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Pauline

(Member)
From: Waitara
3 total posts
Not currently suffering :D
Hi,
I am a new member to this site and only came across it last night as my daughter has had headaches for the past 5 days and my husband found some information for her and it quoted Headaches Australia so I did the Google on it and found this site.

I was diagnosed with CH 6 years ago and after stuffing around with GPs and even Neurologists gave up on getting help from anyone and suffered in silence (apart from the screaming and crying at home my family had to put up with!).

I thought I had gotten over CH after not having had one for 2 years and then 2 weeks ago I was hit with the "daddy of all CHs". I had to get my husband to take me to Emergency to try to get some relief. Alas our hospital emergency system needs some help.

Initially I was given oxygen but this didn't help and then I had to wait around for a few hours before seeing the doctor. During this time the pain increased dramatically to a level I have never had before to the point I was acutally vomiting from the pain.

Luckily the triage nurse saw the pain and vomiting and must have gotten permission to give me a Toradol 30mg injection while waiting for the doctor. This didn't help either.
Once the doctor actually saw me, he confirmed it was CH (doh!) and then gave me 100mg of Sumatriptan. I am unsure if this actually helped as my headaches normally last for about 6-7 hours so I don't know if it was the medication or they had acutally come to an end. He at least gave me a prescription for Sumatriptan tablets so when they occur again I have something.

I think I may be one of the lucky ones of the unlucky CH sufferers as I only get them in Jan/Feb each year (apart from the 1 year break) and only for, but for 6-7 hours and for 1 - 3 episodes in the period.

I have acceped my suffering, but am concerned for my daughter after her 5 days of headaches although she has only gotten a couple of the symptoms that she may also be on the path of CH. The doctor has given her a prescription for Tramadol as Nurofen and Panadine have not helped.

Does anyone know if CH is hereditary especially as I know that CH in women is less common then men. I really don't want my 20 year old daughter to have to suffer as I do,
Any information would be greatly appreciated and now I know of this site, I will be referring to regularly.

Keep up the good work guys
Pauline
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Pauline

(Member)
From: Waitara
3 total posts
Not currently suffering :D
Sorry, title should have said New Member AND is CH Hereditary
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Robby

(Member)
From: Brisbane
16 total posts
Not currently suffering :D
Hi,
Yes there is a gene involved in Cluster Headaches (called HCRTR2) which increases the risk in first degree relatives, eg children, siblings. (See www.23andme.com.) Your daughter's headache does not sound like Cluster Headaches so you should not worry about it. Your Cluster Headaches are quite unusual in lasting for 6-7 hours. I would be surprised if Imigran 100mg orally would work for a Cluster Headache given its severity and rapidity of onset, though Imigran 100mg often work in migraines.
Good Luck!
Kerry
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Dusker

(Member)
From:
769 total posts
Currently suffering :(
Hello Pauline and Daughter
Some great points raised all round here in these posts
First Pauline welcome, I hope you find some helpful information on the left.
Have just returned home and is a bit late here tonight so will follow up more tomorrow.
Heather
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Ben

(Member)
From:
327 total posts
Currently suffering :(
Hi Pauline,
I am very sorry to hear of your battles with headaches. Especially for younger people, I have had CH since I was about 4 years old (that we know of).

I am not a doctor or trained medical professional, but in the spirit of helping others on this site, I will venture an educated guess based on my own research and experiences. Remember to seek diagnosis and treatment from qualified and experienced medical professionals.

Firstly to your headaches and recent experiences with Emergency department treatment for CH. You report that you were diagnosed with CH 6 years ago. Whilst there are no confirmatory tests for CH there are a set of criteria that should be met in order to ascertain a correct diagnosis of CH. To me, your headaches sound very painful and intense, I am indeed sure they are very debilitating. I am not so sure that your CH diagnosis is correct. GPs are generally not very good at assessing CH. It is a specialist area.

What sticks out in my mind the most is the duration of your headaches (6-7 hours) which seems highly inconsistent with CH in my research and experience. CH episodes are usually shorter, my research indicates a range of statistics from many different sources that state duration of CH episodes at anywhere from 20 minutes to 4 hours maximum. With up to 8 attacks per 24 hour period. I have been known to have 3 complete episodes of approx 90 minutes each from start to end within this time frame of 6-7 hours. This is more like the classic characterisitics of text book CH. Although I would prefer not to dish out my own "armchair dignoses" to people - I would venture an educated guess that your CH diagnosis may me incorrect or swiftly/dubiously conducted by an inexperienced medico. Your type of headache sounds like an equally painful type of headache, though I could not speculate as to which exact one from my position.
Please see the I.H.S. diagnostic criteria in the links below.

