Well, I had a nice 15 months off from “The Beast” and now I’m in my second day off a full cycle.
I have a completely different attitude this time around.
I’m determined to not live in fear and have been preparing…

After being a Cluster Headache sufferer for about 15 years, I was finally diagnosed and treated by an awesome Neurologist who specializes in headaches about 2 years ago.
(Dr. Neil Pugach)
My previous cycle was the first one after being diagnosed and was able to learn a lot about what works and what doesn’t work for me.
Sumatriptan injections are the greatest thing in the world!
In my case, oral steroids are a BAD idea.
And Insurance companies are heartless bastards…

So, my last cycle was the first time I used Sumatriptan injections (Imitrex) and while they worked 98% of the time, like most CH sufferers, I was not able to get an adequate amount of it.
I was forced to do the “Imitrex Tip” in order to get by.
While the “Tip” worked ok most of the time, it did have some issues.
The most notable of which was rebound.
(I do not have rebound issues with full doses.)
Well, my pharmacy switched from the Imitrex Injector kits to the one time use “Dr. Reddy’s” auto injectors, so unless I inject into a container and then use an insulin needle to split up the dose, I have to take the full dose in one shot.

To compound the issue, last cycle, my Neurologist tried a course of oral steroids as a preventive.
The steroids worked for about 24 hours as a preventive and then “The Beast” came back with a vengeance.
Instead of my typical 10 day CH cycle, I had a six week CH cycle!
After about two weeks, the insurance company (BC&BS) decided that they didn’t want to pay for anymore Sumatriptan injections.
(Even with letters from my physician.)

Well, when I’m well motivated, I can be a pretty persuasive guy.
So, I was able to make my way through several layers of management at the insurance company until I was able to speak with someone with enough authority to override the automated stop.
I only lost my cool one time when I was on the phone.
This was when the person on the phone said, “I completely understand what you are going through, a family member of mine has Migraines.”
MIGRANES, MIGRANES, are you kidding me!!!
(People on this board are the only ones that know exactly why saying this to someone with CH will set them off.)
In the most calm tone that I could muster, I calmly told this person that while they are both technically headaches, the only real thing they have in common is that the pain resides in the head.
I then asked if she was sitting in front of a computer with internet access.
She said that she was.
I asked her to please Google “Cluster Headache” & “Suicide Headaches” and take a few minutes to read over any of the links that pop up.
It is common for Cluster Headaches to be regarded as the most amount of pain that the human body can experience.
(I’m not looking for a prize here.)
I then proceeded to tell her that there is absolutely no way to abuse Sumatriptan injections and that this medication is the only thing that brings relief.
She promptly authorized two months’ worth of medication with the ability to be renewed upon request from my Neurologist.

After that, I vowed that I would do everything in my power to NEVER be without Sumatriptan Injections.
I continued to fill as many refills as I could after my CH cycle went back into remission.
I stock pilled enough to handle a compete CH cycle so that I would not have to stress over managing my dosages.
The most stressful part of my last cycle was having to decide whether or not to take a “Hit” from a CH during the day so that I could save a dose of medication for the inevitable 11:00 “Hit”.
Bullshit, no more!

I decided to build several “Cluster Headache Crisis Kits”
They are in the smaller Pelican brand air tight hard cases and contain enough doses to last a minimum of five days each.
I keep one at work, I have one that I travel with, and have two more that I keep in reserve in case there is a shortage.

That brings me to today.
Never have I had the comfort of knowing that I can “Slay The Beast” at will.
Instead of having to stress over running out of medication, now I can just causally work on restocking my supply.
Bring it on, I’m prepared and I’m in control!!!

Have you looked into the Vitamin D3 Regiment on here.
It has lots of us CH free.

Cheers, Hoppy.

Thanks for all the replies.

As for Verapamil, my Neurologist said that my cycle is too short to be a viable option.
(Typical cycle has been ~ 10 days.)
He said that by the time is built up in my system at sufficient levels, I would be out of cycle.
On top of that, I’m not a big fan of the side effects that high doses of Verapamil comes with.

As far as other treatments go, I’m a bit hesitant on trying other stuff after my experience with oral Steroids.
Not only did the steroids not work, they extended my cycle dramatically and causes a lot of other side effects.
My Neurologist wants to try an injection of steroids in my scalp, but I’m fearful that it might have the same result.

