Hello there!  I have never been a part of a forum before so forgive me if I am not posting in the correct area. I'm 28yrs old happily married with two young children and recently diagnosed with having cluster headaches.  They started about two weeks ago and have been getting three a day every day all lasting at least an hour. It's crippling affect is causing a lot of issue with work and home life and I can already see the strain I am causing my wife who is helping me every chance she gets. I have done a lot of reading as of recent but wanted to get other input from people that are also dealing with this personally not just a doctors point of view.

With that being said I had a few questions If I may...

How long have you been suffering with cluster headaches?
Do these cycles some times go away and never come back or do they never end? 

I'm honestly at a lost right now and this has been a very humbling experience. I have always been that tough guy who shows no pain and I can honestly say that this breaks me down to nothing and for my children to see me this way is killing me right now.

Any information would be greatly appreciated and welcomed. Thanks

Hi slippa, and welcome,

slippa wrote, How long have you been suffering with cluster headaches?
Do these cycles some times go away and never come back or do they never end?

I suffered with CH's for 43yrs until starting the vitamin D
regime which you can find all the info on here. Their is no cure for CH's i'm afraid to say, only management treatments, like verapamil as a preventative, or oxygen, imitrex/imigran auto injectors as abortives.
Some folk do get remissions, but the beast always comes
back.

Hoppy.

Hey Slippa,

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

Check your PM inbox by clicking on the words "you have 1 new message" in the upper left corner of this window.  I've left you some information.

What were you prescribed for your cluster headaches?

The standards of care recommended treatments for cluster headache start with oxygen therapy and imitrex as abortives that are used to stop a headache that's already started. 

If used early and properly, at a flow rate of 25 liters/minute with a non-rebreathing mask, oxygen therapy is capable of aborting a cluster headache in an average of 7 minutes.  Imitrex (sumatriptan succinate) is also effective as an abortive. 

Imitrex comes in three forms, subcutaneous injection (the fastest abort 5 to 10 minutes), nasal spray (next fastest abort 10 to 20 minutes, and tablets (the slowest form at 25 to 40 minutes for an abort). 

You'll need medical insurance for imitrex as the injections run $100 a pop retail with a prescription...  Even then most insurance companies will only cover 9 a month...

Prednisone is a transitional preventative typically prescribed in a taper lasting 10 days to two weeks.  It should be accompanied by verapamil, a longer term preventative that will take 10 days to two weeks to reach optimum effectiveness as a preventative...  Just about the time the prednisone taper runs out.

Verapamil is also a heart medication so you should be given an EKG to establish a baseline and a followup EKG a few weeks after starting it..  You should also have periodic EKGs every 3 months.

See the following link on a study done by Dr. Peter Goadsby, M.D. titled:

"Electrocardiographic abnormalities in patients with cluster headache on verapamil therapy"

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

Accordingly, a neurologist who is experienced in treating patients with cluster headache should be familiar with the standards of care recommended treatments and have written you prescriptions for oxygen therapy, imitrex, prednisone and verapamil per the chart below.

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

If you haven't had these medications prescribed, print out a copy of the following link and take it to your neurologist.

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

When you next see your PCP or neurologist, be sure to ask for a lab test of your 25-Hydroxyvitamin D, a.k.a., 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status...  The odds are you are vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH.

Expect some of the oldtimers to chime in on how to handle your cluster headaches at home and in the work environment.

Take care and hang in there...

V/R, Batch

Batch wrote, Imitrex is also a heart medication so you should be given an EKG to establish a baseline and a followup EKG a few weeks after starting it..  You should also have periodic EKGs every 3 months.

I think he means Verapamil, not Imitrex.

Good catch Hoppy... Typo fixed... Thanks

Hey Slippa,
Can you outline the type of issues you're having at work. What kind of work do you do?
Peter.

Thank you for all this information.  I plan on getting a few more opinions rather than just my PCP.  This came on sudden and out of no where and now its like clockwork.  I have always been healthy and athletic, always playing sports and now this.  The headaches might as well be on an alarm....Morning, Dinner time and around midnight everynight.  I have been recently prescribed Topamax to take at night and Zomig at the on-set of an attack.  Since taking the Topamax it seems the attacks have calmed down a bit and I say that loosely.  I feel like I am fighting an attack all day it just never comes.  I am absolutely exhausted everyday now. 

As far as work, I manage construction.  While in a meeting stand point people have witnessed my eye slowly close in the midst of getting one of the these headaches and they could see my mood change instantly.  My wife knows instantly when one is occurring and tells me just to go upstairs.  With this all being said, my PCP diagnosed me instantly with having clusters, no tests no nothing but he also was witness to an attack in person.  Are there any other headaches or conditions you know of that mimic this in that manner? 

As always thanks again and glad I found this forum

slippa wrote on Feb 4^th, 2015 at 7:32am:

...Are there any other headaches or conditions you know of that mimic this in that manner?

There's plenty, Slippa. Many are simple and easily managed while others can be quite serious. This is why we suggest you find a headache specialist to find out exactly what the problem is.

In the meantime, and to help the specialist, it's well worth starting a headache journal listing when each hit occurs, how long it lasts and what the pain level was. (See the Kip Scale button on the left of your screen.

Include what you've eaten, the weather, anything you can think of that might be a trigger. Importantly, also list any medications you're taking as these can serve to make a true diagnosis more difficult.

It's not the end of the world, though we know only too well it can seem like that, but there is a ray of sunshine on the horizon. Let's focus on it.

Also, please let your family know that we're here for them, too.

Slippa,

I work as a Facilities Manager for a large insurance company and I am in the middle of a large office construction and upgrade project for one of our satellite buildings, with a second project proposed for our corporate HQ next year.

I too have been hit in the middle of meetings on a few occasion... Bloody embarrassing.

I can manage many of the aspects of work from home with on-line connectivity and cell phone. (Budget/ programme reports etc). I made sure my Quantity Surveyor was fully aware of my situation from the start and he has been a huge support. Having said that, I've worked with him for years.

The rest of the team, Architect, Site Manager, Engineers etc are also aware and work around my issues as much as possible and they are very flexible around scheduling site meetings. Indeed, I've even had a few design team meetings here in my home, when the Beast was doing his worst.

I am also lucky enough to have an excellent person reporting to me who has taken a lot of the day to day rubbish off my shoulders. When I'm not "out & about" we will communicate by phone daily, sometimes in the evenings and weekends. She's the best asset I have.

I don't know if that's of any use to you. It works for me right now.

By the way, I've been suffering CH for 13 years now.

Hope this helps in some small way.

Keep the faith.

Peter.

Check with Pete about the D3 regimen. It's helped a LOT of us. But it's a commitment that you don't stop when you go out of cycle. I've been PF since starting it back in Oct of 2013 and I highly recommend it.

The Topamax worked for me for years and years (I'm chronic) and kept me sane. what does your doc have you on? It does have side effects (as some on here will tell you) but taking it at night usually eliminates most of them (or it did for me).

Also you might try taking melatonin before bedtime (it gets you thru the REM - Rapid eye movement - where the CH usually hits) and gives you some rest at night (I take 20 mg at night and have for years).

And READ READ READ.... There's a LOT of information on this board from those of us who have been right where you are and we DO understand and are here to help...  :-*