I note that it is odd for a CH to last for so many hours, but have so few episodes in a calendar year. The ineffectiveness of Sumatriptan may also be another important point. You are right, after 6-7 hours, it would be very difficult to tell the difference between the administration of an effective abortive medication, or the headache running it's natural course and "Tapering off" by itself, as they do.
Some Sumatriptan literature suggests that the drug must be administered immediately at the onset of an attack, or the abortive effects of the medication may be greatly reduced. Or in my case - non-existent.

If I get onto the Imigran (Sumatriptan) injections or FDT tablets quick-smart, they work well. If I am delayed for some reason and cannot inject Imigran for 20 minutes after the onset of an attack, then it becomes far less effective for me.

Please refer to the forum thread on this site: "Accurate Consumer Medical Information (CMI) Drug Manufacturers Data Sheets" for some useful links to diagnostic criteria for CH, mainly these two links to the International Headache Society, that I have duplicated from my research here for you.

http://ihs-classification.org/en/

http://www.i-h-s.org/upload/ct_clas/ihc_II_main_no_print.pdf

In their defence - most Accident & Emergency staff are neither trained to deal with, nor aware of CH. I have spent many frustrating occasions in Emergency departments early on in my CH condition, trying to seek answers. This is not the place or time to get accurate diagnosis or treatment. I know this can be very frustrating, especially when you have presented mid-headache and no solutions are forthcoming. NIce to see a nurse attempting pain relief for you, but Tramadol will not touch CH. Have you tried soluble aspirin? Or been prescribed Indomethacin? Just some ides that have worked for others in your position...

Navigating the complexities of the health system whilst in acute pain (mid-attack) is often an alienating and self-defeating exercise. Despite your previous experiences with GPs and Neurologists, I would susgest presistence down this avenue. Perhaps a second and third opinion from a different "CH aware" GP who is prepared to refer you to a (PMU) Pain Management Unit for multi disciplinary medical care.

Pain units often have access to many angles of approach for your condition. My PMU at the Royal Adelaide Hospital offers me the direct services of: Neurology, Pharmacology, Physiology, Physiotherapy, Psychiatry, Psychology and many more, all in a patient focussed, clinical environment. They ask the right questions, offer many treatment options and liaise between different medical specialists to make sure that you get access to the care you need. These units are where the extensive experience lies.
Not down in Emergency dept, I am afraid...

PMU specialists can also write you a cover letter for when you do need to present at Emergency. I have one that basically says "Attention Doctor(s) and/or nursing staff. This guy is very sick, he needs this, this and this - pronto. Don't mess him around or you will be fronting up to the big wigs on Monday morning. Get onto it now, his CH is a serious condition, not to be taken lightly or treated with 2 panadol and sent home etc. etc." It includes 24 hr contact phone numbers for PMU specialists, should Triage or Emergency doctors try to delay my admission to Emergency Department. This tends to get their attention and me my treatment - pretty fast. So, some advocacy from medical professionals in your corner will help you no end. I think you need some experienced specialists "On your side" to help you.

I would think that if your pain was so strong as to bring you to the point of vomiting, oral administration of Sumatriptan is less likely to work. You could either vomit the medication back up, or your gut will shut down and will not absorb the drug.
When I get to pain/vomit threshold, I have Maxalon ( http://www.drpaulmainwaring.com/Common_Problems/Metoclopramide.pdf[
/L]
) to control vomiting first. Then I can think about oral drugs staying down and having the time to work. Emergency Depts. have Maxalon in injectable form - ask them next time, it will help immensely. Then you can get onto the oxygen and abortive medications quicker. It can be quite difficult to vomit through an oxygen mask....(sorry, but ain't it the truth?)

