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(Message started by: tracey on Mar 30th, 2004, 3:04pm)
Title: help i have just been diagnosed
Post by tracey on Mar 30th, 2004, 3:04pm
hello, i am delighted to have found you, i have just today been diagnosed with either cluster headaches or paroxysmal hemicrania by a neurologist following years of what i have believed to have been awful eye aches and sinus problems and also following wisdom teeth extraction with no cures.  only to find these quite common on your website.  i am awaiting an MRI scan and have spent the last 6 weeks having a hell of a time thinking i had a brain tumor or something and endless trips to hospital and CT scan to be told today this is what i have.  After reading your site i understand these are common symptoms you guys suffered too.
Would love to talk to anyone who can help me understand a bit more...
Title: Re: help i have just been diagnosed
Post by thomas on Mar 30th, 2004, 3:07pm
Welcome aboard, there are lots of people here to help.  Be sure to check out the Ouch U.K. site, I'm sure one of our other wonderful Brits will be along with the website link. ;;D
Title: Re: help i have just been diagnosed
Post by Melissa on Mar 30th, 2004, 3:12pm
The website Thomas is talking about is at http://www.ouchuk.org   Welcome to the family, and I am truely sorry you are suffering with this head pain!  I hope you can find something that works for you!

take care,
:)mel
Title: Re: help i have just been diagnosed
Post by Superpain on Mar 30th, 2004, 3:37pm
Welcome!
Well, from what you say, this is almost good news!
At least you don't have a brain tumor!
Your teeth are OK, and there's nothing wrong with your sinuses!

But alas... Now you know you have clusters... Or CPH.
If it's cph, it is treatable with Endocin (endomethacin).
If it's clusters, well... :'(
At least you found us here. And you already know pretty much what to expect. The shitty part is your probably going to deal with them for the rest of your life.
But the great part is here, you can arm yourself with all the knowledge of thousands of sufferers and doctors to hopefully get the right treatment! :D

Stay strong for there is hope! Read up all you can! Your best weapon is being an informed patient! We all hope you find your relief.
Title: Re: help i have just been diagnosed
Post by TxBasslady on Mar 30th, 2004, 5:49pm
Welcome to the board, Tracey.

Lots of info located in the links to the left.

Glad you found us.  Sorry to hear that you have been suffering.

Hope you find the meds you need.  Stay in touch, and let us know how everything comes out.

PF vibes,

Jean
Title: Re: help i have just been diagnosed
Post by echo on Mar 30th, 2004, 5:56pm
Saddens me to read that yet another person has been attacked by the beast.  Glad you found us, sorry you needed to.
Title: Re: help i have just been diagnosed
Post by t_h_b on Mar 30th, 2004, 5:59pm
Sincerely, I hope hope you have CPH as it is easier to treat.  If you have CH, welcome aboard!
Title: Re: help i have just been diagnosed
Post by Pegase on Mar 30th, 2004, 9:51pm
Welcome...;-)

If you need something just asked...

Pegase
Title: Re: help i have just been diagnosed
Post by pubgirl on Mar 31st, 2004, 12:48am
Tracey

I'm sorry I'm a bit late picking this up. Welcome to clusterland, and I hope you find your way over to OUCH UK as well where you will find many other Brits, probably even ones local to you who are very knowledgeable and very friendly. We have regular meetings and conferences (next one in London in June where one of the leading world experts Professor Goadsby is the key speaker)
Via that site you  can also volunteer to be part of trials (currently 02 and Zomig nasal) at The London Institute of Neurology where you can also be treated by Prof Goadsby and his team.

The diagnosis of CH or CPH is an odd one although without knowing your symptoms it would be hard to say why it might be that your neurologist cannot decide.

There truly is a very clear diagnosis path here (aside from the symptoms of course, which are different in quite a few aspects) which I am very suprised your neurologist has not immediately tried.
Superpain alludes to it.
If there is ANY suggestion that someone is suffering from CPH , Indomethacin should be prescribed as it is 100% EFFECTIVE FOR CPH!
Many neuros prescribe it as almost a matter of course to rule out CPH. Unless there is any medical reason not to try it, it is almost criminal not to get you to do so as you could be pain free incredibly rapidly.
If it is CH (and I hope for your sake not) the solution is not quite so simple.

I wonder what they are giving you for pain relief at the moment? Hope it is working for you.

