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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> semi-cluster like symptoms
        
(Message started by: johnlcox on Sep 28^th, 2004, 4:35pm)

Title: semi-cluster like symptoms
Post by johnlcox on Sep 28^th, 2004, 4:35pm

I have been having headaches for over 4 weeks now and I have been to the doctor 3 times without much help. I would like to list my symptoms and see if you guys think it could possibly be cluster headaches. My dad has cluster headaches, however I have read that they do not run in families. Despite this fact, I can't seem to fit my symptoms to any other type of headaches.

About a week before any of the headaches started I began having trouble sleeping. I was waking up 3-5 times per night. Then the Monday of the following week I had 2 semi bad headaches that lasted about 1.5 - 2 hours each. Then on tuesday I had a really bad headache just before lunch that kept me from eating, and I had another really bad one around 3 that was so bad that I went home from work. It ended up going away finally around 5 and I tried to take a nap.

Since those first 2 days I haven't had any headaches worse than those, but I have had some equivelant ones. I've had a small dull headache everyday since that Monday and on some days I get worse ones that last for just an hour or two at a time. I usually have the bad ones on a Monday or Tuesday after the weekend. The bad ones also seem to occur around lunch time and also mid afternoonish. I have also had a couple in the evening and one at 2am and 5 am respectively.

My sleep problems also have not remedied themselves at all during these past 4 weeks of headaches. The headaches are always one sided starting behind my eye. The really bad ones went down my cheek, around my ear and down the back of my neck. Between headaches the side has switched, but most have been on the right side. I also have wanted to hit my head on the wall or my desk at work when I have the really bad ones. I did try hitting my head on a wall when I had one at home and it seemed to at least lessen the pain.

The doctor had some blood tests done and all of them came back normal. I just had an MRI on friday and It came back normal. I have tried rizatriptan which did nothing but make the rest of my body feel worse. Vioxx which also made me feel worse. Yesterday the doctor prescribed Trazodone for my sleep problems, and he hopes that it will fix the headaches. However, I believe the headaches have been the cause of the sleep problems rather than the other way around.

What do you guys think? Also does anyone know of any good Neurologists in central/western Iowa?

Title: Re: semi-cluster like symptoms
Post by floridian on Sep 28^th, 2004, 4:53pm

They can run in families. I get disrupted sleep right before my cycle starts - waking up, especially early in morning, feeling very energetic. 1.5 - 2 hours is on the long side for an individual headache, but not impossible. Referred pain down jaw and neck is common. We don't diagnose here, but what you have described is consistent with cluster headaches. The dull ones we call 'shadows.'

Quote:

Lancet Neurol. 2004 May;3(5):279-83.

Epidemiology and genetics of cluster headache.

Russell MB.

Department of Neurology, Akershus University Hospital, Oslo, Norway. m.b.russell@klinmed.uio.no

Cluster headache, the most severe primary headache, is characterised by unilateral pain, ipsilateral autonomic features, and, in many cases, restlessness. Recent epidemiological studies indicate that the prevalence of cluster headache is about one person per 500. Genetic epidemiological surveys indicate that first-degree relatives are five to 18 times-and second-degree relatives, one to three times-more likely to have cluster headache than the general population. Inheritance is likely to be autosomal dominant with low penetrance in some families, although there may also be autosomal recessive or multifactorial inheritance in others. To date, no molecular genetic clues have been identified for cluster headache. Identification of genes for cluster headache is likely to be difficult because most families reported have few affected members and genetic heterogeneity is likely. Future focus should be on ion channel genes and clock genes. This review summarises the epidemiology and genetics of cluster headache.

Title: Re: semi-cluster like symptoms
Post by johnlcox on Sep 28^th, 2004, 4:58pm

The ones that I think lasted 1.5 to 2 hours were about 4 weeks ago, so they could have been shorter. I'm not too good at estimating time.

The main thing that seems off is that they switch sides between headaches sometimes. I've only read that they switch between cycles.

Title: Re: semi-cluster like symptoms
Post by floridian on Sep 28^th, 2004, 5:00pm

I think some people here have had them switch sides within a cycle, although that is not very common. Anyone remember who?

Title: Re: semi-cluster like symptoms
Post by plazticsoul on Sep 28^th, 2004, 5:10pm

Forget typical symptoms. For every regular this, there's an irregular that. Mine switches sides quite often, even though it's primarily on the right side. NOBODY has been able to say for certain whether or not I have CH because my symptoms aren't typical. I don't really get "attacks"... my pain does fluctuate but it's also remained pretty constant (although, perhaps my coping skills have gotten better) for the past 5 1/2 months, but it switches around sometimes with major neck stiffness. Oxygen therapy only seems to work while I'm breathing it. The moment I stop, it comes right back. So I don't bother with O2. The doctors can't find anything else to go on. So maybe in a few more months if things don't let up, I will request the same tests be retaken (MRI's, CT's, blood work, etc), but I am pretty sure I have CH. It's just not the typical variety. I just hope one day this cycle will end and that I'm not chronic. :-/

Title: Re: semi-cluster like symptoms
Post by vietvet2tours on Sep 28^th, 2004, 5:17pm

If you can take a nap it don't seem likely they are clusters,typically a nap is a big trigger for a ch.

Title: Re: semi-cluster like symptoms
Post by Pinkfloyd on Sep 28^th, 2004, 5:22pm

I have had them switch sides during a cycle, but not anything close to alternating sides. They switched sides a couple of times in a cycle but once they switched, they'd stay put for weeks or months. Out of approximately 50 cycles, this happened only a few times.

PF

Title: Re: semi-cluster like symptoms
Post by johnlcox on Sep 28^th, 2004, 5:28pm

on 09/28/04 at 17:17:41, vietvet2tours wrote:

If you can take a nap it don't seem likely they are clusters,typically a nap is a big trigger for a ch.

I only said that I tried to take a nap. I never actually slept when I was trying to take the nap then. I couldn't even lay down to try to take a nap while I had the headache though. Then after the headache was gone I tried to nap, but just basically kept rolling over and never slept. It was similar to how I feel at night, except at night I usually at least fall asleep for short periods of time.

Title: Re: semi-cluster like symptoms
Post by lionsound on Sep 28^th, 2004, 9:45pm

on 09/28/04 at 17:00:05, floridian wrote:

I think some people here have had them switch sides within a cycle, although that is not very common. Anyone remember who?

Me.
I've had it switch sides during a cycle, an attack, or be on both sides too. I'm so talented. :)

johnlcox, please get yourself to a neuro.

PF wishes for you,
-L

Title: Re: semi-cluster like symptoms
Post by BobG on Sep 28^th, 2004, 10:03pm

Have you taken the cluster quiz? (under the button on the left side of your screen)

Title: Re: semi-cluster like symptoms
Post by pubgirl on Sep 29^th, 2004, 3:40am

on 09/28/04 at 17:10:43, plazticsoul wrote:

Sorry, but we can't just "forget typical symptoms", that is what helps the neuro's diagnose CH or CPH or whatever the headache type is and give the right treatment.
If we forgot typical symptoms then everyone with a headache would have CH and may be given some unnecessary and quite heavy duty drugs.

For what it's worth (probably nothing) IMHO as a non-doctor, if you don't have attacks, you don't have CH. There are other headache conditions which are far more probable, and easier to treat.

Wendy

Title: Re: semi-cluster like symptoms
Post by plazticsoul on Sep 29^th, 2004, 7:26am

I'm only saying that not everything always fits a uniform description. We are not all wired exactly the same.

If I don't have CH, fine, but I REALLY have nothing else to go on. Your advice does not help me. I've taken a bazillion tests with all normal results and I've got to wait a while before I can have them retaken. I wish it were a simple problem to solve because it's put a damper on my whole life and it's almost made me lose my mind a few times!

Title: Re: semi-cluster like symptoms
Post by Opus on Sep 29^th, 2004, 9:34am

I had them switch sides during a cycle and during about 5 CH's. They started on the left ( old side), went away for a sec and then slammed me on the right. Since then it's always been the right side.

Opus/Paul

Title: Re: semi-cluster like symptoms
Post by ArCane on Sep 29^th, 2004, 1:00pm

on 09/28/04 at 16:35:00, johnlcox wrote:

CH has been in my family for multiple generations. Where did you read that CH does not run in families? My dad and grandpa would get a kick out of that one. I wouldnt trust any of those articles for information.

Title: Re: semi-cluster like symptoms
Post by johnlcox on Sep 29^th, 2004, 1:46pm

I think I read they don't run in families in the medical info link on the left of this site. Then again I can't think straight anymore so I don't know for sure where I got that idea.

Title: Re: semi-cluster like symptoms
Post by thebbz on Sep 29^th, 2004, 9:00pm

Hey John.
To answer your ? for me after 25 years never had a Ch on the other side. I think all of us wish there were some standard with these things. There are unequivical symtoms, max pain, usually unilateral, attacks start when one relaxes. There are also common triggers. Speaking for myself at about 15 years into this I drove myself batty trying to nail down what the deal was . I'm still trying. Hang in there and get to the neuro,best to ya 8)
BB

Title: Re: semi-cluster like symptoms
Post by yikes_another_one on Sep 29^th, 2004, 9:14pm

Dont forget that you can always have two different types of headaches working against you.

It's not unusual foryou to start with a migraine, and then it will switch sides and be the darn CH....

When the weather dances and swings into change,
all kinds of factors can make the blood vessels swell
and cause havoc.....

I wish I could tell is a shadow was a migraine,
or if the mirgraines trigger the CH....
or if a brain damage happend when I was one and fell off the darn bunk bed at home....

but we don't know everything there is to know, yet.
So hang in there, keep journaling specific info about the headaches so you can remember better.

Good luck.

Title: Re: semi-cluster like symptoms
Post by Kris_in_SJ on Sep 29^th, 2004, 9:27pm

Hi John,

Everything you've read so far is right! I'll bet you're really confused now.

Every CH sufferer is different. Some have migraines as well as CH. With a few the CH switches sides during a cycle. I, myself am a pretty classic case of episodic CH. I will say that my cycles are slow to ramp up - have 1, skip 3 or 4 days till the next, skip 2-3 day till the next, then get to the point of having one everyday, twice a day, etc. (thank goodness for Imitrex Statdose)! Also, once my cycle is established I have that constant shadow HA 24/7. Until my prevent kicks in, they don't go away.

Run - do not walk - to the nearest neurologist who specializes in HA. Or do the same to your GP. Meantime, keep a HA diary, noting the times, duration, location and intensity of the pain. You need a diagnosis before any kind of treatment can be started. Nobody should have to suffer severe HA pain (whether it's cluster or not). And keep reading. Take what applies to you with you to your appt.

Many hugs and good vibes coming your way,

Kris

Title: Re: semi-cluster like symptoms
Post by crazy_mj on Oct 2^nd, 2004, 8:49pm

on 09/29/04 at 07:26:06, plazticsoul wrote:

I feel you. I am in the same boat. Was diagnosed about two months ago, and still don't agree with it all. I have been told so many different things about my head, but none of which have helped me any. All I am looking for is a solution to the constant pain and the insanity I feel due to it. This thing has consumed my life, and has pushed me to the edge, I can't even tell you how many times I just wanted to pull the trigger.
I turned to this website in hopes of finding two things. Support and a cure. I know now that there isn't a cure, but there is lots of support and advice. Two things that have helped me get through the longs days and the bad times.

Title: Re: semi-cluster like symptoms
Post by taraann on Oct 3^rd, 2004, 8:34pm

Hang in there John, if it turns out to be CH (and I can't stress enough that you need a good doc and lots of patience to find out) this is the best place to settle in.

BTW you have a PM

Title: Re: semi-cluster like symptoms
Post by Prense on Oct 4^th, 2004, 11:06am

on 09/29/04 at 03:40:00, pubgirl wrote:

Sorry, but we can't just "forget typical symptoms", that is what helps the neuro's diagnose CH or CPH or whatever the headache type is and give the right treatment.

Primary HAs are diagnosed based on symptoms... Tests are used to rule out other conditions which would make the HA secondary. There are exceptions to the way primary HAs are diagnosed (CPH for one), however, symptoms still remain the number one indicator.

Wendy is right on here.

This is why a journal containing as much information as possible about HAs is crucial for a proper diagnosis. The doc can only go off of what you tell him/her.

Chris

Title: Re: semi-cluster like symptoms
Post by Prense on Oct 4^th, 2004, 11:10am

on 09/29/04 at 13:00:10, ArCane wrote:

It will definately take more time for this to be determined. A CH diagnosis 30 years ago would have been very rare. Actually, I think it has only been within the past few decades that CH was finally determined to be one of the primary HA conditions. I could be wrong though.

Chris

Title: Re: semi-cluster like symptoms
Post by Charlie on Oct 4^th, 2004, 8:20pm

Clusters will wake you out of a sound sleep and the last thing you want to do or can do is sit still.

For me, this is the strongest indicator.

Good luck and let us know how you're doing.

Charlie