I strongly disagree with Kerry's statement; "Your daughter's headache does not sound like Cluster Headaches so you should not worry about it." Any GP worth their salt would commission basic CT scans, (or other possible tests) to exclude the unlikely possibility of any other anatomical nasties like tumors or aneurism before immediately jumping to the conclusion that one has CH. This is basic medicine folks and routine practice in preliminary CH investigation. I was ignored and overlooked for CH as a child - largely because of dismissive statements like this, it took me 19 years of hell before I could get a CH diagnosis. Please, don't let my situation be repeated with your Daughter. smile

As for the hereditary links. There was mounting speculation in the mid 90s that a gene was responsible for CH appearing in families. (Not to be confused with a proven hereditary gene prevalent in Migraine headaches.) More recently, studies have shown that this may be true, but links are tenuous and the prevalence low. CH is a very unpredictable and problematic condition to study in large numbers of people. I can find much evidence to support arguments for and against the theory of inheritance of CH. In my unprofessional view, the likelihood of incidence of inhereted CH is only marginally higher than the prevelance of CH within the general population. My Grandmother has a major headache disorder, as do I. In the end there is no test to confirm any link between our causal factors. Even if we both had access to this information, it would not provide either of us with the solace of a cure. So, inhereted or not, there is nothing her or I can do about our conditions.
I used to be curious about hereditary links, but mid-attack, that hardly seems to matter.

Good luck in your search for diagnosis and treatment.

Cheers, Ben.

Check out PubMed for some useful data: http://www.ncbi.nlm.nih.gov/pubmed/8990601

Some research I located there for the benefit of users:

2004 May

Epidemiology and genetics of cluster headache.

Russell MB.

Department of Neurology, Akershus University Hospital, Oslo, Norway. m.b.russell@klinmed.uio.no
Abstract

Cluster headache, the most severe primary headache, is characterised by unilateral pain, ipsilateral autonomic features, and, in many cases, restlessness. Recent epidemiological studies indicate that the prevalence of cluster headache is about one person per 500. Genetic epidemiological surveys indicate that first-degree relatives are five to 18 times-and second-degree relatives, one to three times-more likely to have cluster headache than the general population. Inheritance is likely to be autosomal dominant with low penetrance in some families, although there may also be autosomal recessive or multifactorial inheritance in others. To date, no molecular genetic clues have been identified for cluster headache. Identification of genes for cluster headache is likely to be difficult because most families reported have few affected members and genetic heterogeneity is likely. Future focus should be on ion channel genes and clock genes. This review summarises the epidemiology and genetics of cluster headache.
---------------------------------------------------------------------------------------------------------------
1995 Dec

Cluster headache is an autosomal dominantly inherited disorder in some families: a complex segregation analysis.

Russell MB, Andersson PG, Thomsen LL, Iselius L.

Department of Neurology, University of Copenhagen, Denmark.
Abstract

We investigated the mode of inheritance of cluster headache in 370 families. The probands were from a neurological clinic in Jutland and two departments of neurology in Copenhagen County, Denmark. The criteria of the International Headache Society were used. The patterns of segregation of cluster headache were assessed by complex segregation analysis performed with the computer program POINTER. Of the 370 probands with cluster headache, 25 had 36 relatives with cluster headache. The segregation analysis suggests that cluster headache has an autosomal dominant gene (p < 0.10) with a penetrance of 0.30-0.34 in males and 0.17-0.21 in females. The gene is present in 3 to 4% of males and 7 to 10% of females with cluster headache. An autosomal dominant gene has a role in cluster headache in some families.
--------------------------------------------------------------------------------------------------------------------
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Pauline

(Member)
From: Waitara
3 total posts
Not currently suffering :D
Thanks everyone for the responses (especially Ben). I obviously have some more reading up to do as well as pushing the GP for further diagnosis and specialist opinion.
I was very surprised initally and after further attacks that a CT scan was not done even after suggesting it. I think I am going to push this further.
I will keep you updated as to where I get.
Regards,
Pauline
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Dusker

