Just diagnosed with Cluster headaches

06 Apr, 2012 - 1:49 pm

Hi there, I'm new to your group and I'm so glad I have found this wonderful site. I have a few questions I hope can be answered.
I started getting extremely painful headaches behind my right eye-temple area and the pain would not go away for 2 weeks and it would wake me up while I was sleeping. I thought it could be eye strain as I've been working long hours on the computer so saw the optomistrist and bought computer glasses (no help really) or even a sinus infection as there was also some nasal drip on the rhs too.
I went to my GP end of Feb 12 and he diagnosed me with cluster headaches and prescribed Indomethacin 25mg.
When I googled the drug it said it was for arthritis with many side effects so I didn't get it.

Well the pain has arrived again and now I guess I'm looking for advice and if to know if anyone have taken Indomethacin for the pain?
Also I did watch the video clip and my pain (thanks God) isn't as bad as the Dads. Does this pain get worse from the first time it starts? That really scares me.
Annette

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06 Apr, 2012 - 9:52 pm

Annette,

Hi, my name is Matt (Silent Planet) i have tried Indomethacin a very long time ago and im not sure about the side effects, firstly how old are you? Is this the only medication that you have been prescribed? The GP who diagnosed you how much do they know about Cluster Headaches? Did they give you a referal for a Neuro or a Pain Specialist? Sorry for all the questions but the more we know the better we can answer some of the questions that you will have in the future. Please feel free to read as much info as you can and even print out anything that you might think that may help your GP or Specialist understand this condition a little better.

If you go to your GP to get a referal ask if they can call and make to appointment for you as you will find that you might get in quicker if they make it for you. There is also the O2 treatment but i will let Barry our Resident O2 Specialist explain it to you better than what i can. Look forward to reading you reply.

Matt

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07 Apr, 2012 - 12:43 am

Hi Annette,

i have tried indomethacin and it had no effect in reducing the pain of cluster headache.
all the research i have read shows that it is inefective for CH.

having said that, it has been shown to be dramtically effective in other headache conditions, particually in paroximal hemi cranina.

like most of us on this site, i am not a medical practioner, just offering my personal experience and info on what i have read.

Kim

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07 Apr, 2012 - 3:26 am

Hi Annette,
welcome to the forum, sorry you had to find us. You need to be aware that Cluster Headache is very rare, so most doctors don't know about it. it's also easily confused with other types of headache, some of which are cureable (CH is not).
Down the left hand side there is all sorts of information about symptoms, treatments (natural and chemical), what you can do to lessen the severity of attacks etc.

When you say "the pain would not go away for two weeks", do you mean the pain was absolutely constant, or that you had repeated attacks throughout the two weeks?
For your sake, and to assist your doctor, keep a record of your attacks, the intensity, length, what you've eaten or drunk that day, any medications you've taken- stuff like that. The more information you can give to your GP the better. Perhaps ask for a referral to a neurologist- preferably as soon as possible.
If you DO have CH, there are medications that can stop an attack in it's tracks. The oldest and most widely used is Imigran (Sumatriptan), followed by Zolmitriptan and others (all from the Triptan family)
For many people, breathing high rates of pure oxygen also will stop an attack in it's tracks. The technique must be done correctly, but if it works for you, your body will thank you for avoiding using the usual drugs, which can knock you around a bit. As Matt ( Silent Planet) said, Barry T Coles is the guru, search his posts for top advice.
OK, that should keep you going for a while. As Kim said, most of us are NOT doctors, just fellow sufferers. Always do your own research, and that includes on what your doctor tells you and prescribes you - they don't always get it right.

Feel free to ask questions, we'll do what we can to help.

cheers peter.

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07 Apr, 2012 - 9:49 am

Hi Annette

Welcome to the site, you have already been given very good advice from these wonderfull people so I wont elaborate.

I see from your profile that you are from Baldivi;, is that Baldivis WA down Rockingham way,
If so I am in Perth now until Wed 12 April before I go up to the property & if you want to have a look at my oxygen setup your welcome.

I'm not in high cycle at the moment but I carry my o2 rig wherever I go just in case.

I will PM you with my phone # if you want to talk.

Cheers
Barry

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07 Apr, 2012 - 11:52 am

Thanks so much for the input guys, I really appreciate it. I'm 36 (37 tomorrow though LOL) and yeah the Indomethacin is the only and first medication the dr has prescribed for me. When I had the attack in feb for 2 weeks it was pretty much constant with short periods of 30-60 minutes breaks but didn't feel like child birth...... just a pain that would bring me to tears thinking it would never go. The one thing I have found that helps is beer?! If I have 3-6 at night the pain will dissipate 90% but then the pain will wake me in the wee hours again. I don't want to rely on beer though. I do find applying strong pressure to the area seems to makes the pain subside somewhat temporarily too.
Currently the headache has been with me 3 days so far this time but it hasn't been as bad as last time.
Thanks for the generous offer Barry, I have a full on week with work, family and kids the next couple weeks so I probably won't be able to make time but I'm going to look into all the different way tackle this. I guess I'm still hoping this isn't CH. I will start a diary for the DR too thats a great idea.

Hope you all have a great Easter

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08 Apr, 2012 - 3:14 am

G'day Annette,
for your own sake (and your doctor), you need to write down a full and complete description of your attacks/ episodes, as some of what you're saying doesn't fall into the "usual" symptoms for CH.
For example, most of us have an almost instant attack from drinking anything alcoholic, in fact it's one of the ways we know a cycle has started, although i'm sure there are exceptions to the rule.
Anyway, do keep a diary, and do keep your fingers crossed you don't have CH. Then you just have to work out what is the matter. Get a referral to a neurologist- they should order an MRI scan just to rule out some other cause.
Good luck to you.
cheers peter.

Oh and Happy Birthday

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