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    Cluster headache..,Please Help

    I'm suffering with Cluster headache's, its been about 4 to 5 months now,i have been given Prednisolone tablets(contains steroids) for about 2 months but now my gp wont give them any more instead im on Verapamil now but seems no use,i still get headaches everyday..,
    I'm seeing specialist end of this month..,

    does anyone in here suffer from Cluster headache.., if you so,what do you take.,
    please help,

    26 Comments

    Oh bless ya, hope something works for you soon. I ain't even sure what they are, wish you well though.

    Have you had a ct scan?

    Original Poster

    Lulu'sMammy;6578013

    Oh bless ya, hope something works for you soon. I ain't even sure what … Oh bless ya, hope something works for you soon. I ain't even sure what they are, wish you well though.



    Cluster headache, nicknamed "suicide headache", is a neurological disease that involves, as its most prominent feature, an immense degree of pain. "Cluster" refers to the tendency of these headaches to occur periodically

    Goadsby, Professor of Clinical Neurology at University College London, a leading researcher on the condition has commented:

    "Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight, or ten weeks at a time, and then have a break. It's just awful."
    :cry:

    what is rationale for using verapamil, what kind of specialist?

    Original Poster

    Chiptivo;6578024

    Have you had a ct scan?



    had it couple of weeks ago, waiting for the results n c what the neurologist say's when i see him end of the month,

    Original Poster

    chezz2;6578063

    what is rationale for using verapamil, what kind of specialist?



    that's what I mean, its no use:cry:

    en.wikipedia.org/wik…che

    fascinating read, I guess it feels like the picture on the right.

    i have just googled it and verapamil is used for cluster headaches which surprised me cause its usually cardiac, the ct scan may not be 100% helpfulin giving u a diagnosis, if the neuro chap cant give a diagnosis he will do further test, i would ask him about controlling symptoms eg pain relief and/or referral to a pain clinic. hope you get well soon as it must be horrible, anything trigger them?

    Original Poster

    Chiptivo;6578133

    http://en.wikipedia.org/wiki/Cluster_headachefascinating read, I guess it … http://en.wikipedia.org/wiki/Cluster_headachefascinating read, I guess it feels like the picture on the right.



    yes,it feels exactly like that,may be more pain thn that:cry:

    Original Poster

    chezz2;6578155

    i have just googled it and verapamil is used for cluster headaches which … i have just googled it and verapamil is used for cluster headaches which surprised me cause its usually cardiac, the ct scan may not be 100% helpfulin giving u a diagnosis, if the neuro chap cant give a diagnosis he will do further test, i would ask him about controlling symptoms eg pain relief and/or referral to a pain clinic. hope you get well soon as it must be horrible, anything trigger them?



    2 of the most wanted alcohol and chocolate:cry:

    Do you smoke?

    Original Poster

    http://img410.imageshack.us/img410/6862/589.jpg
    :cry:

    Original Poster

    Chiptivo;6578197

    Do you smoke?



    No i don't

    flp14344;6578189

    2 of the most wanted alcohol and chocolate:cry:



    thats bad

    flp14344;6578204

    :cry:



    Analogies frequently used to describe the pain are a red-hot poker inserted into the eye, or a spike penetrating from the top of the head, behind one eye, radiating down to the neck, or sometimes having a leg amputated without any anaesthetic.

    Original Poster

    Chiptivo;6578227

    Analogies frequently used to describe the pain are a red-hot poker … Analogies frequently used to describe the pain are a red-hot poker inserted into the eye, or a spike penetrating from the top of the head, behind one eye, radiating down to the neck, or sometimes having a leg amputated without any anaesthetic.



    Exactly........, why me.......,:cry:

    I have suffered with cluster headaches for almost 8 years now, when they first started, i was convinced i had some sort of brain tumor because of the pain, it really was that bad, in my case i usually have a constant headache for around 4-5 weeks with about 4-5 episodes per day where i get the clusters.
    My Nuro surgeon prescribed me prednisolone and verapamil to be taken on the onset of headache which over the years i can say has helped me because the attacts are not as severe as they were when i first got diagnosed.
    I dont smoke, very rarely drink, and have tried everything to try to eleviate attacks from aromotherapy to reflexology, i do still have the reflexology on a monthly basis which i am sure has helped a little.
    The earlier you notice the onset and get onto the medication the easier it will be for you to bear, i have found this over the years, and now, although i still get them and still as often, i can honestly say, they are no where near as bad as they were 8 years ago.
    I wish you well..

    I suspect these are the headaches I used to get from the age of 15 until last June.

    I have never heard of the term cluster headache not clicked the wiki link yet either. The picture someone has posted on here looks about right though

    These headaches used to last about 3 days (i got a headache everday but minor comapred to the big ones) and were full on for most of the 24 hours in every day the big one lasted any movement would be like a mallet inside the head hitting you really hard with a pounding pressure upon your eyes, seemingly mainly on the left hand side for me and I found myself nutting a solid wall in frustration. (Yeah I know that sounds mental Co's it is/ was)

    Anyways last June I had an MI ended up in hospital and had 2 stents fitted to arteries to unblock them.

    I was a smoker until that day was given perindopril, clopidogrel, bisoprolol fumarate, (forgive spelling) and simvastatin.

    Since June last year I have had a few headaches but nowhere in the league of the previous ones i was getting for the last 27 years.

