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(Message started by: maemai on Dec 7th, 2005, 8:24pm)

Title: Could this be cluster ha's?
Post by maemai on Dec 7th, 2005, 8:24pm
You all are wonderful.  I have read many of the posts here. Thank you for reading my post... yet another "could this be cluster headaches?"

It's always my left eye and it almost always starts early afternoon, probably between 12:30 and 1:30 pm, although I have woken up in the morning with the pain (mild) behind my eye a couple of times. When this happens I get the severe pain later in the day. Since I started keeping a diary about 2 months ago, I think I have had about 6 periods of headaches. Twice now I thought, "My head feels like it's starting to hurt, instead of waiting, I'll be proactive and take some Aleve". Shortly after taking the Aleve/Motrin/Advil the headache was unbearable. These medications do nothing. When it hurts, I keep my hand pressed against my eye and sometimes I grab my hair at the roots and pull. Twice I have left work because it hurt too much to concentrate. Once I held a dish of icecream on my eye. My eye feels like it's burning and like it's being squeezed from the inside out. At some point the whole left side of my face feels like someone has been punching it. One time my eyelid felt droopy and a co-worker thought it looked droopy, but I have a lazy eye so it looks weird anyway. My bottom eye lid gets really red. I noticed this last time that my nose was stuffier than usual for 10-20 minutes. The other day at work I was holding a cold yogurt container against my eye, and then drank coffee. I am lately becoming a coffee drinker.

I think the headache gets better after an hour or so of bad pain, but my head will continue to hurt until I go to bed at night.  Sometimes I think that the really bad pain comes back for another 20-30 minutes around 7-8pm.  It's hard for me to remember what the headaches are like unless I deliberately think about it while it's happening. The next day after a really bad "eye ache" the left side of my face and especially my eye feel bruised. I feel tired, not like I want to sleep, but tired like I've been beaten. I feel hungover. (I've never actually been punched or beaten, I'm just guessing this is what it feels like). When I have this bruised/beaten feeling, I feel like another headache might come on.  On the KIP scale, I think at the worst they are about a 6 or 7.

My doctor thought it might be migraines and gave me some samples of Relpax and Axert to try. Didn't help. He said if it didn't help, it probably wasn't migraines. I've seen my opthamologist to check out my eyes, saw an allergiest, and been to the dentist. I'm going back to see my PCP next week.

I don't want to bang my head on anything when this happens, yell, or scream. I get worried about pressing my hand/fingers too hard into my eye. I don't think these headaches are nearly as extreme as what I have read about clusters.  After the most severe part, I do go to bed sometimes. Not because of light bothering me or feeling nauseous, but because if I'm sleeping I won't have to deal with it. It takes a while to fall asleep and the whole time I either have my hand against my eye or my eye pressed into the pillow.  When I wake up it's likely to still be hurting.

The headaches don't happen every day. Seems to happen weekly (mostly on Tuesdays) and then take a couple of weeks off. I'm not sure what to think.  Any thoughts or advice when I go back to talk with my doctor?

Martha Ann

Title: Re: Could this be cluster ha's?
Post by Barry_T_Coles on Dec 7th, 2005, 8:49pm
Hi Martha

Sounds like some of the symptoms are those of clusters but donít really sound severe enough, but then again my first episode was only mild in comparison to the last.

Have you done the Cluster quiz, it will give you a very good idea as to wether you may or may not have CH.

I dont know of the meds you mention (Aleve/Motrin/Advil ) I assume that they are pain killers, ordinary pain killers and even the FORTE or extra strong  ones are about as useful as the proverbial boobs & the bull.

Do the quiz and check out the KIP scale & see how you go.

Hope things get better
Kind Regards

Title: Re: Could this be cluster ha's?
Post by unsolved1 on Dec 7th, 2005, 8:51pm
I think you could have clusters but it may be too early to tell. Only time will tell. (1) Most cluster sufferers get 'headaches' on a daily (or nightly) basis. (2) Clusters come in groups only to disappear then re-appear weeks, months, or years later.
One or two things that you might want to ask for .... either O2 or Imitrex nasal sprays or injections. One or both may help with attacks.

Take the cluster quiz to the left.

Read, read, read.

Get to a headache specialist and get a firm diagnosis.

Goodluck and keep us posted

Pain Free Wishes

Title: Re: Could this be cluster ha's?
Post by bnfreeman on Dec 7th, 2005, 9:24pm
I'm no doctor, but sounds close to clusters to me. Don't waste your time on OTC painkillers. It will just make things worse. It also sounds like they are not as bad as they could be. And I'm not saying they aren't bad. Like it was said before only time will tell. Different meds work for different people. There was a time in the begining that Relpax worked for me but then it stopped. Imitrex injections and O2 for me. Along with alot of preventatives. It sounds like you are going through what I am right now and things are not so bad. Maybe suggest a Medrol (steriods) pack if it is clusters. I am no doctor! Just trying to help. Good Luck!


Title: Re: Could this be cluster ha's?
Post by Beastfodder on Dec 8th, 2005, 6:20am
If it's got four legs, a waggy tail and a cold wet nose it's probably a dog.

That same razor sharp observation suggests you're in the right place now.  Once you've got the doctors on your side you can go about fixing the problem - at least your dentist didn't recommend root canal therapy (or a sinus operation).

O2 should be an early call - since for many it's the easiest way to stop headaches and has no physical impact on the body.  I can't recommend any of the abortives I've been prescribed in the past but keep reading and talking and you'll get both effective pain relief and a way to cope and manage the joys of CH.

Title: Re: Could this be cluster ha's?
Post by BarbaraD on Dec 8th, 2005, 7:19am
I sometimes take 3 Excedrin Extra Strength with a strong cup of black coffee (but you can't do this too often or you'll get rebounds). It only helps if you're under a 5 Kip.

You didn't say they were waking you up in the middle of the night. That's usually a dead give away.

Take the quiz on the left and see where you stand. Imitrex has worked for so many and there are preventatives that work for many. Since this is your first time, it may take several shots till you find something that works for you.

O2 is great and is the standby for most of us. Ice or heat (about 50/50 - whatever works for you) sometimes helps.

Find a neuro who KNOWS something about CH and get an MRI to rule out something else.

Good luck and hope you'll be PF soon.

Hugs BD

Title: Re: Could this be cluster ha's?
Post by cardogman on Dec 17th, 2005, 11:23pm
you have cluster headache syndrome. The dod I went to told me and he's a well know guy that some CH sufferers don't get terrible pain. Best way to ward of an episode. 100% oxygen froma tank with a face mask at 8 to 10 liters per minute until the pains is alleviated. Most insurance will cover it and you have to find a company in your area to contact your doc for a prescription.

Title: Re: Could this be cluster ha's?
Post by zwibbs/Scott on Dec 18th, 2005, 3:26am
It certainly sounds like clusters, but as Barbara said waking up from deep sleep with unbearable pain is a sure thing. Eeverybody usually experiences different levels....when I was in my 30's------the attacks were more frequent and positively fierce !! There were days when I was getting hit on an hourly basis. The important thing is to make an appointment with a neurologist asap. Alot of the nyc area neuro's have a sign which states that they are pain specialists. ......When I first started getting clusters I was misdiagnosed several times and literally went to 15 doctors  before the 15th declared that I was a ClusterHeadache sufferer......Good Luck. Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
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