Just been told i have CH(CLUSTER HEADACHES)There Back - HotUKDeals
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Just been told i have CH(CLUSTER HEADACHES)There Back

muffinman_84 Avatar
6y, 9m agoPosted 6 years, 9 months ago
anybody else suffer from this or know anyone who does?

discuss.
muffinman_84 Avatar
6y, 9m agoPosted 6 years, 9 months ago
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#1
Support group here

http://www.clusterheadaches.com/

[SIZE=4]This site is devoted [COLOR=#ff0080]completely [/COLOR]and[COLOR=#ff0080] exclusively[/COLOR] to those that suffer from, and to the supporters of those who suffer from [COLOR=#ff0080]Cluster Headaches![/COLOR][/SIZE][FONT=helvetica,arial][SIZE=2][/SIZE][/FONT]
#3
Ooooo I feel for you, that is horrible I suffer from migranes at the moment and for the last 6 months nearly on a daily basis. But cluster headaches can be so much worse, as no way to stop then (sometimes other then pure oxygen) and you feel like your head is imploding.

I have just had surgery which will hopefully stop my sinus problems causing my migranes as much...but if it does not in the next 4 weeks then I will probably have to go for a cat scan!

My heart goes out!
#4
i don't have these but i have a neurological condition that gives me nerve pain in my head and have had a headache for nearly 6 years now so i feel your pain and send you a big hug xx
#5
i have had the latest bout for about 7 weeks pain like no other it has a nickname called suicide headaches (Nice).

the doctors have trace it back for 4 years things like ear infection and other miss diagnoses.

the nights are the worst you have headaches like clockwork so you sort of know when you will get them but cant do nothing.
#6
I suffer with them and found that slow release tramadol helps. ask your doc :) You get side effects for a few days/couple of weeks but if you can put up with it, they help me :) worst side effect for me was itching. all my skin constantly itched and I even dreamt about it! but once that passed, all good now and they arent as bad as they used to be
#7
tango42
I suffer with them and found that slow release tramadol helps. ask your doc :) You get side effects for a few days/couple of weeks but if you can put up with it, they help me :) worst side effect for me was itching. all my skin constantly itched and I even dreamt about it! but once that passed, all good now and they arent as bad as they used to be


i have not be told about tremadol by my doctor or the Neurologist they have give me Imigran injection and i will also be given 100% oxygen treatment.
#8
The ex was put on meds,Inderal i think it was,but it was a long time ago.
#9
muffinman_84
i have not be told about tremadol by my doctor or the Neurologist they have give me Imigran injection and i will also be given 100% oxygen treatment.


I take co-codamol on a nearly daily basis recently, but have Tramadol as well but don't find it work for me as well. Just like I never found Imigran worked for me, different people need different things. Although co-codamol and Tramadol are both codeine products, thus can be highly addictive...and I have probably taken over 300 of them in the past 6 months (of the strongest 30mg type)!
#10
i have been told there are many different treatments, but they work for someone but they dont work for others because the are not 100% sure what the cause of these Cluster Headaches.
#11
Horrible horrible things... I really do feel for you!

Your quack should give you some tablets from the -triptan group.

I had a bout for 3 months (I was lucky) went for all manner of tests to make sure my brain wasn't rotting (felt like it was pouring through my nose) I was given Sumatriptan and it worked like clockwork 20mins after a major attack I was fine. I used to get mine early evening or first thing in the morning.

The Key is early prevention as soon as you feel a twinge (used to be an eye twitch, watery eyes or runny nose with me) take a tablet.

I remember trying all manner of things I was eating Nurofen like sweets until I had a diagnosis and regualr painkillers did Sweet FA!

Seriously try and get some Sumatriptan on prescription I had no side effects no sickness no dizzy feeling
#12
i take 400mg a day of tramadol and have to have a break every few months as it can cause rebound headaches it may take a while to find the right meds for you its often trial and error hope you find your match quickly
#13
Celticsun
Horrible horrible things... I really do feel for you!

