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Hi my name is Paul and I have been a sufferer now for nearly 4 years, I only recently recieved my diagnosis of chronic cluster headeaches Feb this year.
I had an awful time trying to get these headaches looked into and was pushed from pillar to post and given new medication until I stopped trying 2 years ago and started to just live with then. My heads where coming every other day no real set time and so unpredicatble but i was lucky enough that it was once per everyother day. I managed these by using codiene based tablets and brufen but they would last anyting from 20 minutes to over an hour.
I had been prescribed migraine tablets to counter the headeaches but these did not touch them.
It wasnt until Christmas 2023 that I finally went back to my GP as over the christmas period my heads would still be every other day but they had started to happen during nights, mornings and evenings so random that i could not cope with them. I was advised to start a headache diary which i did here a little bit of that.
7th Jan 17:00: Did not feel any signs and headache started straight away. Took 2 x Co-codemal and 2 X brufen 1 x Zolmitriptan on and off dicscomfort till 18:26 now it has stopped. (As my wife would read my diary I hid things like I.E i wanted to rip my eye out of its socket or stab my left side of my face with a blunt knife)
15th Jan: 16:10 felt the start of headache took 2 x co-codemal 1 x sumatriptan 16:44 pain started to subside 16:44.
16th Jan 01:25: Headaches at night are rare but not uncommon, discomfort enough to wake me up. This has never happened before I went down stairs took 2 x Co-codemal 2 x brufen had a quick smoke and the pain had gone within 5 minutes. Got back upstairs wnet to sleep. 05:00 Bang woke up the pain in my eye was I would say 9/10, I could only take a Sumatriptan tablet and this took 20/30 minutes to start taking affect. The concerning part is this is the 3rd time in just over 13 hours that these atatcks have happened. 2 x paracetamol taken at 05:13, brufen gel around my tmeple and jaw left side. Fell nauseous, even tho its cold in my lounge im sweeting my eye is watering.
15th FEB: No headaches for 5 day's I do not have an answer but I have started to have a constant headache from the moment i wake till the moment I sleep. (This is still ongoing even to today 17th July)
Sundat 18th Feb: Finally able to descirbe the pain. Went out for a Milkshake with the wife and had brainze freeze, I could finally say to my wife exactly how its feels and she understood but the pain is almost 8-9/10 when an attack happens.
I was finally diagnosed after going PVT (Bupa) with Chronic cluster headaches and was prescibed prednisolone, verapamil and nasal sumatriptan. The prednisolone work almost instantly and within a day the headaches had gone and I was happy for about 12 day's. The headaches returned pretty much straigh away afterwards but I had 4 in 4 weeks rather than every other day. In 4 years I have had probaley 40 days pain free, I have just had a reset and asked for steriods again and on day 5 with these and pain free but it is always in my thoughts that it wont last long.
Few questions:-
I have had a constant pressure in my Jaw since these started like I am biting too hard, this last all the time everyday ?
Will I be on verapamil constantly ?
Feel sick after taking Nasal sumatriptan?
Thanks for reading.
Regards.
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Welcome to the forum: Sorry you need to be here.
I'm no doctor, but if I realised I'd been taking handfulls of over-the-counter tablets on top of my prescription, I'd stop that, also medication overuse headache is a thing.
Verapamil is usually taken while cluster headaches are active (in bout).
Nasal sprays never worked for me, Subcutaneous injections do. That feeling you're biting constantly; I do feel like my neck and facial muscles are tight during a bout. Profuse sweating is a CH symptom and REM sleep is a common trigger during bout.
High-flow oxygen is another pain relief that works well for many.
You'll benefit from calling the help-line.
Phil.
Hi Phil,
I have been told I cannot have high flow oxygen as I am a smoker and my family also but reading on here there is a way. My house is smoke free as we all smoke outside.
I was told by my neuro to stop taking codiene based tablets which i did immediatley and went on a strick 10 day only use of paracentemol and brufen, only to be used in a episode.
I have not stopped taken verapamil since my diagnoses as my clsuter has not really stopped, it died down but they started to return and actively get worse.
The Nasal spray does work but it does make me sick after using it and the after taste oh what can i say about that.
Ooh those quacks make me crazy:
You can have oxygen for clusters, being a smoker isn't a factor, you need a better neurologist.
Oral medication is ineffective for cluster headaches; it's not absorbed fast enough to help. I think it's a gastroparesis thing, you need a doctor that can at least spell "PhD".
Give the advice line a call, they'll have you on the way to an improved quality of life in no time.
You deserve better.
Hi Paul
Sorry you have to be here but welcome to the membership. I agree with Phil that the best plan to begin with would be to have a chat on our Advice Line on 0800 6696824. Ring them and leave your details so they can ring you back. They'll give you advice about the verapamil regime as it's important to have ECGs before any dosage increase. Sumatriptan injections definitely work quicker than the spray. I was always immediately sick with the spray although it can work well for some. Do ring the Advice Line, it's the best starting point.
Dorothy (Trustee)
I feel your pain, i went through all of this for years but now i use Sumatritan injections - i take them everywhere, they have literally saved me, maybe try them