this is my 1st post on this excellent site. i have suffered cluster headaches for many years,i am a 47yrs old woman,up until a few years ago my gp diagosed me with migraines but after i started using the internet and reading info from this site i realised my gp had misdiagnosed. He now has put imitrex injections on repeat prescription. My bouts up till now have been between 15months to 2 yrs apart lasting about 6 weeks with a 4hour headache every few days,
However something has changed this time round they started as usual 3 months ago but after 6 weeks instead of dissapearing i have had 1 every single night and a couple early in day when i call for a repeat precription the secretaries are horrible to me saying things like ' you've just last week had a prescription' in there patronising way.I have purchased most of the injections from abroad so have not really had many injections from my doctor.
Does anyone on this forum know why after all these years my headaches being of the same pattern have changed so much this time round and any advise on what i can ask my gp as he doesnt really know much about cluster headaches
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As time goes on some people find that their headache pattern changes for no apparent reason, it would be a good idea for you to speak to a neurologist who specialises in headache who will be able to help you in many ways.
But first please phone the helpline 01646 651979 and someone will get back to you with lots of good advice and will be able to help you with your questions. Oh and keep going back to the docs for the injections and ignore the comments as the BNF (Doctors prescribing bible) states the first line of treatment for CH is sumatriptan injections!
Oh Julie, I'm sorry to read this...... AND it brings back memories for me... Only last year I was in exactly the same position, even having one receptionist at the GPs tell me... 'Well they are very expensive medicines you know!'
you need to phone the help line julie.... They will advise you to see a neurologist, which is you right, they will advice for you to see one that they know are experts, which you can do under the choose and book scheme..... And the consultant will then organise oxygen, and meds... Which your GP. Will need to prescribe. Good luck Julie.
i have recently posted a query here too re the cost of prescriptions, which I'm finding a lot of money (every 10 days) Goodness knows how much your paying abroad? I know one time when I was in Spain visiting my sister I needed to buy sumatriptan from the chemist and I think it was £30 for 2!!!!
Julie, have you used O2? Its extremely effective. The other "treatment" to consider is to take a sumatriptan tablet before going to sleep. This will be in the system protecting you when you have your night time attack. Your GP should love it 'cos they are cheap. Please bear in mind they do count against your daily dose of triptans.
Chairman OUCH UK
Thanks for the replies . Yes I will call the helpline number tomorrow . buying them from Abroad is expensive esp with delivery then customs charges . I have done this the last 3 bouts but as I said they were days apart so I didn't need lots . What the injections did do is make me determined never to have another headache again I feel more scared now about haveing a headache than before the injections if that makes sense. They are a miracle for me. But this time round is so different I've had 30 nights without a break from them and I've never had to buy so many until now My gp prescribed me the tablet but it didn't work I also tried taking 1 before going to bed but it didn't stop the headache. The thing is I would rather have all these headaches knowing they be gone in 5 mins after the injection than having even one 4-5 hour headache without them as I did for years . I just prey they dissapear like they normally would in the past .Thanks again. Julie.
Oh sorry mike just realised u asked about oxygen . No I haven't tried any , a coincidence though I did mention it to my mam yesterday about oxygen and she said not to if there's better alternatives because it messes with your breathing and it's never the same however I didn't ask why she thought this I will ask tomorrow may be an old wives tale.
Julie, if you dont have COPD or Emphysema, short burst Oxygen therapy, particularly Demand Valve rather than High Flow Oxygen is extremely safe, far, far safer than any prescribed medications. It is listed in The BNF 220.127.116.11. as a front line treament.
Chairman OUCH UK
Thanks mike I will tell my gp I've booked an appointment for tomorrow . Just my luck I finally found something to take all the pain away in minutes then a step back going from 15m-2yr apart with about 15 headaches each. which has always had the same pattern then to this . I don't know if its bad luck or could it be because I have these injections now . I am not sure I want to know the answer
We've discussed whether the medications have a bad effect on clusters a few times over the years. Trouble is, the headache patterns change with a lot of sufferers anyway.
I don't know if any research has been done on it, but I'm being sent back to Queens Square because some Neurologist told my doctor sumatriptan makes cluster headaches worse.
Neurologist told my doctor sumatriptan makes cluster headaches worse.
Some say it does, some say it gives rebounds. These are usually GP's as an excuse not to prescribe an expensive treament. The truth is nobody has has proven it either way. Personally when I have an attack I just want it too stop and subcut injections do the job. I doubt that we will ever get a definitive answer. How can it ever be proven?
Chairman OUCH UK
And unfortunately for my Doctors' surgery, as is my right to choose and book, I chose Queen's Square instead.
I'm fairly certain I know what their recommendation will be.
(If the Surgery has actually made the referral.)
Interesting. I've been wondering whether the treatments (Sumatriptan, Oxygen) have "changed" the cluster headaches or whether this was happening naturally over time.
On the one hand, the episodes now feel more disruptive (occuring in the day more and in a less predictable manner). On the other hand, I can't imagine being without the medication at the point of an attack, now.
Good luck, Julie. You shouldn't be having to buy your medication online (I'm assuming you are UK-based) and a pre-payment certificate might make the prescriptions managable.
I think 2014 is a bad year for clusters, I have had them much more frequent than each of prev 10 years. My hits were normaly late afternoon into evening. Now get hit on/off all day long getting hard to plan anything were as prev I knew I would be ok during the morning and often early afternoon.
anyone else got them worse this year or more day time hits.
"I think 2014 is a bad year for clusters."
Any year is a bad year with CH,but I know where you're coming from,David. Extremes of pressure must have an impact on a vascular disease (that's if CH is vascular),and boy,have we had some serious low pressure systems this year.A clinical trial using a decompression chamber would be rather interesting