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New diagnosis of cluster headaches

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claire66929
claire66929

I've just been discharged from hospital following a week of crippling headaches on the right side of my head mainly around my eye.it starts with a itchy nose and then lasts about 20mins and happens multiple times a day.i have had a ct scan and lumbar puncture which were normal and have been started on pregabalin after a diagnosis of cluster headache was made.the only relief I have had was in the ambulance on the way to hospital when they gave me gas and air.despite asking for it in the hospital they just pumped me full of morphine each time I was in pain but that did nothing.Petrified of what is to come and would be great full for any words of wisdom or advice.Thanks in advance.Claire

0 likes, 12 replies

12 Replies

  • andrea39453
    andrea39453 claire66929

    Posted

    I don't have the same kind of headache as you but something I have been doing is changing my diet to paleo because grains, dairy, sugar and legumes aren't very good for us and 80% of our immune system lives in our gut. Changing my diet has helped me immensley and maybe it can for you too. You can check out things like an anti inflammatory diet or there is a site called whole30 with a 30 day challenge. It cant hurt to switch to eating veggies, meat and fruit, it will probably get your body in a better place to heal. Good luck.
  • Hollyberry
    Hollyberry claire66929

    Posted

    Hi Claire---your nose was itchy--did it also run? Any itching or watery eyes? I'm wondering if food allergy/ sensitivity started your headaches.

    i had similar which were triggered by crystallised ginger on first occasion and a tiny piece of dried pineapple the second.

    might be worth looking at what you eat/drink. I get headaches triggered by even the tiniest amount of coffee, chocolate, alcohol, citrus  fruit, orange juice, any spices, pineapple, ginger. 

     

  • Pax
    Pax claire66929

    Posted

    Hi Claire, ive been a cluster headache sufferer for 30years now, to say they are horrible is an understatement! Firstly the reason you got relief from the gas and air in the ambulance is quite simply because of the oxygen component. High flow oxygen breathed through a non rebreather mask is the most popular way for many to abort one of these horriffic attacks. Oxygen cylinders and the appropriate mask can be supplied to you for home use. Another sucessful abortant are sumatripten injections but they are expensive and it is not recommended to use more than two daily. Progabalin or gabapentin has helped some people to prevent attacts ...i personally am on 1600mg of gabapentin daily which I do find helps. I hope you have been referred to a neurologist or headache specialist because a good treatmentplan makes so much difference. There are also a few fantastic online support groups that offer support understanding and valuable info. Please feel free to message me if you have any questions etc that I may be about to help with. Sorry for typos am on my mobile
    • claire66929
      claire66929 Pax

      Posted

      Thanks for your message Pax. I've only had them a week so can't imagine 30 years! You poor thing.They did give me sumatriptan injection in hospital but it didn't help.not sure if it was because I was 4 days into it by the time I went to hospital.I was so frustrated in hospital when they wouldn't give me the entonox and just automatically grabbed the morphine.One ferocious episode came on on the ward first thing in the morning when they turned all the lights on.i was rolling on the bed,literally pulling my hair out(have lost quite a bit of hair on right side of scalp)and I bit a large chunk of my lower lip off and the nurse threw me a couple of paracetamol and told me to get up and have a wash as that would help! It does seem that these episodes are classed as a bad headache by a lot of people but glad to have found someone who understands even though I am sorry that you suffer too.Any support groups you could recommend would be great.Another person mentioned allergies but the itching in my nose literally lasts for about a minute before the headaches and I lose all saliva in my mouth.When that comes I know I'm heading for trouble and there is so little I can do.Feeling a little sorry for myself at the mo and just trying to get as much advice as I can.I have a very healthy diet so not much else I can change there and am not a smoker which I have read can make them more likely.

      thanks again for your message. 

