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Dawn-Louise

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3yrs since diagnosis and need support
Jan 30^th, 2014 at 1:03pm

Hey guys,

I've been suffering from what I can only call horrific episodes for the past 6 or 7 years now.

They appeared out the blue one day when I was 20/21, with no per-cursor what so ever. Before I know it I am excruciating pain (behind my right eye). The pain is so severe I throw up and well the other end too (sorry for the graphic detail but I'd like to know im not the only one that has these types of CH and symptoms).

I also find it difficult to string sentences together during episodes, my words become all muddled and i just end up screaming and crying whilst rocking on the floor or moving all over the room whilst hitting the wall or the floor. These episodes last anything from 2 hours to 8 hours. Longest has been 12. Afterward i'm out like a light, wake up a few hours later and have this residual headache that lasts the remainder of the day. Or if it was a particularly bad episode the next day as well. Ill tend to get around three of these episodes in a row then ill have a few weeks break and then they'll be back again. However the cycles are difficult to predict. More often than not i get awoken during the night with it and well that's that, game over..... ride it out, try not to wake anyone and live to see another day. It the unexpected day episodes that im getting fed up with. Ive been on so many medications but nothing is working any more the triptans have lost their effect and the topimax did help however the side effects werent so good. I dont know i guess im here for some support. I feel so alone with this 'thing' that lives inside my head and likes to remind me every so often that im not entirely normal and if i even think about living a normal life then i gotta think again. Anyway enough of my rant. Hope anyone out there can help. Could do with the support from fellow suffers

Cheers
Dawn

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Batch

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Re: 3yrs since diagnosis and need support
Reply #1 - Jan 30^th, 2014 at 2:49pm

Hey Dawn,

Welcome to CH.com. You've come to the right place. We know what you're going through and the good news is it doesn't need to be that way...

We're going to need a little more information... Where were you diagnosed with cluster headache? Were you prescribed any medications for them at the time?

Hang in there and take care,

V/R, Batch

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« Last Edit: Jan 30^th, 2014 at 2:50pm by Batch »

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maz

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Re: 3yrs since diagnosis and need support
Reply #2 - Jan 30^th, 2014 at 6:01pm

Hi Dawn and welcome. Smiley

You say triptans stopped working. What did you have? The pills don't work well as they take too long to get into your system. The nasal spray is slightly better, but the auto injections work for most people in a few minutes. They are my new best friend.

Have you tried the energy drink trick. At the very first sign of pain(don't wait), drink it as fast as you can. It's the combination of caffiene and taurine in a sudden hit that does the trick, so any drink with those ingredients will do. Red bull, monster and rock star seem to be every ones first choice. It does not work for every one, but well worth a try as it has had good results for many people.

It doesn't taste too good and keeps you awake - but then you will be awake any way with the pain, so nothing to lose. As for the taste - I would drink far worse than that if it takes away the pain.

Also check out "oxygen info" (yellow tab on the left of your screen) and look for posts by Batch about vitamin D3. It's AWSOME. Batch has already replied to your post so I'm sure he won't mind if you message him for info.

Hope I've helped a little
Maz.

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Dawn-Louise

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Re: 3yrs since diagnosis and need support
Reply #3 - Jan 31^st, 2014 at 6:50am

Hey guys thank you so much for your support

Ok I was diagnosed, say 3 years ago (suffering for 7). After getting told repeatedly that I had migraines or 'headaches' - wow that really aggravates me, having this condition underestimated.

Anyway.....medication: I've been on so many, various calcium channel blockers, amitriptyline, I've had drugs that reduce the inflammation (cant remember the names), various drugs to stop me throwing up (none work), razitriptan, sumitriptan (injection) which now seems to have lost its potency with me, Topimax was my latest preventative at 100mg but I was having problems with distorted vision on this, so now I'm off of it and awaiting my next neurology appointment to get another preventative and get the oxygen. Feel fed up really. Feels like you can never plan anything without worrying. And constantly being cynical thinking 'nothing will work'. Meh........ I will give the whole energy drinks a try though. Don't know if you guys have ever given ice packs a try, they provide some light relief/distraction during an attack.