Your quack should give you some tablets from the -triptan group.

I had a bout for 3 months (I was lucky) went for all manner of tests to make sure my brain wasn't rotting (felt like it was pouring through my nose) I was given Sumatriptan and it worked like clockwork 20mins after a major attack I was fine. I used to get mine early evening or first thing in the morning.

The Key is early prevention as soon as you feel a twinge (used to be an eye twitch, watery eyes or runny nose with me) take a tablet.

I remember trying all manner of things I was eating Nurofen like sweets until I had a diagnosis and regualr painkillers did Sweet FA!

Seriously try and get some Sumatriptan on prescription I had no side effects no sickness no dizzy feeling


I was told about triptan have to go see the neurologist again next week might bring it up.

i have been exactly the same for 6 weeks eating all sorts of painkillers feeling like i am going insane pacing up and down rocking and then it goes.

yeah i get mine late afternoon about 12-1am and first thing in the morning lasting about 45mins to 1.1/2hrs.
1 Like #14
muffinman_84
I was told about triptan have to go see the neurologist again next week might bring it up.

i have been exactly the same for 6 weeks eating all sorts of painkillers feeling like i am going insane pacing up and down rocking and then it goes.

yeah i get mine late afternoon about 12-1am and first thing in the morning lasting about 45mins to 1.1/2hrs.


If you were given Imigran that is Sumatriptan.
1 Like #15
its really is bad, worse than a migrane because its such a concentrated pain in such violent bursts.

If your doctor has already given a diagnosis of CH there should be no reason he can't prescribe a small amount of Sumatriptan or something similair, at least to keep you going until your Neuro appointment.

Hope you get it sorted soon mate :thumbsup:
#16
thanks all nice to know i dont have to suffer alone.
#17
awoodhall2003
I take co-codamol on a nearly daily basis recently, but have Tramadol as well but don't find it work for me as well. Just like I never found Imigran worked for me, different people need different things. Although co-codamol and Tramadol are both codeine products, thus can be highly addictive...and I have probably taken over 300 of them in the past 6 months (of the strongest 30mg type)!


my OH used to take co-proximal (sp) for his headaches but they discontnued them so he now takes co-codamol and tramadol

have you asked about dyhydrocodeine(sp?)??? side affect to these are though that you can sleep for 1-2 days solid, well OH can anyway only waking for toilet breaks and food

i can sympathise with you OP my OH suffers badly with headaches his are constant as his brain still suffers aftershocks he has a headache everyday for the last 8 years i think it is now, somedays its bearable other days like today hes gone to bed as he cant handel the pain :(
#18
ilovepink
my OH used to take co-proximal (sp) for his headaches but they discontnued them so he now takes co-codamol and tramadol

have you asked about dyhydrocodeine(sp?)??? side affect to these are though that you can sleep for 1-2 days solid, well OH can anyway only waking for toilet breaks and food

i can sympathise with you OP my OH suffers badly with headaches his are constant as his brain still suffers aftershocks he has a headache everyday for the last 8 years i think it is now, somedays its bearable other days like today hes gone to bed as he cant handel the pain :(


Nope I've settled on the co-codamol, was finding them a little addictive to begin with, and i hate taking pills. But now I only take them when needed and have some less strong ones as well now.
I will not enquire about any other meds as i said i am settled on these, but also praying that the surgery will mean no more migranes as i do not want a cat scan, as just the thought scares me (for obvious reasons).

Also not sure Id want to sleep for days! Unless I go through insomnia again!
#19
awoodhall2003
Nope I've settled on the co-codamol, was finding them a little addictive to begin with, and i hate taking pills. But now I only take them when needed and have some less strong ones as well now.
I will not enquire about any other meds as i said i am settled on these, but also praying that the surgery will mean no more migranes as i do not want a cat scan, as just the thought scares me (for obvious reasons).

