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First Post From New Member: Hello Everyone! (Read 917 times)
Jason Z
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First Post From New Member: Hello Everyone!
Aug 8th, 2019 at 6:45pm
 
When I started getting these attacks as a teenager (35 years ago) I was misdiagnosed with migraine, in part because it runs in my family. I used to bash my head against the wall when I got attacks and wish I could cut my eye out of its socket. I even asked my Dr. to amputate my eye, which she refused to do, saying it wouldn't help. (Still, if that did the trick I would do it without hesitation.) Finally diagnosed with Cluster Headaches about 6 years ago, for the first time in my life I've found some relief. Oxygen worked for me the first time I tried it and I was so overwhelmed that I wept. My attacks are triggered by relaxation, sleep or even the tiniest trace of alcohol. I could be wrong, but I've noticed a correlation just lately with sparkling, intense sunlight. Not sure about this because I've only noticed it three times in the last few weeks and never before in my life.  They come like clockwork, waking me up a few hours after I've fallen asleep. So, I take Verapamil twice a day and a combination of oxygen and Sumatriptan at onset. I'm entering my third month of this cluster cycle and haven't slept through the night in over 10 weeks. I dread going to sleep because I know the next thing I feel will be excruciating pain. My husband of 25 years is incredibly supportive but feels totally helpless. Presently the oxygen will stave off a headache for a few hours, but it always comes back. The Sumatriptan seems to work very well, but the pills take 30 minutes to kick in. The injectable Sumatriptan works almost instantly, but I can only get 8 doses in a 23 day period. So I'm saving those for when I'll be away from my oxygen tank for a 5 day trip next week. I've had some success with acupuncture.
I'm so grateful to find this community and see some similar stories about how truly excruciating these headaches are. There is no pain that I've ever felt IN MY LIFE that comes anywhere near this level of torture. Even calling it a "headache" just doesn't do it justice. It is absolute agony. I was and am, totally serious about amputating my eye if that would end these attacks. No question.
Super glad to hear that there are some more promising therapies on the horizon. Waiting to try a new, once-a-month injectable that my Dr. suggested. I hope it helps because I am worn-out, depressed and short-tempered. My longest cycle was 8 months with, maybe one or two nights in the entire period where I didn't get an attack. The longest I've gone without entering a headache cycle is a little over 10 years.
So, hello and thank you to all of you in this community. Thank you all for being here.
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AussieBrian
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CH - It's all in your
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Re: First Post From New Member: Hello Everyone!
Reply #1 - Aug 8th, 2019 at 10:29pm
 
G'day Jason,  welcome,  and getting that diagnosis is so important because at least now you know the beast you're dealing with and can finally fight back.

Shame about the Sumatripan shortage but as your headaches are so close to clockwork you could perhaps take a pill an hour or so before a big one is due to give it time to start working within your system.  There's also a button on the left side of your screen marked  "Immitrex Tip"  which might see you get more than one shot out each of your eight injectibles.

Also look around the boards here in regard to the vitamin D3 regimen which is offering great success for many people at just pennies a day.

You say you have a great supporter and I ask you give him our sincere thanks because people like that are hard find to find and we rate them right alongside gold and diamonds.

CH is an absolute menace,  no doubt about that,  but the fight is winnable.

All the best from down under,

Brian.
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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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Jason Z
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Re: First Post From New Member: Hello Everyone!
Reply #2 - Aug 9th, 2019 at 12:28pm
 
Thanks Brian.
It means a great deal to me to hear back from you.
Just knowing that there are other people who understand...
I'll look into the D3. Thanks for the recommendation.
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Peter510
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Re: First Post From New Member: Hello Everyone!
Reply #3 - Aug 9th, 2019 at 4:43pm
 
Jason,

Welcome to CH.com. Lots of support and wisdom to be found here, from expert sufferers all over the world.

Brian has given you great advice on the D3 Regimen. I am a chronic sufferer of many years and, like you, it took many years of despair before I got a diagnosis.

However, even with the diagnosis the only treatment that worked for me to any degree was the D3. It has, literally, saved my life.

This treatment was designed by Pete Batcheller (Batch), our most dedicated member and has made a significant improvement in the lives of countless sufferers.

So, here is the detail. Read and come back with questions, comments, as much as you need.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

And remember, you are never alone. There is always someone here, even if it’s just to listen.

Best,

Peter.

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You don't stop laughing because you grow old....You grow old because you stop laughing.
 
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Jason Z
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Re: First Post From New Member: Hello Everyone!
Reply #4 - Aug 9th, 2019 at 5:06pm
 
Thanks, I have to admit that I really want to try the D3, but I am so tired and fuzzy headed-that I feel overwhelmed by all the different pills and doses. I've read the D3 link a couple of times and I worry about starting without getting my bloodwork done first, whether to take it with meals, hours apart from my verapamil... 10 weeks without sleeping through the night has shredded my ability to think clearly. Any advice for a simple way to begin?
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Mike NZ
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Oxygen rocks! D3 too!


