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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> I hope I don't have what you guys have...
        
(Message started by: soslo on Oct 29^th, 2006, 12:40am)

Title: I hope I don't have what you guys have...
Post by soslo on Oct 29^th, 2006, 12:40am

Well, I found this website today after a second doctor mentioned that I might have "Cluster Headaches."

11 days ago my left eye started watering...a few days later, it was accompanied by an intense headache around my left eye. I stayed home from work for the next two days (very uncommon for me). The headaches would come randomly, last for 2-3 hours, then go away. I went to the doctor and was prescribed Amox for my "sinus infection" - though I didn't have any sinus issues (no stuffy nose, no discharge, etc).

6 days later and the antibiotics haven't done a thing. I've been pounding Tylenol Sinus and Advil liquid-caps like they are candy (4 at a time). None of that helped.

A few nights ago I was unable to sleep - (I can't sleep when the headache is active) - and I was going crazy trying to think of ways to find relief. I finally got up at 2:30am to go to WalMart to buy nasal spray, picked up the nasal 4 or whatever it is called. That *seemed* to help a little after 15 minutes or so. Hard to tell since the headaches come and go at random. I'd say about 50% of the time after using the spray I would find relief within the next 30 minutes. So I don't even know if the spray is helping or if I just use it when the headache is nearing its end.

All of this to say: I've read descriptions of the symptoms and it sure sounds like I have CH...but I really don't want to believe I have it...because the thought of this pain lasting for weeks on end, and then coming back later, is disheartening.

I've seen a 'survey' mentioned in the forums - but haven't found it. Can someone give me the link?

Do my symptoms sound like CH to you sufferers? This is by far the most painful thing I can think of as far as my head goes. I've never had a migraine - so I can't compare, but from the folks I've talked with, it doesn't sound similar. These just come out of the blue and then rock me for 2-4 hours, then vanish. It's wild.

Title: Re: I hope I don't have what you guys have...
Post by AussieBrian on Oct 29^th, 2006, 12:44am

Start by looking at the "Cluster Quiz" just over on the left. With luck you'll fail miserably but let us how you get on because we can help in many ways.

Title: Re: I hope I don't have what you guys have...
Post by soslo on Oct 29^th, 2006, 12:53am

Just took the quiz.
1-8 were all "no" - which apparently is what CHers say.
9-16 were "yes" with the exception of:

11) Do your headaches normally occur at the same time of the year and same times each day?
No

#12) Do you normally experience a stuffy nostril on the same side of the face as the pain?
No

#13) Do you normally experience a "droopy" eyelid on the same side of the face as the pain?
No

Title: Re: I hope I don't have what you guys have...
Post by Sean_C on Oct 29^th, 2006, 1:02am

The only thing that seems unfamiliar to me Soslo is the 2 - 4 hour attack. For most all of us that would be a trip to the ER. A long duration CH usually includes intense uncontrolable agony.

Sean................................

Title: Re: I hope I don't have what you guys have...
Post by AussieBrian on Oct 29^th, 2006, 1:05am

So now it's homework time. There's an absolute treasure chest of information here, probably the world's biggest, and lots of people who'll support you all the way through your adventures.

Importantly, we're not doctors though as LeLimey says we are expert patients. Read up seriously on things like Oxygen Info (another button on the left) so when you see your doctor again you will at least be well informed. Note also that CH is a relatively rare condition and few doctors ever come across it so forgive their ignorance.

Good luck and ask all the questions you want - that's why we're here.

Title: Re: I hope I don't have what you guys have...
Post by mathieulives on Oct 29^th, 2006, 1:09am

on 10/29/06 at 01:02:51, Sean_C wrote:

The only thing that seems unfamiliar to me Soslo is the 2 - 4 hour attack. For most all of us that would be a trip to the ER. A long duration CH usually includes intense uncontrolable agony.

Mine last that long if I do not get Imitrex in me early enough. My first week I had no meds and they easily lasted that long, kip 10 and yes it was indescribable agony. :o

Title: Re: I hope I don't have what you guys have...
Post by burnt-toast on Oct 29^th, 2006, 6:21am

You really need to hook up with a Neurologist who is familiar with CH and go through the testing necessary to rule out physical causes and/or diagnose other types of primary headaches.

Regarding your cluster quiz answers...

If you've only been experiencing these symptoms for 11 days or so its going to be hard to accurately describe your full range of symptoms.

Start a journal and log your headache activity and anything you believe is related to your symptoms. It will be beneficial when seeking a good diagnosis and wil help you work more effectively with doctors.

Best wishes,

Tom

Title: Re: I hope I don't have what you guys have...
Post by soslo on Oct 29^th, 2006, 6:17pm

Thanks for the replies everyone. It is difficult to gauge pain between people. I generally don't succumb to minor pain. I just found the KIP scale - I would say the pain during these headaches is 7-9. Mostly 8. Only had a memorable 9 once. But I've never been able to sleep with one of these headaches - not even close - so that seems to indicate 7+

I hate to say this because I worry that I will jinx myself, but I haven't had a headache yet today...which is a first for the last week.

Also, the pain in these headaches is very consistant and constant - not throbbing or anything. No fever either. Almost like a super brain freeze for a long long time.

Title: Re: I hope I don't have what you guys have...
Post by Jellyneen on Oct 29^th, 2006, 6:23pm

So happy to hear you are having a pain free day. I will pray for you and hope you continue to stay that way!!
Janeen

Title: Re: I hope I don't have what you guys have...
Post by BB on Oct 29^th, 2006, 9:32pm

Do you get the intense pain behind one eye and the feeling like something sharp and hot is poking, drilling, pushing the eye out ?

As thats the pain from the opthalmic branch of the trigeminal nerve which always gets irritated during a CH attack.

Annette

Title: Re: I hope I don't have what you guys have...
Post by soslo on Oct 30^th, 2006, 12:31am

My pain is only behind my left eye - and it feels like...something intense and pointed...like a spike driven up one nostril and in behind my eye.

So that is the opthalmic branch of the trigeminal nerve? I haven't heard of those terms before.

Title: Re: I hope I don't have what you g
Post by leftsideonly on Oct 30^th, 2006, 1:34am

Hi

Sorry to hear you have been suffering. The intense brain freeze - or I call them ice cream headache - thats one way I describe the pain. Sounds like it may be CH but as you were told before find a good Neuro doc and see what they say. I wish you all the best my dear.

Prayers, peace and PF wishes,
Andre