Hope to speak soon and take care guys x

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Dawn-Louise CH.com Newbie Offline I Love CH.com! Posts: 6	Re: 3yrs since diagnosis and need support Reply #4 - Jan 31^st, 2014 at 6:53am Oh sorry, just realised I didnt say where I was diagnosed.....I was diagnosed at Eastbourne District Hospital with (many) follow up consultations at East Sussex County Hospital (Brighton)
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: 3yrs since diagnosis and need support Reply #5 - Jan 31^st, 2014 at 7:25am Welcome to the board Dawn, do give the Batch Regimen a try. I know it sounds too simple and easy to be true, I'm a 34 year episodic sufferer, pain free for 3.5 years on the regimen, there's really something to it! Joe
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wimsey1

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Re: 3yrs since diagnosis and need support
Reply #6 - Jan 31^st, 2014 at 8:23am

Quote:

These episodes last anything from 2 hours to 8 hours. Longest has been 12. Afterward i'm out like a light, wake up a few hours later and have this residual headache that lasts the remainder of the day.

OK, it looks like I'll be the first to say it. Your experience quoted above is not typical of Clusters, although the rest of what you describe could easily come from our CH playbook. This, plus the inability of Suma injections to abort the headache, makes me wonder if they got your diagnosis right. As Bob would say, there are so many headache thingies that imitate clusters.

I'm not saying you don't have clusters. I am saying an eight to twelve hour bout is unusual. Stick around and read as much as you can, try different things, and let us know how you make out. blessings. lance

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Bob Johnson

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Re: 3yrs since diagnosis and need support
Reply #7 - Jan 31^st, 2014 at 8:48am

Contact your excellent support group and they can tell you how your health care law works. I understand that you have a right to be referred directly to a headache specialty clinic, by-passing local medical folks

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=====

Based on your symptoms and non-response to the usual Cluster meeications, it suggests the need fo skilled doctors to diagnose your situation.

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Mike NZ

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Re: 3yrs since diagnosis and need support
Reply #8 - Jan 31^st, 2014 at 2:35pm

wimsey1 wrote on Jan 31^st, 2014 at 8:23am:

Quote:

These episodes last anything from 2 hours to 8 hours. Longest has been 12. Afterward i'm out like a light, wake up a few hours later and have this residual headache that lasts the remainder of the day.

OK, it looks like I'll be the first to say it. Your experience quoted above is not typical of Clusters, although the rest of what you describe could easily come from our CH playbook. This, plus the inability of Suma injections to abort the headache, makes me wonder if they got your diagnosis right. As Bob would say, there are so many headache thingies that imitate clusters.

I'm not saying you don't have clusters. I am saying an eight to twelve hour bout is unusual. Stick around and read as much as you can, try different things, and let us know how you make out. blessings. lance

I've got similar thoughts too. Looking at the standard cluster headache diagnostic criteria (Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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) for duration:
Quote:

Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes if untreated

The 2-8 hours seems to be long in comparison to the "standard" duration, although this alone does not rule out CH.

And yet the other symptoms you describe seem to be the classic CH symptoms. It could be that you're just unlucky to get very long duration CHs, or you have more than one headache type in play or you've a different headache type.

It isn't unusual for people to have CH plus another headache type, I get CH and migraines and if I combined the CH and migraine symptoms in a single headache you'd get something very close to how you describe your headaches.

So please do try to get this investigated. It could be that your diagnosis can be updated / extended and this could result in a better treatment plan.

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Dawn-Louise

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Re: 3yrs since diagnosis and need support
Reply #9 - Jan 31^st, 2014 at 4:49pm

Hey guys thanks for all getting back to me i really appreciate all your time and support.

Sorry I'm notorious for not being clear. My episodes usually last 2-3 hours but have been known to go as long as 8-12 hours. I'll have one of these attacks a day for 3> days and then i'll have a week or so without any and they will happen again. Then they will stop for a few months. Winter and spring is when they happen but used to be autumn (before being winter).

I've started to do some reading on it all as to be honest I'm fed up of believing the neuro's as they never seem to get anything right. But they don't seem to be typically CH as i don't have several 30 minute episodes a day for a couple of weeks then have my 'remission' period. My cycle seems to be shorter but with longer attacks. Can this be CH? Or do you guys think its something different? If so, any ideas? Its not migraine, I mean I'm not light or photosensitive, i can't just go lie down in a dark room when this happens and i certainly can't stay still. Also i have no warming that these are about to happen its so sudden and finishes in the same way. Like i said I'm awaiting my next neuro but can i request anything else?? Sorry for the info overload and all the questions, just feeling and a bit lost and disillusioned right now. Thanks again guys

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Mike NZ

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Re: 3yrs since diagnosis and need support
Reply #10 - Jan 31^st, 2014 at 5:51pm

Dawn-Louise wrote on Jan 31^st, 2014 at 4:49pm:

Can this be CH?

