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        Cluster Headache Help and Support >> Cluster Headache Specific >> CH or....?
        
(Message started by: SchwarzenSchafe on Aug 24^th, 2006, 2:14am)

Title: CH or....?
Post by SchwarzenSchafe on Aug 24^th, 2006, 2:14am

I have an appointment with a neurologist so I can be diagnosed, but I believe health is a personal responsibility and I hav elittle faith/trust in mainstream medicine. I'm 99% sure I get cluster headaches, but not 100%. These are the main points where my headaches seem to differ from the classic description:

1) I lie down for 80% of them. I don't lie still mind you, but I lie down. WHen the pain exceeds my capacity to deal with it I pace (stumble and moan actually).

2) I usually get them in the morning after waking, rarely at night.

3) I get maybe 2-5 per year skull bashingly bad hits that turn me into a wimpering mess, but the majority are kip 5-8. My headaches are manageable, I can lead a normal life, I won't need to keep oxygen in my car, I can hold a job.

4) Many cycles are short or never reach more than kip 5 or 6. For instance I jsut finished one that gave me daily kip 6 hits for about 5 days then gone. Lucky me - but is that uncommon for CH?

5) Sound and especially light sensitivity. A bright busy place with lots of people is hell, sometimes a small LED in a dark room bothers me.

6) I read about going from pain free to agony in 5 minuts, and it leaving just as suddenly. My build up and taper off period is always longer than that, about 10-15 minutes. Entire episodes are usually 45 minutes, rarely up to 2 hours (usually these are the real monsters).

That's about all that doesn't perfectly fit the classic symptoms. So if you think any of that seems wierd for true CH please let me know. I really don't want to spend the NEXT 12 years misdiagnosed.

Title: Re: CH or....?
Post by chopmyheadoff on Aug 24^th, 2006, 2:18am

if they are the points that are making you think you DONT have ch then i think you DEFFINATELY have ch.

everyone presents their symptoms differently.im chronic , but i like u , lye down and kind of "stretch my neck" in anything up to a kip 8. im not mying still - but im lying down.

also, my monsters build up over about 15-20 minutes.
sometimes longer - sometimes shorter.

really, these symptoms could all be fit into the CH pigeon hole

Title: Re: CH or....?
Post by georgej on Aug 24^th, 2006, 2:25am

Wait for the diagnosis before you make any decisions about alternatives or about prescription medications.

Treating for CH if it is not CH could be ineffective or dangerous.

Sorry you're having trouble, but no matter what it turns out to be, we'll try to steer you in the right direction.

Regards,

George

Title: Re: CH or....?
Post by BlueMeanie on Aug 24^th, 2006, 3:12am

on 08/24/06 at 02:14:14, SchwarzenSchafe wrote:

1) I lie down for 80% of them. I don't lie still mind you, but I lie down. WHen the pain exceeds my capacity to deal with it I pace (stumble and moan actually).

I not only NEVER can lie still, I acutally have to run in place for what seems to be an hour (actually less though). Many times, I'll put my coat on at 2AM and run up and down the steet until the pain starts to subside.

2) I usually get them in the morning after waking, rarely at night.

Most people always get them at night even though daytime hits are not uncommon at all

3) I get maybe 2-5 per year skull bashingly bad hits that turn me into a wimpering mess, but the majority are kip 5-8. My headaches are manageable, I can lead a normal life, I won't need to keep oxygen in my car, I can hold a job.

I get 2-3 per day and never below a KIP7. Always have Imitrex injections wherever I go do to the extreme pain.

4) Many cycles are short or never reach more than kip 5 or 6. For instance I jsut finished one that gave me daily kip 6 hits for about 5 days then gone. Lucky me - but is that uncommon for CH?

That sounds very short, I've never had a cycle less than 8 weeks.

5) Sound and especially light sensitivity. A bright busy place with lots of people is hell, sometimes a small LED in a dark room bothers me.

Light does bother my CH eye and I have to keep it closed. The other eye can stay open. Sound doesn't effect my CH's at all.

6) I read about going from pain free to agony in 5 minuts, and it leaving just as suddenly. My build up and taper off period is always longer than that, about 10-15 minutes. Entire episodes are usually 45 minutes, rarely up to 2 hours (usually these are the real monsters).

That sounds about normal to me.

That's about all that doesn't perfectly fit the classic symptoms. So if you think any of that seems wierd for true CH please let me know.

I can't tell you if you get them or not. I know alot of Chronics have many of your symptoms with less KIP levels and such, but as you can see, your headaches don't fit mine symptoms, but I'm episodic so who knows. There are several headache types that resemble Clusters so it's really hard to say.

