My name is Amanda, I'm 25 years old and have recently been diagnosed with Cluster Headaches. I have to say, after reading everything on this site, I'm one of the luckier suffers so far! (if there even is such a thing...)

I started getting attacks when I was about 16 years old - at the time my GP sent me for all the regular CT scans, etc. and nothing came up, but it never went any further because they stopped. Had a few attacks on and off through my later high school years and into uni, but again never long enough to really do anything and there would be years between - I would only get one full on attack every now and then, seemingly randomly. Of course, not knowing what they were at the time, I never though to look at whether the attacks were coming the same time through the years...

This year has marked a different pattern in my headaches. Back is February is the first time my right eye joined the party, but nothing else came of it until September. Since September, I have been having what you guys appear to call "shadow" headaches daily, to varying degrees of pain. Throughout these 3 months, I have only had 2 full on attacks that were mercifully on 3 - 4 minutes long. I take my hats off to all of you who suffer through much more frequent and many more full on attacks because 3 - 4 mins was enough for me!

After many GPs diagnosing me with migraines (and I swear, if I hear one more person recommend I get my eyes checked or take Pandine Forte, I will scream!) I finally found a GP who gave me a referral to a neurologist. The first thing she said to me was that it sounded like CH, which I had already suspected myself, after stumbling across this very site! The relief of finding a description of my pain that someone actually understood was indescribable, made only better by the recognition from the neurologist!

Given that much of my pain is coming from shadows currently, with infrequent and short full on attacks, I'm currently working with preventatives, namely verapamil, as my attacks aren't long enough for me to even get to any abortives, let alone for them to help. I have recently increased my preventative meds and for the last two days have actually had a few pain free hours in succession - I'm almost too scared to get relieved yet!

SO that's my background! I'm from Sydney, Australia, so hi to any other Aussies on here! I'm so glad to have found such a great supportive network because as I've seen so many of you write - no one can understand the pain unless you experience it!

Hope to speak with you all on here when I manage to pop on, and get to know you all a little better!

Here's a piccie of my and my boyfriend of 5 1/2 years, who has been wonderful, despite getting slightly freaked out when first witnessing a full on a attack a couple of weeks ago!

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Hi Amanda and welcome from the other side of the Tasman Sea.

It sounds like you've a pretty good understanding of your CHs which are certainly unusual in how short they are. Since they are so short it's vital that you prevent as many of these as possible.

What dose of Verapamil are you on?

Do you get CHs at night? If so melatonin might help there too.

Have you tried energy drinks, like Red Bull, to help with the shadows?

Hi Amanda, Welome!

The eye pain is definitely a sign of cluster, even without the headache. I started with eye pain for about a month, then a few massive headaches here and there over the next couple of months begore settling into any kind of pattern. It's great that you have a diagnosis at this point so you can get right to addressing the pain. I urge you researh this site as muh as you can. Many here have been through the available meds and can provide insight on what works well, what doesn't. There are also some methods for immediate relief that you won't find at the doc's office.

Hoping for pain free days for you. -Chris

Hello amanda and welcome.
sorry you have to be here but glad you came. My wife got a bit freaky when i started down this slippery road, we whent through all the tests for MS, Cancer, tumor etc and we had a few heart breaking moments (the last in a restaurant on my wifes birthday). you seem sorted out with meds and the only advice i can offer is to battle through the hits but remember to enjoy th PF time.

Mark (nice picture  ;) Grrrrrrr)

Hi Amanda & welcome to the best little nut hut this side of Mars.
Something worth a try as a quick easy abortive for low level hits any energy drink high in caffeine & taurine, Red Bull, Mother etc.
Keep them icy cold & handy & slam the can down the throat as quick as you can without choking, it's very effective for a lot of us, I can kill a Kip 5-7 within a couple of minutes.

Cheers Barry up north on the Western side, not to be confused with Brian up north on the East side. ;)

HI everyone!

Thanks so much for the welcome and the advice!

I'm actually on a really low dose of verapamil, which I didn't know until I came one here! I'm taking 60mg a day - half a tablet 3x a day. My neurologist only recently put me on 60, i was only on 40 before that! She only wanted me to take 60 for 2 weeks and if it wasn't working to try something new (I honestly can't read her writing on the script to know the name, it's an antidepressant though?), but now I'm tempted to go back and ask to stay on it but try a higher dose, since it seems to be the most effective for most people. It has helped in comparison to how the shadows were before, but there are days that are still pretty yuck with the shadows - like today. Not much sleep last night!

