Hi everyone,
Am I glad to find you lot!! I don't feel quite so alone now!!  :)

About 3mths ago started having these terrible headaches.....ended up going to Drs on many occasions only to be told that I either had a virus or a sinus infection(was even given antibiotics) I kept hassling dr to see Neuro but she kept putting it off and then when she did it eventually she referred me as non urgent so didn't get to see the Neuro until Dec 22nd. By this time I had suffered the full throes of CH for about 10weeks although the hits were becoming further apart.
Now have to wait for the New Year to see my Dr to talk about what to do etc. Seems a bit too late now as havent had a big hit for about 9days now although I do still have a lot of tenderness in that area and mild headaches most of the time....is that normal?
What happens now? Will I have to take drugs now or not do anything until the next episode comes along?
My CH used to appear twice a day....sometimes three......in the early hours of the morning anytime from 3am til 7am, another late morning, next one at 4pm and very occasionally late eve. I even used to go sometimes 1-2 days with nothing and used to get so excited that it had gone away!!
Will there be a chance that this could be only a one off or are the chances stacked against me that this is just the begining? What seems to be the average time inbtween episodes....weeks,months or years?
I find this all pretty scary that it's something I will just have to live with for a long time  :'(
Still glad I have you lot at hand
Thanks for listening
Chantal

Hi Chantal and welcome.

 I am sorry to say this but there is no such thing as only ONE cluster cycle.  9 days of being pain-free is a good omen, but if this cycle is over for now, they most likely will be back.  Some episodics only go for a few months between cycles and some go for several years.  There is no way of telling which will be your case.


Please read all the links to the left of here so that when you do get in to see a Dr.  you will be armed to the teeth with knowledge about this condition.  Especially read any and all links that pertain to oxygen as an abortive.  Print it out if you must to take with you.


Ask questions here about anything and everything.  None of us are Dr.s but between us all we have 1000's of years of ecperience in dealing with CH.
 I've been chronic for almost 22 years now.  Even my own Dr. says I know more about CH than he does.  THAT isn't always the case and I am an exception.  Many more folks have Dr.s who are,  to say the least....stubborn about prescribing 02, say things like "you're a woman, so it must be Migraines"   etc. etc.

Again welcome to our corner of the world where we all know and understand what you deal with.

Linda

Welcome Chantal.

I'm trying to answer some of your questions...


Quote:

Seems a bit too late now as havent had a big hit for about 9days now although I do still have a lot of tenderness in that area and mild headaches most of the time....is that normal?

Yes this is pretty normal - we usually refer to these as "shadows".
Strong coffee or energy drinks usually help to get rid of them.


Quote:

What happens now? Will I have to take drugs now or not do anything until the next episode comes along?

With episodic CH you usually only use drugs when in cycle.
Make sure to ask your doc about oxygen therapy. It is safe, cheap and effective.
Make sure to READ, READ, READ and ASK, ASK, ASK especially since your doc seems to be clueless.


Quote:

Will there be a chance that this could be only a one off or are the chances stacked against me that this is just the begining? What seems to be the average time inbtween episodes....weeks,months or years?

The chance that this was the first and only cycle is minimal so better not put your faith in it.
As to the average time between cycles - there isn't one. Some have weeks or months, some years and others have no break at all.


Quote:

I find this all pretty scary that it's something I will just have to live with for a long time

We know that you are scared, however this won't kill you and after some time you learn to live with it.


Quote:

Still glad I have you lot at hand

Glad you found us!

Oliver

Thanks for replies so far.
Thats what I guessed that it wasn't a one off.....just wishful thinking!!  ;)
Lets just hope I have a nice long break til the beast pays me a visit again.....
I presume it's normal to feel generally unwell while the beast is in the area?! Even tho I havent had him visit me for about 9days now I still feel very run down and 'out of sorts'
I will be seeing Dr next week and will be well armed with plenty of info for her.  ;D
I am yet to have my CT scan....just procedure to check all ok. Should be getting it done within next 3 weeks.
Chantal

Chantal wrote on Jan 2^nd, 2009 at 2:23pm:

I presume it's normal to feel generally unwell while the beast is in the area?!

