New sufferer? Looking for advice on how to get prescribed meds
New sufferer? Looking for advice on how to get prescribed meds
Hi. I am Sean and my wife is J. Will try and give brief background….sorry if it is not brief :).
Sat 5th May - white water rafting at the Lee Valley Park. Good fun for me, but J fell in, did not hit head but it was a shock and she was pulled back into raft quite forcefully at around 2.30pm. Immediately had a severe headache, pain excruciating and was distressed. Checked out by the centre and after half an hour was calmer but still had headache. Cup of hot chocolate and we were home with painkillers bought on the way by 4.00pm. 8pm J had an acute headache that reads like CH - teary, flushed, shouting with the pain of it, the light hurt. We could have gone to A&E but called 111. They said they would send a non-emergency ambulance. It arrived at 10.15pm by then the worst had passed but they took her to be checked out at the 24 hour walk in. We left 4 hours later with some codrydamol which helped her sleep.
Sun 6th May - tried to go for lunch, J was shaky but okay until had to run for the train. As soon as we sat down J was in tears holding her head. We had to get off at the next stop. J was incapacitated and crumpled on the platform. This was 2.15pm. Laid there for 10 minutes. Platform staff got a wheelchair and we managed to get a taxi home from outside the station (couldn’t face 4 hours at hospital again). Very severe episode. Lying down in a dark bedroom seems to help and took painkillers, slept fitfully.
Mon 7th May - About 10 minutes after getting up at 8.30am another acute episode, crumpled on the sofa. Worried there may be more to it we called 999 and were quickly taken to Whipps Cross where they have been excellent and ran tests and scans to rule things out e.g. CT scan, lumbar puncture. During the test a consultant said the symptoms to him presented as Cluster Headaches given the pain levels described.
Tues 7th May - kept overnight and tests for ‘really bad things’ come back negative (not saying CH isn’t but you know what I mean - bleed on the brain etc). No acute attack whilst in hospital and discharged today with some codeine and paracetamol. The discharge sheet refers to symptoms as ‘Headache/Migraine’. Now home and wife in bed trying not to take tablets to not become dependent on them.
The Patient - J is 45 and an ex smoker of some 6 years (if relevant). She had severe headaches in her 20s for a year or so - but nothing like these, pain wise. She is otherwise healthy - last night was her first ever overnight stay in a hospital.
Advice Please - Having seen how awful my wife is if this hits her, I asked the consultant today about if the sheet should refer to CH, to maybe help us with our GP or for a referral to BUPA (if relevant and if covered) and about more specific prescribed meds I have now read about. She said one ‘episode’ was not enough for a diagnosis and if it reoccurred then see our GP or get back to A&E. If it happens I can’t see us calmly phoning the GP up, J will be screaming for an ambulance again!
We may be very very lucky and this was a one off, but what if it isn’t, as unfortunately seems more likely? How do we go about getting the meds? Do we see the GP and angle for a private referral, and then try and check the consultants on the BUPA list for one familiar with CH?(Boomshalaka seemed to get a good one). I would have loved to have left hospital with at least some nasal spray to help give her some comfort, for example. Any advice gratefully received. I have said to J she should call the Helpline.
Thanks, Sean & J.
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I just typed a long reply and then managed to lose it by hitting the wrong key! Grrrr.
If your wife has another attack, then go back to A&E. When your wife is able to, go back to the GP anyway and ask for referral to Dr Anish Bahra either at Whipps Cross Hospital or at the National Hospital for Neurology and Neurosurgery. She is well versed in the diagnosis and treatment of cluster headache. Try and get oxygen from the GP, download the Home oxygen order form Part A from our downloads section, its part completed ready for a CH patient. All the GP has to do is complete your wife's details and the surgery details. The surgery then fax the form off to the oxygen company and they then phone you direct to arrange delivery. Also ask for the Imigran injections.
Your last line is the best piece of advice, call the helpline. It's a 24 hour answerphone service, leave your name and number and calls are returned between 10.00 am and 2.00 pm, or at a time to suit you [please state in your message.] All our volunteers are either sufferers or supporters of sufferers and will understand what your wife is going through. MAKE that call. 01646 651979.
Just shout if you have more questions or queries.
Thank you Val great to get some advice, and a specific name at Whipps Cross. Jo was discharged without any clue what to do next, and was quite worried to leave. It was only when I went in and asked before we left that we got a bit of guidance (too ealry to diagnose etc). I'm worried to go in to work tomorrow and leave her in the house (I stayed home today) but my folks can visit, so that reassures me. I will ask J to call the Helpline in the morning and have a chat.
(PS I lost my first post too - then did what I should always do with a long post, but usuaully don't, typed into a word proramme and pasted in...)
Sean, good avice from Val. Anish is a good friend of OUCH. She will no doubt help you out.
