Newly diagnosed with CH

Hi and welcome to the forum.

Many of us struggle to get injectable sumatriptan prescribed.
The needles are a much better delivery system, nasal sprays rarely help anywhere near soon enough.

But it depends on whether you're a fan of extreme pain, it's your choice.

hi mike, and welcome, i had the nose spray but it didnt work to well as my nose runns lots in an attack, the injections are so much quicker and you dont get that taste down the back of your throte, yes thay sting a bit but no where as bad as a non workin nose spray! o2 works realy well with most can abort a mild attack well, only 2 injections in 24hours one injection lasts for me aruond 5hours or so, it good you have a cluster buddy near buy support gos both ways,  if  ether of you have any questions just ask, there will be members going thro or bin thro the same as you,

if you or any members want to chat put a post on the humor other matters bit of the fourm, a bit of banter can be fun,

all the best d

Thanks for the welcome GP has said he'd give the injections so don't have an issue there it was my choice so will see how I get on with the spray get them later today but from what people say it's not much use so may have to just suck it up lol and get over the fear of needles as not a fan of the CH pain either 

Hi Mike,

Just want to say welcome.......and can't believe two people with CH actually live right beside each other. That should be a great help, someone on your doorstep who knows exactly and won't ask you if you've tried paracetamol!

Harriet (married to a CCHer)

Hi Harriet,

I was my neighbour who said 3 years ago that he though i was having CH but GP said no at the time but now i have a semi diagnoses dependant on Neurologist confirmation, as for the Paracetamol i've done all the over the counter meds LOL to try and bring relief but no chance, all i can say roll on 11:30 when i can get meds, and hope the nuerologist appointment arrives quickly, but can seem me going back to the gp for needles :~

Mike, do you know who your GP has referred you to?  If you call the Helpline 01646 651979 we can point you in the direction of your nearest Neurologist who is a Headache Specilaist!

Hi Elizabeth, no i'm not sure who i've been referred to but i spoken to a few CH sufferers in Norwich and they seem to think it will be Dr Damien at the university hospital norfolk and norwich but not sure.

Hi Mike

I'm hoping you've spoken with the Helpline and received the best possible advice. If you haven't then my suggestion (and it is just a suggestion - best speak to OUCH officers) is that you consider the following:

1. Forget nasal spray - total waste of time if you have CH.
2. Go see Prof Peter Goadsby (refer to OUCH officers for details).

There is a possibility that you may end up on Subcutaneous Sumatriptan injections and high flow oxygen administered via a Demand Valve, which is the choice of many sufferers.

Welcome to OUCH, and as a good friend of mine once said.....

If you reach the end of your rope, tie a knot in it and hang on.

Help is at hand my friend.

Sean

Hi Sean

I have became a member of OUCH and have got a lot of info from them.

I'm now on high flow oxygen which is a great help and aborts an attack along with the nasal sprays. 

I understand that injections will be a strong possablity in the future, but nasal and O2 working ok at present my clusters seem to relatively short 20-30 mins on average which i'm thankful for as my neighbour is a CCHead and get them much longer than me. he also give me alot of support.

my rope has got afew knots in now makes it easier to hold on and start climbing up from the despare you feel during a CH attack.

keep well Sean and Pain Free

Mike

Hi Mike

I'm glad you found us through fb and got your oxygen sorted out in the end. I suspect your GP is by now well clued up on cluster headache!  I must say that when I first found OUCH, quite a few years ago now, I was lucky to have a GP who came to the website and learned all he could on the subject.  He kept up to date with treatments and has had great sympathy for me when I've been in cycle.  I also have a great dentist who is really keen to learn and encourages me to bring jnfo to put in his waiting room.  He always asks me about it when I go in and last time I went for a check up he was very excited to tell me all about an interview with a CH sufferer that he'd heard on the car radio on his way into work that day. He was cleaning my teeth at the time and he was so enthusiastic talking about it, I came out with the cleanest teeth in town!  

I hope having the oxygen has made a big difference for you. I always find during a cycle that it's like a comfort blanket.

Dorothy

Glad to hear you've been diagnosed so promptly, like many sufferers I spent 30 years or more being misdiagnosed and incorrectly prescribed all sorts of junk, methysergide, ergotamine, lithium, every OTC medication under the sun all to no effect. Ended up with an opiate addiction in the process, so my GP won't prescribe self administered injections, it's the same for anyone with an addiction history, even alcoholics. I use 2 x 120mg Verapamil daily as a preventive, have high flow Oxygen at home and use 2.5mg Zomig Rapimelts for acute attacks, they seem to hit the spot withing 10 minutes or so, marginally quicker than Oxygen and longer lasting. Like injections you can't take more than 2 in 24 hours but I rarely need to.

Good you have a fellow sufferer close at hand, that must be quite a rarity.  

Hi Ken,

I am flabbergasted to hear that self administered Triptans are refused on the basis of a previous opiate addiction. I thought Triptans were not addictive, but maybe I'm wrong.

Harriet

Hi Harriet

Yes it is a little disconcerting to be penalised in later life for something that happened decades ago. Especially as the addiction came about through being misdiagnosed by the same NHS that are providing my care now. I was getting no help in those days at all, I used to pass out with the pain regularly when I was a teenager. Became a more or less regular client at my local casualty department, when things got bad I used to call in and plead with them for a shot of morphine, nothing else would touch it in those days. Doctors didn't have a clue, I was even told it was psychosomatic and got referred to a psychiatrist, thought I was going crazy. 

So you developed a morphine addiction because the NHS used to give it to you when they were not able to recognise your medical condition.....and the same NHS now witholds a completely different treatment for a condition as serious as cluster.......now they have worked out what you sufferer from!

Do you know if this is actually standard policy, or is it individuals being over cautious?

H.

I don't know if it is standard NHS policy so perhaps it is cautiousness on my GP's part but this is the second general practice I've been with in the past 15 years that have denied me triptans in injection form. I have heard they are much faster acting than the oral version but I've never had the opportunity to try them out. Oxygen and Zomig together take care of the worst attacks so I'm not over concerned about it after all these years.

I should perhaps add that blame for my addiction doesn't rest solely with the NHS. As I said staff at the casualty department helped me out on several occasions but as my visits to them became more frequent they had no choice but to refuse me without someone writing a prescription. My GP at the time wouldn't do that so I had no choice but to seek alternative and not always legal sources. So I am to blame in some respects but I still think more could have been done for me at the time.  There was no investigative work done at all, they just kept feeding me meds for migraine which had no effect.

Thankfully we live in more enlightened times now.

K

So glad that you are coping with oxygen and Zomig. In which case the injections issue doesn't matter so much. But it is a concerning that if any ex addict is unfortunate enough to develop CH the treatment they need could be witheld. 

Just trying to visualise someone trying to mainline sumatriptan from the needle unit it comes in, which fires the needle out violently at the speed of light! Can't see it myself.....or what the purpose would conceivably be thought to be?

I wonder if this is yet another example of people skating over the surface of CH without really getting it.

All the best.

H.

I think they are applying the same mindset that applies to addicts in recovery who need to be careful not to develop a secondary or cross addiction to another sustance which is a common enough scenario eg for former heroin addicts using methodone. My addiction problems occurred 40 odd years ago so I don't honestly see how that should be an issue. Maybe they are just being over protective.

K