Hiya,
sorry back with more questons!  :-[
still waiting to see a nuro so unsure still of what am having,but thought of another couple of symptoms wondered if sounded famillir to anyone?
does anyone find that during the worst pain pressing against your eye head or wich ever part can sometimes seem releiving,but the inbetween hours i find that side (my right) so saw like ive been hit in the face loads of times i cant lie on that side or rest my hand there as feels to tender,also sometimes tingly like pins and needles? And also the other thing have noticed the pain in my head/eye area sometimes worsens if i bend down like to pick something up,sort of pulses ?is how i can think of describing? lol
thanks xLucyx

jucylucy wrote on Jan 15^th, 2009 at 4:45am:

1) sorry back with more questons!  :-[ 2) still waiting to see a nuro so unsure still of what am having, 3) does anyone find that during the worst pain pressing against your eye head or wich ever part can sometimes seem releiving,

1)      Keep on asking the questions ! you have some people that unfortunately  have been in “the business” for a long time & they are glad to help + sometimes know more than your doctors  
2)      You do need to see a doctor !! get you on the proper meds (maybe a good cocktail ..)


3) I think that most people here have their pushing, banging, rubbing  methods … I think that for me it actually makes it worse but I continue to do it cuz in some way im controlling the pain (if that makes sense …)  :o

IF it ever becomes very bad go straight to a good A&E ; esp if the hospital concerned has a neurology department attached rather than one with a visiting neurologist clinic.

Make sure you have a list of all the symptoms and ask them to check for cluster headache as your suspicous it may be.
You can also ring NHS direct for advice on what you should do next
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


Cluster headache is supposed to be classed as an emergency an a good reason for going to A&E.

hi uncle cluster (lol great name!) and thanks,yeah that does make sense! why i do it to,though unsure if it hurts more or not by doing so! ha

sorry to hear to you been suffering for so long,you look young so must so must have started v.early for you! good on you to an everyone else to take the time just to help others to! all stars******

Thanks Katie, and yeah ave used nhs direct before,there pretty good, no hought about using them before for this,if get anoter bad one tonight ,have noticed becoming a pattern,usually when setling down to watch big brother (ha,sad i know!) may call them then,i suppose if can get seen by ER rather than my crap doctors,may speed up my waiting time?
thanks again  :)

Lucy, during the time my cycle is worst (always 2nd month) the right side of my skull feels 24/7 like it's been scourged. Very annoying and painful in it's own right.

And yes, I too behave strange during a hit. Guess we all do. I've been known to hit my neck with my fist, throw myself on the floor and sofa, push my head into the matras with all my might, walk from room to room, whatever seems to help at the moment.

Pascal.

hi Pascal,
ok thanks , havent got there yet , but could probablly imagine doin so!  :(

Hi Lucy,

Don't apologize for asking questions....... That's what DJ created the site for!   I have learned so many things here..... I have been a sufferer since I was 10.  I am now 38.....  I have learned more here in one year than I have in all the years I have suffered.  I thank God for this site everyday!

I also press on and squeeze my head during a hit.  In between hits, my scalp is sore, as you describe. My pain worsens if I lie down or bend over and I also have that pulsing you described.  It is as if each pulse brings a higher intensity of pain until it feels as though something in my head will burst.  Then it lowers a bit only to build up again.  

I have a lump on the back of my neck that, I have learned here, is a Cluster lump.  If I apply ice to it during a hit, it helps a GREAT deal!

Please keep asking questions... knowledge is your best friend in fighting this thing!

PF wishes,

Jeannie

Hi Jeannie,
Thanks,god still does seem weired hearing others describing exactly what feeling,as when have tried explaining symptoms before as probablly all have no-one understanding,always just brushed it off as a flu with headache,was going to ask another q to
about runny eye and nose bit,as found it doesnt happen each time,was my first symptom about a week ago with the head pain when i was out,even strangers asking if was ok as eye swelled so much and thought was crying my eyes out lol,nly had that symptom a couple of times since accompanying the pain,but after reading loads more today i see that just everyones seems different slightly wih this thing and seems vary all the time.
Thanks for your ms
xLucyx

Welcome Lucy,

No question is a bad question so keep them coming.

Your syptoms are exactly what I get.  The tearing of my eye (right eye), running nose, swelled ear and just an absolute stabbing pain behind my right eye.  Everybody deals with it differently.  I meditate thinking of positive things during a hit.  I feel the pressing, rocking, and screaming only makes it worse for me.  I'm currently in remission and started dosing with rc seeds so as of now, so far so good.  My fingers are crossed double.
This site is a second home for a lot of us so read as much as possible
and ASK more questions.
It's like one large family here, but worldwide.