Right now, I would be over the moon if I can maintain a 10 day cycle that is managed with Sumatriptan.
Especially if my cycles continue to be 15 months apart.
Having the ability to kill “The Beast” at will is so empowering.
The risk of trying a different treatment and it extending my cycle out to over 6 weeks is unacceptable.

Of course the age old issue of cost and availability of Sumatriptan injections comes up.
If memory serves me correctly, the cost per dose of generic Sumatriptan injections are somewhere around $75 USD.
A name brand product like Alsuma or Imitrex is much more expensive.
I can certainly understand why the insurance companies don’t like covering them.
With that said though, it is worth every penny!
A tool that is able to do what it does, is incredible and in my case does not have any negative side effects.

Sumatriptan availability can also be an issue.
Not too long ago, Pfizer announced that they would no longer be producing any and there was a separate incident where entire lots had to be destroyed due to contamination.
This combined with the relief of not having to stress over obtaining medication while in cycle, makes me so happy that I decided to stock up.

An interesting side effect that my CH cycles have on me, is a sense of “grounding”.
As people often do, one gets wrapped up in everyday life and the stresses that come with it.
There are only two things that have ever centered me quite like a Cluster Cycle.
Those being a nearly fatal car accident and the birth of my daughter.

I have chosen to take control of the situation and embrace the positive.
Having the tools in hand to manage things allows me to not live in fear.
Transforming a CH cycle into a reminder of what is truly important in life just makes me smile.
Thank you to everyone on this board that has helped me get here!

With such a short cycle time I can see why using a preventive like verapamil, lithium or topamax will not be effective since they all take time to become effective and your cycle will be over by then.

Normally prednisione would be used to cover such a short cycle, but it doesn't work for you.

So I'd consider the D3 route and stay on it long term or just using abortives (oxygen, imitrex, etc.) for the duration of the cycle.

Hey PT.

Welcome to Clusterville...

And I echo the others who said "D3 regimen".  It's working for so many of us to keep CH at bay. Some for years and years.. I'm going on two years now without a headache.. That's after being chronic since 97.

The triptans work to get rid of the pain when it hits, but don't do anything to keep them away.. D3 is working to KEEP them away.. And D3 isn't going to hurt you and you don't have to deal with an insurance company with it..

maz

have you looked into how to stretch those jabs , the general consensus being that you dont need the full amount of each pre filled syringe so you can get 2 injections out of one with it still working.

Hi,

I refused to use the triptan injections a couple of years ago. Not very good for the heart.

Peter.

Bob,

Your point is well made. My choice was purely personal as I decided that they were not worth the risk, especially as I'm a smoker.

I emphasise that this was MY view and in no way infers that Triptans don't have a well earned place in the arsenal against CH.

Peter.

One other factor around people splitting them is related to the cost. In the countries where there is a national health system, like the UK and NZ the cost of the prescription does not reflect the cost of the medication with things being often heavily subsidized.

Here in NZ, prescriptions cost NZ$5, which is about US$4. For that I can get 1 sumatriptan injections. It costs me more to go to the pharmacist to pick it up!

It is always interesting to see all the responses on this board.
I do appreciate the support, but I would like to point out that the D3 suggestions that always come out in droves regardless of the post, may have some unintended consequences.
While not the case with me, some might interpret the D3 advice as being told, “All you have to do is take your vitamins stupid!”
Sometimes the most helpful reply is just hearing from another person who has they unique experience of "Dancing with the Devil".

Here is a link to my previous posts outlining my history:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

While the D3 treatments may work for many, it is not a treatment that is recognized by most Neurologists.
For me, while I don’t discount any treatment that may work for folks, my previous experience with oral steroids makes me not want to try anything other than what is working for me.
The risk of extending a cycle beyond my normal 10 days to over six weeks is unacceptable.

Speaking of treatments that are not recommended by most Neurologists, O2,
The flow rate of O2 that is effective as a CH abortive is considered toxic and is viewed as hazardous.
Of course if it works for you, roll with it.
One of the things that has always been interesting to me is that the treatments for CH Syndrome are far more dangerous than the physical effects of CH.
(That is only true if you discount the suicide risk associated with those who have to experience CH.)

