grips with, but help is at hand to help you manage this horrible condition, please ring the helpline. ATB

John

Sun, 11/11/2018 - 11:51
Jenny_t
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Last seen: 1 month 5 days ago
Joined: 08/11/2018 - 15:06

Thank you very much for the replies and advice. It’s a lot more than I’ve had within the last 2 years.

I haven’t seen a neurologist as my dr felt that he could handle and advise the best solutions to it even when having an attack in the dr surgery and being given tramadol to try and help with the pain. Which had a very negative effect on me and made me violently ill. From what I’ve read I am also an episodic sufferer, which is difficult to explain to my work. As it’s not all the time 

I have had the injections, which take the pain away to begin with, but then I’ve got to rely on someone to carry me as I’m not able to move on my own. But I’ve heard about oxygen and it sounds like the next road to take. 

i really appreciate you message. It’s teally nice to speak to someone who is going through exactly the same, rather than the constant expectation of I’m making it up from people that don’t suffer from it. 

Jenny

Jennifer Tubbs

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