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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hello fellow Clusterheads
        
(Message started by: ArdRigh on Aug 19^th, 2004, 7:19pm)

Title: Hello fellow Clusterheads
Post by ArdRigh on Aug 19^th, 2004, 7:19pm

Hello all, I am new to the group, but very happy I have found you all. I spent a good time today reading many of the strings on this board and surfing the site. I have been suffering with CH's for almost 4 years. It started with Horner's syndrome.

While on a routine business trip my right eye started to spasm and by the next day the sye-lid had drooped like I was in a fight. The pupil was constrited and the head aches started shortly after - unbelievable pain. I spent the following months dealing with neurologists and having MRIs done. Glad to say ther is no tumor or anything, but nothing they can do for the CHs - or so they have told me...

Over the years I have tried many home remedies from bags of frozen peas on my neck before bed, to gallons of coffee. I have even experimented with pot - made me hungry, but didn't get rid of the pain (altogether - some releief however).

Most recently my neurologist prescribed Neurontin - it is drug for nerve damage. He WAY over-prescribed it at first and it made me very queasy and dizzy. However, I have found that one a day (when in cycle - mine is August-Sept), it seems to help some as a preventative. I have not found a good abortive as of yet - I am open to suggestions...

I know this may sound weird, but I think the cycles may be tied to atmospheric or barometric pressure. I say this as I am not the only one in my family who suffers from CH. My cousin and my uncle also have them (though they do not have the full-blown Horner’s syndrome). They concur that the barometric pressure theory holds water, as they fell cycles coming on with the change of seasons. Anyone else here feel this way? I would love to hear from you.

I look forward to participating more on this board. That’s all for now.

Best to all, Tom

Title: Re: Hello fellow Clusterheads
Post by Superpain on Aug 19^th, 2004, 7:27pm

Seasons and barometric pressure have no bearing on my headaches. Cycles come with no ryhme or reason in any season. [smiley=laugh.gif]

I'd suggest talking to your doc about triptans such as imitrex or zomig. I prefer the imitrex shots myself. And oxygen!!!

Prednisone works wonders for many of us as an immediate preventative and verapamil is usually the first choice for a long term abortive.

It's interesting that you experienced Horner's before the headaches... A "syndrome" is defined as being a "set of symptoms", meaning it is usually something causing the Horner's syndrome, not the Horner's causing something... In this case the "something" is CH...

Welcome. Read up! Being informed is your best weapon!

Title: Re: Hello fellow Clusterheads
Post by don on Aug 19^th, 2004, 8:11pm

Quote:

I am open to suggestions...

How about this:

480 mg sustained release verapamil per day
Prednisone taper
Imitrex injections to abort

All else fails
IV DHE

Works wonders for me.

Title: Re: Hello fellow Clusterheads
Post by IndianaJohn on Aug 19^th, 2004, 8:17pm

Hi Tom and welcome to the family.

Seasons and baromtetric pressure sometimes will effect my cycles. I notice that sometimes a change in pressure will effect how often I get hit but not the intensity, also there appears (at least to me) a level of suseptibility. If I'm getting multiple HA's / day then barometric pressure may have an effect. If I'm getting hit only once / day then it doesn't effect me at all.

As for seasonal changes, I'm usually a march/april and sept./oct... Though this current cycle and many others in my past have occured mid summer or winter. So there may be a connection, but IMHO not a consistent one for me.

Imitrex is a popular abortive. Most use the injectors but I prefer the nasal sprays. I hate needles and don't mind toughing it out until it starts to work <5 minutes for me usually. In others it takes longer so they have to use the injestors.

O2 is very popular also, I trying to get a O2 setup myself...

Best Wishes

John

Title: Re: Hello fellow Clusterheads
Post by Jaime on Aug 20^th, 2004, 4:39am

I am new to this site, too. I can tell you that I have been plagued by sinus headaches and migraines linked to high barometric pressure for 40 years. I can almost use my head pain as a barometer. If it hurts, the air pressure is over 30mb.

I am in my first episode of CH, 3 weeks so far, and I feel it was brought on in part by a persistent high pressure system here. The weather just started to turn cloudy, with possible rain forecast for tomorrow from a low pressure system that is moving in. As the air pressure has gone down, so has my pain level.

Title: Re: Hello fellow Clusterheads
Post by ex_pat_asia on Aug 21^st, 2004, 11:17am

on 08/20/04 at 04:39:05, Jaime wrote:

I am in my first episode of CH, 3 weeks so far, and I feel it was brought on in part by a persistent high pressure system here.