(Member)
From:
769 total posts
Currently suffering :(
Hi Pauline
Please allow me to take a different tack!
It sounds to me as though both you and you daughter need to be reassessed!
Headaches in all forms are indeed very difficult to diagnose ie to put them into a category--to name them. We are however fairly lucky because whatever the name some of the treatment is pretty well the same.
What I suggest is that you and your daughter keep a headache record.
By date, time, what doing when headache started, how is started, where pain started, if it travelled, what type of pain, how intense on a scale, did it get stronger, did it wane, how long did it last, what did you take, did it help. Anything at all that could help a Dr get a better picture of what your headaches and the pain is like. Keep it simple and clear. Also any possible precursors to headache/pain, ate anything, or other symptoms that you are aware of. Get to know your body and what it is up to.
Then when you see your doctor you can help him in your diagnosis and treatment.
Maybe you wont have any more headaches as we come to the end of February, but not so sure about your daughter, but you both need to be prepared for whatever coming. Read up and if those headaches kick in be pro active. Record your headaches.
Get to your GP, talk to him/her, get your diagnosis checked. Whether it is CH or migraine or whatever and get some treatment.
Refer to the treatment link on the left for CH. Many treatments are the same for migraines and other headaches.
I can remember my neurologist saying to me that treating headaches is a bit of hit and miss. And to make it worse what works on one person does not necessarily work on another.
In the interim if you have another attack go in to ER and try oxygen again even if did not work for you once--go back and try again after reading the information on the oxygen link! Go in with knowledge of the right equipment and right rate. Don't wait for the headache to be full blown mode.
Check out some of the other methods used by our members--cold treatment, aspirin. Become proactive in your treatment.
Get yourself checked out by a neurologist if necessary.
So manage the pain is the first port of call.
Again medical treatment page--and yes there is a lot on imigran (Sumaptripin).
I do not agree with you that you have to accept your suffering!
Last year was my horror year for CHs. I spent 15 weeks in and out of hospital. It was when I was out of hospital having up to 6 attacks a day that I struggled with my personal demons. I refused to accept suffering and stopped "suffering in silence". It did me no good. I urge you to do the same! You need to manage your illness, whatever name or handle it is given. You need to have a plan in place for next year so that when it hits next January/February you know what to do to minimise the pain that you experience
Your daughter needs to be followed up by medicos. 5 days of headaches. What is the cause? What type of headaches? I would not assume that they are Cluster Headaches. She has been given pain relief medication only. Did she get any relief with the Tramadol? What sort of follow up is occurring?
Seek help from well qualified medicos and become proactive in your treatment. I can assure you there is light at the end of the tunnel in treatment of any form of headaches. A lot has been happening over the last few years with CH treatment. Go back and seek more help. Do not be put off--push on, go to new doctors, get second opinions.
But go with more information.
Good luck
Heather
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Jennievans

(Member)
From: Seaspray
2 total posts
Not currently suffering :D
I am undiagnosed but after going to the hospital the other night when I could no longer stand it the doctor seemed to think there was nothing wrong, gave me some oxygen (which I had never heard of helping headaches) and when that done the job he suggested it might be cluster headaches -which Id never heard of before. I came home and googled it, found this site and I have most of the symptoms here. I went to the doctor today for a follow up (the pain is driving me crazy, but I did get a 5 hour break last night) the doctor I saw today was very unsympathetic and prescribed me some maloxin...waiting for some relief....I understand why they are called suicide headaches, I feel like sticking a syringe into my head and draning some fluid or something!

Oh, and I spoke to my grandmother (my mother died when I was young) but apparently my mother had headaches a lot. Wish she was around so I could quiz her as to where it hurt. Right now Id say my pain is at about an 8/10
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grannysa

(Member)
From: Dalby
158 total posts
Not currently suffering :D
Hi jennievans

Welcome to the site and so sorry to hear you are hurting so much.

Unsympathetic doctors seem to be the norm where CH is concerned - they just don't get it, and I think that many people here will have the same story.

Firstly, can I suggest you get a referral to a neurologist and get an exact diagnosis - then you know what you are dealing with. If your GP won't come to the party, then find another one who will. In the meantime, start a headache diary and record things like duration, level of pain, type of pain and any possible triggers etc - there is an excellent one on this site that you can copy and paste onto a word document to take with you to the doctor.

Secondly, although the exact cause of CH is unknown, alcohol seems to be a trigger for many - so avoid, avoid, avoid.

Thirdly, until your doctor takes you seriously, you are unlikely to be prescribed any effective medication. Cluster headaches come on very rapidly and oral analgesics simply take too long to work to be effective. In the meantime, try 3 aspro clear in half a glass of water at the first signs of attack - several members have found this effective, but it must be aspro clear - the fizzy type. Hot and / or cold packs can also provide some (admittedly not much) relief.

And finally, use this site for support and to gather as much information as you can. Everyone here either suffers from CH, or cares about someone who does.

Cheers and good luck
Sara
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Jennievans

(Member)
From: Seaspray
2 total posts
Not currently suffering :D
Thanks for that, I will definatly use the headache diary. And no more drinking for me, I have hardly been smoking in hope that it stops it too. I can predict how they work everyday for 7 days I have been hit with it between 8-8.30am and fairly constant (a few 20ish minute breaks) until 5.30. then it goes away for the night. weird. Hope I can get some effective relief soon.
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