Author |
Topic: semi-cluster like symptoms (Read 699 times) |
|
johnlcox
New Board Newbie
Gender: 
Posts: 13
|
 |
semi-cluster like symptoms
« on: Sep 28th, 2004, 4:35pm » |
 Quote  Modify
|
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?
|
|
 IP Logged |
|
|
|
floridian
Guest
|
|
Re: semi-cluster like symptoms
« Reply #1 on: Sep 28th, 2004, 4:53pm » |
Quote Modify
 Remove
|
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.
|
|
|
| « Last Edit: Sep 28th, 2004, 4:57pm by floridian » |
IP Logged |
|
|
|
johnlcox
New Board Newbie
Gender:
Posts: 13
|
|
Re: semi-cluster like symptoms
« Reply #2 on: Sep 28th, 2004, 4:58pm » |
Quote Modify
|
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.
|
|
IP Logged |
|
|
|
floridian
Guest
|
|
Re: semi-cluster like symptoms
« Reply #3 on: Sep 28th, 2004, 5:00pm » |
Quote Modify
Remove
|
I think some people here have had them switch sides within a cycle, although that is not very common. Anyone remember who?
|
|
IP Logged |
|
|
|
plazticsoul
New Board Newbie
Maybe I'll feel like it tomorrow...
Gender:
Posts: 46
|
|
Re: semi-cluster like symptoms
« Reply #4 on: Sep 28th, 2004, 5:10pm » |
Quote Modify
|
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. 
|
| « Last Edit: Sep 28th, 2004, 5:15pm by plazticsoul » |
IP Logged |
"Marge, where's that... metal dealy... you use to... dig... food?"
|
|
|
vietvet2tours
CH.com Alumnus
New Board Hall of Famer
Team MOOSE DROOL Stinky Stuff on a Hook Prostaff
Gender:
Posts: 1499
|
|
Re: semi-cluster like symptoms
« Reply #5 on: Sep 28th, 2004, 5:17pm » |
Quote Modify
|
If you can take a nap it don't seem likely they are clusters,typically a nap is a big trigger for a ch.
|
|
IP Logged |
Kill em all let God sort em out
|
|
|
Pinkfloyd
New Board Hall of Famer
comfortably numb
 
