OUCH(UK) Organisation for the Understanding of Cluster Headache


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Recently diagnosed long-term sufferer

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#1 Mon, 02/07/2018 - 15:21
Last seen: 3 years 10 months ago
Joined: 02/07/2018 - 13:44

Recently diagnosed long-term sufferer

Hi all

My name is Chris, I'm 44 and have been suffering from terrible headaches since 1998. I had been to the doctors on numerous occassions and was told it was migraines, stress/tension headaches, had CT scans etc etc before eventually being dismissed with "We can't find a root cause so you're just a chronic headache sufferer and all we can do is treat the pain"

As a result I stopped going to the doctors for it and just had to dig in and deal with it when I had a really bad bout. I have noticed over the last few years that the gap between bouts has decreased and the intensity and length have increased so I went back to the doctors a couple of weeks ago as I was entering my third month of headaches with virtually no relief . My doctor prescribed me nasal Sumatriptan and referred me to a neurologist - I went through the private healthcare of my work and had an appointment with Dr Alok Tyagi at Nuffield Hospital in Glasgow on Friday evening.

He has diagnosed CH although wants to do an MRI to rule out anything structural going on. He has asked me to use the rest of the nasal spray but if I still find it ineffective to move on to injections and he is organising oxygen for me. He is also looking to put me on Verapamil although this is complicated by the fact I take Amlodipine for high BP.

Having read through some of your stories on here since CH was first mentioned to me I now feel like I have had it relatively easy compared to some of you - I know how hard it has been to cope with what I've gone through so hats of to you all!

As I had suffered for 20 years with no idea what was causing my pain to say it was an emotional experience when it was finally given a name seems insufficient - there were tears flowing - and this time not from an attack! Knowing I'm not alone has already been a great help as I've always felt that when I've had to cancel going out or been off work for a period of time with a "headache" people just don't get it.

Anyway I just wanted to say hi to everyone.


Thu, 05/07/2018 - 10:23
Last seen: 1 year 3 months ago
Joined: 27/05/2017 - 17:40

I too had to go private. It was a revelation, my neuro also recommended an MRI and wrote to my GP to use sumatriptan injections whoch work miracles (nasal sprays do not work when your nose runs during the attack). My GP organised the MRI on the NHS as it was too expensive to go private, but the money I spent on the private consultation was well worth it.

Incidentally, I have had to pay for urgent necessary treatment privately on three occasions. In one I had an infected middle ear cavity due to an eardrum perforation and the GP made an URGENT referral on "Choose & Book" in August which was deemed to be December at the earliest, on explaining the problem the c&b clerk decided it was OK to wait 4 months (Practicing medicine without a licence which would have resulted in a prison sentance in most developed countries) so I had to go private. When I tried to cancel the December appointmen as I had had treatment privately in August, I was informed I could not cancel as it was an "urgent" appointment which could only be cancelled by the referring doctor!!!!  As a medical physics consultant I have researched and taught in many countries, I have to say that of all the healthcare sustems in the developed world (except the USA) our NHS is the worst, and not because of money but the way it is badly run.

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