cluster headaches

hi i'm new to this so please bear with me. My daughter has been having headaches for a long time now we went to docs and he put her on amitriptyline which had no effect so we eventually stopped them. She had a couple of months headache free but now they have started up again. We went back to docs and hes put her on propranolol which don't seem to be helping. These headaches are affecting her daily activities badly. The doc reckons they are tension headaches but I don't think they are. They are always there and then suddenly she will be hit with excruciating pain generally on one side of her head and it also affects they eye. I don't think they are migranes. She is only 18 and misses work or has to leave college early cos of the pain. I just wondered if someone could help me with more about cluster headaches as there is so much conflicting info that i'm not sure thanks

21 Replies

  • Hi

    I'm sorry to hear about your daughter suffering the same way I did during my teenager days

    I started having migrain since I was 18 years old and I was lucky to diagnosed earlier as classic migraine patient , which starting usually with aura (white flashes effecting my vision in the big ending of the headache attack )

    The doctor that time gave me a big list of possible triggers including things I can avoid such as some kind of food and others hardly to avoid such as stress , over heat , over cold , sudden strong light , strong perfume , missing a meal or changing daily routin in sleeping or eating

    Gradually I discovered my list of triggers including chocolate , nuts, cola,grapes,mango,banana, fresh onion , ....... In addition to other things listed above can't be avoided

    I managed my migrain all those years by only avoiding the triggers and I was having migraine attacks as once a months and treat it with over counter medication

    Recently (I'm now 49 years old ) it the migraine is coming daily since few months , I visited a special used doctor in migrain at cleveland clinic he prescribed for me two vitamins one of them is oxide magnesium 400 mg for two weeks initially and B2 dosage as 400 mg daily also

    Unfortunately I stopped the magnesium the third days since I had a rash and thighs breath , but I'm still only taking B2 daily and I m feeling better , only one miner attack this week

    I recommend to google about both drugs and read more since as I read they are both recommended to treat migraine with aura

    The vitamins B2 400 mg has a medical name in pharmacy as Riboflavin

    It is just a trial and hope it will work also for your daughter by identifying the triggers ( you can google about all possible migraine triggers ) and vitamins



  • Hi

    Interesting reading the only thing is we have done the trigger check and eliminated loads of things like cola but nothing so far there doesn't seem to be anything triggering them. Although because she is a very, very fussy eater they could definatley be caused by a lack of something which I had not thought of. Thanks

  • Can she sit still with them or does she pace the room?

  • She's very restless with it up and down all the time she's woke up this morning with no headache bur within 15 minutes it started again getting to my wits end I just don't no what to do I'm sure the docs thinks she's making it up although he is trying different mens she doesn't seem to have any aura with them though

  • Hi, I've been suffering with cluster headaches since I was 15. I'm now 27. Doctors told me they were severe migraines for the last 12 years. I self diagnosed clusters 2 weeks ago and the drs agree. I was given propanalol like sweets and they constantly upped the dosage. They also gave me Naramig and similar drugs which have no effect. Tablets will not work as they take too long to digest. It sounds like your daughter is having clusters. There are specific symptoms which seem to ring bells for doctors who seem very hesitant to diagnose cluster. Does her eye on the affected side water, swell and droop during an attack. Does she have more than one in a day (cluster). Facial sweating, runny nose and inability to sit still during an attack are symptomatic of cluster and not migraine which may help them diagnose. Also the affected eye dilates. Treatment involves abortive triptans( injectable or nasal spray), pure oxygen and preventative verapamil tabs. There are also remedies including the use of magic mushrooms (doubt you'll advise this but has been proven to work). I hope this helps in some way and she gets a diagnosis long before I did.

  • hi

    this is interesting she has a running nose, doesn't sit still, eye watering I don't know if her face swells or droops but I will be having a very close look to see if this happens and I will watch her eyes unfortunately you don't generally stare someone so I haven't really paid attention but I will now. We going back to the doctors on 8th april so I will be bringing her symptons to his attention although he thinks its migraines I was researching and found clusters which sound more like her symptons. Its bad that doctors think you are some kind of self diagnosing idiot. Your post has been very helpful thanks.

  • I had cluster headaches starting last year after years of migraines. Nothing I was given by the Docs helped but a few visits to a Sports Massage clinic lessened the attacks and now I rarely get them. Triggered by muscle stiffness in my neck and shoulder.

  • Hi- I'm so sorry for your daughter. The pain is unbearable - it does sound like clusters I've had them for 4 years. The doctor needs to diagnose the headache type and get her to a neurologist for treatment. GPs don't understand clusters well enough and she needs a specialist to find out what works for her. Hopefully a combination of the meds suggested above should do it. Push for a neuro appointment it will make a huge difference.

    There is a help website which is brilliant called ouchuk. They know everything about clusters and the members forum is amazing for answering questions. Also there is a helpline if you really need to talk or your daughter does.

    Don't let anyone underestimate the pain she is in and I hope she (and you) get the help you deserve. It's a horrible and misunderstood illness


  • Hi Becky

    You are right there about docs its so hard to make them understand that I'm right and dispite their years of education they are wrong it is not a tension headache as he first thought and now hes said its migrane but I am convinced its cluster headaches we are going back on the 8th april after we tried the new drug hes given her which isn't working. I will just have to push push push and hope he listens, if he doesn't I will contact ouchuk, I was looking at their website last night and funnily enough they are not that far from where I live so hopefully they will be able to help as there is nothing worse than seeing your child in pain even though shes 18 and not being able to help her.