Yes, that's normal.

Oliver

I suppose the shadows can continue indefinitly? They are very annoying sometimes....that feeling that they are going to turn into the real thing at any time......
I hate coffee...have never drunk it and don't think I could either! Will get some Red Bull in I think.....does that work for shadowing too? I seem to have a constant shadow....can't say it really truly ever goes away though has different levels of pain. I don't take any painkillers for shadows.
When I see my Dr next week will I need any meds while having shadows?

Thanks
Chantal

Yes, they can last a long time.
Energy drinks even work better due to the Taurine in them, O2 would work too.

Shadows are a sign that the beast is still there, so meds won't hurt.
If they help is a different question.

Oliver

Hello Chantal, welcome to your new family.  :)  There's lots of support here, so try not to be scared; it's cold comfort, I know, but CH won't kill you.  ;)

First, make contact with your most excellent support group:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Start learning: good first read....

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
--------------

Print both of these lists of treatments and use to guide a discussion with the doctor at your next visit.

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
(Thanks to "cluster" for link.)

Hi Chantal,

It seems that you're one of the lucky ones, diagnosed in record time - 3 months.


Quote:

About 3mths ago started having these terrible headaches.....ended up going to Drs on many occasions only to be told that I either had a virus or a sinus infection(was even given antibiotics) I kept hassling dr to see Neuro but she kept putting it off and then when she did it eventually she referred me as non urgent so didn't get to see the Neuro until Dec 22nd.

The last I heard - and these are PG's words not mine - the average time for getting a diagnosis is down to 5 years. :o :o :o :o   that was in 2007.  

If you can find the time, why don't you (as Bob Suggests) get in touch with OUCH(UK) Give the Helpline a call 01646 651979 and have a chat with a fellow sufferer/supporter. They are not doctors or neuro's but they are trained and have a wealth of knowledge of CH. Leave your number and somebody will get back to you.

Thank you Dyno, good information....have just phoned and left a message so hopefully will get a call next week!

Quote:

hopefully will get a call next week

It should be sooner - if you're available.

Well in England very few people work on saturday and sundays and it's been New Year too so thats why I wasn't expecting to hear anything til Monday!! Gave my mobile number so they can get me anytime.
When you said 3mths was a record time I had to laugh as when I was trying to get my diagnosis I hadnt found this website and I thought it was taking forever to get someone to believe me about what I was going through but you are right 3months is record time!!!!
The beast was trying to raise it's ugly head most of last night.....just shadows but very uncomfortable and I was very restless and not much sleep. Still have a pain above right eyebrow....annoying rather than very painful. Been like that for last 10days.

Hi Chantal and welcome to the board!

I very rarely have big hits (over 6 or 7 on the scale), but have shadows just about every day. Just like you're describing - the neck ache, the burning eye and my teeth/eye nerves tingle (that's the only way I can describe it). When the shadows pick up a bit, I find an ice pack helps on my face and eye, along with a red bull. If you're not keen on that, you can buy an energy drink in Tesco called V. Got a bit of a better taste than red bull and it's always nice for variety, right?

Best of luck. Keep us updated with your progress.

Em
x

Thanks Em for that....going to Tesco later to see if I can find it!
I'm shadowing quite a bit at the moment and finally have my Drs appt tomorrow.....that is when I find out if I have a clever clued up one or clueless!! Am praying she knows plenty about it lol
Does oxygen help at all when you are shadowing? Even though I hope I'm at the end of my cycle do I still push hard to get O2 asap?
Chantal[edit][/edit]

Chantal wrote on Jan 5^th, 2009 at 3:52am:

Does oxygen help at all when you are shadowing? Even though I hope I'm at the end of my cycle do I still push hard to get O2 asap?

Yes, O2 helps with shadows and yes, push hard to get it asap.

Oliver

Chantal wrote on Jan 3^rd, 2009 at 4:28am:

Thank you Dyno, good information....have just phoned and left a message so hopefully will get a call next week!

Hi Chantal
I live in the UK - check your messages for my phone number if you just want to chat/question  [smiley=gossip.gif]
sheena