Hi all I'm a new member saying hello to everyone. Not new to clusters though. Been having them for about 11 years now. In a cycle now and it seems to be nasty one. Normally after a cycle has finished I try to distance myself from them scared that even a mere whisper of the word cluster headache will start them off again. But finally I think I have realised I have no contol over them and will always be a slave to them. And maybe I can offer an ear or word to another who is going through the same, as know one knows a cluster like a cluster sufferer
Login to add comments
A warm welcome,Chris.
Welcome to the party! :party:
Arise and be all that you dreamed.
king canute had better chance of stopping the waves than some of us have of preventing a clusters. I have been through the meds, wives tales, chinnese medicine, avoiding foods, eating more of others and not really got anywhere.
o2 & imigran jabs often kick them into touch but do not stop them arriving in the first place, varapamil and melatonin offer some help too.
Welcome! I can so identify with you not wanting to mention the dreaded cluster word. I never talked about it for years, even when I was in cycle because I was afraid I'd be accused by well meaning friends of "thinking it on myself". I had to meet my clusterheads family before I was ever comfortable talking about it.
Hi thanks for the welcomes. What I need now is some oxygen help. In past I have only had one ch every over night so have always just battled it with no meds. This time though getting two a day so decided I need done help. Got sumatripan tablets which do work well but take a long time to start. Got doc to give me the ones that go up nose. He has given me 6 and said use wisely, don't think he will give me any more. As for oxygen have been told I got no chance of getting it. Doctors not a horrible person but I think a bit in the dark. He didn't know the nasal application existed until I told him to look it up. And when I question him about the condition he has not got a clue. I got him to go on nhs and look up clusters which recommend oxygen and said he was shocked and only way to get 15l per minute was to have an industrial machine fitted in my house. Don't really want to go back to doctors again as been twice in two weeks and feel like a pest. Is there any other way to get the O2. Any help and guidance really appreciated.
are your attacks just after going to bed or in the middle of the night?
I find the ones just after going to bed always the worse, taking melatonin helps if you get these.
"and only way to get 15l per minute was to have an industrial machine fitted in my house"
Chris, this is a classic example of a GP who has no idea how to treat CH. He has to fill in a Home Oxygen Order Form (HOOF), you'll find a completed one on our website. I really think you should call our help line so that you can then go to your GP and teach him how to treat you. By the way triptan tablets are not a treament for CH and the nasal sprays are really not effective.
Chairman OUCH UK
You're not being a pest, Dr Dick is. He has all the information he needs to offer you valid treatment (BNF 184.108.40.206).
He's choosing to let you suffer.
Think I will arm myself with as much info as possible and have another go.
Duetto my headaches in past had always been every other night just after falling a sleep. This time round they are completely different. They started the same way every other night but one night it started I got out of bed and went to my headache space counting down the normal hour ish before it dulls , but this time it didn't stop just went on for around 6 hours and with no meds was hell. After this my headaches have been pretty much every 10 hours. So each one is about an hour earlier than it was the previous day. Also the pain was in eye mostly but now is from eyebrow round temple and mostly in my neck. Not really sure what's going on. I'm about a month in and think the severity of the headaches is lessening or I'm just getting used to them. The sumotriptan tablets do kill it after about 40 mins
Sorry that you are having such a bad time and not getting much help from your GP, have you seen a neurologist ?. Have you tried the imigran injections they work every time for me .
like David said in a earlier post we have all tried other things to ease the pain and some do help , 'small strong coffee I gulp mine down,wet face cloth pressed hard against temple, it beats banging head on the wall !! Energy drinks'
hopefully this bout will go soon and you get some success with maybe another Gp, it's a lonely world out there when sufferering and not getting the care you so need and deserve, you are in good hands with OUCH for guidence and understanding.
good luck and take care.
with the nighttime attacks no good lying in bed trying to fight it being on your feet or in a chair helps. with me there is some wierd conection with lying down and clusters.
I can go to bed feeling ok but within half an hour of lying down get hit with clusters, [but ok going to bed in day time] tried beating it by going to bed early evening but no good wake up at normal bed time feeling restless then get the clusters which ease a bit if i sit in an arm chair only to return when lying down. imigran jabs not as efficient at night for me, o2 is better, melatonin helps the frequency of night attacks. Another strange thing maybe just me but with night time attacks have some thing sweet to eat [ I use ceral with added molasses sugar or honey,almond turon or icecream/cold yoghurt].
often wake up early with a very restless mild cluster, if i get up and walk about a bit and stay up it goes withot meds.
not sure if this helps but we are all so different in attacks and what helps.