Also not sure Id want to sleep for days! Unless I go through insomnia again!


cat scan is that when you go in the tunnel machine thing??

OH hates going into those things
#20
ct scan is just an xray but if its because you are scared what they will find its best to have it. i have one every 6 months
#21
ilovepink
cat scan is that when you go in the tunnel machine thing??

OH hates going into those things

as below :thumbsup:
dmissy13
ct scan is just an xray but if its because you are scared what they will find its best to have it. i have one every 6 months

i know, its not the actual having it done its what it could mean. I agree that if it is something more serious it needs finding out sooner then later, which makes me laugh when this has been going on for a year now with me and they havent given me one!

How comes you go every 6months?
#22
26 years I put up with them for unti an MI. Now 1 of the tablets I'm on now stops them. I think (hope) 1 year 9 months so far without one.
#23
dontasciime
26 years I put up with them for unti an MI. Now 1 of the tablets I'm on now stops them. I think (hope) 1 year 9 months so far without one.


Very nice! Bet that breathed new life into you!
#24
This topic is very interesting missus has been having severe headaches for the last god knows how many years and headaches can last for hours in a day. Will tell her to read up on this thanks for posting op.
#25
awoodhall2003
Very nice! Bet that breathed new life into you!


Kind of. Still get headaches on regular basis quite nasty ones but really laugable compared to what they used to be like.

I do hope everyone gets a decent breather from theirs eventually
#26
just had a headache last about an hour i could feel it coming on but nothing i could do but just wade it out.

also there is a great website [url]www.ouchuk.org[/url] very helpful
#27
awoodhall2003
as below :thumbsup:

i know, its not the actual having it done its what it could mean. I agree that if it is something more serious it needs finding out sooner then later, which makes me laugh when this has been going on for a year now with me and they havent given me one!

How comes you go every 6months?


i have intracranial hypertension so too much spinal fluid around the brain it squashes it and causes it to swell so they need to keep an eye on things, i have had 3 shunts fitted in my head to reduce the fluid but they have failed and i am having one fitted in my spine next month. i spend a lot of time having tests and lumber punctures so i understand your nerves totally
#28
dmissy13
i have intracranial hypertension so too much spinal fluid around the brain it squashes it and causes it to swell so they need to keep an eye on things, i have had 3 shunts fitted in my head to reduce the fluid but they have failed and i am having one fitted in my spine next month. i spend a lot of time having tests and lumber punctures so i understand your nerves totally


Nasty, hope the spine one does some good! Its things like that I'm worried about, not just needing something major done, but the constant tests, and visits etc. I have a friend who has a rare condition and is in hospital once a week (scheduled) for tests, and often ends up going in more!
#29
i know what you mean when i was 1st sent to hospital they told me it was a brain tumor and some days i wish it was as there is a chance it could be out and over with instead of being stuck with a rare condition with no cure . one day something will click and you will want the tests and you will be ready for them
#30
dmissy13
i know what you mean when i was 1st sent to hospital they told me it was a brain tumor and some days i wish it was as there is a chance it could be out and over with instead of being stuck with a rare condition with no cure . one day something will click and you will want the tests and you will be ready for them


What a bad diagnosis though! But I can imagine, but then if you had a tumour and it was too bad they couldnt remove or something else terrible then I'm sure you would take the rare condition with no cure. But sounds horrible.
Oh I might not like the idea of it, but I wanted the tests before the surgery I had, but they said it should be a last resort and keep playing it down saying it is nothing but sinuses, pressure, migranes, and the alike. Thus I hope they have got it correct in my case!
#31
fingers crossed for you x
#32
Hypertension can lead to even more serious problems than the headaches which are bad enough. Make sure that at least your GP is aware of your ongoing problem to lessen any further problems.
#33
its intracranial hypertension i have and don't worry i see the neuro every 3 months and having my 4th surgery next month
#34
after 10 months not having a cluster they are back hope this does not last as long and my last lot.

dont think i can take another 7 weeks again.:(

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