Best of luck treating your CH.

Wishing you PF days!

Chad

Hi and thanks chad,
fingers crosse for you to , hope its then end of episode for you!
am definatly more convinced,never known a migraine or such to cause a runny eye and all other symptoms,Thanks all for the great advice!

oh and did you see the game last night? ("o)yahoo! another win! ha

jucylucy wrote on Jan 15^th, 2009 at 12:03pm:

oh and did you see the game last night? ("o)yahoo! another win! ha

We don't get the games at home that often since i'm in the states.  Only once and a while they televise it.  I have to read online.  

I love the Red Devils!!!  

hay! another day,another question..hehe
read something interested me earlier,is it possible that cold or hot heat blown in the face can start an attack,read in a paragraph from a doctor Lee or someone? (sorry) Just cause the last month have been using a hairdryer on my face to dry my fake tan lol before applying make up each day,so thought could may have been a trigger? [smiley=blush.gif]

jucylucy wrote on Jan 16^th, 2009 at 6:43am:

so thought could may have been a trigger? [smiley=blush.gif]

Not sure if that would be a trigger (though a blow-dryer would be kinds cool and funny … ok ok, nothing here is funny.. hehe)
Im sure you will find 100’s of things that you will think & try (and want) to pin on an attack.
I “think” some triggers stay the same (like red wine for me) but other will change…

did anyone suggest to you do a little log? You can have a calendar and just write down the exact time of every attack (+duration and give it a 1-10 pain level  - I know it’s a 20…  ;).
I would then also just add any things you had or did in the last 12 hours (workout, food, drinks or any other activates…

After 2 weeks you may see a pattern ...  
ps-

In cycle hot or cold on my face sets off my already po'ed trimalgic nerve.

Have you had any joy in getting a referral to a neurologist?

That is one to talk to them about as some folk can be unlucky and have more than just CH.

Hi guys (and gals) thanks for answering, and yep unc.cluster have started a diary, hadnt thought before also untill u said, but red wine was also a favorite for me, untill about 2 years ago had a severe headache from drinking it,was that bad not touched it since,switched to rose instead wich found was better ? maybe was a link there?  who knows?am still baffled with it all! lol! [smiley=huh.gif]

and yep mike (hi) the watery eye and nose bit well annoying! also found to that headaches and pain is worse when this bit comes on first,when got that first over a week ago,was in town and then not ever hearing of this before went into a chemist and asked for the strongest nasal cong spray they had,said no more than 8 squirts a day,but did that all in one go,and had it practically hanging out my nosteril all day lol and of course it did nada!

and thanks Katie,am seeing my doc on monday,have been house bound this week,as got my little ones at home,3yr old twins,one unfortunatly has broken his leg! and my youngest who is 6mnths,and live quite far from the surgery,but my parners been able to get a day off for mon so can get the ball rolling,i suppose the doc will have to refer me,then be however long that takes?? am guessing is that the way it was for others?

If you can get a referral for suspect cluster headaches IN cycle you should have an urgent referral to a consultant neurologist.
Make sure it is clear you are in cycle NOW so the hospital knows to give you priority under the BASH guidelines.

IF you can locate a named neurologist you want to see rather than leave the GP to refer to a neurologist [its not much fun seeing someone whose field is epilepsy when you have a headache disorder!]
Check the local hospitals for who has a neurology clinic on site.
Check who is in the neurology department
Narrow down if the clinic offers a headache clinic or can offer a neurologist with an interest in headache disorders.

Remember under new legislation you can ask for a referral to the consultant of your choice at the hospital of your choice.

I was seen in three weeks but the dozy GP did not emphasise the CH as ,much as he did uncontrolled chronic migraine [smiley=nono.gif]

Let me know how you get on; hope you do get taken seriously, CH takes the colour out of life.