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Re: First Post From New Member: Hello Everyone!
Reply #5 - Aug 9th, 2019 at 10:36pm
 
Hi and welcome Jason

You've found somewhere where we know the true nature of extreme pain that can come with a CH.

We've even got our own pain scale, which was created by Bob Kipple to describe what it can be like.

0      No pain, life is beautiful
1      Very minor, shadows come and go. Life is still beautiful
2      More persitent shadows
3      Shadows are getting constant but can deal with it
4      Starting to get bad, want to be left alone
5      Still not a “pacer” but need space
6      Wake up grumbling, curse a bit, but can get back to sleep without “dancing”
7      Wake up, sleep not an option, take the beast for a walk and finally fall into bed exhausted
8      Time to scream, yell, curse, head bang, rock, whatever works
9      The “Why me?” syndrome starts to set in
10      Major pain, screaming, head banging, ER trip, depressed, suicidal.

I think a 10 burns memories into your brain of something truly beyond description. There seems to be no pain like it from reports of lots of people here over the years, although it isn't really a competition as to what gives the worst pain as all pain can be horrible in its impacts.

The idea of something like an eye amputation to get rid of the pain really shows people who don't have the experience what sort of pain we can go through.

I too have relaxation as a trigger for CH, although some people have the opposite and it is stress that is the trigger.

Alcohol is a very common trigger for the majority of people with CH, although not for all of us. Aussie Brian is very kind to offer a service for taking "care" of your alcohol for you.

Again sleep is a common trigger for most, although not all.

I've not heard of bright sunlight being a trigger, but I wouldn't rule out that you might have CH and migraines (quite a few of us have multiple headache types, with CH and migraine being probably the most common).

I wrote up a detailed post on verapamil a few years ago, which will be well worth a read - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

For oxygen, are you using a non-rebreather mask? How high is the flow rate (15lpm+ with higher being better)? Read up about O2 at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Am surprised by your experience with acupuncture helping as this is very rarely reported. But great that it helps you.

I'll also back up the suggestion about D3 (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register). Over 80% of people using it get a positive benefit with many (including myself) going CH pain free for multiple years. I'd strongly suggest you give it a go as the impact of it can be massive.

It is wonderful that you've got a supporter who is there for you. CH is pretty tough, not just on us but on our supporters too. Mine is better than gold, she is more like a combination of platinum and diamonds when I need her.

Since you're tired, why not ask him to look into it for you? I'm sure he'd be happy to try to help.

As for advice on where to begin, it's one step at a time, plus enjoying the time between CHs as much as you can.
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Jason Z
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Re: First Post From New Member: Hello Everyone!
Reply #6 - Aug 12th, 2019 at 11:46am
 
Thank you very much for your thoughtful and detailed reply.
It means a great deal to me that you took the time to reach out.
Thank you.
One of the things about my experience with acupuncture is that I have such a strong desire to find ANY sort of pattern that I'm sure I assign meaning to conditions and events that may correlate without cause. I had the intuition that the acupuncture helped to reset my circadian rhythms and helped break the cluster I was in at the time, but I haven't had the same luck with this cluster...
I'm on a multivitamin that includes 175% RDA D3, along with magnesium and verapamil and my cluster seems to be tapering off. No attack last night, mild attack the night before, broken with Oxygen and a shallow attack the night before that. 90 minute onset, which is very unusual, and an hour long headache at a (comparatively) manageable 6-7 Kipple. I was "only" rocking back and forth and moaning. So, I'll keep taking that Multi.
In any case, I'm clinging to the hope that this cluster is tapering off. The shadow which is always there during my clusters seems to have vanished. I'm only getting periodic echos of the "electric tickle" that is my shadow.
Until I got to this forum I knew my experience was excruciating, but without the Kipple scale and others who share this torture, I thought I was being overly sensitive or, just not strong enough to deal with "a headache." It's shocking to find validation for the scale of this challenge.
Thanks to you again and everyone here.
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Peter510
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Re: First Post From New Member: Hello Everyone!
Reply #7 - Aug 12th, 2019 at 3:20pm
 
Jason,

What is the dosage of D3 in that multivitamin you mention. It should be stated in IU (International units)?

Peter.
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Jason Z
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Re: First Post From New Member: Hello Everyone!
Reply #8 - Aug 12th, 2019 at 3:54pm
 
Dear Peter,

It's listed as 700 IU.

Thanks,

Jason
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Peter510
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Re: First Post From New Member: Hello Everyone!
Reply #9 - Aug 12th, 2019 at 5:59pm
 
Jason,

You should really follow the 4 week loading dose set out in Batch’s paper and then have your bloods done to establish your 25(OH) level.

700iu daily is not likely to build your D3 levels high enough to chase the Beast away.

Peter.
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Jason Z
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Re: First Post From New Member: Hello Everyone!
Reply #10 - Aug 19th, 2019 at 8:16pm
 
Thank you Peter,

I will do so.
Just got back from being away for 4 days, three of which were CH free! This is very unusual for me and almost always means that my cluster is breaking up. I will start the regimen and get my bloodwork done, now that I'm able to think clearly again.
It's amazing what sleeping through the night does for making me feel human again.
Wishing you the best,

Jason
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