NOTE:
Please do not attack me regarding treatment recommendations.
I'm only repeating what has been told to me by my Neurologist, whom is highly regarded in the CH Community.
My opinion is that every CH patient is unique and they need to utilize any and every tool at their disposal to get the relief that they so desperately need.

As far as Sumatriptan injections, some people have serious side effects.
Fortunately for me, I don’t have any other than the discomfort of getting stabbed in the leg.
(I’m 6 foot 1" and weigh 200 lbs.)
Splitting doses does not appeal to me if I can avoid it.
Out of necessity, I experimented during my last cycle with ¼, 1/3, and ½ doses.
While the split doses would work most of the time, the time it took to work and the rebound HA that sometimes happens, made me decide not to do that again if at all possible.

It looks like my normal cycle length of 10 days has returned.
The last two days were extremely distressing.
During that period, I had 4 to 5 hits a day that would escalate up to a KIP 9 level before the Sumatriptan had any effect.
(Within 20 minutes, the hit would get that bad, but when the Sumatriptan started working, it would be gone in 10 - 15 minutes.)
Mercifully, I went back to complete remission right after that.
It’s been almost 72 hours without a CH now…

I still have enough of a Sumatriptan stash to cover an entire CH cycle.
I’m in the process of replenishing the stock that I used over the past 10 days.
My copay price is $10 for 8 auto injectors and hopefully I won’t have to hit the insurance company up to extend the amount of refills they will cover.

I can’t tell you how much of a difference it made having the peace of mind knowing that I didn’t have to worry about running out of medication.
It was by far the best CH cycle I have ever had to deal with.
(As good as a CH cycle can possibly be.)
The feeling of dread and anticipation of the next hit while being in the fuzz of the shadows was not present at all.
Taking the attitude of maintaining ownership of the situation made a huge difference for me.

On a side note:
For those concerned about the expiration date on their Sumatriptan, don’t.
Speaking with my Neurologists, the medication is still safe and effective for two years after that date if it is stored in a cool dark location.

Once again, thank you all for allowing me to share my latest experience with the group!

Hi PT

It is always interesting to see all the responses on this board.



I do appreciate the support, but I would like to point out that the D3 suggestions that always come out in droves regardless of the post, may have some unintended consequences.
While not the case with me, some might interpret the D3 advice as being told, “All you have to do is take your vitamins stupid!”



Sometimes the most helpful reply is just hearing from another person who has they unique experience of "Dancing with the Devil".



Here is a link to my previous posts outlining my history:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

While the D3 treatments may work for many, it is not a treatment that is recognized by most Neurologists.



For me, while I don’t discount any treatment that may work for folks, my previous experience with oral steroids makes me not want to try anything other than what is working for me.
The risk of extending a cycle beyond my normal 10 days to over six weeks is unacceptable.



Speaking of treatments that are not recommended by most Neurologists, O2,
The flow rate of O2 that is effective as a CH abortive is considered toxic and is viewed as hazardous.



Of course if it works for you, roll with it.
One of the things that has always been interesting to me is that the treatments for CH Syndrome are far more dangerous than the physical effects of CH.



NOTE:
Please do not attack me regarding treatment recommendations.



I'm only repeating what has been told to me by my Neurologist, whom is highly regarded in the CH Community.



My opinion is that every CH patient is unique and they need to utilize any and every tool at their disposal to get the relief that they so desperately need.



As far as Sumatriptan injections, some people have serious side effects.
Fortunately for me, I don’t have any other than the discomfort of getting stabbed in the leg.
(I’m 6 foot 1" and weigh 200 lbs.)
Splitting doses does not appeal to me if I can avoid it.



Out of necessity, I experimented during my last cycle with ¼, 1/3, and ½ doses.
While the split doses would work most of the time, the time it took to work and the rebound HA that sometimes happens, made me decide not to do that again if at all possible.



It looks like my normal cycle length of 10 days has returned.
The last two days were extremely distressing.
During that period, I had 4 to 5 hits a day that would escalate up to a KIP 9 level before the Sumatriptan had any effect.
(Within 20 minutes, the hit would get that bad, but when the Sumatriptan started working, it would be gone in 10 - 15 minutes.)
Mercifully, I went back to complete remission right after that.
It’s been almost 72 hours without a CH now…

I still have enough of a Sumatriptan stash to cover an entire CH cycle.
I’m in the process of replenishing the stock that I used over the past 10 days.
My copay price is $10 for 8 auto injectors and hopefully I won’t have to hit the insurance company up to extend the amount of refills they will cover.