    Don't want to worry you any but maybe get your cholesterol level checked I suspect mine were vascular or smoking,

    Original Poster

    Classy_Chick06;6578462

    I have suffered with cluster headaches for almost 8 years now, when they … I have suffered with cluster headaches for almost 8 years now, when they first started, i was convinced i had some sort of brain tumor because of the pain, it really was that bad, in my case i usually have a constant headache for around 4-5 weeks with about 4-5 episodes per day where i get the clusters.My Nuro surgeon prescribed me prednisolone and verapamil to be taken on the onset of headache which over the years i can say has helped me because the attacts are not as severe as they were when i first got diagnosed.I dont smoke, very rarely drink, and have tried everything to try to eleviate attacks from aromotherapy to reflexology, i do still have the reflexology on a monthly basis which i am sure has helped a little.The earlier you notice the onset and get onto the medication the easier it will be for you to bear, i have found this over the years, and now, although i still get them and still as often, i can honestly say, they are no where near as bad as they were 8 years ago.I wish you well..



    how long did you take prednisolone for.., i mean i was on prednisolone for about 3 months, now they won't give me prednisolone anymore instead Im taking verapamil now but i don't seems any better,

    flp14344;6578043

    Cluster headache, nicknamed "suicide headache", is a neurological disease … Cluster headache, nicknamed "suicide headache", is a neurological disease that involves, as its most prominent feature, an immense degree of pain. "Cluster" refers to the tendency of these headaches to occur periodicallyGoadsby, Professor of Clinical Neurology at University College London, a leading researcher on the condition has commented:"Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight, or ten weeks at a time, and then have a break. It's just awful.":cry:



    pah

    try having sickle cell anaemia crisis :x

    I forgot to say hope you find something to get them to stop

    thats sounds horrible i really feel for you. At the moment i am dealing with headaches and migranes on a daily basis due to possible nasal polyps which are blocking my nasal airwaves, therefore i cant breathe out of my nose and get out of breathe quite easily.
    Furthermore, they cause pressure all around my nose, eyes and head which brings on my headaches/migranes.

    I have suffered from migranes and sinus pressure before along with having sinusitis a couple of times as well, and been prescribed co-codramol for them which worked a treat, although could space me out a bit if i hadnt eaten. This time however the Doctor refused to give me anything for the pain (and i really could do with some as im finding it hard to concentrate at uni) so im suffering everyday at the moment, although i have been referred to a Harley St ENT Specialist to look at my nose.

    Either way what i have isnt half of what you have and pray and hope you can get it sorted...quick.

    flp14344;6578526

    how long did you take prednisolone for.., i mean i was on prednisolone … how long did you take prednisolone for.., i mean i was on prednisolone for about 3 months, now they won't give me prednisolone anymore instead Im taking verapamil now but i don't seems any better,


    I had major problems getting these medications from my own GP as i was originally prescribed them by the Nuro Surgeon at the Hospital..
    My GP was really reluctant to prescribe this medication and a lot of email were sent from GP to Surgeon.
    Originally i was taking 80mg prednisolone (week 1) along with 120mg verapamil twice daily
    60mg prednisolone (week 2) " " "
    40mg prednisolone (week 3) " " "
    and kept decresing the dosage until the end of the attack (usually between 4-6 weeks)
    Now, when i notice the slightest headache, i usually take 40mg prednisolone for 2-3 days and if it persists and the clusters come then i will start on the verapamil.
    My GP prefers that i take Sumatriptan, which i have taken before but was violently sick on them, i have mentioned this to my Surgeon who says that Sumatriptan would only work if it was in injection form which i really dont fancy.
    I have tried everything in the past, from Tramadol, to Dihydracodeine but all to no avail.
    I think every one is different and it really is a case of finding a happy medium for yourself and an easier way to manage your pain during an attack.
    This site is pretty useful to anyone not aware of this condition.
    patient.co.uk/hea…htm
    HTH

    choc1969;6578536

    pah :ptry having sickle cell anaemia crisis :x



    I have not had either pain experiences - thankfully - but I can see where you are coming from as when we have sickle cell crisis patients admitted it is extremely hard to control their pain - and it distresses me and I am the one with no pain!

    Original Poster

    Classy_Chick06;6578715

    I had major problems getting these medications from my own GP as i was … I had major problems getting these medications from my own GP as i was originally prescribed them by the Nuro Surgeon at the Hospital..My GP was really reluctant to prescribe this medication and a lot of email were sent from GP to Surgeon. Originally i was taking 80mg prednisolone (week 1) along with 120mg verapamil twice daily 60mg prednisolone (week 2) " " " 40mg prednisolone (week 3) " " "and kept decresing the dosage until the end of the attack (usually between 4-6 weeks)Now, when i notice the slightest headache, i usually take 40mg prednisolone for 2-3 days and if it persists and the clusters come then i will start on the verapamil.My GP prefers that i take Sumatriptan, which i have taken before but was violently sick on them, i have mentioned this to my Surgeon who says that Sumatriptan would only work if it was in injection form which i really dont fancy.I have tried everything in the past, from Tramadol, to Dihydracodeine but all to no avail.I think every one is different and it really is a case of finding a happy medium for yourself and an easier way to manage your pain during an attack.This site is pretty useful to anyone not aware of this condition.http://www.patient.co.uk/health/Headache-Cluster-Headache.htmHTH



    many thanks for ur advice:thumbsup:

    my dad has them every day too
    i have read that oxygen helps i have seen vids on youtube of people having oxygen
    my dad found the tablets he was given of doc not very helpful so he takes my sisters kapake at the mo dont think they help much to be honest,but he rotinely takes them every 4 hrs
    horrible things they are feel sorry for my dad dont know how he lives with them
    good luck x

    youtube.com/wat…nW0
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