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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Help!!!!!!
        
(Message started by: nools on Sep 15^th, 2006, 5:18pm)

Title: Help!!!!!!
Post by nools on Sep 15^th, 2006, 5:18pm

Hi, I'm Nuala and just knew to this site. I live in Manchester in England (but originally from Derry in Ireland) and have had CH's for 5 years now and I'm only 24!!! I haven't actually been diagnosed with CH as yet but i know myself, by reading your messages and surfing the net, that this is exactly what i'm suffering from and i can't cope with it anymore!!!! Doctors that i've seen just aren't listening to me and my symptoms. They tell me it's stress, it's migraines, it's this, it's that but nothing has helped me.

I live on my own so I can't really describe to anyone the pain I am in most of the time. I'm a primary school teacher and physically cannot teach the children when a headache comes on. it is really affecting my life and I don't know what I can do to stop it/ or ease it.

I'm currently in the 4th week of an episode now and suffer 3-4 headaches a day - they are worse first thing in the morning. The pain stays for most of the day butI can go for maybe a year without anything!

can anyone give me some advice on what I should do to be heard by doctors and to be formally diagnosis? Should I go to hospital when a severe headache comes on? Is there anything I can do myself to ease this pain or will I just have to suffer this in silence?please help!!! I'm in need of some help and support cause no-one else seems to want to listen and doesn't understand!

Title: Re: Help!!!!!!
Post by Jonny on Sep 15^th, 2006, 5:29pm

Print every thing on this site that describes your symptoms and show it to your doc.

Click here for some tips on relief at home.

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=general;action=display;num=1157499673

Title: Re: Help!!!!!!
Post by BB on Sep 15^th, 2006, 9:29pm

Hi Nuala,

There are many members here from England, I dont know how far they live from you but they can certainly recommend some good doctors for you to see, I am sure they will come on a bit later to help you.

If you are going to the hospital, do as Jonny said and bring all the printed information with you.

Have you got a camera or even better a video camera, see if you can videotaping yourself during an attack ( even just for a few mins ) and/or take a photo of yourself after an attack when you have the teary blood shot eye, the droopy eyelid and the constricted pupil to prove your point.

Also if the doctors you have seen said its migraine, ask them to prescribe you some Imigran ( imitrex ) injections or nasal spray to use in the mean time.

Best of luck and sending you painfree wishes.

Annette

Title: Re: Help!!!!!!
Post by chopmyheadoff on Sep 16^th, 2006, 6:52pm

welcome nools - sorry you had to find us but glad you did.
your story rings SO TRUE to me and many others here i bet.
i went for 7 years suffering just like you describe. my doc said it was migrane / tension headache etc etc .
i thought i was going mad and in the end i just went into the doctors and DEMANDED that she refered me to a specialist.
she did immediately and i was refered to DR SILVER in WARRINGTON GENERAL HOSPITAL. This was the best thing i could have hoped for.

he saw me within a week. he is a cluster headache specialist who is friends with Prof.Goadsby from londons institute of neurology.
Prof Goadsby is largly recognised as the leading expert.

he diagnosed me straight away and i have been pretty much pain free ever since.
I take verapamil every day as a preventative,
i also have IMIGRAN auto injector kit. this kills the suckers instantly.

The first time i had a jab of imigran and my headache just vanished completely i cried for about an hour with joy.

i could finally do something to get my life back. and i have.
you can too. your not far from me, i work in manchester. if you have trouble getting refered let me know

believe me, although it might feel like theres no relief out there .. there really is.

and then youve got all the support from all these crackpots on here !!! :) :) :D

Title: Re: Help!!!!!!
Post by calisto on Sep 16^th, 2006, 10:43pm

Hi Nuala,

Welcome to the most usefull website on the net!!

Your story sounds very similar to mine.My own cluster headaches were self diagnosed at first.I was mis-diagnosed for the first 10 years until i came across the symptoms of cluster headache.Isnt it a relief to know youre not alone!!!Doctors can be very unsympathetic,and at a time when you really need to speak to someone who you think should know.I bet you've swallowed quite a few sudafeds trying to get rid of the pressure in your sinuses eh?