Thanks Katie,
Well just got back from the doctors,did get to see my own one today,not a locum, but to be honest she didnt seem bloody interested at all!! i first asked if was familliar with ch and she replyed she was so told her my story symptoms (severe pains,in all the right places,regular times,worsening,as when first joined they wernt affecting me at night so much,was able to go back to sleep. but for the last 3 nights have been woken between 2-3am and up for couple hours in pain,the runny droopy eye,etc etc blah blah) she didnt right anything down,just nodded,and when said my peice,she just hmmed and asked if id had an eye test recently,wich luckily i acctuallly have, or she would have prob just sent me away to have one! then just said i looked abit stressed and was probablly brought down to that,and said if it was ch said its mostly stress that causes it! and was gonna leave it at that! so i had to say,no, i really have been in aggonising pain is there something she could do,like possibly refer me,but she wouldnt,in the end after a bout of frustrated tears , she reluctantly gave me a perscription for PROPRANOLOL 40mg one at night? havent heard anyone mention tia one yet? so if anyone any info ? will do some research on it in a bit,so just gotta see how that goes? feel abit let down really with her attitude,and oh yeah you guys will love this one,when she asked what id tried for it gave her my list of stuff,then said only releif slightly from it was today downed 3 cans of red bull and took the edge off -she laughed! and said that was wrong ,that if had ch it would have the opposit affect and make it worse! ahhh so,sorry rant over,who knows maybe this will be a wonder drug that will help ? will have to see??

Your doctor lied when she said she know's about CH.
Inderal is a beta blocker. They use beta and calcium channel blockers to stimulate neuro-transmission resulting in relief for some CH'ers. It didn't work when they tried it on me some 18 years ago.
Look into 02.START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
all the best
the bb

Contact OUCH UK urgently.
Contact NHS direct for advice as to what to do now

[Get thee to A&E and show them the droppy eye et al and kids in tow..not easy but there are days...]

BTW that is not according to BASH guidelines; .....contact PALS but OUCH UK would be better. They may be able to tell you which neurologists deal with CH.

And KEEP that diary going as you will need it when you do manage to push for a referral.
Sadly you may have been blocked if this only the first time you have moaned about this to your GP. I had 20 years worth of moans and because I had a diaognosis of chronic migraine and was female I was patted on the head over the other headache. :-X

You CAN self refer to the London Migraine Clinic.
Whilst they deal in migriane mainly they DO know about CH and its a charity rather than private hospital.
Give them a call.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Prop is the one of the first choices for migraine.....not CH. ::)

and I thought my GPs were a tad dopey.

I'm sorry you wasted your time on this dolt Lucy.  Clearly she hasn't a clue.

Looks like Katie knows the UK system.  Follow her advice...

Good luck hon.  There is an answer out there for you.

In the mean time, keep ranting here.  You are in good company.

-Dennis-

Thanks very muh Dennis! and hi to you,yep not having much luck at the moment  :(

and thanks Katie will call nhs today, see what they say, the doc said them tablets would have ammediate affect? but took it at 6pm, and between 8-10pm and 2-4am had 2 bouts of the worse pain so far!!! though also when read the leaflet inside the box also sais on tere for CHILDREN under 12 experiancing migrain to take 20mg 2 or 3 times a day,and told me one 20mg a night??

Red bull doesnt seem to be helping anymore either,all did last night was kept me wide awake between the 2 worse bouts of pain,so have not really slept,how o you guys solve that one? or is it a choice of pain or sleep? thought i was even seeing things last night when saw what looked like a spider with really long legs crawling along the floor,then realized was a clump of my hair must have pulled out when hurting! lol

anyways thanks for listening,hopefully will get some joy wit the nhs! :(

Immeadiate effect? Even in migraine preventative treatment the use of that is cumulative [have to take them for a while for the effect to build up]
In other words by the time its built up enough to be effective if your episodic you may well have left this cluster cycle anyhow.
[BASH pdf can be found here START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE ]

Keep fighting your corner, your the one who is living with these symptoms. Had a thought, if you have a camera could your partner take a photo of your eye when it droops and waters?  'Horners' does not alway oblige in the 5 minute UK GP appointment slots and it is one of the big pointers that you do need to see a neurologist.

Have to admit even I have gone to A&E when the pain has eaten me alive - with my brood in tow. The pain can be so awful sleep is not a choice at the time; try and get some rest in between hits if you can.
This time I did not begin to catch up on weeks of lost sleep until the heads ceased and I could sleep.

My kids have survived on cold baked beans out of a tin with rich tea biscuits to dunk in the sauce whilst watching mindless amounts of kids TV when they were younger and I was bad. It was not ideal but at least they had food.
IF you have a pattern to the pain I suggest trying to make food ready to microwave or similar later, the freezer is your friend.
Ready prepped fruit, bread rolls, cubes of cheese or whatever protein they like in a sandwich box in the fridge make a good instant lunch that even a three year old can get for themselves if you know lunch ain't going to be great.
I even planned my days  around when I knew the pain would surface; mine likes to wake me up at 4am and smack me 4 to six times a day for fun when its back. I know I am a choclate fireguard when it hurts  and will be delicate and achy in between but I can target one or two goals to try and complete each day.
Choose your essential battle for the day be it the washing up and basic food prep for later or keeping that promise to take them to playgroup for a bit and collapse once you get home having used crisps, bread and bribery for half hours rest. If you manage something great and if you do a little more fantastic.

