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Who is who here to the newcommers (Read 40753 times)
hell and back
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Re: Who is who here to the newcommers
Reply #825 - Jul 18th, 2015 at 9:06am
 
Ok I've been diagnosed by the DR with chronic CH (specialist in CH) I've tried everything. I joined this site today and feel that some people are trying to re diagnose me with different conditions. Let me try explain and see what your opinions are. I have 6-10 attacks a daywith a shadow pain that never goes away. I start to feel a tightness in my neck, a burning sensation in my left ear, left eye, my left eye swells and my left nostril runs like crazy. I writhe around the kitchen floor at daft o'clock in the morning pushin my palm into my eye to the point I'm sure it's gonna pop. I can't stay still I pace the house and cry like a baby boy
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AussieBrian
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Re: Who is who here to the newcommers
Reply #826 - Jul 18th, 2015 at 9:52am
 
Never are we trying to re-diagnose you with other conditions, old mate, nor even to diagnose you with this one.

We're simply trying to help by ensuring you're perfectly satisfied with this diagnosis, having ruled out all other possibilities.

Some types of headache are really quite serious which is why we try to push people towards a headache specialist, while other types seem life-threatening but are quite easily treated once identified.

Please take us for what we are - people who live with horrible headaches while trying to help others who are similarly afflicted.

It's a hard road made so much easier travelling with friends who know, understand and care.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
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hell and back
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Re: Who is who here to the newcommers
Reply #827 - Jul 18th, 2015 at 10:35am
 
I have a full 15 page diagnosis from Dr silver of the Walton centre specialist in CH. It was me that believed it was something else as I didn't believe a jade ache could be this bad. But surly he can still be wrong with his diagnos Sad even more confused now. I don't wan people to think I'm having a pop because I'm really not I'm just very lost and appreciate any help. Regards, Dan
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hell and back
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Re: Who is who here to the newcommers
Reply #828 - Jul 18th, 2015 at 11:08am
 
Hi again, yes I have a full diagnosis fro dr silver (CH specialist in uk Liverpool.) He has now put me forward for clinical trials. I don't really want any more stuff putting in me but as you know we will try anything. I have tried LSD which did work but I'm worried of the effects of it.  Do you think he could off miss diagnosed me? Regards, Dan.
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Re: Who is who here to the newcommers
Reply #829 - Jul 18th, 2015 at 5:26pm
 
Dan wrote,  Do you think he could off miss diagnosed me?
We can't answer that here, only a Headache Specialist can answer this. You mentioned trying LSD with some success. If you check out our sister site, ClusterBusters the link is to your left on this page, there is lots of info there on alternative treatments. Also check out the Vitamin D Regime on here, it has lots of us CH free.

Hoppy
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Re: Who is who here to the newcommers
Reply #830 - Sep 5th, 2015 at 2:20am
 
Hi all,

Long time sufferer (over 10 years) and sometimes visitor to the boards but needing some help now.  42 years old and really feeling drained.  Had clusters midwinter and early summer when they started, with merciful long remissions lately, but these damn things keep coming back.  Last cycle was over a year ago but im riding the demon again, was so hoping last time was the last, so tired of fighting this. 

My best recipe:
Soon as shadows start, start Verapamil and increase dosage as fast as my blood pressure will allow
Use cafergot to stop the worst ones early in the cycle (they don't make this anymore!  crud!)
Get the O2 tank as fast as possible, drain a couple 680 tanks in the first week and hopefully taper.
Pace outside my house at 3 in the morning.
Have had Prednisone for one bad cycle, it broke it in 3 days but I'm really scared of the side effects so it will be desperation.
Tried zomig spray but really mixed results...not sure if my headaches just end or if it works.
Headaches start intermittent at first but then settle in for regular times, 3 in the morning seems to be most popular for the demon to visit.
Have put my head through plaster, used a hammer on my head, etc.

This is the first time I tried melatonin, I sleep through some with it but the other night I actually dreamed I was having a headache and was screaming in my dream.  My wife wakes me up and sure enough the beast is there.  Guess having them in my dreams is better than being woken up.  Told her not to wake me again if I'm dreaming.

Hardest part has been that I am a teacher.  Have had to leave class, bouncing my head off walls in the washroom and hiding out in the science supply room, pacing off demons, and missing time at the start of clusters.  Hate leaving my students with supply teachers!  Sometimes the students have seen me having one and been quite shocked.

My loving wife of 19 years and two kids have stood by me, somehow.

Thanks all of you here for the great advice, I have used links many times to find and refine treatment.  Just hoping this cycle ends soon.


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Re: Who is who here to the newcommers
Reply #831 - Sep 6th, 2015 at 12:51am
 
Well hi there!

I've already awkwardly introduced myself in a thread in the "main" forum, as I guess you'd call it. It was months ago and I basically made a complete fool out of myself, as usual.

My name is Erin, I REALLY like dogs, I am apparently kind of insane, and I am here for my sister Abby, who mostly finds me mortifying. I used to hope Abby would come to this forum and now I really hope she does not or I will never hear the end of it.

Anyway, nice to meet you all. Smiley
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Re: Who is who here to the newcommers
Reply #832 - Sep 24th, 2015 at 9:16pm
 
Hello All, first time visiting the site and first post.  My name is Kenton and I've had CH's since 1985, I'm now 50.  My CH's are always right side and have never changed.  I haven't had a cluster in almost 5 years and had almost forgotten about them.  Wrong... Just started a new cluster, had forgotten how much fun I was missing.  At this point, the pain is what it is.  It's just tough dealing with the lack of sleep and trying to explain why I look hungover at work every day.  It's really hard to try to explain to others that don't get the impact.
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AussieBrian
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Re: Who is who here to the newcommers
Reply #833 - Sep 24th, 2015 at 10:33pm
 
We know exactly how you feel, old mate, so welcome aboard.  Lots and lots of info here, it can be a little overwhelming,  but you're among friends now who really do understand.

Full speed ahead and damn the torpedoes,

Brian down under.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
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Re: Who is who here to the newcommers
Reply #834 - Mar 13th, 2016 at 10:21am
 
Hi I just found this board when I was googling CH treatments so I joined. I think I have been having cluster headaches since my early 40's but I never went to the doctor. For about 8 years my headaches were daily or weekly and always on the left side and predominately started at night and woke me out of a dead sleep. Then for a few years they stopped. About a month ago they started again, and worse pain than anything I have ever experienced and on the right side. I finally saw a doctor this past week and the NP said I have cluster headaches. I think she was right too because I have almost all the symptoms. They gave me a prescription for Imitrex, one dose and I did it at about 8:30pm Friday night and was completely pain free for 3 hours and slept. But since then the headaches have increased in frequency but are less severe. I am just tolerating them with coffee, ice packs, hot rags, ibupropen 800mg and tylenol 3 oh and 5 baby aspirins. I am so over this pain thing. I want another vial of that Imitrex. Cry
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Batch
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Re: Who is who here to the newcommers
Reply #835 - Mar 13th, 2016 at 12:48pm
 
Hey Janice,

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

Lots of CHers here with lots of experience in controlling CH so don't be bashful about asking questions...

Check your PM InBox.  I've left you some info that may help.

Take care and please keep us posted.

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Re: Who is who here to the newcommers
Reply #836 - Mar 13th, 2016 at 12:56pm
 
Janice,

You're very welcome here. There's lots of expertise and compassion to be found here.

I'm sure Batch has sent you some material on D3 and that's your reading assignment for today. The D3 Regimen has helped a lot of us get in control of this CH monster.

You also need to go back to your Doctor and get a prescription for home oxygen. On the left of this page you will see a number of tabs. Read up on the oxygen Info page. It is a very effective abortive when used properly.

Ask questions as you need to.

Someone is always here for you.

Best,

Peter.
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« Last Edit: Mar 13th, 2016 at 4:47pm by Peter510 »  

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Re: Who is who here to the newcommers
Reply #837 - Mar 14th, 2016 at 2:59am
 
G'day Janice, welcome, and do you know about our little Cluster Quiz? On the top-left of your screen should be a list of buttons and one of them is for a quiz that's helped many.

It's by no means a diagnosis but often lets people feel a little better about things, so you may like to give it a try.

All headaches are horrible so please let us know how you're getting on.

We care.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
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Re: Who is who here to the newcommers
Reply #838 - Jan 13th, 2020 at 7:28am
 
Hey Nini,

Howz the head?

Take care,

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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