Keep posting and hope to see you on the UK message board (you don't have to be a member of OUCh, jsut register, then you can decide whether you want to join or not later)

Wendy
Title: Re: help i have just been diagnosed
Post by pubgirl on Mar 31st, 2004, 12:51am
Hope the extract below might help

PAROXYSMAL HEMICRANIA (PH or CPH)

Paroxysmal hemicrania (PH), like Cluster Headache (CH), is characterised by being normally strictly unilateral, short, excruciating headaches that occur in association with cranial autonomic features. PH differs from CH mainly in the higher frequency and shorter duration of individual attacks, though there is a considerable overlap in these characteristics. However, unlike CH, PH responds in dramatic and absolute fashion to indomethacin, thereby underlining the importance of distinguishing it from CH. The attack profile of PH is highly characteristic. The headache is strictly unilateral. The pain is most often centred on the ocular, temporal, maxillary, or frontal regions; less often, the pain is centred on the neck, occiput or the retro-orbital regions. The pain is typically excruciating in severity and described as a throbbing, aching or boring sensation. The headache usually lasts 10–30 minutes, but can range from 2–45 minutes. It has an abrupt onset and cessation. Photophobia and nausea may accompany some attacks though vomiting and phonophobia are rare. During episodes of pain, some sufferers prefer to sit or lie still while the others pace about constantly. In PH the individual attacks occur at a high frequency. Typically, patients have more than five attacks daily though the frequency of attacks shows a considerable fluctuation, ranging from 1–40 daily.


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A good clinical history by your GP or a detailed examination by a Neurologist and then a therapeutic trial of indomethacin are all that are necessary to make a diagnosis of PH. As a relatively high number of symptomatic cases have been reported, an MRI scan of the brain should be routinely performed in all patients with PH. The therapeutic trial of oral indomethacin should be initiated at 25 mg three times daily; if there is no or a partial response after 10 days, the dose should be increased to 50 mg three times daily for at least 10 days; if the index of suspicion is high then the dose should be further increased to 75 mg three times daily for 10 days.


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Complete resolution of the headache with an appropriate dose of indomethacin is prompt, usually within 1–2 days of the effective dose. The typical maintenance dose ranges from 25–100 mg daily, but doses up to 300 mg daily are occasionally required. Skipping or even delaying doses may result in the prompt reoccurrence of the headache. In patients with EPH, indomethacin should be given for slightly longer than the typical headache bout and then gradually tapered. In patients with CPH, long term treatment is usually necessary; however, long lasting remissions have been reported in rare patients following cessation of indomethacin, hence drug withdrawal should be advised at least once every six months. Gastrointestinal side effects secondary to indomethacin may be treated with antacids, misoprostol, histamine H2 receptor antagonists, or proton pump inhibitors and should always be considered for patients who require long term treatment. The mechanism behind the absolute responsiveness to indomethacin is unknown. It appears to be independent of indomethacin’s effect on prostaglandin synthesis, since other NSAIDs have little or no effect on PH. For patients who cannot tolerate indomethacin one faces a difficult challenge. No other treatment is as consistently effective. We, and others, have tried COX-2 inhibitors and verapamil with limited success

Sources: P.J Goadsby, M .Matharu (et al) - Journal of Neurology, Neurosurgery & Psychiatry
Title: Re: help i have just been diagnosed
Post by Filbert on Mar 31st, 2004, 2:53am
Hi Tracey
             Welcome to the board! Sincerely hope that you haven't got CH but if you have I hope you find some relief soon! Keep posting and let us know how you get on.
       Filbert
Title: Re: help i have just been diagnosed
Post by sandie99 on Mar 31st, 2004, 8:14am
Welcome aboard, Tracey!

It's horrible that you have to suffer from CH, but without a doubt it helps to finally know what you have.  :)
And it's wonderful that you found this site. Surf around and you'll find so much information and here's always other sufferers to talk to.

Best wishes & loads of PF days,
sandie99
Title: Re: help i have just been diagnosed
Post by pubgirl on Mar 31st, 2004, 1:30pm

on 03/31/04 at 08:14:14, sandie99 wrote:
Welcome aboard, Tracey!

It's horrible that you have to suffer from CH, but without a doubt it helps to finally know what you have.  :)



Sandie

She says her neuro doesn't know if it is CH or CPH.
So she doesn't know what she has yet.

