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Medical Understanding of CH (or lack thereof)

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#1 Sat, 19/11/2016 - 21:39
Davethesmeghead
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Last seen: 4 years 7 months ago
Joined: 19/11/2016 - 18:42

Medical Understanding of CH (or lack thereof)

Had a significant CH attack last night and then found out that I had run out of subcutaneous sumatriptan - big whoops! Had to tough it out and it was about an 8 on the KIP scale - bad night. Tried through the 111 service to get a script and that was all sorts of ridiculous (they couldn't sort it as they couldn't find my NHS number despite me living and paying taxes here since birth) so ended up at A&E to try to get a script. The triage nurse begins her examination and I explain about my diagnosis (in the Neuro dept of the same hospital) of ECH and her answer was "so you've had a headache then". I told her to either speak to someone in Neuro or someone an awful lot more senior in the department who understands what they are. So its also been a long day trying to get the meds, but now I have them I am hopeful of a better night tonight (or at least not so painful for as long).
I am thinking of asking my GP for a letter that I can carry that explains ECH so that I don't have to go through all the explanations and makes other medical staff fully aprised of the chronic nature of the pain we have to endure.
Has anyone else had to do something similar and what sort of results have you had?

Sun, 20/11/2016 - 09:32
Val
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Last seen: 13 hours 37 min ago
Joined: 21/03/2012 - 15:16

Hi Dave

You could use your infocard which was sent to you when you joined OUCH, that has details on the back of it which explains cluster headache.  Also you could refer staff to the NICE headache treatment pathway for cluster headache, here:  http://pathways.nice.org.uk/pathways/headaches#path=view%3A/pathways/hea...  - [forgive long link, I don't know how to minimise it to go under a one word heading!].  You could print that off or keep the page bookmarked on your computer, so you can print off as needed. 

Others will no doubt comment on their personal experiences at A&E.  Mine was also a nurse who didn't have a clue, said I needed to change my diet and not eat chocolate, came towards me with a syringe didn't tell me what it was, plunged the injection into my leg before I could ask her what it was.  It was morphine, and unfortunately that stuff makes me vomit.  I was telling her this but couldn't finish the sentence as I vomited, all over her.  The doctor then bustled in and told her she should have told me what she was giving me and then gave the nurse a short overview of CH, which was fairly accurate, but that didn't extend to the correct treatment!  By this time I was nodding off under the effects of the injection.  I woke later to the same 'clever' nurse, saying 'Headache gone?'  and I said, 'NO!'.  Indeed it had not,I  was discharged with a script for tramadol and the attack did not clear until two hours later following a risky further injection of sumatriptan  Do NOT do this if you are reading this, I did it only out of sheer desperation.  You should only have two injections in 24 hours and not use two for the same attack!  At a later date I did see to it that CH information was sent to the department concerned, and this was in the days before OUCH had the info card.

Val

Sun, 20/11/2016 - 09:57
MissKittyB
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Last seen: 6 years 10 months ago
Joined: 29/03/2015 - 10:59

Oh this sounds horrific.Shok  I've never gone down the A&E route (have wanted to on occasion) mainly because I couldnt drive the 10 miles to the hospital, try to find somewhere to park and then wait at least 4 hours to be seen. 

Hope you have a better day today.

MissKittyB.

Tue, 20/12/2016 - 05:00
Lisa Butler
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Last seen: 6 years 11 months ago
Joined: 30/04/2014 - 11:14

Hi Dave

I had a similar experience to Val in my local A&E with everyone ignorant as what CHs are, or how to treat them. Although I knew morphine would be useless, I was powerless to convey this to them whilst in full attack. They were shocked to say the least that their high dose morphine did absolutely nothing. Once I was in a fit state to communicate, they had to make a special request to the pharmacy for Sumatriptan and I waited hours and had another attack before it arrived. Only with the jab ready in my hand could I then access the CT department again for a scan, since that process always triggers an attack and earlier on, about 5 CT personnel had had to hold me onto their scanning table when I had an attack whilst in the scanner.   Interestingly, I have a 3 page letter from my prev neuro Juana Marin explaining what my condition is, the effects and how to treat it and I never leave home without it in my handbag. Sadly on arrival at A&E, I was not in a fit state to direct staff to it, whilst in attack. After my visit, I wrote and requested that all staff in A&E were briefed into our condition since there are about 15 people in Harrow who suffer from it. They agreed, but would not undertake to keep a stock of Sumatriptan in the department. In an era of shared computerised medical records, I am at a loss as to why when feeding in my name, their screens don't automatically bring up my major conditions. I have since purchased CH medical wrist bands from OUCH to ensure I have an obvious alert if I go out.  

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