I didn't know about the melatonin or the energy drinks, so I'm going to give them a shot! Today has been highly unpleasant with shadows so I'm going to pick up an energy drink when I duck to the shops, and I'm gonna see about trying some melatonin - my full CH have been late evening/early hours of morning attacks, but I've noticed my shadows are worse early hours of the morning too so I'm willing to give anything a go!

I'm glad that I managed to get a diagnosis early, I feel so bad for people who managed unmedicated for so many years! I take my hat off to you! I'm worried that mine may get worse next cluster since this one is still very unsettled in terms of a pattern...and it appears to be the first proper cluster I've had...guess only time will tell!!

Tell me, how do you guys deal with work around all of this? My work have been fantastically supportive and have basically told me to take off any time I need - appointments, bad days, etc. (I work in a call centre environment under rather stressful circumstances, making sticking through a bad day quite hard!) but I feel so bad taking time off...I can't even begin to imagine how to deal with work when you are getting a full on CH once or twice, if not more, a day!

xx

Amanda07 wrote on Nov 28^th, 2010 at 9:36pm:

I'm actually on a really low dose of verapamil, which I didn't know until I came one here! I'm taking 60mg a day - half a tablet 3x a day. My neurologist only recently put me on 60, i was only on 40 before that! She only wanted me to take 60 for 2 weeks and if it wasn't working to try something new (I honestly can't read her writing on the script to know the name, it's an antidepressant though?),

60mg is a very low dose for verapamil as a preventive for CH. A dose of 360-480mg per day is pretty effective for a lot of people although some have gone to over 1000mg per day. For me 360mg did fairly well but 480mg is a huge improvement.

It can also take 10 days or so for your body to adjust to the doseage you're taking, so trying it out for just 2 weeks is not likely to be too useful.

For the antidepressent you mentioned, it sounds like you're thinking of amytripline which has been used as a preventive for CHs.

That certainly could be the scribble on my script, it definitely starts with amit-

Gotta love doctor's writing...

Yeah after coming on here and seeing how high dosages of verapamil everyone was needing to take to get some relief, I'm definitely thinking about going back to suggesting an increase instead of switching again - mostly because I have noticed some change, just not enough to say it's really effective...I think she was worried about my BP, as you would be, but I think as long as I get regular check ups it should be fine, monitor it? I gather that's what most people would do...

Any issues with taking energy drinks with verapamil?

Hi Amanda and Welcome!

How to deal with work and ch you ask... "One day at a time!" 
A proper prevent such as verapamil, and abortive(s) imitrex shots and O2!  Also it doesn't hurt to print out this START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and hand it to your HR dept and your supervisors.

Have your B/F come here too there are things he can do to not feel so helpless when you are getting slammed by the CH Beast.

Wishing you many PF days and nights!

Amanda07 wrote on Nov 28^th, 2010 at 11:53pm:

That certainly could be the scribble on my script, it definitely starts with amit- I think she was worried about my BP, as you would be, but I think as long as I get regular check ups it should be fine, monitor it? I gather that's what most people would do... Any issues with taking energy drinks with verapamil?

Hello Amanda, and welcome! You don't mention if you've tried O2 as an abortive. Great link on the left. Read and then ask any questions you might still have. BEST abortive ever.

Yes, regular monitoring with Verapamil is the ticket.
Yes, amitriptyline can help.
And yes, there can be an interaction between verpamil and taurine/caffeine combos, but I've had little trouble handling it (400mgs/verpamil) so long as I limit my energy drinks to rapid abortion once a day. Still, be careful, even if you are on low doses. Everyone's different.


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Hi Amanda & welcome to the best little nut hut this side of Mars.

I KNEW there was life on Mars! Nut house there, too, huh? Think I'll consider a transfer.  ;D

Blessings! lance

Welcome to the board Amanda, I'll second the advice on the oxygen. You can keep an E-Tank at work with you, they can be hidden real easily in those bags they put the "soccer mom" chairs in. You feel an attack coming on at work, you sneak into a back room, huff 02 for 10 minutes, not even a full coffee break!!!, CH is gone and your back at work. I recently retired from law enforcement, used to keep an E-Tank in the trunk of the cruiser while on cycle.