If you search google on "barometric pressure" and "cluster" you will find much evidence of the links between the two. In my case, I have had multiple attacks while flying (both in cycle and out of cycle). My current episode was no doubt exacerbated by an extended diving trip I did in late May. At the time I was into the cycle but it was spotty enough that I was not sure. Multiple hits per day started within a week after returning from the dive trip.

Title: Re: Hello fellow Clusterheads
Post by don on Aug 21^st, 2004, 12:12pm

Quote:

My current episode was no doubt exacerbated by an extended diving trip I did

Driving =Ch attack. In fact I first started experiancing CH back in the college days communting between Maine and Massachusetts. Only got the attacks after driving one route or the other.

Then the beast decided he "Dont need no stinking AAA" and just hung around continually.

Title: Re: Hello fellow Clusterheads
Post by ArdRigh on Aug 26^th, 2004, 6:59pm

Hi Again,

I just returned home from the doctors armed with Imitrex nasal spray(20 Mg) and pill form (100Mg). I am hoping this will prove to be an effective abortive.

Thank you all for the kind support and advice!! One thing I neglected to mention in my original post was a home remedy I’ve found to be an fairly effective abortive - I call it the caffeine, nicotine shock. When I feel a CH coming on (we all know what I mean), I know I have a few mins max to do something or endure the wrath. I have found that brewing strong coffee and slugging down a couple of mugs (black, strong) and sucking down a cigarette often aborts the attack. The down side is that you are amped for a while after, yet it is better then being in pain!

Try it and tell me if it works for you.

I'll be in touch and let you know how the Imitrex is working.

Thanks again,
Tom

Title: Re: Hello fellow Clusterheads
Post by IndianaJohn on Aug 26^th, 2004, 7:39pm

I do the caffeine/nicotine thing too. I usuall keep a can of pepsi and my cigarettes next to the bed. one cigarette and some soda will kill a mild one, two cigs and more coke/pepsi will kill a modreate one. Past that I grab my trex....

Still trying to get O2 so I can stop doing this.

Title: Re: Hello fellow Clusterheads
Post by Kris_in_SJ on Aug 26^th, 2004, 8:57pm

Glad you finally got some Imitrex. I think you'll probably love it. I'd still keep pushing for Verapamil and a Prednisone taper. Oxygen too, if possible.

My very first cycle was similar to yours. Sudden onset of droopy, bloodshot eye, accompanied by a constant kip3-4 shadow that lasted about 10 weeks.

4 PF years go by. Bam, I'm suddenly classic - finally got diagnosed. Couldn't have survived the last several cycles without my "cluster cocktail" - 480mg Verapamil, Prednisone taper, Imitrex injects to abort.

Hugs and many wishes for PFDAN,

Kris

Title: Re: Hello fellow Clusterheads
Post by writer on Aug 29^th, 2004, 11:11am

Hello Tom,

I had clusterheadaches for 40 years and aside from a horrible few sessions with Sansert, survived without meds.

However, when in a cycle, I made it a point before going to bed to make a huge pot of brewed coffee. Then when the pain woke me after a couple of hours, I would stagger to the kitchen, heat up the coffee and drink cup after cup after cup.

It made the pain almost bearable, I suppose because of its shrinking the veins and arteries in the head. At any rate, I would then go back to bed for another two or three hours of sleep, and the tremendous amount of caffeine had not the slightest bad effect (in keeping me awake). I slept like the dead, which of course I felt like.

So yeah, caffeine can be quite a help.

Writer

Title: Re: Hello fellow Clusterheads
Post by ArdRigh on Aug 30^th, 2004, 4:08pm

Hey guys,

I’m sorry to report that despite Imitrix, I had one of the worst bouts I have had over the past three years this weekend. I was on a boat with my father in-law when it hit. I took the imitrix pill (didn’t have the nasal spray with me) and it still lasted over 2 hours before I was back to the human race. Even then I had shadows well into the next morning – sucked! It’s as thought the beast knows I now have Imitrix and has figured a work-around… Also, the right side of my head is very tender (almost bruised). I have experienced lingering tenderness before (attributed it to hard rubbing during the bout), but this is different… I feel like I was kicked in the head, like I had a mild concussion (I played hockey all through HS and College, so I am familiar with concussions). Have any of you experienced this?