As you were advised by jonny - print as much usefull information you can off this site and take it to your doctor.You need to DEMAND to be sent to a neuro.Its much harder for your doctor to refuse to prescribe a certain drug if its been prescribed by a neurologist.Some docs wont prescribe O2 (a good abortive) unless a neuro has first (mine wouldnt!).The imigran injections you've been recommended on here are AMAZING they can get rid of your pain in minutes.And dont be put off by the thought of an injection - you just load the injector (looks like a pen) push it against your leg and push the button on top,its that easy!!Trust me,after a few times you'll be following the imitrex (what our usa cousins call imigran) tip on the left and making your medication stretch further!

In my experience Dr's can be a little resistant to prescribing imigran because its very expensive (u just pay normal prescription chrges) but dont be fobbed off ok.Just keep telling yourself that you are entitled to pain relief.Why should you suffer just because the meds are pricey?Thats why in the uk we have the nhs!Whenever i go to the docs i go armed with a small booklet of info ive printed off.After a good read of the stuff on here You'll soon know more than he does about our condition!Sounds odd but you will!

No doubt you'll be contacted by LeLimey (helen) She will help you enormously.I cant tell you how much she helped me,She's saved me so much pain.Ive had clusters for 16 yrs and until 2 weeks ago i knew nothing about the little tips to ward off the beast!!

Experiment with hot and cold.Ice packs tend to make mine worse,but hot things are fantastic.I use one of those things you heat up in the microwave an put round your neck (you know the things?)just heat it up and lie it across your eye, temple and top of your ear. i find they mold to your face better but a hot water bottle will work to!I find excercise works well to but for some its a trigger and theres only so many miles you can do on an excercise bike!!Oddly enough RedBull works well too (another tip from helen,Thank you again!) Pour a can into a glass and neck the lot back in one when you first feel the beast in the back off your neck or at your temple and it'll ward off a lot of the hits (tastes nice but gets you a little wired if you have to many.But the attacks make you that tired it helps to wake u up!)

Hang on in there kidda,you're not alone anymore!!
Dont worry ,helen (LeLimey) will nag u much worse than the clusters to get help!!

Show that doc u mean buisness!!

Simon.

Title: Re: Help!!!!!!
Post by nools on Sep 17^th, 2006, 10:52am

thanks guys for all your advice. I can't tell you how much better I feel (emotionally, not headache wise!!!) I'm going to try some of your ideas to help out when i get another major attack, until some crackpot GP will actually listen to me! I'm normally not the type of person to demand things but the way I feel now I think I will actually gag and tie up my GP until they refer me to a neurologist. I will keep you posted with any knew developments. I'm so glad i found this site! I honestly thought (naively) that I was the ONLY one in the world with pain like this and now the comfort I get from knowing I'm not alone is fantastic!!

nools x

Title: Re: Help!!!!!!
Post by davyp on Sep 17^th, 2006, 11:34am

Hi Nuala, :)

You have been given some fantastic advice already and the 1 thing that i will add is that while it is fantastic to find out you are not alone by finding this site , the feeling that you get when you meet your first cluster head face to face is beyond words.
There is a meet and greet coming up in Blackpool aranged by LeLimey (Helen) and i can assure you that Helen is certainly 1 of the nicest people that you could ever meet and has helped many people new to Ch get all the info they need and will do everything she can to help.
Details of the blackpool meet:
16th October Blackpool: Brewsters, Yeadon Way, Southshore, Blackpool, Lancs FY1 6BF. From J32 – M6 follow the M55 to the end. Continue along carriageway following signs for Blackpool Main Car Parking. Brewsters is on left hand side. Turn left for entry at first mini-roundabout.

I am sure Helen will be along at some point to welcome you.

dape

Title: Re: Help!!!!!!
Post by chewy on Sep 17^th, 2006, 11:34am

Hi Nools

Ever heard of this guy?