Even three year olds will pick up something is not right with mum so try and explain that sometimes mummy's head hurts like someone has hit it with a hammer and it is NOT your kids fault but they can do X, Y and Z whilst is does hurt as that would help you.
I also taught mine how to call 999 'just in case' after a memorable falling down the stairs and having to be dragged off to A&E with concussion after one really bad headache just started.
I also bought a phone with programmable speed dial so my kids could call 'Dad', 'Granny' and 'Grandpa' without trying to remember the long phone number. I know I can be pretty ill and decided my kids knowing who to call for back up would be less scary than worrying over what to do when I am bad. [Hope that makes sense]

Welcome to the world of creative parenting CH style. ::) and trying to explain to GPs who think its all stress because your trying to care for young kids.

Ha perhaps when i have time I may try and write something on parenting with head pain! ;D

Thanks Katie,yep you should write a book! ha very helpfull
have found myself doing some of the things you suggested,pre cooked loads of pasta and kept in the fridge for lunch , and using bribes for breaks lol, been getting them to nursery, but found the cold air often started the morning one ,or maybe just coincidence ,but anyhow best to get them there for the break! thanks again,will update if have any more info with the docs  [smiley=confused.gif]
Lucyx

Hi Lucy,

I used to live down your way and a lot of my family are still there.

I suspect you have had lots of advice about what to use.

Has anyone mentioned hot or cold compresses on your face during a hit.

As per usual with CH nothing is totally predictable except the level of pain. So if the hot compress works it will be likely the cold one won't and vice versa.

I put 3 tea towels in the oven at about 100c then when they are warm I apply and keep rotating them. They always give me a sense of relief. Still have to pace though.

O2 is probably the best at getting you below the intense pain levels and for a lot of people it aborts the attacks. For me it keeps it at bay. Red Bull is another that sometimes works or sometimes very strong coffee in sips over a long period of time.

In Clusters unfortunately every action seems to have a pay off somewhere else so finding the safe route is a constant quest for many people. As you know when you are in intense pain you will reach for any medication or treatment to stop it.

I haven't read all the posts so I don't know if you have mentioned your partner and how (he) supports you and his understanding of what is going on.

The right support can be invaluable.

Take care. Being inquisitive and trying to understand all the complexities of clusters is the way forward.

ET.

Hi Lucy,
Loads of sympathy coming your way.
I went through loads of hassle getting diagnosis, finally happened when I went to A&E and they admitted me to the Acute Assessment Unit. Got CT scan and everything. My wife did tell them that my mum had a Brain Haemorrage at 43 and my Gran had a stroke at 53, which seemed to push them along.
Ended up seeing Neuro whilst admitted to AAU.
Worth going to A&E and taking all the info from here and giving it to them.
Good luck, my kids are great when the Beast visit, neither have known me without them.
Wishing you PFDANs.
Vince

Thank you and hi Ellick and Vice ,
Yep it does seem like a beginning to long road! as it must have been for so many of you, on the up side it does seem like this thing may be subsiding a little? (first time said out load lol) though i know not to count my chickens yet! ha, or could be maybe the beta blockers are helping what the doctor gave me,though will maybe find out,cause hate taking them have been having awfull dreams and completly knackered in the morning,even when was getting up in the night in pain seemed to still have more energy in the morning than been having ,been like a zombie wich no good when its the busiest part of day for me,so gonna stop them for now see what happens?

And yep Ellick have found to a small heated towel on my face helps alot to,normally have one with me and 2 warming on the radiator,though never warm quick enough! so thanks for that didnt even think of the oven!  :) and Red Bull has become a good friend,used to hate the taste and smell,but got used to and dont mind it now,plus needed the extra energy kick in the mornings to!

And good to hear Vince you got the support and your kids are good with it,mine are all larning at the mo as i am, my partner is supporting taking over with the kids when he gets in from work,and also given up his evening couple of drinks of wine we would have together until i get over this, ha,my 10yr old daughter has surprised me to being good at playing mummy to the others when mummys not up to much! have thouht of a &e wil be my next thing if get another bad one in the eve,but if this cycle has finished ??? (would have been 12 days) am going to have to just keep pestering the doctors instead!

as always thanks for the answers and advice
Lucy :)