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BlueDevil

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I'm a newbie collecting information....
Jan 23^rd, 2012 at 1:50am

Hi everyone,

I am a 53 yo male living in Australia. I have had several severe headaches recently and have an appointment to see my doctor this week, and presume probably a referral to a neurologist if my doc thinks it is appropriate.

After the second headache I did some quick internet research and noticed that my headaches have a number of similarities with cluster headaches:

- extremely painful, feels like someone is ramming a knife into my head
- unilateral - right side near and above the eye
- runny nose only on the pain affected side
- can't sit still when the pain is at it's worst - have to pace around
- no relief from pain killers/anti-inflammatories - including stronger ones like codeine and Endone
- rapid onset and offset, lasting about 1.5 hours
- mild headaches in between - shadowing I believe it is called
- events have been at a similar time of the evening
-several episodes have involved a small to moderate amount of alcohol beforehand

However there doesn't seem to be a clear pattern to the headaches - certainly not getting them daily or anything like that. Is there a 'mild' form of CH where the headaches are occasional rather than daily/regular?

Obviously I need to get an expert medical opinion but I am researching as much as I can in the meantime.

When I had the third headache I tried oxygen, since I have it readily available at my workplace (I'm an ambulance paramedic). It seemed to work well but I guess I can't say what the course of that headache would have been if I hadn't used the oxygen. I have also tried a fast acting form of Nurofen with 'possible' mild benefit, and some Red Bull which seemed to help with a mild headache.

I am in the process of reading many of the informative threads on this forum but it may take quite a while! I am particularly keen to read up more on the use of oxygen in CH and have seen much useful info (especially the "oxygen info" page). Being a scuba diver my thoughts turn to that as a potentially readily available source of O2. I notice however some of the threads relating to using scuba are fairly old and some of the info not completely accurate. I may post on that issue some time soon.

Congratulations to the admins/moderators on a great forum.

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Mike NZ

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Oxygen rocks! D3 too!

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Re: I'm a newbie collecting information....
Reply #1 - Jan 23^rd, 2012 at 2:07am

G'day from the other side of the ditch. They'll also be some aussies around soon too.

You can certainly see some of your paramedic skills come through in the description of both your symptoms plus the steps you've taken to try some treatment.

Certainly what you've described sounds to be consistent with CH, however it really needs a headache specialist to determine this as there are a fair number of headache types plus several other things that give very similar symptoms. You need them to give you a diagnosis, which will be a combination of your history, a few tests like an MRI plus the exclusion of other causes.

Don't be confused about the apparent lack of pattern. When someone starts with CH it often seems to follow a slightly irregular form, which could be variations in when it appears and the intensity. For me they happened almost at random during the day and at a much lower intensity before settling down into a fairly classic CH form over the course of a couple of months. Lots of other people have similar experiences.

With the oxygen, did you use a non-rebreather mask at a high flow rate (15lpm or higher)?

Keep reading, ask all the questions you can think of and people will try to help.

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BlueDevil

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Re: I'm a newbie collecting information....
Reply #2 - Jan 23^rd, 2012 at 2:33am

Thanks for the welcome. Love your side of the ditch! I am hoping to be in Christchurch for the earthquake memorial on the 22nd Feb after having spent 18 days there soon after the quake (providing peer support services to the local ambulance service).

Your experience with the onset of CH is interesting - but also a little downheartening in that it sounds like I could be in for the full blown version in the future

As for the O2 we don't use non-rebreathers at work so I used a bag-valve-mask (BVM) at 15 lpm which is capable of delivering close to 100% O2. If there is a need for me to use oxygen in the long term I will investigate my best options further.

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Guiseppi

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Re: I'm a newbie collecting information....
Reply #3 - Jan 23^rd, 2012 at 9:02am

Welcome to the board Devil! Pretty much what Mike said, your symptoms really sound like the early onset of CH for me. No discernable patterns, some really mild attacks, some screamers.

If your GP refers you to a neuro...and I realy hope he does...do a little further research and make sure he is a headache specialist neurologist. Headaches are a world of medicine unto themselves, we find most garden variety neuro's just don't have the background and experience to effectively diagnose and treat a CH'er.

As to the 02 delivery system....I use an old push button paramedic valve one of my firefighter buddies scored for me. I pulled the mask off and breathe directly off of the stone. It gives me an unlimited flow rate, plus it shuts off when I'm not inhaling and helps conserve the 02.

Good on you for taking a pro-active approach to investigating your diagnosis. Wishing you speed on a diagnosis and an effective treatment plan. If it is CH....and sadly if I were a betting man I'd say it sure is heading in that direction....don't lose this webpage. You won't find a more comprehensive collection of info on CH anywhere.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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BlueDevil CH.com Junior Offline I Love CH.com! Posts: 52 Australia Gender:	Re: I'm a newbie collecting information.... Reply #4 - Jan 23^rd, 2012 at 5:55pm Thanks Guiseppi. Sounds like I may have an 'interesting' and difficult time ahead of me if i do have CH. I figure the better informed I am from the start the better I will be able to meet the challenges. Dave.
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AussieBrian

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CH - It's all in your
head!