I can’t tell you how much of a difference it made having the peace of mind knowing that I didn’t have to worry about running out of medication.



It was by far the best CH cycle I have ever had to deal with.
(As good as a CH cycle can possibly be.)
The feeling of dread and anticipation of the next hit while being in the fuzz of the shadows was not present at all.
Taking the attitude of maintaining ownership of the situation made a huge difference for me.



On a side note:
For those concerned about the expiration date on their Sumatriptan, don’t.
Speaking with my Neurologists, the medication is still safe and effective for two years after that date if it is stored in a cool dark location.

Once again, thank you all for allowing me to share my latest experience with the group!

WOW!!!
People on this board get upset pretty easily…

First of all, those of us with CH are generally more knowledgeable about the condition than most Neurologists because we have a vested interest.
Unfortunately, we need those Neurologists to get prescriptions and insurance coverage for the care we need.
My Neurologist is a headache specialist and has actually spoken at CH events. (Dr. Neil Pugach)

That being said, do what works for you.
Every CH suffer has their own story and things that work for them.
(Hit the mushrooms if that works for you…)

On to Oxygen…
Yes, it works for a lot of CH patients.
The flow rate that is required for it to work scares most Doctors.
Look up Oxygen Toxicity…
“Oxygen toxicity is a condition resulting from the harmful effects of breathing molecular oxygen (O2) at elevated partial pressures.”
That is what doctors are concerned about.
I’m not making this up or distributing false information.
In fact, I learned about this from the information published on this site!
Are the doctors wrong?
No, they are just going off what they learned in med school.

The point I was trying to make is that quite a few effective CH treatments are not viewed to be particularly safe by traditional medical standards.
Verapamil = Dangerously low blood pressure
O2 = Perceived risk of Oxygen Toxicity
Sumatriptan = Cardiovascular Risk
Psilocybin Mushroom = Illegal

D3 Regiment…
It may work great for a lot of people and I will likely try it.
The rate at which members here mention it in just about EVERY post as a cure all is off putting.
My Neurologist doesn’t recommend it or O2 therapy for that matter.
There are plenty that do.

On to me…
It has taken me almost 15 years to get a handle on the Beast and I’m not real anxious to try something new when I currently have an effective means of management.
My cycles are relatively brief compared to most and my remission times are anywhere between 6 to 16 months.
Why the hell would I want to do anything that might run the risk of changing that pattern?
Steroids most definitely did and I need to look at the risk vs. the gain.
Of course it is the nature of the Beast to change and anything can happen.

Cheers…

We are not upset, and sorry if we've upset you. It wasn't our intention, and we don't think you are making it up. Far from it. It's just that things like D3 have been so fantastic that we feel it's only fair to pass it on. It would be criminal to discover something that helps and then keep it to ourselves. You have been bombarded with posts about it because so many people have benefited from it and want to share that. It's not a cure all, but if it saves just one person from intolerable pain it must be worth a try. You could be that person.
What does upset me and often brings me to tears is to hear how people suffer because their doctor refuses 02, or because they are too scared to try things which are known to help.

02 is also a life saver for most of us and when sumatriptan is in short supply for whatever reason  - well, I'm sure it's saved mine. I have no ill effect from it. Nor do I from sumatriptan.

Our fear is that a newbie should come along and be scared off by your post, when they could be helped by the above methods.

I agree we all need our neurologists in order to get what we need, but they DO sometimes get it wrong. I had three wrong diagnoses before I got the right one which resulted in over 5 years with no help what so ever. To get the right diagnosis and meds at long last was such a relief.

All medication has it's risks no matter what it's for- even a plain old aspirin for an ordinary headache (my favourite kind). We have to decide if the benefits outweigh the risks, and it's a decision that we alone can make for ourselves.
Me? I too am reluctant to switch meds or try new ones when, like you I feel I now have a handle on this thing. But I wouldn't give up my 02 for a kings ransom.

Sorry once again if you have been offended, or feel we have "put down" your info. It was the last thing we were trying to do.
Take care
Maz.