  • Glad that helped. Good luck to both of you!.

  • There's a really good fact sheet Cluster Headache the migraine trust. Sorry I can't link am on phone.

  • thanks I will check it out

  • I know Frankie. I have kids and pray they will never get this. It's frightening. I wish you both all the luck in the world x

  • thank you so much for your best wishes they are truly appreciated. I have never belong to a forum before and I have to say that everyone has been so helpful and extremely kind and I am very grateful for all the advice x

  • Sorry I didn't read all the replies here. Yes if she paces the room along with the other symptoms it is cluster headaches. She can have triptan injections for relief. I feel sorry for her, I suffer from chronic migraines since I was very young, it has been hard. Get her a migracap to relief the pain (it won't make it go away, just soothe).

  • hi,

    I don't know if any of this helps but I have been suffering from migraines since my teens, and are hormonal related, 2 weeks out of the month i was suffering with them, and now that i am going through the change they have become cluster migraines, I take propranolol but i also have maxhalt, which is tablet that desolves on your tongue and you take when you first get a migraine altho they leave you feeling drowsy my migraines have usually gone after 20 minutes. also i have tried the depo injection which helped too. unfortunately with the likes of the depo and amitrpityline you gain weight. I also suffer with stress and tension headaches, my migraines are always down one side of my face where stress and tension headaches are at the back of my head. until you have had migraines nobody knows how debilitating they are. I hope she get sorted soon, just keep on at your doctor there will be a solution out there its just finding the right medication for her. good luck

  • Hi there, sorry to hear about your daughter, I know how debilitating these headaches can be, they take over your whole life. I have been getting them for years and there does'nt seem to be anything that triggers them. I get them at the same time every day, another symptom of cluster headaches is that they very often happen at the same time every day. People sometimes call them alarm clock headaches for that reason. Some only get them at certain times of year, but I get them all year round. I too would greatly recommend "OUCH"- they have a website with lots of information and support specifically about cluster headaches, as they are different to migraines. I have been taking pizotifen for the past 2 years, they dont work for everyone, but have really helped me. I have to up or down the dose depending on the time of year, but they have worked for me and I can at least live a reasonably normal life. I hope you can get the help your daughter needs soon. Maybe the doctor could refer her to a neurologist, they would have more specialised knowlege of clusters than your gp. I have found that most health professionals don't know much about them at all.

  • Hi Frankie-I have never joined a forum before, but I actually cried hearing about your daughter-you see, I have had cluster headaches for 12 years and no one should go through this much pain.

    I have recently been to another neurologist as my attacks are chronic, and there seems to be two things that have come about in the last few years that may be worth a try-firstly Botox injections-you have to fight to get them but as she's suffering so badly it's worth the fight-they already give them to migraine sufferers on the NHS- but don't be fobbed off-they can do it for her if the neurologist considers it to be beneficial. There is also a chemical free option which is a gadget called a Vagus Nerve stimulator which is a hand held transmitter -not painful but not on the NHS yet-Check out Gammacore therapy-I hope to try this myself. I truly hope she finds relief soon-this is the most painful condition known to man and she is so young to be suffering like this. I too have daughters and the only solace I have is that I have it but they are free from this pain-I wish you all the luck in the world.

  • Yeah Clusterhead, you are right. This pain is not just a simple headache or any other pain. Only who suffers from it knows what pain is all about. I am suffering from it for the last 19 years and last year I begged God to take my soul before I take it myself. We all know it is also known as Suicide headache and some 15+ suicides are reported every year due to this pain. I think in 1923 Dr. B T Horton wrote a paper about it and since that time, it is known very well to humans as Dr. B T Horton said that this is the worst pain that a human body is subjected to. Sumatriptan is known to work though not in my case. Oxygen also works but to postpone the attack and the attack that is coming will come anyway and there is not much that can be done about it. I also feel sorry about the young girl though thats a nonsense word as it really mean nothing to the pain that she is suffering from. All I can wish is a cure in the near future or it may just disappear for good. I call it ""Brutal & Increasingly Troublesome Cruel Headache"" (BitCH). thats all I can curse though it does not cares for my curse anyway LOL

  • Hi Friend-Thanks for your reply-can't believe I'm part of this club-but we are all so desperate for a cure. Just reading your blog, and you're right about the oxygen-just a false sense of security-the beast will still surface..

    Just wondered, and forgive me if it's a stupid question, have you tried steroids- they can really help abort them for some time-long enough for Lithium to take hold-another useful drug.

    I wish you a pain free life-be strong.

  • Your daughter has the symptoms of chronic cluster headache. I'm so sorry, my mother has it and it's a tortuous, traumatic condition. I recommend Professor Peter Goadsby of Kings Hospital, London. He's a world expert and goes above and beyond. GPs have very little knowledge of this condition and it took us a year to get a diagnosis...which came down to my own thorough Google searches and the locating of a suitable specialist. However, most people respond to one of several treatments including a harmless, portable device called a GammeCore.

    Some info on GammeCore here.

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