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Am I a cluster Head? (Read 1968 times)
ManOnAMission
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Am I a cluster Head?
Jul 11th, 2012 at 7:00am
 
Hello Everybody,

I am new to the site and here in hopes to hopefully find out once and for all if I suffer from cluster headaches. So what better way to find out then from such a unique community right?

I dont want to waste yall's time, so let me cut to the facts.

I am a 19 year old male and as long as I have lived, I  believe myself to be a Cluster Head after seeing countless  doctors, researching hundreds of hours online, and suffering even more from the worst pain I have ever experienced in my entire life.

These are the details of my headaches and I will be very specific as I know it is important:

-the pain is always on the right side, always
-sweating on only the right side of my body
-complete nasal congestion on right nostril
-right eye will tear as if I am balling, left eye fine
-headache comes from nowhere, pre shadow is long enough to basically let me know I am screwed in 5 minutes
-pain seemingly originates in temple but of course is in eye, sinus, forhead, cheek, back of head, pretty much entire right side of my head.
-pain type: ha. no words can describe the pain, but that it is the worst thing I have and ever will experience in my life.
like when the doctor asks you to describe the pain and you just wanna punch him in the jugular
-They always last from 45-60 minutes. But never more then an hour.
-will always wake me up from a dead sleep
-movement and constant motion seems like the only thing to keep me from jumping off a cliff

Those are what my symptoms are like, picture perfect on any and every symptoms list that ever existed for a Cluster Headache.

But here are the things that don't exactly line up:

-Never ever had more then one of these in a day.
-I can go from having three in three days, to three in three months.(part of a cycle?)
-they don't strike me as happening at certain repetitive times(cause of inconsistency in occurance)

So, that being said what do ya'll think?

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Joshua
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Re: Am I a cluster Head?
Reply #1 - Jul 11th, 2012 at 7:33am
 
The headache characteristics (during attack) certainly sound like cluster.
.
What have any doctors said?  Have you been prescribed any abortives (Imitrex, etc.) - and do they work if taken during the onset?
.
When I first began to get these, they presented like yours, very infrequent, on no real regular schedule that I could tell, and as time went on, they evolved.
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Brew
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Re: Am I a cluster Head?
Reply #2 - Jul 11th, 2012 at 7:56am
 
I agree with Joshua - certainly sounds familiar.

You do, however, need to have a doctor actually diagnose you so that you can start to get the relief you require. Not sure where you're located, but this link will list doctors in the US that are familiar with CH syndrome. Try to seek one of these folks out, get a diagnosis, and start treating it:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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Bob Johnson
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Re: Am I a cluster Head?
Reply #3 - Jul 11th, 2012 at 9:14am
 
If you find this a good home:
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
====================================
While a check list of symptoms would appear to make a diagnosis easy--and safe--it's really important to get a solid work-up from a competent doc. Why? look over this post: 
Link to: cluster-LIKE headache.
Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
================
Your experience with multiple docs repeats the experience of many of us. Most docs have little training/experience with his complex area of medicine, hence, the multiple failures to get good care. So,

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.





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Bob Johnson
 
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Guiseppi
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Re: Am I a cluster Head?
Reply #4 - Jul 11th, 2012 at 9:46am
 
It's not unusual, especially in your early years, to have several charatceristics that don'e "exactly" fit. In my late teens, if i felt one coming and could get to sleep, i could dodge the attack! Sure sounds like CH to me.

That being said, get a referral to a "Headache Specialist Neurologist." There is SO much available now to treat these. There are preventative meds which will cut down on the intensity and frequency of your attacks, and abortives that will halt the attack within minutes. When you go to see your doctor, this will be your first indication he knows CH. Oxygen should be your FIRST LINE abortive. I abort my attacks in 6-8 minutes using just oxygen. Check out this link and INSIST on a home prescription for oxygen. If the doc knows CH, he will wholeheartedly endorse it. If he won't prescribe oxygen, get a new doc:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Good luck on finidng a decent neuro. Let us know where you live and maybe someone can refer you to a doc they use.

Joe
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ManOnAMission
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Re: Am I a cluster Head?
Reply #5 - Jul 11th, 2012 at 3:17pm
 
Thank you for all the insight!

