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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hi all.
        
(Message started by: JJ on Jun 15^th, 2005, 9:29pm)

Title: Hi all.
Post by JJ on Jun 15^th, 2005, 9:29pm

Hi everyone.

4 or 5 years ago I was diagnosed with CH's. A little internet research confirmed this, although my symptoms don't seem to be as bad as many of the more graphic descriptions on here.

For about 3-4 weeks per year, I get the episodes. It seems like I'm on a 22-23 hour cycle, as they start in the middle of the night, and start happening earlier and earlier. Yesterday I had the privledge of driving home squinting and mashing my fingers into my temple. Talk about the longest drive in history. Today, I could feel it starting at work, but luckily it stopped before getting really bad.

On my first diagnosis, the Dr told me to take Vioxx twice a day to try and break the cycle, and gave me Zomig to abort. I'm not sure if it is simply nature, or if the anti-inflammatories have something to do with breaking the cycle - but it usually works in just under a month.

When I get a headache, its always behind my left eye (like my eyeball is getting crushed/poked), that eye starts watering profusely, and my left nostril is always clogged. The only thing that makes me question my diagnosis is the severity of pain. My eye kills me.. but I'm usually able to lie down with a cold towel on my face... and after lots of wiggling around and squeezing my nose/temple/eye.. I usually end up falling asleep, only to wake later feeling exhausted. Sometimes I take the zomig, sometimes I don't. It seems to help, but I usually feel more hungover/"spent" after that treatment. If I take it, the pain is so bad that I don't care about how I feel later.

I haven't been able to figure out the trigger. It doesn't seem to happen during one particular season, and it doesn't always start at home. Therefore, I don't think its an allergen. I do know that one drink during a cycle causes it... although not immediately. I can be sure to wake up with one that night.

Does it hurt? yes - it hurts like a mother. But worse that childbirth? As a man, I'll never know. I'd say I'm usually in the 4-6 range on the kip scale. I can tell you they often hurt more than the time I ripped one of my fingers off with a drill press. (they're probably a close tie with the masochistic therapist who started stretching my knuckle as soon as the stitches and pin were removed)

Over the last 5 years of headaches, I've not been given any stronger meds, nor have I checked into a hospital. I haven't tried banging my head or any of the other dance moves. I know I'm no stronger than you all, so is it possible I'm "lucky" enough to have a less-intense version of clusters?

I'm about two weeks into a cycle now, and tomorrow I'm visiting my doctor. Until I found this site, I hadn't heard of oxygen therapy, nor was I aware of the other meds available. I'll go in tomorrow armed with some info

Thanks for listening, and thanks to CH.com for being here. I've heard about all I can stand from my coworkers.... "Yeah, my wife gets migraines", or "I had a bad headache last night too". Uh huh. save it. ;)

JJ

Title: Re: Hi all.
Post by pattik on Jun 15^th, 2005, 9:48pm

Hi JJ...it sounds a lot like clusters. Read as much as you can about the O2. It works very well for many of us, and there is a pretty good chance it can work for you too if you have clusters, and if you are really diligent about using a non-rebreather mask correctly and have a large enough LPM prescript. This site has a wealth of information, so welcome and I hope you have PFDANS ahead. pat

Title: Re: Hi all.
Post by BobG on Jun 16^th, 2005, 4:42am

Welcome to the board JJ.
It all sounds like clusterheadaches to me except the lying down and sleeping. That is more migraine sounding. I have never heard of a cluster sufferer being able to lie down during an attack. But, I'm not a doctor and can't diagnose.

Please let us know the results after your doctor appointment.

Title: Re: Hi all.
Post by marlinsfan on Jun 16^th, 2005, 6:02am

on 06/15/05 at 21:29:33, JJ wrote:

On my first diagnosis, the Dr told me to take Vioxx twice a day to try and break the cycle, and gave me Zomig to abort.

Hi JJ, i've been having back problems too this past 18 months. I was on VIOXX (50 mg/day) then switched to Bextra when VIOXX was pulled, then switched to Celebrex when Bextra was pulled. I had back surger 2 months ago, and I think the surgery is what triggered my current cycle.

Neither Bextra nor Celebrex have helped end my cyble. Both are the same class (Cox-2 inhibitor) as Vioxx. I'm glad to hear that it helped you!

Good luck.
Jose

Title: Re: Hi all.
Post by JJ on Jun 16^th, 2005, 6:20am

on 06/16/05 at 06:02:12, marlinsfan wrote:

I think the surgery is what triggered my current cycle.

You know what? My first recollection of these types of headaches was about two weeks after my appendix was removed. At the time, my wife and I suspected I was having some sort of withdrawl symptoms after taking codine pain killers for 2 weeks and stopping cold turkey.

As for just lying there and falling asleep... its not quite that easy. There's no sleeping for 20-30 minutes. Until I finally sleep, I can't lie perfectly still. I'm usually moving my knees around, and really massaging my face. A lot of times a deep kneading around my nose and below my eyes, along with some slow, deep breathing offers some (not total) relief. But yes - I am able to lie down. That's what prompted me to ask if you guys have heard of less severe clusters.
I really hope they don't get any worse!

Title: Re: Hi all.
Post by JJ on Jun 16^th, 2005, 10:02pm

I visited the dr today. His nurse knew nothing. She said "do you have a history of migraines?". I said, "I've got a history of clusters.

The Dr claimed he had clusters back in college, but they've ceased and turned into frequent migraines.

I didn't get much out of it... just a prescription for celebrex, along with some samples of imitrex spray, pills, maxalt, and relpax.

I hinted toward oxygen, but didn't get anywhere. He knew of that therapy, but didn't think we needed to try that yet. Oh well.. at least I got some new meds to try. I have a feeling I'll get my chance tonight.

Title: Re: Hi all.
Post by E-Double on Jun 16^th, 2005, 10:10pm

DO NOT TAKE ANY OF THOSE MEDS TOGETHER!!!!!!!!!!!!

forget the headache that could kill you

Title: Re: Hi all.
Post by E-Double on Jun 16^th, 2005, 10:14pm

Bull shit doctors!!!!!!!!

O2 should be first line of defense!!!!

Go demand it!

in fact print this these out!!!

This is a great resource to know like the back of your hand...print it out and give it to your doc

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!

Ask for a script and if needed FIGHT fOR Oxygen...

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Educate your doctors!!!

Title: Re: Hi all.
Post by jokrs2 on Jun 16^th, 2005, 10:27pm

E-dubs right!!! Get a NEW doctor if this one won't change his attitude. He probably didn't have clusters and that's why he didn't give a damn. Oh, and by the way..welcome JJ ;;D. Sincerely, Joe

Title: Re: Hi all.
Post by Gator on Jun 17^th, 2005, 11:30am

Welcome, JJ!

Definitely heed, E-Double's warning about the relpax, maxalt and imitrex.

Quote:

Maxalt (rizatriptan), Zomig (zolmitriptan), Imitrex (sumitriptan), Amerge (naratriptan), Relpax (eletriptan), Axert (almotriptan), Frova (frovatriptan) and meds containing ergotamine are dangerous to take within 24 hours of each other. Mixing triptans can cause serious cardiac problems. If you switch from one to another, wait at least 24 hours between the two different meds.

So, how long do your attacks usually last and how many do you usually have during a 24 hour period?

Have you and your doctor tried Indomethacin? It's an NSAID as well, but is almost 100% effective in a condition very symptomatically similar to CH called Paroxysmal Hemicranius. It should be one of the first meds tried in the diagnosis of CH.

You might also talk with your doc about using melatonin at bedtime. Quite a few people find that 6 to 9 mg quells the night time attacks. It doesn't work for everyone (nothing does), but it's definitely worth a try.

As you have discovered, there is tons of info available here. Read everything you can find and take the lead in your treatment. Doctors work for you and can be fired if they refuse to work with you. Print out stuff from here and take it to your doc and when it comes to oxygen - don't take "No" for an answer.

See ya around the boards!

Title: Re: Hi all.
Post by JJ on Jun 17^th, 2005, 9:54pm

Thanks for the tips on drug interactions. If I hadn't married a pharmacist, I would probably be dead already! I'm not the best about reading package inserts or remembering the Dr's instructions.

The more I read about various conditions, the more confused I get. For example, my headaches occur at night and during the day (although daytime occurances are usually after 3:00pm). I've read in several places that most CH attacks are at night. Also - as mentioned above, I can usually sit, or lie down during an attack.

I read about CPH, Gator. It sounds like those sufferers have more frequent attacks. I get one (or rarely two) a day.
I can feel the headache starting, and I've usually got about 5 minutes to grab a couple of pills, a glass of water and a seat before it hits. Normally the pain is 20-30 minutes in duration. I have noticed this time that they started in my sleep (3am), and have gradually started happening earlier. Earlier in the week I got one just before bed 10ish, and mid week I had one driving home after work. This is my 4th or 5th cycle over 5 years. I don't recall the cycle ever lasting more than a month, so I'm hoping I'm about done with this one.