A decent prevent helps a lot too, cuts the number of hits way down.

Keep reading and learning, educated CH'ers hurt a lot less! ;)

Joe

G'day Manda, and I haven't been to Sydney for years. Who's got the pub there now? Hope they've improved the beer, too, cos' the stuff they used to serve would give anybody a headache!

I see our friends have already offered lots of useful advice and about all I'll add is that Imitrex is called Imegran here in God's-own and also that our Oxygen set-ups have different names and threads compared to those overseas.

Also, you can always pick me and Barry apart because I'm fractionally better looking but I've heard he's the better singer.

There's none of us ever more than a PM away, and that goes for your bloke too, so just let us know how we can help you further.

Cheers and beers,

B.

Welcome,as a night hitter myself I swear by the Melatonin.
10mg an hour before bed and I have yet to have another night hit (3 months) Give it a few days to work it took me 2 or 3 days and I haven't looked back since.

Good Luck

Well after another relatively sleepless night thanks to shadows, I picked up some homeopathic melatonin today, before I get a proper prescription from my GP hopefully tomorrow - turns out they no longer do it over the counter. Any recommendations on how much to take of the homeopathic? Lady at the chemist said it doesn't have as much in it as the prescriptions, the bottle says each tablet has "6X".

For all you lovely people asking about the O2 - I haven't used this yet, although I do have a neurologist who has recognised that this is the best way to abort attacks, so should I need it there won't be any questions asked. Its just that my attacks at the moment are pretty few and far between (I've only had 2 in 3 months) and they have only lasted a max of 4 mins or so...so at the moment the O2 wouldn't really be helpful. I'm mostly dealing with varying degrees of shadows at the moment and the neuro has recommended preventatives for now...today has been particularly unpleasant with them. About to make myself a coffee and see if it does anything (not usually a coffee drinker!) Definitely aware of O2 for future, should my attacks get worse, which I think they probably will, once the beast decides to settle into my head and get himself comfortable...

Has anyone had Arthrexin (Indomethacin)? My neuro gave me this to take when I have a bad bout but from everything I've read, tablets are pretty useless unless as a preventative?


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I KNEW there was life on Mars! Nut house there, too, huh? Think I'll consider a transfer.  Grin

Depends - is their nut house nicer?! lol


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G'day Manda, and I haven't been to Sydney for years. Who's got the pub there now? Hope they've improved the beer, too, cos' the stuff they used to serve would give anybody a headache!

G'day right back and sorry to say, not much of a beer connoisseur so can't really comment! lol. I'm sure the boy could give you more of an idea, I'll try to get him on ;) lol

Delighted your attacks are so infrequent, Amanda. But, not trying to throw cold water on your optimism, may I respectfully draw attention to this:


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Its just that my attacks at the moment are pretty few and far between (I've only had 2 in 3 months) and they have only lasted a max of 4 mins or so...so at the moment the O2 wouldn't really be helpful.

This is good news, as I said. BUUT...should they increase in either frequency or strength, please do not wait a moment longer than you feel you need to wait...these things are much easier to deal with before they take ahold and hit full cycle. The more and the faster you abort them, even little ones, the better.

In the meantime, I have it on good assurance from the Man in the Moon that the nuthouse on Mars is 5 star! See you there? God bless.  lance

I'll be at my neuro's door first thing, demanding O2 if they get worse! I'm definitely not going to take my time on that one!

In the meantime though, melatonin is my new best friend...The first night I took it, I didn't really know what to expect, mostly just thinking that it wouldn't really make the shadows any less, but might assist me to sleep through? But OMG, I am now virtually pain free for the majority of the day now - I take some melatonin before bed and it gets rid of about 90% of my shadows until about 4pm in the afternoon. It's so fantastic! I can actually go to work and feel productive! Occasionally some higher Kip levels break through but it's generally only momentarily... I heart melatonin! lol

I forgot to take it last night, as I was out at my sister-on-law-to-be's hen's night, and I am paying for it tonight, higher Kip then it was prior to starting the melatonin too...so definitely making sure I stock up on it and hoping that I can get away with verapamil and melatonin until this cluster buggers off...