But at least it's not a brain tumour, the fear most of us have before we are diagnosed Tracey. It is a great weight off when that is confirmed

Wendy
Title: Re: help i have just been diagnosed
Post by tracey on Apr 5th, 2004, 3:31am
Thanks for all your warm welcomes and words of encouragement.  i have been started on indomethacin but i have to say it is having no effect so the Neurologist feels that i must have CH. he says he is reluctant to diagnose this because it is rare in females but my symptoms tally and that the reason i have so many headaches could be to do with rebound from analgesia.  Have had these headaches for 6 weeks now, the night-time is the worst i dread going to bed for fear of the pain that will awake me.  My husband and kids 4 and 1 yr old look at me like i am a demented psycopath.  will be seeing neurologist again but not til after MRI god knows when that will be.  I am seeing a pain consultant tomorrow hopefully he will help.  please tell me it gets better...................
Title: Re: help i have just been diagnosed
Post by pubgirl on Apr 5th, 2004, 3:56am
Tracey

It is really old hat thinking that it is rare in females, it seems now it is only "rare" because the women were being misdiagnosed, often with migraine.

I hope the pain clinic helps, but beware, they specialise in pain management of all conditions and often lean towards painkillers and opiates, most of which are useless for CH.

You need them to be informed about CH and the best treatments, most of which are ones which act on the mechanisms causing the pain, not the pain itself e.g. triptans and 02 for abortives and Verapimil, Lithium, Methysergide etc for preventives.

It really is worth taking the Cluster Headache article from the OUCH UK site with you, as most Doctors are very impressed by the fact it comes from The London Institute of Neurology, and tend to be less dismissive of the information as a result.

Good luck

Wendy
Title: Re: help i have just been diagnosed
Post by tracey on Apr 16th, 2004, 3:53am
 Well it is definately Cluster headaches that i am suffering, like many of you i have now started oxygen therapy which does seem to be working it ceases a headache after 10-20 minutes which is fantastic, but it is now 7 weeks since i got the first one and i am waiting for them to stop.  I feel great that there are people on this site who are there for help and support, i think you are all wonderful and am just sad that we all have to suffer this crap.  Does it get better, i am sad that so many of you have suffered this for years and feel lucky that up to now they haven't been to bad, but talk about mother of headaches. i now find myself getting cross when people say that they now what it feels like because they had a bad headache the other day................  Well they are welcome to one of my headaches.  Thankyou for your support, life feels a bit better......
Title: elyeRe: help i have just been diagnosed
Post by Filbert on Apr 16th, 2004, 8:46am
Hi Tracey
            Glad you're feeling more positive now. In answer to your question "does it get better?"there is no definite answer unfortunately.Most people are episodic and can have gaps ranging from weeks or months or years. A number of people are chronic [about 15-20% I think] although some chronic sufferers can become episodic and vice versa. There is some evidence that episodic sufferers can have longer gaps between cycles as they get older and I'm praying thats the case with me.Nobody has ever been "cured" for certain as far as I know although a few people have gone for years and years without going into cycle.Hope yours go away soon and stay away for a very long time!!!

                  Filbert
Title: Re: help i have just been diagnosed
Post by christinenscott on Apr 16th, 2004, 11:35pm
Hello Tracy,

Warmest welcome to you.

My husband was also diagnosed with CH and had the worst time ever for about 2 months. Our neurologist also spoke of rebound headaches and it seems that this may be a HUGE part of his problems. He took aspirin, tylenol, ibuprofen and alieve every day for years for tension headaches. The neuro took him off any and all pain meds and in a few days his headaches tapered off and went away. Please research the OUCH web site about this.

So many of us here truly understand what you are going through. Especially about the nights. But keep in mind, it will pass, it really will.  Keep us all up to date on how you are doing and don't stop looking for a doctor until you find one with experience in this. Good docs are out there.

From California's Central Coast,
Christine and Scott
Title: Re: help i have just been diagnosed
Post by tracey on May 4th, 2004, 10:20am
:-[ Just returned from my MRI scan, things are still bad, feeling mighty frustrated, now been 12 weeks since this living hell started.  Anxiously waiting for the day it wil stop and I can have a headache free day..........  Begining to loose hope of this happening.  I still haven't found anything that really helps.  Oxygen is only effective during some attacks not all the time.
Knowing you guys are here helps.  Thanks.
Title: Re: help i have just been diagnosed
Post by Woobie on May 4th, 2004, 10:50am
Welcome Tracey -
Hope you get some relief and figure out whatcha got.  

Headaches suck

tina
Title: Re: help i have just been diagnosed
Post by welshdan on May 4th, 2004, 6:50pm
Tracey, Like everyone else here, I am so sorry you have CH...The killer called a headache.
Be sure you have it though....how old are you?  When did your first attack occur ?  Does it fit all the symtpoms described here?  Does it 'really' want to make you hurt yourself in other ways to stop that 'specific' pain ?  CH, to me, seems the ultimate extreme of pain.  However, you getting annoyed at people who talk about 'headaches' seems to be a major symptom of CH !  ;-)  (especially those who say, 'I had one of those once')  
I'm a newbie here and this site has helped me immensely, as I come out of the worst bout since I first got this crap (13 yrs ago).  
Welcome aboard and commiserations.  You CAN get through this though.  Be strong.  Make sure those around you understand how BAD this is.  It isn't just a HEADACHE !!!!!
Dan
Title: Re: help i have just been diagnosed
Post by OneEyeBlind on May 4th, 2004, 7:32pm
Tracy if O2 isn't stopping your headaches effectively all the time, ask you doctor for Imiterex (Imigren, I believe it is called in the UK).  The shots are great and abort an attack for me in about 3 - 5 minutes.  It makes life bearable when you get hit really hard and fast.  

Best of luck and welcome to the board !!!!!!
Title: Re: help i have just been diagnosed
Post by tracey on May 13th, 2004, 6:24am
:D Just to say a big thanks you guys.  knowing that you are there for help and advice helps more than you know...  Nobody judges you here which is great if i ever hear of anyone who is unfortunate to suffer from this hell i will definately recommend them to this site.  
I am awaiting to see my GP to try and get this Imitrex.
I guess that i am one of the lucky ones who has got a good GP and Neurologist, of course they had to rule out everything else first, but now they know that it is the dreaded Cluster they are excellent, my GP doesn't know anything about it i am the first on his books.  It helps me to take stuff from this site for recommended treatments and of course from the Ouch website.  i hope i can keep pestering you guys for help and maybe when i get used to the hell i can help others too.
Thanks again from a fellow Cluster Head...
Title: Re: help i have just been diagnosed
Post by pubgirl on May 13th, 2004, 7:34pm
Tracey

Make sure they don't fob you off with the Imigran pills, they are too slow. Make sure you get either the nasal spray or the injectible versions.

Wendy
Title: Re: help i have just been diagnosed
Post by tracey on Jun 1st, 2004, 10:36am
Hello again.
i have now started on the imigran injections which are fantastic and are the first thing i have tried which has stopped this pain.  Only problem is i have a GP whom says that they are to expensive and will only give me two at a time which is no good as i can only take them when the attacks are bad and i can't bear it any more, as I am frightened I wont have any left when I need it most.  Have tried to get more today but will only issue two every month how crap is that........  How do i get him to understand how bad these are and that I can't bear the pain.  He seems to think it is like a normal run of the mill even though i have had confirmation that it is Cluster headaches from the Neurologist.  

Whoever discovered the Imigran is fantastic..........
Title: Re: help i have just been diagnosed
Post by OLLY on Jun 2nd, 2004, 9:27am
just started with mine again after 10 years tracey stay tough and smile it helps i too thought i had a tumor not nice xx
Title: Re: help i have just been diagnosed
Post by pubgirl on Jun 2nd, 2004, 10:59am
Tracey

Time to be firm with your doctor and tell him 2 things. The recommended prescription of 2 Imigran jabs at a time is because they were first developed for migraine sufferers who typically will have single attacks, well spaced out. Explain to your GP that this does not apply to CH and that multiple attacks mean that you need more than two prescribed at a time. Tell him if he doesn't prescribe more than this, you will be making an appointment every day to see him for another prescription, which would not be good for his waiting lists.
The 2nd thing to tell him is that to withhold correct treatment on the basis of cost is unethical and that if he does so, you would be forced to make a complaint (which you would hate to do as he is such a nice man ;;D )

You will still need your 02 prescriptions running as well though as if you get more than two attacks in 24 hours, you can't take more Imigran so it is useful to have both. On a personal note I use 02 at 12l/minute and if it fails, which it occasionally does, I then use my Imigran.

Keep us posted!


Wendy

Hello Chris by the way! Will we see you at OUCH UK?
Title: Re: help i have just been diagnosed
Post by tracey on Jul 1st, 2004, 4:10am
Thank you all for your help, I am settling down with the Imigran injections, although still struggling to get more than 2 at a time.  Things feel a lot brighter now I have found something that works.  Have took all of your advice on board which has been wonderful.  It is so good to know that there are people to turn to for advice.  I get more help from this site than from my GP.  Thanks again.
Title: Re: help i have just been diagnosed
Post by BobG on Jul 1st, 2004, 4:44am
Too bad your GP is a jerk and ignorant about clusterheadaches.
On the left side of your screen is a 'imitrex tip' button. Click it. It can help you stretch each imitrex injection to 2 or 3.
Many people here are taking 2 or more imitrex injections a day.


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