      Claire

  • Hollyberry
    Hollyberry claire66929

    Posted

    Hi Claire---your nose was itchy--did it also run? Any itching or watery eyes? I'm wondering if food allergy/ sensitivity started your headaches.

    i had similar which were triggered by crystallised ginger on first occasion and a tiny piece of dried pineapple the second.

    might be worth looking at what you eat/drink. I get headaches triggered by even the tiniest amount of coffee, chocolate, alcohol, citrus  fruit, orange juice, any spices, pineapple, ginger. 

     

  • andrea39453
    andrea39453 claire66929

    Posted

    There is a blood panel you can get to show your allergens. I forget what it's called but ask your doctor, that could be useful.
  • claire66929
    claire66929

    Posted

    Another quick question to anyone who might know.i suffered with intermittent attacks for 5 days and now have been relatively pain free for 2 days (apart from the post lumbar puncture headache) what is the chance of the headaches coming back again during this episode.The doctor said it could be 4 to 8 weeks!

    thanks

    Claire

  • gpgp
    gpgp claire66929

    Posted

    Sounds terrible. Have you read the patient information about them on this web site?

    just tap in cluster to the top right of this page, it is a fantastic summary and there is a link to another site as well.

  • kevin79559
    kevin79559 claire66929

    Posted

    Hi Claire,

    sounds pretty much the same hell ive been through for the last 8 days.

    same as you done two ct scans,lumber punch,and loads of blood tests.kept saying we can't find nothing,must be a migraine.

    a nurse mentioned to me about cluster headaches,and matched exactly how i was feeling,and still am feeling.

    no break from this headache for 8 days,feel like ripping my head off at times.

    just been told by my own gp after being discharged from hospital,still in the same pain as i went in with,that it is indeed a cluster headache,and prescribed sumatripten injections ,just got to wait for one to stop to try them.

    hope like you they go away and never come back.

    Some of the doctors and nurse's after tests seemed to think oh its only a headache he can go home.

    • claire66929
      claire66929 kevin79559

      Posted

      Hi Kevin

      I have also got the injections and now have home oxygen.Had to have an ambulance out the other night as the injection didn't work and the pain had been going on for over an hour with me literally banging my head on the windowsill at ripping out even more of my hair literally.it settled with gas and air.Tonight I had another episode and used the injection and high flow oxygen.Even though it didn't prevent the pain all together it reached 6/10 rather than 10/10 and settled down to 2-10 in about 20 mins to half an hour.it was like a miracle.

      I hope you don't have another but good luck with the injection and if no joy it might be worth asking your doctor about home oxygen.

      Claire x

    • kevin79559
      kevin79559 claire66929

      Posted

      Hiya Claire, hopefully you're starting to get some relief now,from the most horrible pain imaginable.

      The injections seem to be working, gone a day now without pain, will mention oxygen to the gp,who is referring me to a neurological doctor who will hopefully sort out the right treatment.

      Take care and hopefully we are both over the worst of this.... Kev x

  • getlost
    getlost claire66929

    Posted

    Hi Claire, I've been having cluster headaches for 25 years. I'm episodic. No narcotic known to man will stop these headaches. They will make them worse and can turn an episodic into a chronic. I have 2 to 3 headaches in a 24 hour period. I take Imitrex but you can only take 2 in a 24 hour period. Usually with people who have more than 2 headaches a day, 100% oxygen is prescribed. If it worked in the ambulance then that's probably your best bet. Once a person starts having these headaches, you will have them the rest of your life.If you're episodic, when you aren't having them you're in remission. Cluster headaches are a neurological disease.the most painful disease known to man. Google The Kip Scale. It will give you a number that describes the intensity of your headaches because some are worse than others. The ones that wake you up are the worst. Sleep is a trigger so it's best to avoid naps, if possible. My episodes last 2 to 4 months every 3 to 5 years. Your lucky yours don't last too long. When I can't take an Imitrex, mine last 3+ hours. There is so much info on the Internet. Do your research because there is a lot of good info out there and you're going to need it. Good Luck~
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