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Cluster Headache Help and Support >> Getting to Know Ya >> Doubts about diagnosis http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1289776878 Message started by yohan233 on Nov 14th, 2010 at 6:21pm |
Title: Doubts about diagnosis Post by yohan233 on Nov 14th, 2010 at 6:21pm
Hello all-
I was diagnosed with cluster headaches a two months ago by my neurologist. Many of my symptoms fit (age, seasonality, red/droopy/teary eye) but a few key ones do not. I am typing this message right now during an "attack." They're just not that painful. The things I read both here and all over the internet lead me to believe that I should be on the floor, writhing in agony. The headaches do suck, and I don't feel well during an attack, but the pain is never more than a 6-6.5 out of 10. I'd like to think that I'm just that hardcore, and another person's 10 is my 6, but I don't quite believe that. Another thing is, I can treat my headaches with simple ibuprofen. I take two and I'm good for at least 12 hours. Ibuprofen shouldn't work, should it? Everything I've read says that clusters laugh at ibuprofen. My neurologist put me on a dexamethasone taper, and after the first pill, my headaches stopped. Then I went through the fun side effects of powerful steroids: appetite/weight gain, irritability, all of that. Within days after finishing the steroids, they came back, which I have also read is common. I've had a CT of my sinuses and orbits and my neurologist had me do an MRI as well. All came back normal. I've also been examined by an ophthalmologist, who said my eyes were fine. I've completely destroyed my insurance deductible, needless to say. So, my question is, does anyone here have any idea what I might have? Anyone have "mild" cluster headaches? |
Title: Re: Doubts about diagnosis Post by Chris H on Nov 14th, 2010 at 6:49pm
I've never had any relief for cluster headaches from ibuprofen. I have had some very sharp headaches on the side opposite my cluster side that simply went away with naproxen (ibuprofen). Is your headache strictly one-sided? Does your face hurt at all, around the eye, down into the jawline? Does your sinus on that same side get congested?
Not trying to diagnose you, just asking about symptoms. It's a good idea to see a headache specialist for diagnosis. -Chris |
Title: Re: Doubts about diagnosis Post by yohan233 on Nov 14th, 2010 at 8:44pm
Headaches are one-sided, definitely. My eyebrow area hurts, along with the eye itself. Interestingly, a week or so ago I discovered an actual bump on my eyeball. No idea what relation that might be. I have experienced congestion on both sides, but I've been a "snotty" person my whole life. There is actually a headache specialist right next to my house (just googled on your suggestion). Time to see if they take my insurance!
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Title: Re: Doubts about diagnosis Post by Batch on Nov 15th, 2010 at 12:15am
Yohan,
The beast works in strange ways... and as soon as you think you've got it figured out... it changes. That the pain levels of your headaches are low is a blessing... I wouldn't question it too much... Just be thankful. There are some folks who have a combination of cluster headaches and migraine headaches at the same time, but the incidence of this compound condition is very low. Your experience with steroids is typical. Our late friend Mr. Bob Kipple did CH'ers a big favor by developing the Kip Pain Scale located at the left. He avoided trying to describe the actual pain and instead, described the typical reaction at each pain level. Pain levels are also a relative thing and we all perceive them slightly differently. I like to anchor the pain scale like you do with the temperature of water. It freezes at 32º F (0º C) and boils at 212º F (100º C). These are observables upon which we can all agree. Accordingly, I try to anchor the pain scale with the following observables. Most of us wake up between a Kip-3 and Kip-4 and our eyes start to water when the pain starts stinging at Kip-6 followed by the running nose. Between Kip-7 and Kip-8 we become more animated and by Kip-9 we cannot hold still. The first two years I was episodic I though the headaches were sinus related... They were mild, lasted only 10 to 15 minutes, responded to aspirin always hit around the same time at night... 