Lying down greatly assists the vasodilation process,David. Try sleeping propped up with a few deep pillows,it can help. We used to think that nocturnal attacks were directly linked to REM sleep periods,but Dr Alex Nesbitt's research has shown otherwise.
And further research has shown that there is an apparent link to a dip in blood sugar levels within 1.5 hours of falling asleep. I too drive everyone nuts obsessing about when we are eating, because I know if I don't eat at regular intervals i will get a CH attack, so there seems to be some basis for a link to changes in blood sugar levels affecting CH. I have always had a sweet tooth, if I didn't I'd be a size 6 instead of the size 14 I really am, but am now going to keep an eye on what I eat and when I eat it and relate it to my CH diary.
Funny you should say that but last night I ate one of them sherbet dip things. The one with the liquorice stick things. Been having two attacks a day. Last night slept right through with no pain and all today with nothing not even shadows. Think tonight will tell il eat another in the name of science
could be why i crave icecream or something sweet at night lately been eating fruit yoghurt anyone know what happened to ski yoghourts they are not around these days used to be good too.
just googled low blood sugar and cluster headaches there are a lot of good reads on this topic.
GREAT.. That means I can have that yummy cream cake before bedtime.
I'd understand the 'laying down assists vasodilation' if clusters were vascular, but aren't clusters derived from the complexities of the signalling involved in vasodilation?
Or have we gone back to the myofacial-trigger-point ages?
I'd be interested in seeing Dr Nesbitt's research;
any links would be appreciated.
Great thread Chris. I love a natter.
Sorry about the hijacking.
Phil,the jury's still out on the vascular/neurogenic theory. Both theories have compelling arguments but contradictory flaws. However,all that is irrelevant now we have a cure in the form of a sherbet dip. I would love to see the gob on the chairman of GSK if the dip proved to be the cure......I love them,by the way.
I've found being propped up while sleeping helps during a bout, but have always assumed this was keeping me at the sleep level below REM.
I have a high sugar diet anyway, not a liquorice fan, more chocolate & toffee orientated.
It maybe I'm at the end of my cycle, but had another sherbert dip last night and no ch and none today either, had a few shadows but keeping everything crossed at moment as at 48 hours PF
chris we are all off to stock up on your sherberts tomorrow, your thread took some diversions here and there. but has been a joy to read as it opened up some good points and tips.
Been a real pleasure and a comfort having such good support in this normally very isolating condition. I would not stock up yet on sherbert just yet ,unfortunately I'm sitting up in bed writing this on the tail end of an ch. (I'm gutted). Still on to next trial
Sat here after nasty cluster woke me up this am then anther nasty one early evening now just got woken uk by pain in my left eye so anther one on way before anyone says cant be other wise won't be able to write this am just on verge my first sign is a intense pain behind my eye then its soon developes so wanted to just put this info down why do I get them at this time hard enough to sleep in this heat & wearing full leg braces now its time to finish this as pain is now starting to become very intense not sure sherbet dip would help as much as would love one right now but sadly alone & scared.Amethyst
How are you today Amethyst?
Hope your feeling better today amethyst.
Mixed day but enjoying the great sherbet dip debate
Omg I am so happy I found your comment! It was only the other day I was saying to my fiancé , " I need food or I'll get a CH" too which I then thought more in depth about it and realised that if I don't eat regularly then my headaches start!! I thought I was being a little silly to think that could cause myCH and for me to be in so much pain!
I just wanted to say thank you for your comments and now I realise it's not such a silly thing at all.
where ever i go in my vehicle I have a small stash of food in case i get hunger pains or a carb craving as in me these are warnings of impending cluster.
[keep some nairns oatcakes and pack of dried bananas [not the chips but dried soft miniture bananas in a pack from health shops]
Does anybody find energy drinks any good?
Yep, very cold and very quickly. Please use a straw to save your teeth.
Chairman OUCH UK
Yes agree about the straws lol
No straw. I have to keep a tight grip on the can or that gets swallowed too.
Yes I know what u mean Phil x