Migraine or Cluster Headache

Thank goodness I found this site, at last people who understand and don't think this is nothing! I have been a chronic migraine sufferer for 30 years and am currently experiencing daily migraines for the last ten days. My GP has put me back on propranolol and I am hoping this will help. My question is if I read the symptoms of cluster headaches, I have all of them, when I suggested this to my GP a while back it was dismissed on the grounds that the pain is excruciating, errr yes we all know that one. Is there a difference for the two conditions and would it help me if I was diagnosed again some 30 years later? 

19 Replies

  • Hi Kittiekatt 😀 you should definitely get another assessment by neurologist or national migraine centre. There are so many new meds out there which could rapidly help you get these under control !! 😘

  • Thanks Cally, I was not aware of new meds. I take Sumatriptan when I have an attack. I was thinking of asking my GP to refer me to National Hospital, I was hospitalised there many years ago 

  • I find the sumatriptan injections work better. Have you had Topimax, Lyrica etc? There's no one magic cure as you know but with the help of a proper diagnosis and a sympathetic GP you'll hopefully find your special cocktail 😀

  • I was not aware of Topimax or Lyrica, sounds like I need to be seen by a neurologist. Thanks Cally

  • You need to see a headache specialist, neurologists often aren't that helpful with migraine.

  • You are spot on there Frodo... I've seen 4 neurologists and all have proven to be unhelpful.  In one case he stated "I can't help you, you are far too complicated"

    Another: Their letter stated one condition, the clinic said it was wrong as they had missed off x & y

  • Hi kitkat 

    I suffer migraines and cluster headaches. I find diazepam for cluster headaches and a tens machine on both sides of the neck and both sides of the shoulders reduce the pain by 50-90%. Please use the tens machine with caution. Do not put the pads to near your spine and start on the lowest setting then turn it up until you can feel the machine working slightly above the amount of pain you are in. I promise it works 

    Sarah x  

  • Thanks Sarah, tell me were you diagnosed with both cluster headaches and migraine? I am beginning to wonder if I suffer from both

  • An awful lot of GPs have never seen a cluster sufferer as they are so rare - at least that's what my husbands Neurologist in London told him early this year. Perhaps print off some info from OUCH website and show it to your GP. It is your right to ask for a referral. Please do so and good luck. xxxx

  • Hey Kittie,

    Trouble is with some GP's they aren't specialised in headaches - that's what I found in the many that I saw at my practice.  It's all very well them treating the 'pain' and dishing out the pills, but not treating the actual condition.  I ended up getting worse and therefore medication overuse headache setting in, among others.  I am not saying you are in this situation...

    I would really suggest that you get an appointment with NMC if you can get down to them.  Their initial appointment is usually 40 minutes, and you will feel so relieved at being listed to, rather than being palmed off (that's how I felt at least).

    Another suggestion is that if you feel it is cluster headaches - have you tried oxygen? If you respond to high flow oxygen with a non breathable mask for 10-20 minutes, then that can sometimes suggest clusters like in my case.  I also use the sumitriptan injections and other medications, but I have two other headache conditions.

    I am not a doctor, but my experience is that oxygen is very helpful and so is the injections.  However it's best you speak to the NMC as they can come up with an individual plan, based on your symptoms and suggest that your doctor manage it by writing to them too.

    I hope that helps


  • Just spoke to my GP about a referral, apparently I have to see a local neurologist first who would then refer me on to a headache specialist! All this could take months and in the meantime I am getting daily migraine! 

  • Migraine and CH are very different and require different treatments.  I am a chronic CH sufferer of 7 years with hemiplegic migraine between attacks.  When I was referred to a neurologist I was able to choose which one and used the list of headache specialists provided by OUCH!UK.  First line of pain relief for CH is usually high flow oxygen and sumatriptan injections but the oxygen is not effective with migraine.  Diagnosis will be essential in getting you the correct treatment, both abortive and prophylactic.  Wishing you the best of luck and a pain free day.

  • Hi. I was told my next step is propranolol. I too suffer with cluster migraine. I'm very reluctant to take a daily preventative after experiencing bad Sid affect from the last one. Have you tried sumatriptan? That works great for me providing I take it at first symptoms.  Let me know how you get on with it as it can take a couple of months begore you get the full affect from it

  • I would love to try the oxygen. How do I go about getting this?

  • Hi Babs, if you already have a neurologists diagnosis for CH your GP can arrange for you to have home oxygen. Some GP's are reluctant but NICE recommends that O2 and sumatriptan injections be made available to all sufferers. I find that 9 times out of ten the oxygen will abort an attack and, as it's non invasive, without the side effects of the injections. Best of luck!

  • Thank you. I will certainly ask next time I go.

  • Hi you are not alone by far.....these sites help all around the globe bringing us together.

    It was only after having continuous debilitating headaches for a couple of months got an mri and diagnoses of cluster headaches with migraines.

    Stress was a leading factor for CH but not the migraines no simple solution unfortunately drugs rest cold flannel .......

    As you all have said neurologists find CH too complicated to deal with !! I agree .not tried tens that is an idea thanks.

    Good luck too all of you.

    Hugs to all

  • migraine is like a MILD form of CCH. Cluster headache pain is more than excrutiating, one of the worst pains known and the longest CH I had was 53 weeks, sometimes 5 per day - possibly why it's nickname is "suicide headache". Only relief was from IMIGRAN SUBJECT", a painkilling injection.

    My specialist also prescribed LITHIUM Carbonate as a propylactic and this has worked so well I am now CCH free after a couple of years on lithium but this must come from the doctor.

    you may be fobbed of with other meds due to price but you have to almost demand/ beg to try the above

  • There is actually nothing that can cure these headaches ! I have horrible headache for 20 years ! GPs would try with Amitriptylene, Beta blocker, Topiramate etc and in my case, nothing has worked! My neurologist could not do anything.

    Currently I am taking these two types of therapy below and frequency + intensity have reduced:

    1) Riboflavin (vitamin B2) 400mg daily : If GP does not write prescription, it can be obtained from HollandandBarrett, they have 100mg tablets, so take 4 of them at a time. But a cheaper option would be to buy from Amazon (Bio-Tech) . Please remember, the daily dose has to be 400mg, no less.

    2) Homeopathic remedy : Sepia 200CH - You can purchase from Helios / Ainsworth / Nelsons etc via post. No prescription required and would cost less than £10 including postage. Please buy the liquid (5ml) oral form and take 2 drops (in a tablespoon of mineral water) every Sunday morning. It will take 2 months before you notice any benefit. Please brush your teeth (if you need to ) 30m after taking this.

    Also, please consider some jogging or fast walking (20 - 30m) every day. Avoid red meat altogether and try not to consume alcohol.

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