OUCH(UK) Organisation for the Understanding of Cluster Headache

Donate

Advice Line

0800 6696 824

Cluster - A constant OUCH!

5 posts / 0 new
Last post
#1 Sun, 03/05/2015 - 14:04
joanna88
Offline
Last seen: 9 years 2 months ago
Joined: 03/05/2015 - 13:04

Cluster - A constant OUCH!

Hello, I've suffered from Cluster Headaches for 10 years since I was 16. I have Episodic Cluster Headaches - this is my first cluster in three years. I usually go for 2/3 years with a relatively normal life, then bam! Clusters arrive, and I'm bedridden for the foreseeable future. Over the years, I've been pulled from pillar to post with different medication, but always seem to be left alone to "manage the pain". No one seems to quite understand that it is impossible to "manage the pain". The only thing that I can do is lay in bed in the same position, putting pressure on the cluster side of my head, block out any light and lie in aboluste agony for endless hours. There is no way to manage the pain - just suffer until finally.... and I mean finally... the cluster comes to an end. Many doctors have seen me, told me it's stress related, given me medication and sent me on my way. Until my last cluster three years ago, when I ended up in A&E after having a severe attack for over 48 hours. Finally, someone took notice and I was referred to a neurologist. I was diagnosed with Cluster Headaches and prescribed Propanolol for prevention and steroids for when I'm under Cluster attack. Two weeks ago, I was once again greeted by the devil of Cluster and went straight to the doctors to be put on the steroids. I was taking 75mg of steroids, which lessened everyday. I was out of it, feeling pretty drugged up, but miraculously, the steroids relieved me from the clusters. I've never been so happy! I found a cure; a way to combat the Clusters! Sadly, as the dosage lessened, the Cluster became stronger than the steroids and I was at the Clusters mercy once again. Back to the doctors I went to be told that the steroids are too dangerous for me to be on, and to stick to medicating myself of Co-Codomal to lessen the intensity of the Clusters. This left me paralysed in pain for days. I'm back to where I originally started - Doctors telling me that there is nothing they can do. There is no more medication they can give me. Their last hope is Amitriptyline - some sort of anti-depressant that effects nerves in the brain and a regular dose of Codine to lessen the impact. (Apparently after years taking Co-Codomal, it's not the right treatment as it has paracetmol in it). I'm being referred to a neurologist again with the intention of a brain scan. I always thought I was the only one who had Clusters, because no one I have ever met or spoken to has had them before. My family and my friends sympathise with me, but I don't think they actually understand. After weeks being in bed, I think they expect me to just "snap out of it" and "get on" with my life. Work are the same - they seem understanding, but I think in the back of their heads, they are thinking - "it's just a headache, get over it!" To find this website and people who understand and experience Clusters is somewhat miraculous. If you've managed to read the essay I've written thank you, and any advice, support, sharing of Clusterness, or general chat is much appreciated Smile Joanna

Sun, 03/05/2015 - 14:39
Harrietjt
Harrietjt's picture
Offline
Last seen: 6 years 8 months ago
Joined: 22/10/2014 - 12:47

Hello Joanna,

How awful for you. And yes it is fab to discover a community who understand. And not only do they understand the condition, but they also understand all the misunderstanding you face out here in the world!

The fact that the dr has told you to treat attacks with co-codamol proves that they have no idea. CH does not respond to analgesics (pain killers).

You need to be under a neurologist who is an expert in CH for sure. If you call the OUCH helpline and leave a message you will get a call back. OUCH will be able to help you with where the nearest specialist is to where you live and you can insist on being referred to them.

Also, you don't mention oxygen or Triptans? The guidelines the GPs are supposed to work to say they should prescribe high flow oxygen and Triptan nasal sprays or injections for the acute treatment of Cluster attacks.

Best wishes,

Harriet.

Sun, 03/05/2015 - 15:10
joanna88
Offline
Last seen: 9 years 2 months ago
Joined: 03/05/2015 - 13:04

Hi Harriet, thanks for your reply. It quite amazes me to find such hope through this website. Each time I visit the doctors, I leave with a sense of despair and hopelessness as I'm continuously told there is nothing to prevent, cure or alievate the pain. I just have to "manage" it. Over the years, I've had the nasal spray and the injection. They never worked for me :/ This is the first cluster where I've had a plan as such i.e. steroids and they worked - but a cluster lasts for 4-6 weeks and it's too dangerous to be on for more than a week. So really the steroids are no good for long term. I only heard about the oxygen through this site - I didn't even know it was an option. I'm being referred to a neurologist again. I'm hoping to get on the oxygen this way. I just want a way to combat this. I'm absolutely disgusted about co-codomal. I've been taking it for the clusters since I was 16. It wrecks my body and messes me up and to find out that it has no effect is heart breaking. My biggest wish is that one day I can say that I control the Cluster, and it doesn't control me. After ten years and knowing its a lifelong curse, I can't see it ever happening but you've given me hope that I can try. Thank you for your advice - I'll get in touch with OUCH. Joanna

Sun, 03/05/2015 - 15:45
ElizabethK
Offline
Last seen: 6 days 12 hours ago
Joined: 26/02/2014 - 14:26

Hi Joanna,

Sorry to hear about what you have been going through, I can only echo what Harriet has said and suggest you call the Helpline 01646 651979. Not only will you get some great advice you will be able to talk to a fellow sufferer and find a Neurologist who is a Headache Specialist that is nearest to you!

take care

Liz

Sun, 03/05/2015 - 20:23
Harrietjt
Harrietjt's picture
Offline
Last seen: 6 years 8 months ago
Joined: 22/10/2014 - 12:47

Hi Joanna 

You are not alone in that horrendous experience of being left hopeless and despairing by people who don't have a clue, or want to, and ought to know better. You will see on the forum that this is an all too common experience, but thank goodness, OUCH will help you cut through all of that.

Totally get why you are unhappy about the Co codamol nonsense, it is appalling. And I see you say they now want you on Codeine. That is still an analgesic so it makes no sense either, I would love to know on what basis they are deciding this. What is so bloody infuriating is that we have information technology and NICE guidelines, what is wrong with everyone not simply looking it up and following the instructions. 

The most important question about the neurologist you are now being referred to is, are they a headache specialist? If not you may well be wasting your time because there are endless tales of Clusterheads seeing ordinary neurologists and recieving wrong diagnoses and inadequate treatment for years. The situation really does require a specialist and don't feel bad about insisting on being referred to one. 

The link below takes you to the NICE guidance that GPs should be following, including prescribing the oxygen. When we had trouble with our GP over my husbands CCH we contacted the Practise Manager and waved the guidelines around. Recently I have helped a freind with CCH to do exactly the same with their GP. It worked both times after a bit of very polite firmness. Also, re the oxygen, if you look on the OUCH website under downloads about oxygen you will find all you and your GP need.

https://www.nice.org.uk/guidance/cg150/resources/guidance-headaches-pdf

It is shocking how CHers have to be their own experts and robustly fight their corner to be taken seriously. You are now in good and understanding company and you will find the helpline really good, so hang on in there! 

Harriet.

 

Login to add comments

Share This

© OUCH(uk) 2024 | email: info@ouchuk.org
Registered Charity No. 1091919 | Registered in England Company No. 04339368