Chairman OUCH UK
I've had to dash back from work as J has had another acute attack. Have called the helpline. If we go back to A&E at Whipps Cross is there a way to approach things, to not just sit in the system for 4 hours again?
Sean, you will be contacted within the next few minutes.
We are 14 in the queue to check in at Whipss A+E....chronic pain still
Now on oxygen and given high dose aspirin and anti naseau. Longest acute episode of them all so far.
Can we get a referral to Anish Bahra from Whipps Cross A+E. Or do we need to leave here and get to a GP and be referred back here?! Sorry for all the questions is a lot to take in. Early days yet, I assume people learn to deal with it and make the best of it.
At A&E if you get fobbed off having to sit in the waiting area lie on the carpet making a fuss they quickly move you to a cubicle where you get seen quicker.
After going to A&E in distress with a very bad cluster ages ago found they cant do anything to help other than offer oxygen and painkillers [which are no good]. Had been hoping at the time they would sedate me but they do not do this in the UK.
Oxygen and pills is all we've had no triptan of any sort. Just want to get out of here and get a referral.
Sean, did you talk to our helpline?
Did the hospital say what they thought the problem was?
I would suggest you go to the GP in the morning and ask for the injections AND for a referral to Dr Bahra at Whipps Cross, if you go private then you should get a faster tracked appointment than with the NHS.
Keep us posted if you can.
Yes we got a call from the Helpline thanks and then I had great support through the day on the phone and by text from a volunteer.
UPDATE on A&E (bit long sorry but useful as a record for me)
A&E was is frustrating. They were fantastic running all the tests Monday/Tuesday to rule out a bleed on the brain & other matters, but we could not get sumatriptan for love nor money. We were there from midday to 11pm. We were admitted quite quickly as J was in obvious distress with a severe CH. Managed to get her on oxygen but the mask had one of the valves off so was ‘open’. The OUCH volunteer said this was wrong but they would not close it and J was nervous to do different than what the experts said (I wanted her to close the hole herself). Given some aspirin also. Time passed, as it can on A&E…I was asking for a sumatriptan injection throughout.
One Doctor did then prescribe sumatriptan. After 45 minutes no sign despite my chasing it up. Then we were advised Prof Harris “who wrote the hospitals guidelines on headaches” had over-ruled and we eventually got chlorpromazine on a drip and were moved from AUU. This was around 4.30pm and I asked to speak to Proff Harris as I said J was only distressed because of the pain, and if we could have triptans rather than anti-panic it would be better. A senior doctor said sumatriptan was only really for right at the onset and chlorpromazine was better but they ‘weren’t sure why it just was in their experience’. I wanted something so took the drip. I wondered if they just did not have access to the sumatriptan.
Around 5.30pm moved to CDU for observation. J worn out and mostly sleeping so I was happy to let her. Drip ran out and given some regulat painkiller tablets around 6.30pm. Was making the point to staff that by being in hospital we would miss our 7.30pm GP appointment, and would we be able to get a referral to Anish Bahra and a prescription for triptan injections from the hospital. 10pm a Dr came. No referral possible he said had to be done by GP. Tried to discharge us with some chlorpromazine. Prof Harris had been supposed to speak to me but had not been able to. I said we would not leave until I had a prescription for injection sumatriptan. I said it was in their interests, as we were using precious resources of A&E each time we came back, and if they gave something to manage the severe CH it would be better for everyone. The best I could do was get a prescription for some sumatriptan tablets and anti nausea stemetil. The hospital could not fulfil it, but I managed to find an open pharmacy and buy the meds. The Dr had not put a dosage on the prescription, so all we have is 15 x 50mg sumatriptan tablets and 15 x stemetil.
J in bed still suffering :(. I have said she can take regular pain relief on top of the sumatriptan (whilst being aware of doses, and trying not to take if possible to avoid dependence/painkiller headaches). I believe this is okay.
Trying to see our GP today but they are fairly useless so as a back up I have us booked in for another out of hours appointment at 8.30pm. I will take an oxygen form and try and get a referral to Dr Bahra and a prescription. Fingers crossed.
Thanks Val. They have referred to the condition as CH but we have no discharge sheet to show the GP tonight that mentions it. If we get a private referral to Dr Bahra, would subsequent prescriptions still be met by the NHS? (More a question for BUPA I suppose...).
Sean, over-the-counter pain killers are pretty useless for CH,even morphine won't touch it. The sumatriptan tablets are also a poor choice - they take far too long to be absorbed into the system,and won't abort an attack.
Don't worry about a private referral,all prescriptions are paid for at the normal rate, no matter who prescribes.
Get that referral to Dr Anish Bahra,she is top class.I'm sure she will have a few words of advice for the A&E staff.
Here's hoping J gets some meaningful remission.
Thanks Colin, and for all your support and advice over the telephone. Sean