Good luck with whatever happens and regardless I sure hope you get relief.

Title: Re: CH or....?
Post by Margi on Aug 24^th, 2006, 10:01am

Your duration of cycles is confusing. I bet there's not a clusterhead among us who wouldn't pay big money to have cycles that short. The laying down and the not being woken up through the night are against the norm as well. I'd sure be pushing the neuro for a CT Scan or an MRI to rule out anything else going on....

Where is the location of your pain?

Title: Re: CH or....?
Post by Charlotte on Aug 24^th, 2006, 10:11am

Don't be afraid of the neurologist. Consider him a tool to help you, and make sure you use him the best you can. Print out this thread or anything you think will help the neuro understand what, exactly, is happening to you.

Even if it is not in a category, like mine, the neuro can still make a plan to try to help you, specifically. This will be a lot of work on your part.

Helping you is more important than categorizing you.

Hopefully you will have a doc or neuro that you can keep in touch with as things change and get medication adjustments. There is a lot of trial & error, so you need a doc or someone who listens.

Good luck. Let us know when & we'll do our part, praying & vibing.

Charlotte

Title: Re: CH or....?
Post by SchwarzenSchafe on Aug 24^th, 2006, 1:46pm

The duration of my cycles was what got me wondering if maybe it's not CH. Sometimes they don't even seem like "cycles", for instance right now I laid in bed a little too long this morning and I have a kip 3-4 as I type, but otherwise I would say I'm not "in cycle". It'll probably go away soon. Could it be that I'm actually in cycle but it's very mild so hard to recognize? Or is it normal to get pain when not "in cycle"? A full blown episode is standard CH though, 6-8 weeks of intense pain shows up at around 11AM (usually), red droopy eye, pace around punching myself in the head, and the whole 9 yards. That happens a couple times per year. And then I also go through times where I can't cause a headache if I try.

Also the pain is usually a semi-rythmic stabbing. It's always in the eye, sometimes side of face and usually the jaw as well. It's a constant pain until it gets really bad, then I get jabs of more intense pain. Maybe timed with my heartbeat but I've never tested that. Is CH always constant pain or can it be a rythmic stabbing?

I had CT scan, EEG, and MRI about 8 years ago before settling on "migraine" as a diagnosis.

Migraine doesn't really fit, I always wondered why my "migraines" were so short and intense. Paroxysmal hemicrania seems more likely than migraine based on symptoms, but they occur much more often and are shorter than mine. Tension headache... yeah right. So it could be organic headache, tumor or some other strange thing. But theres the fact that I've seen a neurologist that did Cat scan, EEG, etc, and found nothing, and they haven't really changed at all in 12 years.

Anyway, thanks everyone for reading all this and offering an opinion.

Title: Re: CH or....?
Post by Katherinecm on Aug 24^th, 2006, 3:44pm

It's possible to have both migraines and CH... I do.

Normally light and sound don't bother me, sometimes they do. Glare more than light. I hate to be in a crowd when I am in pain, it's sensory overload. I can always lie down with a migraine, even if it ramps up from a typical kip 2-3 to a 6 or 8. But if it's a CH, anything 5 or over means I cannot lie down. Sometimes even lower levels with CH it's too annoying to lie down. If it's low level I can sometimes sleep if I am leaning against tons of pillows stacked up high.

I also think that once you've had CH for a while you begin to learn to pay attention to the signs one is coming on. If I'm paying attention to this kind of vague burning feeling in my eye that radiates down my neck if the attack will be bad, I can usually figure out an attack is coming in about 20 minutes and approximately how severe it will be. If I drink a can of red bull I can delay it a little more. Taking medications at the first sign also makes them much more effective. When I first got severe attacks I did not pay attention to this very vague sort of thing and the attacks seemed to come on with no warning.

I've been chronic and when this episode first started I went through a period where I would constantly be woken up in the middle of the night and have some daytime hits. Then that changed and I had a few months where I would only get hit at night if something else woke me up. I suspect this was due to medications, but it may have just been changing on me. Then I went through a period of non-stop hits (due to new medication), and since then I've been having my worst time of day from about 3pm-2am, with unpredictible hits at other times of day. If I can delay going to bed until after the last hit is over, I can usually get about 5 hours of uninterrupted sleep. If someone wakes me up during that time it immediately triggers a headache.

Overall, check with a neuro, but know it's not unusual for CH to present slightly differently in everyone AND for it to change over time.