8 pm, and the cycle lasted only a couple weeks.. All that changed the third year as the beast took aim on the back of my eye with an ice pick or screwdriver 4 to 6 times a night between Kip-8 and Kip-9, and none of the NSAIDs would touch them. They would last up to an hour and twenty minutes and the cycle lasted 8 weeks. That year the headaches were diagnosed as sinusitis. The following year it was just as bad and the diagnosis was an un-erupted molar lytic cyst, so the wisdom tooth, my last of four was surgically removed along with the cyst. As soon as I got home that night, the beast came a calling again... and again.. The fourth year my ophthalmologist finally made the diagnosis. He took one look at me and asked who hit me... My eyelid was bulging and the eye almost swollen shut. I told him I was having terrible headaches and described the symptoms... then he said, "You've got cluster headaches" and prescribed imitrex... It wasn't until 6 years later when I turned chronic that I started using oxygen therapy. That was a game changer! It's all I use. You might want to ask your neurologist about an Rx for oxygen therapy at 15 to 25 liters/minute. Settle for 15 liters/minute if he balks at 25... If your headaches respond to oxygen therapy at these flow rates like they did with the steroids, I'd say you're another step closer to believing your neurologist's diagnosis. Take care, V/R, Batch |
Title: Re: Doubts about diagnosis Post by Guiseppi on Nov 15th, 2010 at 9:58am
In my early teens, I was kind of where you are now. In fact, if I felt an attack coming on, and could get to sleep fast enough, I could dodge the attack completely. It was not until my early 20's that it settled into the 2 cycles a year, spring and fall, with the smack the head on the bed post attacks. As Bob mentioned in his post, it seems to take a few years to make itself at home in your head. :-/
Joe |
Title: Re: Doubts about diagnosis Post by seaworthy on Nov 15th, 2010 at 10:08am Quote:
Then it aint CH. |
Title: Re: Doubts about diagnosis Post by Guiseppi on Nov 15th, 2010 at 10:15am seaworthy wrote on Nov 15th, 2010 at 10:08am:
Or, as mentioned in Bob Johnsons well researched posting on the early symptoms of CH, it has not fully morphed into what we recognize as "Classic CH". I would read the article Bob posted and proceed accordingly. Joe |
Title: Re: Doubts about diagnosis Post by Chris H on Nov 15th, 2010 at 10:26am
Batch, Joe, Interesting posts. You made me remember something that the Neuro said at the Cleveland Clinic HC. I had severe sinus headaches for years. When this first started getting bad, seemed like this was sinus related and I eventually had surgery to repair a deviated septum. It changed nothing. The doctor at Cleveland said these siinus headaches were more likely precursors to CH. First I'd heard that.
I can't say that I ever got relief from ibuprofen, but they sure weren't what I'd classify as even a KIP 2. You quickly adjust your pain threshold once these buggers start. Yohan, The intensity kicked up for me starting with severe eye pressure. It felt like my left eyeball was going to explode. I urge you to see a headache specialist, since they are much more likely to have seen CH than your neuro. I went to two different neuros who both misdiagnosed, did a lot of guesswork, etc. before getting me on the right meds. That takes a lot of time, to ramp up, ramp down meds, see if they work, etc. In the meantime, you're dealing with the symptoms. I finally went to the Jefferson Headache Center and got on a fast track to fixing my CH. -Chris |
Title: Re: Doubts about diagnosis Post by jon019 on Nov 15th, 2010 at 11:09am seaworthy wrote on Nov 15th, 2010 at 10:08am:
Gonna have to disagree there...course it depends on the level...but there is many a time I posted while being hit....aint no better place to be than among family. Hint: you can tell when the post is all small case...one hand on the keyboard and one clutching my beloved optimask..... Yohan...let's hope they NEVER get any worse...but BE PREPARED. My experience was "cluster" toothaches for a full year before my first real hit... Best, Jon |
Title: Re: Doubts about diagnosis Post by jared on Nov 17th, 2010 at 2:47pm
I'm certainly no expert, but my experience for a long time was similar to yours. Pretty painful but I was able to pump Ibuprofen all day long and keep a headache away. Most of them never got to the level of headbanging and cursing my existance. This year's been different. I've had less pain free days than painful days this year, and just some all out will-crushing, pride-obliterating, cry-like-a-baby headaches. And I'm like you, I like to think I'm a pretty tough guy, I never cried from physical pain from the broken wrist I suffered at 12 or any time after, until now. They may not be bad now, but do not take them lightly. If indeed they are ch, than the future may hold a rough fight, and it's better to be prepared than sorry. Having said that, I hope that it isn't ch. I wouldn't even wish them on Osama, because then he'd be even more insane. Wishing you many pf days!
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Title: Re: Doubts about diagnosis Post by Joni on Nov 18th, 2010 at 12:37am Guiseppi wrote on Nov 15th, 2010 at 9:58am:
Yep, me, too! |
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