That is one question we can't answer. We are not medical doctors and even if we were, we don't have a full medical history, diagnostic test results, etc.

However just because a typical CH is 15-180 minutes it does not mean that a 14 minute or a 181 minute headache cannot be CH. Similarly whilst the majority of people get most of their CHs at night, there are people who rarely get them at that time of day. The same goes with cycle lengths, I've seen people here report cycles as short as a week or so, with 1-2 months being common but then a wide variation over months to chronic.

CH is complex to diagnose as there is no test to say that someone has them plus there are multiple other causes that give the same or very similar symptoms plus there are people with multiple headache types. This really does need a headache specialist.

From your comment about migraine, light / audio sensitivity isn't always present with migraine, similarly it can be present during CHs.

I can totally relate to feeling a bit lost and disillusioned. But what you need to do is to take control and make sure you get the answers you need. Just letting doctors do their stuff in their own time will take far longer and result in you going through more pain than you need to.

Just being here will help, people will be able to give you ideas and support.

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: 3yrs since diagnosis and need support Reply #11 - Jan 31^st, 2014 at 11:47pm Hi Dawn Welcome, I'm not a doctor. But your headaches have all the hallmarks of Migrain Headaches. And, it's possible you have the beast lurking around too. Have you done the cluster quiz? the link is to your left on this page. This could answer some of your . Hoppy.
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Dawn-Louise

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Re: 3yrs since diagnosis and need support
Reply #12 - Feb 1^st, 2014 at 3:19am

It's not a migraine.

Several friends of mine suffer from migraines. This is not migraine.

The 'online' test demonstrates CH.

However the cluster pattern seems to be different than that of a 'typical' CH patient. Hopefully the neuro can forward me to a specialist. If any of you guys know of anywhere in the UK that would be much appreciated. Thanks again, Dawn

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Batch

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Re: 3yrs since diagnosis and need support
Reply #13 - Feb 1^st, 2014 at 5:45am

Hey Dawn,

The good folks at OUCH UK should be able to point you to a neurologist near you who knows how to treat cluster headache...

Their webpage and Help Line nums follow:

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01646 651 979

I've also attached the NHS Home Oxygen Order Form (HOOF) you should take to the first neurologist you can see as it's the only way to obtain oxygen therapy for cluster headache in the UK.

Oxygen therapy will at least give you a means of aborting your headaches... It works best if you start it at the highest flow rate (15 liters/minute in the UK) at the first sign of an approaching attack.

When you see the neurologist, also ask for the lab test for 25-Hydroxyvitamin D. It's also called 25(OH)D. This is the serum level metabolite of vitamin D3 that's used to measure its status...

The normal reference range is 70 to 250 nmol/L, (20 to 100 ng/mL)... Nearly every cluster headache sufferer who has gone in for this lab test with active cluster headache has had this test come back as deficient, i.e., less than 75 nmol/L, (30 ng/mL).

Accordingly, it's reasonable to suspect you are vitamin D3 deficient and that deficiency is contributing to your headaches.

80% of the CH'ers who take 10,000 IU/day vitamin D3 and the vitamin D3 cofactors experience a significant reduction in the frequency, severity and duration of their cluster headaches.

Take care and please keep us posted.

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Dawn-Louise CH.com Newbie Offline I Love CH.com! Posts: 6	Re: 3yrs since diagnosis and need support Reply #14 - Feb 2^nd, 2014 at 10:22am Thanks for that. Im going to look into it all this week and hopefully start getting somewhere. Really appreciate all you advice guys. I'll keep you all posted. Take care, Dawn x
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japanzaman CH.com Veteran Offline I Love CH.com! Posts: 210 Fukuoka, JAPAN Gender:	Re: 3yrs since diagnosis and need support Reply #15 - Feb 5^th, 2014 at 9:05am For what it's worth, I've experienced some long migraine like headaches and symptoms along with my clusters before, and nausea is something that is also usually present during an attack for me.
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