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Cluster Headache Help and Support >> Getting to Know Ya >> Introducing Myself
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Message started by KristyB on Nov 18th, 2013 at 2:47pm

Title: Introducing Myself
Post by KristyB on Nov 18th, 2013 at 2:47pm
I have not been diagnosed with CH yet, my appointment with neuro is next week.  After finding this site, I'm pretty sure this is what I have.  Thank God I found you!

Which is an odd comforting relief because I've never experienced such pain before in such odd increments and I had myself convinced I am dying of some rare disease.

I am a lifelong headache and migraine sufferer.  But I have been able to manage them through OTC meds.  This bout of CH is new to me.  It started three weeks ago when the weather changed here in AZ.  The pain is different than my migraine pain.  It's all on my right side, my nose plugs up and it happens around the same time, every day:  5:30a, 12:00p and 6:30p.  The pain comes on in less that a minute and stays around for about 30-45 mins and then it eases.  I seem to get faster relief if I pop a few Excedrin.

I am keeping a diary and noticing what I'm doing/eating when the attack comes on.  I think I'm doing all the right things in prep for my appointment next week.

I am fascinated by all of your stories.  It encourages me that I will find an answer soon.  And, also, that perhaps this bout will go away as quickly and mysteriously as it came on.

Thanks everyone.

Title: Re: Introducing Myself
Post by Guiseppi on Nov 18th, 2013 at 2:56pm
Hopefully your neuro is a headache specialist, we've found most garden variety neuros just don't have the experience to deal with the more orphan maladies like CH! Until your appointment, avoid alcohol and strong odors as they can trigger attacks. Keep a couple of Red Bulls or Monster Energy drinks on hand as many can abort or reduce an attack with these. I prefer the sugar free Red Bulls as they're a little less offensive in flavor! Do let us know how your appointment goes.

Joe

Title: Re: Introducing Myself
Post by KristyB on Nov 18th, 2013 at 3:00pm
Thank you Joe!  My neuro is a headache specialist.  One of the reasons it's taking so long to get in to see her is because she is one of the best where I live (or so I'm told). 

Title: Re: Introducing Myself
Post by KristyB on Nov 18th, 2013 at 9:28pm
I took your advice Joe and got some Red Bull today.  I felt two coming on today and both times, the Red Bull really helped nip it.  Who would've guessed?

I am very grateful for this.  Thank you.  Thank you.  Thank you.

Title: Re: Introducing Myself
Post by Guiseppi on Nov 18th, 2013 at 10:23pm
Glad to hear it, hoping the neuro can get you dialed in, headache pain sucks!!!!! ;)

Joe

Title: Re: Introducing Myself
Post by wimsey1 on Nov 20th, 2013 at 7:25am
If you do find you are diagnosed with CHs, do yourself a favor and push for a high flow Oxygen scrip. Read the link at left and ask any questions. BTW, high flow starts at 15lpm minimum. You want higher if possible. God bless. lance

Title: Re: Introducing Myself
Post by Guiseppi on Nov 20th, 2013 at 9:30am
This is the link Wimsey mentioned. Wouldn't hurt to read up a bit on it before you see the doc.
Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free.

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

Joe

Title: Re: Introducing Myself
Post by KristyB on Nov 27th, 2013 at 8:39pm
So I thought I would give you all an update.  I saw the neurologist today.  She thinks I have paroxysmal hemicrania and not cluster headaches.  I'm not sure I understand the difference because they are practically identical symptom-wise.  I have to have more tests to know for sure.

I'm just grateful to be out of the cycle.  I've been pain free for 5 days now!

I hope you all find yourselves pain free for the Holidays.  All my best to you.

Title: Re: Introducing Myself
Post by Bob Johnson on Nov 27th, 2013 at 9:58pm
Re. your reply, #7.

Would be helpful to explore this site and search the collectionof articles. Note books available.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE. Two books, one free, available as an e-book; second aimed at professionals. Section of many journal articles. Site worth exploring. Robbins is one of the leading headache docs in the Chicago area.

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