Hello everyone! This is my first post and I'm seeking any and all advice you have to offer. However, the topic of this post is to see if anyone has advice on stopping a cluster before it begins when experiencing shadow pain.

First off, a little about myself: I'm a 22 year old female and I have suffered from cluster headaches since I was about 17 or 18. When I first began having attacks, they were not initially alcohol induced (but soon after, I connected the two), they would wake me up around 4 AM, and I was scared to death. Of course, I thought something was deadly wrong with me. However, I went through all the CT Scans and tests, and was diagnosed with cluster headaches. I've taken a variety of preventatives over the years. The last 2 years I've taken 40 mg propranalol twice daily. I will admit, sometimes I question the effectiveness of this medication, but I'm too scared to quit taking it. Up until recently, I have not had insurance, so help for me was practically nonexistent. Now, I'm prescribed 12 sumatriptan shots a month which cost me a whopping $55 for 4 at time after insurance (I'll get back to this in a minute).

I'm a college student and work crazy hours so my sleep schedule is whack. The restaurant I work at doesn't close until 2 AM on weekends and 1 AM on weekdays so I often find myself getting less sleep than I should. However, I LOVE to sleep and on the days I don't have any commitments I can easily sleep 12+ hours. I'm pretty sure my irregular sleep schedule does not help my clusters at all, but, for now, there's not much I can do to change it.
I've been pretty fortunate as far as how often I get clusters. During a bad week, the most I've had has been about 3 CH.

During a cycle, I am guaranteed to have a cluster the day after drinking. They are pretty textbook as far as symptoms, but some things vary. They are always on my left side, my eyes water, my nose runs, I yawn like crazy - all that good stuff, but I don't have the redness or drooping eyelid. I often experience nausea/vomiting with them also. The major difference between my clusters and textbook clusters is my CH can last for hours. I've rarely had one last under an hour and a half. They are normally 3-5 hours. In the last year or so, I started having the "shadow pain", people thought I was crazy when I tried to explain it to them - when I'd tell them I knew there was one just waiting to attack. "Quit telling yourself that, you're gonna 'think' it into existence." I'd even had people telling me, "it's just a headache". I began doubting my own sanity for a while there and wondering if maybe the doctors had missed something, that they weren't actually clusters because nothing on the "official" cluster headache websites said anything about this - they all said that a cluster came out of no where with no warning (which is how they began, and still occur sometimes). For me, shadows are a pain/pressure deep into the left side of my temple - it's simply forewarning me of an attack soon. Then I came across a forum where someone referenced shadow pain and I found some sort of relief knowing some one out there understood.

I hate to admit it, but clusters are fascinating beasts. The fact that I, and other sufferers can distinguish between a shadow, a cluster, and other types of headache is beyond me.  As I said earlier, I used to wake with them around 4 AM, but now, most of the time, I'll wake with shadow pain that will eventually evolve into a cluster (this is how it goes the day after drinking too). However, for the past 3 days I've woke up with shadow pain and have already used 2 shots. Which brings me back to the topic of this post: does anyone have any advice to stopping a cluster attack when experiencing shadow pain? As I mentioned earlier, the injections are pretty expensive and I really hate to use them unless it's a full blown attack, but they are the only relief I have found thus far. O2 is pretty much not an option here. I live in Georgia, USA.

Thank you for reading and thanks in advance for advice!
-Katie

Slam a Red Bull at onset of shadow!

-Gregg in Las Vegas

Hi Katie, welcome to this community of cluster headache sufferers,
sorry you had to find us but glad you did.
This website is full of people like you and we understand your pain and quest for relief.
You have come to the right place.
Try and get yourself some pure oxygen.
Click on the yellow tab on the left that says " oxygen info".

For longer lasting relief, check the info on the D3 regimen, it is helping hundreds of CH sufferers. For some, it provides partial relief, for others, total relief. You can read about batch's Vitamin D3 regimen in the "Medication, treatments, therapies" section of this forum in a thread called "123 days pain free and i think i know why", It's a long read but you can skip some of it.
We're here to help, like we got help when we joined this great group of people. Stick around.
All the best

Perhaps I missed it: are you now using one of the standard preventives? If not, see the artiicle at the bottom; print it out and talk with you doc.

Does your college provide any health care service? It may not be a deep service but the doc could at least right the Rx for your meds.

If you are willing to explore (with a few $), print what follows. This med has not gained much attention but, when I was usisng it, dose was $3 and it stopped my attacks with one dose within 15-20 minutes. And, as you will read, for a few folks, it stopped their Cluster permamently. Good change your doc can give you a sample, no cost, for a trial. If it works for you, it's the least expansive abortive I know of.
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Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Katie,

Another welcome.

As Thierry said, the Vitamin D3 regimen, otherwise called the Anti-inflammatory Regime is working for over 83% of those using it.

Go to the following link and scroll down to the second section which is the latest version, updated as recently as April.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Then ask lots of questions here. There is always someone here to help.

Peter

Thanks for all the help and suggestions ya'll! I've been busy lately and this is the first chance I've had to get on here. When I originally posted this, I had skimmed through other threads looking for suggestions & came across the red bull idea. I tried it with my next shadow and, to my surprise, it worked. I'm about to start looking into this D3 regimen since I've noticed it keeps coming back up in threads. Thanks again everyone!

Hey Katie, delighted that you have found something to relieve some of the pain.
If you have any questions, just ask. there a good few of us around on the D3 regimen and you might even get a reply from Batch himself if you asked!

All the best

Bear with me please, I looked on the link provided (thanks again!) and skimmed through it. It does seem like a lot of information & I do plan on reading every bit of it - eventually lol. I do have a question though (I apologize if the answer is provided; however, I merely "skimmed" the thread): should the doses be adjusted according to body weight? I'm about 115 lbs, 5'3".

I'm also concerned about nausea. I've tried taking multivitamins before and, more often than not, they came right back up. Has anyone experienced problems or read of any experienced with this regimen? I know my questions are becoming more specific so if I need to take them elsewhere, just let me know. Thanks a million!

Hey Katie, your questions are fine and there's enough of us here that you'll get an answer.
I did have a friend who was having some nausea from taking a multivitamin called Pharmaton. She changed to a different brand and the symptoms stopped.
Batch's D3 regimen states 10000iu D3/day. That amount is recommended for everyone, regardless of body weight. Same with the other components of the regimen.
All the best

Hi katie
Do you know you can split those sumatriptan shots so you get 24 for the price of 12.  Each shot is 6mg, but 3mg is plenty. On the left of your screen is a blue tab - imitrex tip - which will show you exactly what to do. It does mean using the needle twice so you have to make sure it stays scrupulously clean, or alternatively see if you can get some syringes - the type drug addicts use.  Discharge the pen into the syringe and use it from there. You can use half and save half.
It's also a much gentler way of getting the shot, because those pens go off like a damned nail gun. I do it all the time.

I am curious as to how I can break down my shots but I don't see the link anywhere.

Here it is Katie

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All the best