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Re: I'm a newbie collecting information....
Reply #5 - Jan 23^rd, 2012 at 6:05pm

G'day the Devil, and welcome to the biggest unfenced lunatic asylum outside of Canberra. As you'll have noticed already, we regard knowledge as our greatest weapon in the fight against this beast.

All that knowledge is available right here for free, just don't go sending six-packs to everyone by way of gratitude. I'm ever happy to volunteer as a sorting house so just poke them my way and I'll ensure they're passed on appropriately.

Otherwise, good luck with the neuro and don't be too disappointed if it turns out you know more about CH than he does. Time and a little patience and education can fix all.

Where abouts are you? The pubs open there yet?

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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BlueDevil

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Re: I'm a newbie collecting information....
Reply #6 - Jan 24^th, 2012 at 3:39am

Thanks for the welcome AussieBrian. I am in Melbourne.

I have a few days off work so managed to get an appointment with my doctor. This is the first chance I have had to get to the doc since the headaches started and I was looking forward to his opinion. BUT...I arrive there to find out there has been an error and they accidently made my appointment for tomorrow instead of today! Oh well, I only have to wait 24 hours longer than I thought before I get to see the doc.

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japanzaman CH.com Veteran Offline I Love CH.com! Posts: 210 Fukuoka, JAPAN Gender:	Re: I'm a newbie collecting information.... Reply #7 - Jan 24^th, 2012 at 9:49am Try to be patient and systematic if this does turn out to be cluster. Don't put all your emotional eggs into one treatment, and always read, read, read. Finding this site was probably the best step you could have taken towards dealing with the clusters.
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Batch

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Control The Beast With
O2 & D3 You Must

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Re: I'm a newbie collecting information....
Reply #8 - Jan 24^th, 2012 at 11:38am

Hey Dave,

When you go in for your appointment, ask for the lab test of your 25-Hydroxyvitamin D, a.k.a. 25(OH)D. That's the serum level metabolite of vitamin D3. It appears that most if not all CH'ers with active CH are vitamin D3 deficient.

So far all the CH'ers who have had this diagnostic test while still presenting with active CH have all tested at or below 42 ng/mL, (105 nmol/L).

Nearly all the CH'ers on the anti-inflammatory regimen taking ≥10,000 IU/day vitamin D3 who have gone pain free and remained that way have tested in a range of 60-90 ng/mL, (150-225 nmol/L)... the rest have tested higher up to 118 ng/mL, (295 nmol/L)

Take care and please keep us posted,

V/R, Batch

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« Last Edit: Jan 24^th, 2012 at 11:38am by Batch »

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BlueDevil

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Re: I'm a newbie collecting information....
Reply #9 - Jan 24^th, 2012 at 5:14pm

Thanks Batch for the mention of Vitamin D, I hadn't come across that one before. Are there any studies on the issue?

I am not quite sure what to expect from my visit to the doctor this afternoon. My doctor is generally very good but he is an 'older' person and I am hoping he is up to date on cluster headaches.

I haven't had any severe headaches for a while. Last night I had about 2 hours of 3/10 right sided pain, but quite tolerable. Was reluctant to try Red Bull since it was late in the evening and I didn't want to be awake half the night after a dose of caffeine. The pain resolved spontaneously without me taking anything.

In the past I have had headaches due to musculoskeletal neck problems which have been at the back of my head, but I believe it is possible to get pain from the neck that occurs in the front of the head. However the sudden onset and offset, the severity of the pain, lack of benefit of analgesics and the runny right nostril tends to make me think it is not a neck related issue.

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BlueDevil

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Re: I'm a newbie collecting information....
Reply #10 - Jan 25^th, 2012 at 8:09pm

Finally got to see my doctor. He agrees that it could be CH but is not 100% certain. He thinks it is a vascular headache but can't exclude migraine yet. I think the irregular pattern of my headaches makes him a little less sure of CH.

He recommended oxygen (so presumably has a reasonable knowledge of CH) and was interested to hear that I had tried it with some success.

He wants me to see how things go with some Imigran and get back to him. Says he will probably refer me to a neurologist at my next visit if the diagnosis still isn't clear.

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Barry_T_Coles CH.com Alumnus Offline Posts: 2073 Karratha\|,West_Australia Gender:	Re: I'm a newbie collecting information.... Reply #11 - Jan 25^th, 2012 at 8:29pm Hi Blue & welcome I cant add to what you have already been told by the good folk before me,you have been given good info. Looks like you are heading in the right direction for diagnosis. Best of luck Cheers Barry
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