Prof. Peter Goadsby

Title: Re: Help!!!!!!
Post by Richr8 on Sep 17^th, 2006, 12:27pm

on 09/15/06 at 17:18:45, nools wrote:

can anyone give me some advice on what I should do to be heard by doctors

Advice. Keep shopping till you find one that gets it. Unfortunately, even when thy do get it, there are no miracle cures, hbut atleast a good one will listen and work with you.

Best,

Rich

Title: Re: Help!!!!!!
Post by Edski_1 on Sep 17^th, 2006, 12:36pm

on 09/17/06 at 12:27:21, Richr8 wrote:

Advice. Keep shopping till you find one that gets it. Unfortunately, even when thy do get it, there are no miracle cures, hbut atleast a good one will listen and work with you.

Best,

Rich

And even then you have to fight to be heard. My GP understands and gave me a zomig script for 18 a month with 5 refills. I was AMAZED at the generosity. I told them that I might be starting a cycle, only had two old zomigs left.

Got hit yesterday and the wife tried to go across the street to fill the script that we had dropped off the day before. Insurance will only authorize 6 a month...by the time I got the six it was too late to take one for that HA. But...

I'm expecting soon to reach a statge of two a days in this cycle. 6 zomigs for a month will not help...my Dr understands, but now I have to call them, get them to call the insurance company, and hope the next time I need these magic pills I can get at least 9...basically hope the insurance company listens to my doctor, and the pharmacy get's the message. Royal PITA.

So it's not just the Dr you have to worry about - the insurance and phamacy worlds are both barriers to be overcome.

Title: Re: Help!!!!!!
Post by Bob_Johnson on Sep 17^th, 2006, 12:46pm

http://WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.

Title: Re: Help!!!!!!
Post by nools on Sep 17^th, 2006, 1:48pm

Prof Goadsby is a specialist isn't he? Have been told about him. anyone know where he is based in England? Chop told me of a specialist at warrington general too. Can I ask to be referred to him by my GP?

Title: Re: Help!!!!!!
Post by nools on Sep 17^th, 2006, 1:51pm

Thanks for the invite Dape to the meet and greet. Don't have anything planned for then. would be good to meet other fellow sufferers and Blackpool isn't exactly a million miles away from Manchester is it? No excuse!!! Thanks again for support and kind words.

Title: Re: Help!!!!!!
Post by davyp on Sep 17^th, 2006, 2:39pm

on 09/17/06 at 13:48:34, nools wrote:

Hi Nuala,

Prof Goadsby is based at the institute of neurology in london and is the top man for CH in britain.
You can ask your GP to be refered to a neuro who specialises in headache conditions, the only prob is they usualy try to fob you off with the neuro at your local hospital and 9 times out of 10 they dont have a clue about CH so it would be worth trying to get either a referal to the neuro at warrington as recommended or a referal to the institute of neurology in london.

Helens meet and greets are an open invitation and if you drop her a msg by pm or a small post on the meet and greet thread she will get back to you with times and the like.

:) Dape :)

Title: Re: Help!!!!!!
Post by Bob_Johnson on Sep 17^th, 2006, 2:47pm

Goadsby: http://www.ion.ucl.ac.uk

Title: Re: Help!!!!!!
Post by chopmyheadoff on Sep 19^th, 2006, 4:06am

nools - yes you can request your GP to refer you to DR Silver as your in the catchment area for his clinic.

i cannot recommend him enough

seriously, all of the problems that people talk about with their neurologists/doctors on here - i have NEVER had a problem with him and my life has turned around since i met him.

good luck

Title: Re: Help!!!!!!
Post by calisto on Sep 19^th, 2006, 6:36am

Hey chop do you rekon i could get a referal to him? i live in cannock in staffordshire.My neuro just made me walk like a penguin and touch my nose a few times!!

"oh yes you have clusterheadaches!" she said

"No shit sherlock!" i thought,that much i know!!

I'd had it at least 12 years by then!!

