Hey Clusterheads!  My name’s Ron and I’d like to introduce myself.  I’m 45 and live in San Diego County, CA, originally from an hour west of Philly.

I’ve been checking out this site for the last few weeks and I can honestly say I think I’ve found my family!  I about cried… No, I did cry when I read the posts on the home page.  They took me back to a day when I was un-diagnosed and thinking I was losing my mind. 

I’ve been suffering from CH since I was 23, decided to see a doc at 38 and finally got a correct diagnosis at 40.  I’ve been t-boned on my Harley (broken hip and ankle) and that pain is kitty pain compared to CH.  At 40 these things put me in the ER and boy oh boy do I know what a 10 is!  And I bet that many people reading this know what a 10 is too.  I guess we’re members of a club that we’d all rather not be in.

I’m here cause the Beast is back and I’ve got questions.  Yes, I regularly see a neurologist although you have to remember a neuro isn’t a CH specialist.  When I come in with theories, we talk and one thing I’ve learned… Neuros have lots of patients and we’re a rare breed.  I’ve found a guy that is very receptive to my theories and after much trial and error these last few years, I’ve found a combination that works pretty well for me [Zomig nasal (5mg) and Verapamil (400mg/day)].  I’m not going to say the Beast is on a leash cause the pucker is probably listening;-)  I’m episodic and at one time we were playing with the word chronic (long story for another post).

I’m starting to get your vernacular (shadows and such) and I’m now using the Kip scale. 

I’d like to shake hands with, and hug and kiss everyone (as appropriate) on this site.  I can feel the love!

Thanks for being here cause it's been a long lonely journey till now!

Ron

Karl,

Thanks for the welcome!  I’m doing okay although I think everyone here is looking for their silver bullet (or a better way).  I have had a chronic shadow for at least 6-8 months and my nuro and I are starting to think this shadow is actually a secondary headache caused by the verapamil. 

This is good news since we were playing with the word chronic.  I found a great post on the CH specific board about shadows and I’m looking forward to hearing some responses to my theory.

I’m going to get some Red Bull and I’m definitely going to request O2 since the Zomig can be a little hard on me at times.

Something I’ve noticed about Zomig…  I’ll feel an attack coming on and I’ll take the Zomig and it’s like I woke the damn Beast and the pain spikes before it decays.  It can be one hell of a ride sometimes.

PF wishes to you!

Ron

Hi Ron,

Welcome home my cluster brother!  Like the saying goes, I'm glad you're here but sorry you have to be.

As you've already seen, there is lots of great info here and a gaggle of nutjobs who know your pain, where you've been and where you're trying to go.

I found this place a year ago last June after 12 years of looking for answers.  It is an amazing, empowering and validating feeling to find out there are others just like you.

I use Verapamil as my preventive too.  At first I used the sustained release formulation but found much better results with the regular release formulation.  You have to take it three times a day but man what a difference.  I got a number of days completely PF and when I do get hit the level is much reduced.  400mg a day does the trick.  I take it 120 7am / 120 2pm / 160 10pm.  So long as I stick to this I'm good.  Miss one dose and things get crazy within a day.  Consistency is the key.

I get shadows off and on like most others.  I had them for years before I ever started Verapamil so, for me anyway, I don't think the two are related.  One thing you will learn here is that, for all our similarities, we are each very different in how we deal with pain and what works for us.  Add to that the ways the beast changes with time and you get quite a mixed bag.

For aborting these damn things I primarly rely on Oxygen.  100% Oxygen at 15lpm through a non-rebreather mask.  Back that up with an energy drink and it's usually lights out for the beast.  Sometimes I have to rince and repeat with the O2 before he's completely gone.  This stuff is way cheaper than triptans and can be just as effective when used properly.  Like everything else, YMMV.

If the bastard still refuses to leave I pull out the big gun - imitrex injections.  They never fail me.  I do get a similar reaction with a spike in the pain immediately followed by the downward spiral as it leaves.  I think that's just the vasoconstrictor we're feeling.

Using O2+energy drinks+verapamil I only used 4 Imitrex injections last cycle.  Haven't used any yet this cycle which started two weeks ago.  Anytime I kick his ass without injecting I win! 

So read everything, take what is useful and leave the rest.  It's good you have a Dr that you can work with.  It is a great feeling.

