Hi there! I am Female 42yrs and have had chronic Clusters for the last 3 years. However, I thought they were migraines and had been overdosing with cocodamol and ibruprofen (4 of each) when I felt an attack coming on. I believed that the tablets were working after an hour because the pain would suddenly dissappear. I mentioned these 'migraines' to the doctors a few times and they would normally brush me off.
Eventually I did my own research and realised that they were cluster headaches and that the attacks last for an hour. (So the overdosing was pointless)
So last month I went to the drs with this info, got referred to a neurologist and have had a MRI which has come back clear.
The neurologist said they 'sound like cluster headaches' and prescribed prednisolone and verapamil, I had a wonderful 3 week break, pain free after taking the prednisolone then started the verapamil. The verapamil made me feel very ill, so I stopped taking them.
Yesterday I went back to the neurologist and told him this and he at first seemed sceptical that they made me feel ill and told me to try again with the verapamil. He also gave me a couple of sumatriptan injections. I got to the pharmacy and there was a message waiting for me telling me to go back upstairs to see him, which I did and he apologised as he had overlooked that I take betablockers, and they were possibly interacting, and that I mustn't take the verapamil. He said that this was quite a difficult one as he needs to find another preventative tablet that might work, and said he needed to write to my dr first.
He then mentioned oxygen, and I said "yes, Ive read about that, I would like to try it"
His answer was "well as you haven't been hospitalised, and tried oxygen. we don't know if it will work. Also, you are a smoker, you could blow yourself up!"
They were his actual words lol. But why mention it to me and then say no !!?? GGrr.
I said "by the time I get to the hospital and seen, it will be probably gone" his reply was to tell me to hang around at the hospital when I think I am due one. This is  impractical as I get them every other day in the evenings but at random times. Or sometimes waking me in the early hours. And various other reasons.
Anyway that is my story so far. It would be great to chat to some people who are in the same boat.

P.s Edit to add. I am expecting another attack tonight, and am a little nervous about injecting for the first time. Will it be ok to inject into the fat on my belly ?

You have a super support group which I'd encourage you to join. They can help with the issues of dealing with your health system.

I understand that you have the right, in your system, to by-pass local medical care/system and be referred directly to a headache speciality cllinic. OUCHUK can advise.
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Hi and welcome

You've found somewhere where we all understand CH too well as we either have it ourselves or we support someone with it.

Another possible option as a preventive other than verapamil is lithium which can also work pretty well. However since you're also taking beta blockers, no doubt for another medical condition, then this might also impact which other preventives you can use.

I've found that pharmacists often are more clued up about what drugs you can / can't use with other medication than many GPs, plus before I start any medication I always use Google to find the medical information sheets for the drug to check possible interactions.

It sounds to me as if your neuro has some CH knowledge but it is limited, especially with the comment about oxygen. You can read about how we use oxygen very effectively at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

The OUCH UK website that Bob mentioned as info about oxygen too, including the HOOF form that a doctor can fill out to order oxygen - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

As for blowing yourself up, well some common sense measures make it very safe, things like not smoking when using it or soon after, not using it near a naked flame (gas cooker, candles, BBQ, etc.) all make it pretty safe when used correctly. So being a smoker should not exclude you from having oxygen.

I don't like the idea of you having to race to hospital to try it out when you get a CH, after all is it wise to drive when you've a CH? Does this neuro really understand what the impact of a CH is?

I remember doing my first sumatriptan injection, having read the instructions a few times and being concerned it was all pretty straightforward. I inject mine into my belly fat but if in doubt, check with your doctor / pharmacist as to where you should do it.

Well, I smoke and I use oxygen, and I haven't blown myself up yet. Obviously I don't smoke when I'm actually using it (who would) and I don't smoke for 20 minutes afterwards because oxygen can saturate your clothes - although that's unlikely with the mask we use. The tanks are in my spare bedroom and no one smokes in there, ever. It's just a matter of using common sense.

Using your doctors logic, presumably if you don't smoke then it would be OK to have the oxygen. Just don't turn on any heating, or cook anything.

After reading the leaflet that came with it, I informed our house insurers that I had the tanks in the house. They said "no problem" and there was no increase in our premiums.
I also told our car insurers as we sometimes take a tank away with us, and they gave the same response. Again, no increase in the premiums. So then, we told the local fire service that we had oxygen tanks in the house, and they said they didn't need to know.

My mum died a few years ago, and I cared for her in her own home for the last two weeks. She had an oxygen machine in her bedroom, which DOES emit 02 into the air. It was a very small flat with all rooms close together. I didn't smoke for my mums sake, but it was perfectly safe for me to cook on gas burners with an open flame. It's no good waiting to be hospitalised to find out if it will work, because they will give you 8 litres per minute with a nose canula, and you need a minimum of 15 litres with a non-rebreather mask
Most likely, your doctor just doesn't want to pay for it.

As for the suma injections - yes the fat on your belly would be fine, but personally I find it easier on the front of my thigh. I was nervous too the first time but not any more. It hurts a tiny bit, but nothing compared to the pain of CH. Just one small prick on the skin lasting one second, compared to an hour of exquisite agony - I know which I'd choose. Believe me, the relief is so great you'll wonder how you ever survived without those jabs.

It's a pity some of these neuro's don't have to experience a CH themselves. They would soon jump on the oxygen then. Mine said I can't have CH because I'm a woman.
My GP prescribed the oxygen for me, so you don't need a neuro for that, but make sure he gets the flow rate and correct mask, as thats vital for it to work.

Let us know how you get on. Good luck with your first injection.
Maz.

Hello and thank you All for your replies. It's nice to have some support :) I feel a bit in limbo to be honest, as the neuro has told me that he has still not confirmed my diagnosis.  My next appointment with him is not till January now. So I think I may struggle to get my GP to prescribe oxygen, if I don't have a definite diagnosis?
I will give it a go and ask her to though. I take quite a lot of medication already, and god knows what other damage I've done to my liver/kidneys trying to self manage CH for so long. Having a natural way to abort them would be a god send. I just wish I could be more assertive. Thanks for the OUCH.UK link too.
I didn't get the expected headache last night (Yayy) I have only had 3 since the prednisolone but I will let you know how I get on with the injections.
Well for now I have been given plenty of reading to do. Thank you again for your warm welcome and replies x

You might consider asking your neuro about a referral to a headache clinic where you would be assured of a high level of skill/knowledge.

If interested in such a move, talk with the OUCH folks first. They can inform you about procedures, your rights under you health service law, etc.

I'm encouraging this idea because we have such a steady run of complaints about local physicians and their lack of skill with Cluster.