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New here, need advice please

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#1 Thu, 24/03/2022 - 14:03
Last seen: 2 years 1 month ago
Joined: 24/03/2022 - 13:43

New here, need advice please


so I have all the symptoms of a cluster headache, blocked nose ( left side) , red eye, dropping of the eye lid and the most intense pain you can think of. 

at first I went to a eye center as i thought the issue was with my eye.. but they checked it out and said no your eye is fine but it sounds like you may have cluster headaches...and I should book a appointment with a my GP. 

So I did and went today and explained to him my symptoms and the fact I would rather kill myself then live with theses pains and he concurred that it sounds like cluster headaches.

I informed him i am a smoke a lot 20-30 a day ( has been on the high end recently due to the pain and me not knowing what was casuing the pain) and also I am HGV driver.  

Now he has given me 6 tablets of sumatriptan 50mg and when i asked about getting a ref to see a nero he dismissed it and said  " there are no drugs he can give you that i cant" 

When i read the leflet that come with the sumatriptan it clearly states ' Not to be taken if heavy smoker' and not to drive. 

but why would the doctor give me them knwoing A; im a heavy smoker and B: say I would be fine to carrying on driving HGV's if i take them. 

I will be honest I feel more confused and stressed now then I did before going to the doctors. 

I have changed doctors surgury and plan to see another doctor tomorrow in the help he can be some more help. should I push i need to see a nero or just ask for another treatment? from what I have heard the tablets do not offer much help within the first 30 mins of a attack and 30 mins is far to long.

please forgive me if this is in the wrong place but I am new here so I will learn.  

Thank you. 

Thu, 24/03/2022 - 16:00
Last seen: 1 month 20 hours ago
Joined: 26/02/2014 - 17:02

Hi Griff and welcome. Sorry you need to be here.

I've just returned to the forum after letting my membership lapse, so you'll want any advice I offer verified by volunteers here.

A Neurologist specialising in Cluster Headaches will probably have you keep a headache diary, so they can offer treatment based on your needs. Also preventative medications (e.g. verapamil) are often considered for longer ECH bouts, and the website your doctor would use to look up CH would state "do not offer oral medication." High-flow oxygen therapy is another popular treatment, so there's a few reasons why a specialist would offer you more than that GP.

In my opinion: Push for a referral.


Sat, 26/03/2022 - 09:27
Last seen: 2 years 1 month ago
Joined: 24/03/2022 - 13:43

Good Moring, 

Thanks for getting back to me, thats what i thought and I have changed doctors. 

I will be seeing my new doctor on monday hopfully but this time i will take some documents and infomation about cluster headache's 

I had a attack last night at 10pm and took one sumatriptan 50mg tablet and in 15 mins the pain started to go away...it took a little longer for the pressure to ease. 

I am better armed this time so fingers crossed my new doctor will know how to treat me properly and give me the advice i need.  

Sat, 26/03/2022 - 14:26
Last seen: 1 month 20 hours ago
Joined: 26/02/2014 - 17:02

In his BNF (Doctor's handbook) Cluster headaches are section

On his computer headache tree, CH is listed under TAC (Trigeminal Autonomic Cephalalgias)

You have the right to 'choose and book' (Ask for a specific Neurologist)

I asked for our Prof. Goadsby (wishful thinking) The Neurologist I saw instead was awesome.

(I don't know if I'm allowed to name her on the forum)

And, as before, I've been out of the loop for a few years, so some of that info may be out-dated.

Good luck.

Tue, 29/03/2022 - 08:51 (Reply to #4)
Last seen: 1 year 2 months ago
Joined: 27/09/2019 - 02:38

Hello mate, I was diagnosed chronic cluster headache sufferer and just wanted to say don't take no for an answer and you'll get good advice on here.

best of luck and remember it won't kill you, it's just pain. 


ps. I've named my Headaches after my deceased mums partner, whom I didn't get on with. It helps sometimes when I'm under attack to kind of fight back by arguing with him (more like I shout at him)

hope this helps


Tue, 29/03/2022 - 09:38
Last seen: 2 years 1 month ago
Joined: 24/03/2022 - 13:43

Good morning, 


just a update, another doctor has agreed that it sounds like I have cluster headaches and has given me nasal sprays and referred me to a Nero specialist. 

but given that I am a hgv driver she has issued me a sick note for two weeks till we can get it under control. 

thank you all for your messages. 

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