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National Migraine Centre
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Please help with my cluster headaches

Hi. I'm s sufferer of cluster headaches. I'm currently 6 weeks in. I've just finushed a course of steroids. During my time I've gone from having them continuously all day every day. My only relief was short breaks while psin relief took away the pain to 1 or 2 attacks a day. I'm currently taking 3 x 0.5mg pizotofen per day. I've noticed that I seem to get an attack about 2hrs after I've fallen asleep.this in turn makes you apprehensive to sleep as I know what's in store. I use sumitriptin nasal spray as it's fast acting and ice . I've been told that amitriptyline is also used and us normally taken at night before going to bed. Could I use the two at the same time.

I'm also trying to explore any alternatives such as pure lemon juice / chiropractor etc. Try to follow strict food sleep routines rtf. I've read that these headaches arnt food related but as theyre tring to take over my life( i can't even enjoy reading a book in the bath anymore as heat seems to trigger them). I'm just looking for help / advice and some means to get my life back to some sort of normality.

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Poor you so sorry! Cannabis is being legalised for certain chronic pain conditions and that sounds like you especially to help with sleep! My locum GP nearly fell off his chair when I asked for it! Hadn’t heard of the case in the press or of its uses but I’m use to going to GP s and getting nowhere! It’s legal in certain states in the USA and people report an improvement. Worth a try good luck

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Just wondered has your headache specialist mentioned MNB. Multiple nerve blocks. I’m going for them 21st Jan. I’m not suffering as much as you. I have Hemicrania Continua not clusters but I do know they use them for both. My headache specialist said 75% of his patients benefit from these.

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Hi Chris,

I have Chronic Migraines, so not the same as you obviously, but I am also an insomniac, when I had a particularly bad period of about 2 months of not being able to sleep more than 3 to 4 hours a night I mentioned to my neurologist that despite sleeping exceptionally badly my migraines seemed better. She said recently it had been observed that there was a link between sleep deprivation and migraines, particularly cluster migraines and that there was a trial going on right now between enforced sleep deprivation and its ability to stop the onset of a flare of Cluster Migraines. So theoretically you might have been able to divert them by enforcing a period of sleep deprivation?

However this is obviously speculative and unproven, also it is my understanding that Cluster Migraines typically last for about 6 weeks so hopefully you are already nearing the end of this cluster and therefore it might pointless trying it now.

I am currently on Amitriptyline now and have been on Pizotofen too and I know you can take Triptans at the same time as them, however when you have chronic migraines you are only allowed 6 a month otherwise they can cause rebound migraines so you might want to bear that in mind.

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I am sorry to hear you are suffering from cluster headaches as i well know suffering from chronic migraine /cluster headaches It really messes me up it took along time to get the diagnose to get oxygen at flow rate of twelve to take at the start of an attack and half hour after.

I would suggest if you don't take oxygen for your cluster next nero oppointment ask your specialist for it. As for the bath reduce your bath water temp or if you can stomach it take a cold shower i find it helps to reduce the severity in mine but considering it is winter might not be that plesent as it is in summer.

Hope this helps and dont let it destroy you.

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I just wanted to thank all of the people that replyed to my post. Im seeing my gp again later this week so ill ask about nmb snd oxygen when i see them.

Thanks again

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Hello Chris. I could have wept when I saw your post particularly about the sleep inducing headache. I'm sorry I have no answers but just to let you know that I am going through the same thing. Walking round like a zombie because of lack of sleep yet frightened to go to bed either. I also know what you mean about reading. I don't read in the bath but enjoy reading in bed or doing a crossword but have to adopt a specific position with the aid of a cushion to be able to do it. It's so exhausting in the end you just don't bother. Audio books are good if your headache isn't too bad but it's not quite the same.

Are your headaches caused by anything in particular? Mine seem to be neck related but I'm only guessing. No one has actually diagnosed anything. It's funny. I used to have a bad neck but that got sorted by a physio and it was only after that that the headaches became worse which is ironic. I think the road to relief is long painful and very individual. I hope you have better luck than ive had over the last 4 years. Kind regards Pingez.

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Hi Chris, I too have been on pizotifen, whilst it helps my MAV it doesn’t stop the really severe migraine attacks or daily migraine. You need to ask to see a neurologist again, the waiting lists can be long depending on where you live so ask to be referred ASAP. Also, nerve blocks, Botox and additional preventative medications can all help. I am waiting for these myself. We have to remain hopeful aye. Ps ice can help numb the pain temporarily on the head and washing your hair with r cold water at the end of a hot bath. I’ve noticed that when I’m having a severe attack my head feels like it’s on fire which makes the nausea worse for me, so cold anything seems to help a little x

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Doh! Just realised you said you use ice already! I have been given amitripyline and pizotifen together in the past so they can be taken together! I loved amitriptyline, I could actually sleep and felt happy for once ha!

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Thanks.

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I'm sorry Chris. In case you don't know about this great organisation I would encourage anyone with cluster headaches to check out: clusterbusters.org/. Hope this gives you insight, encouragement and hope.

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Thanks so much for your help

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Hi i just wanted to give an update. My cluster headaches seem to be subsiding now (thank god) I've been off work for the best part of 2 months. Looking forward to getting my life back to normal. My doctor now has me on 20mg amitriptyline and 40mg of verapamil. I 'll not sure if it's the drugs or nature taking its eventual course but I'm glad they seem to be on their way. Seeing my doc again on Monday to plot the next course of action. Also due a c.f. scan . Fingers crossed my bloods etc are all ok.

Thanks again

Chris

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