-Dennis-

Hey Ron,

Welcome to Clusterville -- sorry you have to be here, but glad you found us after all this time. And yes, we are one big family and growing daily.

Get thee to the O2!!! About 70% of your kinfolks here swear by it....  Make sure you have a regulator of (at least) 15liters per minute and a NON-REBREATHER mask (that's VERY important). 25 liter regulator is even better.

Red Bull (or another energy drink - check the lable for caffeine and at LEAST 1000mg of Taurine) is good - chug it at the first sign .

You didn't say if you were getting hit at night, but if you are try some melatonin (12-15mg). It stops night hits for me (usually - nothing is perfect) and a lot of others here.

We're here to help in any way we can, so pull up a chair and start reading. Some of old-timers (and I've been here since we started moving dirt in) forget what you youngins don't know - so you'll have to ask questions if ya don't understand something. Someone will be along to answer them.

Again, welcome to the family.

Hugs BD

  Welcome Ron,

    The longer you are here the more you will understand that this family really sticks together and that you are now a part of that family and will never ever be alone in this again.   We all understand wht you are dealing with in a very personal way.

    Get that Dr. to give you a script for oxygen.  To save you money, if you get the E-tanks...PM me, and I will send you a regulator that goes to 25 lpm which will decrease your abort time tremdously as well as sending you a non-rebreather mask.

   All newcommers get to ask as many questions as they want.   


Linda

Welcome to the team ron, i just added you to the clusterhead roster. You are a valued member of the team now, and we depend on you to help other newbies now, you have alot of cluster experince and can be very helpfull with your tips and tricks on how to battle the beast. So pick up a ore and start rowing. Coach bill

Hey Ron!  Go easy on the Melatonin.  You should titrate up 3mg a night every few nights to eventually hit that 15mg level. 

Glad you got some sleep last night.  Glad you woke up this morning too 

-Dennis-

Glad to hear you guys are getting some relief..

And don't pay any attention to Chuck -- we only let him out of the "home" a few days a week.    And we let him 'think' he's normal - keeps him calm and all that. He just hasn't been the same since that toliet seat incident.

By all means set up a Meet and Greet in your area and get together. It's one of the experiences of a lifetime. For some reason (and no one's been able to explain it yet) you will never meet a stranger and there will an instant bond. May sound strange but once you meet another Clusterhead - you'll understand. The first one I met was in a crowded airport and he had his back to me and I had no idea what he even looked like (he was meeting my plane, but we didn't know each other). I just "knew it was him" and called his name and he turned around. Weird, but true. I don't think we ever introduced ourselves. We just started hugging.

Hugs BD

Cluster headaches are a rare, severely painful form of headache that is related to but different from the more common migraine. Dr. Peter Goadsby, the world's leading researcher on cluster headaches, has commented, "The pain of a cluster headache is worse than natural childbirth or even amputation without anesthetic." The pain of a cluster headache commences quickly, without warning, and reaches a crescendo within 2 to 15 minutes. It is often excruciating in intensity, and is deep, nonfluctuating, and explosive in quality. People may have episodic or chronic cluster headaches."

We are probably some of the toughest SOB's on the planet. 

Hey clusterbuddies,

Just an update for ya! 

The melatonin is working great and I’m getting some sleep…. Yipee!  I’m using 9mg now and finding it effective without being groggy in the morning.

Red Bull is actually helping a bit.  I didn’t think so at first, but for mild shadows it can be a great.  I will continue to experiment with it.

I have an appointment next week to discuss O2 with my neuro and I’m really looking forward to giving it a try.  I plan to get him to write a script for oxygen therapy, 15 lpm using a non-rebreather mask as needed for CH.

Yeah, you guys are tough SOB’s and smart too!

Thanks for all the assistance!

Ron

Melatonin, if effective, can drastically change your life.  Glad you have some weapons that are working for you.

Thanks for all the welcomes!

I must admit…  The melatonin IS changing my life.  It’s amazing how it keeps the Beast at bay during the nights when my hits are always the worst.  I’m sleeping more and that’s a very good thing.  And yes Linda, I will bump it up to 12mg.

Every time I have a cycle I learn more and this time I’m very lucky to have an army behind me.

Everything considered, I’m doing okay and I have this site and the wonderful people here to thank for it.  I can remember a time when I was in the dark, un-diagnosed pit of despair end even though I’m getting hit, it’s nothing like those days.

Thanks,

Ron