A little more reading made me wonder if I don't have a condition called SUNCT Syndrome. That was described as less severe headaches with the watery eye, blocked nasal passage, and pain around the eye.

And you asked about trying Indomethacin... nope. So far I've only tried Vioxx, Celebrex, Bextra, Zomig, and Imitrex. The good news is last night I felt the shadows starting, and popped one Imitrex, and slept like a baby.
This evening, around 7, I felt the pain forming behind my eye, and popped an imitrex, and again, no headache. The bad news is those were my only two samples. Later this weekend, if I get one, perhaps I can report on the effectiveness of maxalt.

Title: Re: Hi all.
Post by E-Double on Jun 17^th, 2005, 10:52pm

These days the majority of my attacks occur during the day.....don't sweat that.

They used to come only at night then both day and night and now mostly during the waking ours... go figure.

There are a few people who do lay down and try to sit still......get into a zone as opposed to battling the bastard.....though many say that is a definite NO there are a few old-timers around here who say that they do so...I take their word for it.

If you want to learn about all the different types of headaches and how they are classified b y the international headache society...click here:
http://216.25.100.131/members/Sections/members/login/Temp_Frame/frameset_26_06_02.htm

There are a few HA that are similiar to CH yet differ in duration and responsiveness to medications.

If specifically interested in SUNCT:
http://www.ninds.nih.gov/disorders/sunct/sunct.htm
but I will tell you that based on the duration of your attacks that (though I am not a doctor) according to diagnosstic criteria...you do not have it.
Attacks typically occur in daytime hours and last from 5 seconds to 4 minutes per episode. Patients generally have five to six attacks per hour.

Good luck!

Eric

Title: Re: Hi all.
Post by Gator on Jun 17^th, 2005, 11:00pm

I wouldn't think it's SUNCT. Too few hits and lasts too long. SUNCT has 3 to 200 attacks per day lasting from 5 to 240 seconds (4 minutes) each.

From the IHS Classification Guide:

Quote:

3.3 Short-lasting Unilateral Neuralgiform headache
attacks with Conjunctival injection and Tearing
(SUNCT)
Description:
This syndrome is characterised by short-lasting
attacks of unilateral pain that are much briefer than
those seen in any other TAC and very often accompanied
by prominent lacrimation and redness of the
ipsilateral eye.
Diagnostic criteria:
A. At least 20 attacks fulfilling criteria B–D
B. Attacks of unilateral orbital, supraorbital or temporal
stabbing or pulsating pain lasting 5–240
seconds
C. Pain is accompanied by ipsilateral conjunctival
injection and lacrimation
D. Attacks occur with a frequency from 3 to 200 per
day
E. Not attributed to another disorder1

Editted to add: LMAO, Eric. Great minds think alike.

Here is a link to the IHS Classification Guide I quoted from:

http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf

Title: Re: Hi all.
Post by lionsound on Jun 18^th, 2005, 9:46am

Hey JJ,
Lots of excellent info above for you.
PLEASE get yourself to a knowlegdeable neuro....one who is willing to listen to you and diagnose you properly without throwing med samples at you.

Once a doctor did that to me too.... handed me one box of each triptan and said to "play around with these" YIKES!!!! Thank goodness I had already found this site, and the 24 hour rule, or I probably wouldn't be writing this now. Needless to say I never went back to that doctor.

You deserve O2 and good care! go get it! Keep reading about clusters and their variants.... an informed you is the best patient.

be well and PF!
-lionsound

Title: Re: Hi all.
Post by JJ on Jun 18^th, 2005, 12:28pm

IT got me again at 5:00am this morning.
For the first time that I can remember, my left nostril wasn't clogged during this HA. The eye hurt... but no cloggage.

Lucky for me, my wife phoned in a request for an imitrex script, and had more pills for me last night. They seem to be working, although it was a little too late when I woke up.

Thanks for the advice. Hopefully I'm not wearing out my welcome in the getting-to-know you section.

Title: Re: Hi all.
Post by E-Double on Jun 18^th, 2005, 1:18pm

You will never wear out your welcome!
We just want to make sure you get proper treatment for whatever you have!

Best,

Eric

Title: Re: Hi all.
Post by jcmquix on Jun 18^th, 2005, 6:42pm

I know one thing about the people on this site, they care about the people who come here looking for answers to their question. I have only been a member for a few days, but the information that I have gained has helped me so much.

I have also made some new friends that I hope to know a long time.

It nice to have someone to relate to, that really understands what you are saying.

Thanks again to everyone here.