Hi, I’m new here so sorry for the long post but need a bit of help with verapamil.

I’m 37 and have always suffered with migraines. In October 2019 something changed and I had severe pain behind my left eye, my pupil changed size. The eye was constantly watering, my nose was running, eye lid drooping and my whole left side of the face felt sore to touch. I was sent to eye hospital but they couldn’t find a cause so was referred to neurologist. Waiting list on nhs was 9 months and I was so concerned that I paid and went private. I saw a neurologist in December and had an mri that was fine, I was then diagnosed with cluster headaches. I was started on sumatriptan nasal spray and verapamil 40mg 3 times a day and then told to up to 80mg 3 times a day once I had had an ecg. I found the nasal spray helped but prescription said to only have 2 a day and I was having 4-5 cluster headaches a day, so was struggling once I had had the 2. I left a message with consultants secretary but it took a few weeks for him to call me back and by then I was pain free. He asked if I was pain free why I was still taking the verapamil so I advised that I didn’t realise it was only to be taken when I was having the clusters. He didn’t discuss how to wean off them so I just stopped them but today have been in a lot of pain, please can someone advise how to wean off. It’s hard to speak to the gp and I can’t afford to keep going to the private consultant. I am going to ask gp to refer me to an nhs consultant but the waiting list is really long. Consultant has now suggested home oxygen but gp said this will take time as is not urgent. Consultant has also said I can take as many of the nasal sprays as I need which is good.

This condition really is horrible, I feel so alone and low. I’m either in severe pain from the clusters and pacing the room trying to rip my eye out or sleeping as they have left me so exhausted, even when they have gone there is still always a niggling background headache. I feel like I’m always in bed and missing out on time with my kids and family. Can’t make plans as always need to cancel. I’m holding on to my job by the skin of my teeth as have had 3 of the last 6 months off sick

No one seems to understand, when you tell them you have cluster headaches, they say oh yeah I get headaches too, I wish people understood. I’m 37 and sometimes feel that this is no life. I know there are so many people worse off then me and I need to stop feeling sorry for myself but it’s hard at the moment

Sorry for long post x

G'day Nicky, welcome, and I'm really sad you're getting such a rough deal from the people who are supposed to be helping.

When it comes questions about dosage and management of medications you'll often get a lot more sense and info from your chemist/pharmacist than you will from doctors and specialists.

A little more empathy, too.

I'm happy that you're currently pain free but this is also the time to start stocking your arsenal.  Just tell the doc the headaches are still hell and fill all your sumatripan scripts for when you need them next time.

Organising oxygen can put you through all sorts of hoops and hurdles so now is the time to get the process started.  The Oxygen Info button to the left of your screen will be helpful.

It might also be worth starting a headache journal listing each time you get hit. Time of day, duration, pain level, what you'd been doing, what you'd been eating and so on.

These diaries are very helpful to competent doctors and can also suggest certain activities, foods or the like that may be triggering individual attacks.

It's a monstrous beast we must fight, Nicky, but we really can beat it into submission and get on with our lives.

Please let us know how you're getting on because we care,

Brian downunder.

Sorry to hear of your situation Nicky. I have also been brought down by CH. For me the answer is verapamil. I intially had to take very high doses but have now reduced to 360mg per day. I have been CH free for a few months now but have to keep taking verapamil. I still get shadows. I am surprised you stopped taking verapamil. Maybe you should resume taking it as the doc prescribed. It seemed to work for you at a very low dose. Side effects are tiredness and constipation. It is a powerful drug but for me has been a lifesaver in every sense. Good luck