Simon

Title: Re: Help!!!!!!
Post by chopmyheadoff on Sep 19^th, 2006, 6:42am

on 09/19/06 at 06:36:40, calisto wrote:

lol i dont know mate, it may be worth an ask- or at least you could ask for a neuro who specialises in headache.

i did the penguin test too - this is just to determine if you have any underlying brain problems.

if your neuro has oficially diagnosed ch then are they not giving you the meds you require ???

Title: Re: Help!!!!!!
Post by calisto on Sep 19^th, 2006, 6:52am

She prescribed the verapamil and o2 but ive started taking propranolol inbetween bouts.

Im a hairdresser and the prop stops my hands from shaking.Which,as you can imagine,tends to put the wind up folks.And i find the prop makes me feel much more "centered".So im stuck between a rock and a hard place as far as the prop and the verap go.

I will say that im really struggling to find something to replace the varapamil.My o2 is being delivered tomorrow,i hope it works my legs are begining to look like pin cushions from all the imigran injections.I aint started leaking yet though so i s'pose thats a bonus!!

[smiley=laugh.gif]

Title: Re: Help!!!!!!
Post by LeLimey on Sep 19^th, 2006, 9:32am

Hi nools,
I'm sorry I'm so late to this thread but I see you've been well looked after! I've got a ch'er from here staying with me at the moment and I have more arriving tomorrow and I've just got back from a regional meeting in Somerset! I know.. I'm making excuses! ;)
I'm going to IM you my phone numbers, I'll help in any way I can. There is a fantastic doctor I can recommend in Warrington called Dr Silver, ask to be referred to him.
You're not alone okay? We'll help as much as we can
Helen

Title: Re: Help!!!!!!
Post by nools on Sep 20^th, 2006, 4:25pm

Hey people,

Just to let you all know that I've been to doctors today armed with lots of printouts of CH symptoms and didn't even have to use them. I told him my symptoms and straight away told me they were cluster headaches!!I couldn't believe it. After all this time of being fobbed off, doctors telling me I was stressed, had migraine etc. (you all know what that's like) then this new doctor comes along and referres me to a neurologist straight away and prescribes me imigran injections. Just proves that there are some crap doctors out there who just can't be bothered to listen and some gems too!!I feel much happier today, especially now since I have some pain relief. Quick thanks for all your advice and kind words - I'm really glad I've actually found somewhere where i can talk openly about this without people saying "Go and have a lie down", "Take some paracetemol", " It's only a headache!!!!!" What the hell do they know?? Anyway - thanks again.

Title: Re: Help!!!!!!
Post by LeLimey on Sep 20^th, 2006, 4:45pm

Thanks for posting that Nools, its always lovely to hear about the good experiences!
Why don't you invite your doctor to join us at the regional meeting in Blackpool on the 16th? He could learn alot and gain a real insight!

Title: Re: Help!!!!!!
Post by nools on Sep 20^th, 2006, 4:59pm

Good idea Helen. I'll ask him. The more doctors learn about this 'disease' the less people will suffer and be mis-diagnosed like so many of us here. can you tell me if cluster headaches are hereditary? I only ask cause my gran told me today that when she was younger she got excruciating headaches like I describe! Don't know if it was CH's but thought you'd be the one to ask. And will CH sufferers like ourselves have them all our lives or can they just stop at any stage?

Title: Re: Help!!!!!!
Post by Barry_T_Coles on Sep 20^th, 2006, 7:53pm

on 09/20/06 at 16:25:44, nools wrote:

That is just so familiar, I took the advice of the people here and went armed with a folder full of CH info from this site and didn’t even have to open it.

It’s almost as if they look at the folder & think to themselves “ this person probably knows more about this than I do so I better get it right”

Ah the power of the pen.

Glad you’re on the right track
Kind Regards
Barry

Title: Re: Help!!!!!!
Post by TonyYZF on Sep 20^th, 2006, 11:16pm

Just want to say that I am very happy for you Nools.

And don't forget...if you aint crashing it, you aint riding it fast enough.

Tony