I am from San Antonio and have seen a neurologist there. She had little to zero insight on cluster headaches while it felt like I had to teach her what a cluster was. I changed through various medicines over the years from Immitrex, to an every day preventative(which I hated) to finally something called Sumatriptan. I take the Sumatriptan in an injection form(shot to the thigh) at the onset of my attacks and the attacks will always go away after 10-15 min.

But there are negatives to that in The Sumatriptan injections take a while to kick in, make me feel like absolute crap the rest of the day, and are very expensive. I treat each shot like a precious commodity for the purpose of if I run into a bad stretch of needing more then my prescribed 8 injections every two months, I find myself paying 300$ a headache off insurance.

Oxygen getting rid in 6-8 minutes sounds amazing.

So, can anyone in the San Antonio/Austin/Houston area refer me to a specialist?
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Brew
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Re: Am I a cluster Head?
Reply #6 - Jul 11th, 2012 at 3:29pm
 
Imitrex (brand name) = Sumatriptan (generic)
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Re: Am I a cluster Head?
Reply #7 - Jul 11th, 2012 at 3:32pm
 
Did you check out the link I provided? Here's what I found in, like, 30 seconds (nothing listed for San Antonio):

Austin:

Dr. Robert M. Cain
Associated Neurological Specialties

Dr. Craig DuBois
Austin Pain Associates

Dr. Rajat Gupta
Headache & Pain Center

Dr. Marci A. Roy
Austin Headache Clinic

Dr. Sheila Shung

Houston:

Dr. Howard S. Derman
Methodist Neurological Institute

Dr. Herbert P. Edmundson, Jr.
Memorial Neurological Association

Dr. Leonard Hershkowitz
Houston Neurology Associates

Dr. Ninan T. Mathew
Houston Headache Clinic

Lori Meadors, PA
Houston Headache Clinic
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TJMBeav
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Re: Am I a cluster Head?
Reply #8 - Jul 11th, 2012 at 6:07pm
 
Sounds like CH to me.  As for the Imetrix - see if you can get your Doc to write a bigger prescription even if the insurance does not cover - and then get it to a Canadian pharmacy to fill.  Still spendy - but I get mine for less than $30 per (sometimes as low as $24 on a discount).  That assumes you get 24 injections.  Takes about two to weeks to get.  So - one $720 dollar hit gets you 24 magic bullets.

As far as 10-15 minutes - I find if I take it during that shadow warning - or right when I am fairly confident it is not a fake out - it works much faster.  If I wait till it starts really hitting, 10-15 minutes is reasonable and confirms to me that it works for you.  I personnally used that as my test that it was truely a cluster headache - I don't think it works on anythng else.

Good luck.
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Re: Am I a cluster Head?
Reply #9 - Jul 11th, 2012 at 7:26pm
 
TJMBeav wrote on Jul 11th, 2012 at 6:07pm:
I personnally used that as my test that it was truely a cluster headache - I don't think it works on anythng else.

Imitrex was first designed for migraine patients. It works for us, too. You can't use response to one drug as a definitive test for a diagnosis of CH.
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Linda_Howell
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Re: Am I a cluster Head?
Reply #10 - Jul 11th, 2012 at 7:48pm
 
Quote:
Oxygen getting rid in 6-8 minutes sounds amazing.


AND...if you read around here with any consistancy, you will see why.  It works!   you must have a non-rebreather mask, as well as a regulator that goes to 15 lpm at the very least.  25 to 45 lpm works so much better.
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TJMBeav
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Re: Am I a cluster Head?
Reply #11 - Jul 11th, 2012 at 8:19pm
 
Brew - agree, it works on regular migranes as well.  Just saying, if the headache is gone with imitrex it is a migrane.  With the other symptoms it doesn't sound like it's normal migranes to me.
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Re: Am I a cluster Head?
Reply #12 - Jul 12th, 2012 at 9:02am
 
You sound pretty much like me. I have had some random headaches pop up out of cycle, and I usually only have 1 every day or so. In other words, you sound like a typical cluster sufferer to me. Obviously you will want to visit a specialist to get a proper diagnosis, but I would wager what you have is cluster.

If in fact it does turn out to be that, welcome to club! Cool
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