Gender:
Posts: 1406
|
|
Re: semi-cluster like symptoms
« Reply #6 on: Sep 28th, 2004, 5:22pm » |
Quote Modify
|
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
|
|
IP Logged |
"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
|
|
|
johnlcox
New Board Newbie
Gender:
Posts: 13
|
|
Re: semi-cluster like symptoms
« Reply #7 on: Sep 28th, 2004, 5:28pm » |
Quote Modify
|
on Sep 28th, 2004, 5:17pm, 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.
|
|
IP Logged |
|
|
|
lionsound
CH.com Alumnus
New Board Hall of Famer
breathe
Gender: 
Posts: 2021
|
|
Re: semi-cluster like symptoms
« Reply #8 on: Sep 28th, 2004, 9:45pm » |
Quote Modify
|
on Sep 28th, 2004, 5:00pm, 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
|
|
IP Logged |
|
|
|
BobG
New Board Hall of Famer
Gender:
Posts: 5747
|
|
Re: semi-cluster like symptoms
« Reply #9 on: Sep 28th, 2004, 10:03pm » |
Quote Modify
|
Have you taken the cluster quiz? (under the button on the left side of your screen)
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
pubgirl
Guest
|
|
Re: semi-cluster like symptoms
« Reply #10 on: Sep 29th, 2004, 3:40am » |
Quote Modify
Remove
|
on Sep 28th, 2004, 5:10pm, plazticsoul wrote:| 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. |
|
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
|
|
IP Logged |
|
|
|
plazticsoul
New Board Newbie
Maybe I'll feel like it tomorrow...
Gender:
Posts: 46
|
|
Re: semi-cluster like symptoms
« Reply #11 on: Sep 29th, 2004, 7:26am » |
Quote Modify
|
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!
|
| « Last Edit: Sep 29th, 2004, 7:31am by plazticsoul » |
IP Logged |
"Marge, where's that... metal dealy... you use to... dig... food?"
|
|
|
Opus
New Board Hall of Famer
(Insert witty comment here)
Gender:
Posts: 2509
|
|
Re: semi-cluster like symptoms
« Reply #12 on: Sep 29th, 2004, 9:34am » |
Quote Modify
|
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
|
|
IP Logged |
Zed-Zed-nine plural-Zed alpha,
There is no place like home.
|
|
|
ArCane
New Board Old Timer
Onward through the fog
Gender:
Posts: 312
|
|
Re: semi-cluster like symptoms
« Reply #13 on: Sep 29th, 2004, 1:00pm » |
Quote Modify
|
on Sep 28th, 2004, 4:35pm, johnlcox wrote:| 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. |
|
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.
|
|
IP Logged |
Alchemy’s First Law of Equivalent Exchange: To obtain, something of equal value must be lost.
|
|
|
johnlcox
New Board Newbie
Gender:
Posts: 13
|
|
Re: semi-cluster like symptoms
« Reply #14 on: Sep 29th, 2004, 1:46pm » |
Quote Modify
|
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.
|
|
IP Logged |
|
|
|
thebbz
CH.com Alumnus
New Board Hall of Famer
Ow,Ow,Ow
Gender:
Posts: 2181
|
|
Re: semi-cluster like symptoms
« Reply #15 on: Sep 29th, 2004, 9:00pm » |
Quote Modify
|
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 
BB
|
|
IP Logged |
It wasn't me I didn't do it
|
|
|
yikes-another-one
New Board Old Timer
Gender:
Posts: 384
|
|
Re: semi-cluster like symptoms
« Reply #16 on: Sep 29th, 2004, 9:14pm » |
Quote Modify
|
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.
|
|
IP Logged |
Psalm 23 - Goodness and mercy shall follow US all the days of our lives and WE will dwell in the house of LOVE forever.
|
|
|
Kris_in_SJ
New Board Hall of Famer
There's no place like home.
Gender:
Posts: 1539
|
|
Re: semi-cluster like symptoms
« Reply #17 on: Sep 29th, 2004, 9:27pm » |
Quote Modify
|
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
|
|
IP Logged |
I'm a small woman in small town being chased by a VERY BIG BEAST!
|
|
|
crazy_mj
New Board Junior
SSDD
Gender:
Posts: 100
|
|
Re: semi-cluster like symptoms
« Reply #18 on: Oct 2nd, 2004, 8:49pm » |
Quote Modify
|
on Sep 29th, 2004, 7:26am, plazticsoul wrote: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! |
|
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.
|
|
IP Logged |
|
|
|
Tara Ann
CH.com Alumnus
New Board Hall of Famer
It's always darkest before the dawn.
Gender:
Posts: 2459
|
|
Re: semi-cluster like symptoms
« Reply #19 on: Oct 3rd, 2004, 8:34pm » |
Quote Modify
|
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
|
|
IP Logged |
http://www.myspace.com/taraann77
 
|
|
|
Prense
CH.com Alumnus
New Board Hall of Famer
Kerry is an idiot!
Gender:
Posts: 1607
|
|
Re: semi-cluster like symptoms
« Reply #20 on: Oct 4th, 2004, 11:06am » |
Quote Modify
|
on Sep 29th, 2004, 3:40am, 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
|
|
IP Logged |
Where does the white go in a snowman when the snow melts?
|
|
|
Prense
CH.com Alumnus
New Board Hall of Famer
Kerry is an idiot!
Gender:
Posts: 1607
|
|
Re: semi-cluster like symptoms
« Reply #21 on: Oct 4th, 2004, 11:10am » |
Quote Modify
|
on Sep 29th, 2004, 1:00pm, ArCane 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.
|
|
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
|
|
IP Logged |
Where does the white go in a snowman when the snow melts?
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
  
Gender:
Posts: 14968
|
|
Re: semi-cluster like symptoms
« Reply #22 on: Oct 4th, 2004, 8:20pm » |
Quote Modify
|
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
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss