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suesue422
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new to the group, saying hello
« on: Dec 22nd, 2007, 11:51pm »
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Hi All,
 
I'm Sue, married, age 27.  I went to the doc yesterday, and he thinks I'm getting cluster headaches.  I'd heard of migraines (which my sister gets) but never clusters.  He gave me some Imitrex and told me to call him after the next headache, telling him whether or not the Imitrex works.  I came home and searched the internet and found this site.  When I read the stories on the homepage, I saw myself.  One man described clutching his hands behind his neck, and I do the exact thing.  My husband yells at me for hitting myself in the head or banging it against something.  He doesn't understand why I can't sit still, why I can't just lay down and go to sleep (hah)!  I've tried everything to get to the pain to stop, and I just yell, "I want to cut my head off!"  
 
I do have a couple of questions for you guys though.  My doctor noticed that my left eye (which is the side I get the pain) doesn't track correctly.  He said that when I look up, my right eye goes up but my left goes to the side.  I have to go to an eye doctor to check it out.  He just wants me to get checked out because 1- it's unusual in adults and 2- it's the same side as my headaches.  I was wondering if anyone else has this problem and if it does seem to be related to the headaches.  My second concern is that I also have pain in the neck and jaw on the left side (could be TMJ related) and was wondering if this was ever associated with clusters.  Are clusters frequently misdiagnosed as recurring sinus infections?  I take Sudafed and allergy stuff nearly everyday, and I'm wondering if any of my pain is truly sinus related.  
 
Any input is greatly appreciated.  I'll post with results from the eye doc and info on future headaches.  I've just got to learn to listen to my body to know when to take the meds.   Thanks for reading.
 
-Sue-
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Re: new to the group, saying hello
« Reply #1 on: Dec 23rd, 2007, 1:08am »
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 Hi Sue & Welcome to Clusterville
 
  We hope it's not CH . . . but it sure sounds like it . . . and if so, you're in the right place.
 
  The "eye tracking" is not something I recall being discussed.
 
  I assume your doc gave you Imitrex tablets?  Because CH attacks ramp up to unbearable pain in minutes . . . and the pills take 20 minutes to work . . . most here use the injectible Imitrex which works in minutes.  There's also a nasal spray which is quicker than the pill, but slower than the injectible.
 
  The FIRST-line abortive for most of us is hi-flo oxygen (12-15 lpm) with a non-rebreather mask (the one with the bag).  I can't use Imitrex (artery blockage & high cholesterol). . . . so 02 is my only abortive . . . and can usually kill the beast in minutes if used early-on in the attack.  Safe, effective, few (if any) side effects.  Requires a prescription . . . you'll need to copy info off this board and take to your doc.    
 
  Start a headache journal now.  Note time, duration of attack, Kip (pain) level (see "the kip scale" link on left), and take the journal and a copy of the Kip scale with you when you see your doc again.
 
  Take the cluster quiz (on left also) and let us know how you do.
 
  If it is CH, you will need a preventive med (Verapamil worked for me) . . . and there are several . . . but there's nothing out there that hasn't been tried by someone here.
 
  Read, read, read . . . there's much info here and material to also pass along to the folks who don't understand why you react so violently to "just" a headache.
 
  And yes, many,many here have been misdiagnosed as having sinus infections.  Somewhere arround here (SOMEONE PLEASE POST THE LINK OR PIC) there is a diagram of the head showing the trigeminal nerve and the blood vessels which run beside it.  For whatever reason, our hypothalmus sends and incorrect signal which dilates the blood vessels (up to 20 times normal), putting pressure on the nerve.  You can follow that nerve and trace your pain . . . . eye, sinuses, teeth, neck.  Imitrex is a constrictor which reduces the size of the vessels, taking pressure off the nerve . . . pain goes away.   02 "tricks" the brain into reducing the size of the vessels . . . pain goes away (for most of us).
 
  You have a lot of reading to do and many questions to ask.  There will be more folks along shortly with some specific questions so we can better help you get our beast under control.
 
    Be Safe,   PFDANs
 
  Richard
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Re: new to the group, saying hello
« Reply #2 on: Dec 23rd, 2007, 5:38am »
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Sue, Welcome!!!!
 
Wow, I was diagnosed with CH only 16 days ago, and have been reading this site for about 2 weeks soaking in everyone's wisdom, and now reading your post I already feel like a veteran now reading your post, recognizing how stereotypical your comments and questions are of CH sufferers!  Saturday before Christmas must be a slow day, but you should expect a flood of great posts from some truly knowledgeable people very soon.  Until then, since I just got over an attack and can't get to sleep for a little while, you'll have to make do with me...
Quote:
http://tinyurl.com/dd9ro

Hug him and send him flowers.  Mine started 8 years ago at age 24, and as you'll see if you spend some time on the forum, if you're unlucky enough to have CH then at least you were lucky enough to have a doc that knew what it was.
Quote:
I'd heard of migraines

You can tell your sister she can take her migraines and go sit at the little kids table.  The mechanisms are similar, but people who have suffered both say migraines don't hold a candle, so if there is any sibling rivalry between you then here's something she can't beat you at!
Quote:
One man described clutching his hands behind his neck, and I do the exact thing.  My husband yells at me for hitting myself in the head or banging it against something.  He doesn't understand why I can't sit still, why I can't just lay down and go to sleep (hah)!  

That's all Cluster 101 behavior.  In fact, it's one of the questions doctors ask to differentiate cluster headaches from other types.  If you like to go sit still in a dark room, it's probably migraines.  If you can't sit still, rock back and forth, bang your head (MANY people do this), jab your eye, etc. - sounds like clusters.  From the IHS cluster diagnostic requirements: "a sense of restlessness or agitation ... Patients are usually unable to lie down and characteristically pace the floor."  That's an understatement, but what do you expect from doctors?  My wife often says, "Why don't you just go lie down?"  I take that to mean, "If you would just go lay down and sleep, I you'd be out of here and I wouldn't be bothered by your pain."  My current answer is, "Why don't you?"
 
Seriously, you need to read through these forums, and anything you can get your hands on about CH.  Then, you need to ask your husband to read them.  If he's not interested, then you need to force him.  Not to sound melodramatic, but this illness has seperated many marriages over time, and I think it's important that your spouse accept the reality of what you're facing, and understand the severity of your pain.  It took my wife 3 years to do that, and we're still dealing with hurt feelings from "way back then" even though we're on the same page now.
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I've tried everything to get to the pain to stop, and I just yell, "I want to cut my head off!"

Now THAT'S funny!  I told my wife the other day that when I die, I want my head cut off from my body, creamated, and shot into space so it will be seperated as far from my body as possible from the rest of eternity.  I then made the most serious face I could, and let her know that I was in no way joking, and I hoped we could afford to do that by then.
Quote:
when I look up, my right eye goes up but my left goes to the side.

Nope.  I'd put odds on it, that doesn't sounds like CH, or any other hypothalmus, trigeminal, or similar condition.  If I were you, other than the eye doctor, I'd do the following.  Once your current CH cycle ends (hopefully soon), see if the eye tracking problem is still there.  If it's still happening, then it can't possibly be related.  CH symptoms/problems always occur together, and then go away together.  Most CH sufferers have cycles of headaches once or twice each year, usually at the same time (spring and fall, for instance), lasting 8 to 12 weeks (for instance), and the rest of the year they are completely symptom free.  If your eye-tracking problem happens year-round, then it can't be related to your CH.
 
On the other hand, there are other illnesses that can mimick CH, so the eye tracking could be a symptom of some other illness that is also causing CH-like symptoms, so go to whatever lengths it takes to answer that question.
 
Quote:
My second concern is that I also have pain in the neck and jaw on the left side (could be TMJ related) and was wondering if this was ever associated with clusters.

YES, yes, YES!  I was told I had TMJ for years, as well as chronic neck pain, as well as chronic headaches.  Doctors like their diagnoses to be nice and tidy, so symptoms that are a bit "out of the box" may cause some docs to say "oh, you also have x, y, and z."  Just from reading this forum for 2 weeks, I've found most people have pain in those areas.  This is where Richard was talking about looking at the Trigeminal Nerve, so you can understand the areas where the pain can exist.  I found this image:
http://tinyurl.com/dd9ro
My worst pain in the beginning was down my neck, starting in the back of the head, left side, between the spine and ear.  I also had pain along my jaw.  I've had days where all of my upper teeth felt like they had toothaches (very common with CHers).  It's commom to have stabbing and pain around the eye (but usually behind it), around the ear, in the "neck" area (but really toward the skull above the neck).  If you look at those images, You'll see that the trigeminal nerve covers suck a large area that the symptoms can really vary.  The common denominator is eye, neck, jaw/ear/face.
 
Quote:
Are clusters frequently misdiagnosed as recurring sinus infections?  I take Sudafed and allergy stuff nearly everyday, and I'm wondering if any of my pain is truly sinus related.  

God, yes!!!!!!!!!!!!!!!!!!!!!!!!!!  That's one of the most common complaints I've read here.  I read a study about misdiagnosis of cluster headaches, and it said that 5% of CH sufferers underwent unnecessary deviated septum or sinus surgery prior to proper diagnosis.  Unfortunately, 6 weeks before diagnosis, I was one of those, and I'm still blowing blood and chunks of green mucus out of my nose many times each day (along with increased pain) because of it.  It did me no good.  A CT scan of your sinuses should show whether your sinuses are the problem.
 
Regarding meds:  Please don't wait, and beg your doctor to start you on the right kind of meds for CH right away.  From everything I've read on these boards (and what's worked well for me), if you're starting a brand new CH cycle, it would seem you'd start on the following:
 
Verapamil, 120 mg/day
Topomax (or some other antiseizure)
Imitrex - abortive, when they start
 
Oh, and if these continue, PLEASE don't be afraid of oxygen.  It's better than taking drugs, and it works.  The veterans here will all start suggesting it soon, you may not like it at first (I didn't and my wife defintely didn't), but if your headaches are serious and frequent enough, it's the best, cheapest, and most effective solution.  If you're resistant to the idea of having an oxygen tank in your house now (I'm sure your husband is), we'll wear you down eventually.
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Re: new to the group, saying hello
« Reply #3 on: Dec 23rd, 2007, 6:00am »
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P.S. - I took allergy meds for years before the headaches started, and my allergies only flare up in the spring season, even though I took AllegraD and Nasonex year round.  Good allergy meds alleviate allergy symptoms for everyone I know, and don't cause anythingg resembling CH.  There is no way allergies could cause the type of headaches that you describe.  Banging your head, being agitated, saying you want to cut it off, that sounds like Cluster Headaches until proven otherwise to me.
 
Also, if I didn't make it clear enough before, make your husband read up (maybe on the support part of the forum) very soon.
 
If you're getting these headaches daily or semi-daily, make sure you're getting the right medications to shorten your cycle (preventatives), and to abort the headaches when they start (abortives).  Imitrex is the best, but not the pills.  Ask for a referral to a neurologist, and to one with a headache specialty if you can.
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Re: new to the group, saying hello
« Reply #4 on: Dec 23rd, 2007, 6:44am »
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Welcome to Clusterville.  I can't tell you how many CHers over the years have had "dental problems", sinus problems, and other totally "unrelated to CH" problems diagnosed.  
 
Take the CH quiz on the left....
 
REad. READ. READ -- one thing you're gonna find out real quick -- families DO NOT understand the pain from these things.... only another sufferer can understand it. So when someone on this board says, "I understand" you can bet your bippy, we do and have been thru exactly what you're going thru right at that moment.  
 
O2 is the first choice of most of us here -- 12-15 liters per minute with a non-rebreather mask (the one with the bag). Anything else is USELESS! This has proven effective to MOST of us.
 
Melatonin at bedtime has helped a LOT of us get thru the REM sleep thus eliminating the night hits (most of the time).
 
RED BULL energy drink (or another one of your choice) at the onset of a headache has proved to be an abortative for a lot of us.  
 
Imitrex (injectible or spray) is the DRUG of choice as an abortative around here for MOST. Personally, I use Cafergot (ergotomine) - I don't like Imitrex, but that's just me (I'm chronic and don't like how Imitrex makes me feel).  
 
Preventatives vary with each person. I take topamax, but a lot of people have bad side effects with it. Verapamil, Lithium and some others have proven to be effective with a lot of people. Predisone tapers work well while the prevents are getting in your system, but have bad effects if taken too long.
 
One thing to remember -- what works for one of us - does NOT work for ALL. That's the problem with these damn HA's. They're unpredictible and we do NOT all react the same to anything.  
 
This site has been here since 98 and a lot of us "oldtimers" have been around since then. There is a wealth of information here (more than in most medical libraries) on CH. Ask questions (there are NO stupid ones) and someone will be along to answer them for you.  
 
We have a supporters group for families - would suggest you get your hubby involved in that - might give him some idea of what you're going thru.  
 
We're here to HELP - use us..... and remember - we do UNDERSTAND cause we're all in the same boat...
 
Hugs BD
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Re: new to the group, saying hello
« Reply #5 on: Dec 23rd, 2007, 7:29am »
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Hi Sue, and welcome. This family has been a godsend for me. My Neuro diagnosed me with CH's and he was working on different meds for me. The Prednisone taper worked great, but I was having a problem with the Lithium, so he scripted Verapamil which was not really working at all.
 
It wasn't until my wife Angie found this site that I learned a lot more about these headaches. I read and read then read some more.
 
I went back to my Neuro and had printed off the info to your left on the o2. I asked if he would take a moment and read it and he said absolutely. I asked for a script for the o2 and he said no problem, let's try it. I am his 1st patient to get the o2. I also said the Verapamil was too low of a dose for me and he said I am in good shape health wise so he scripted it to me at 480mg daily. I found my cocktail this time!!
 
I get on the o2 at the very first sign of an attack and take the Verap 480 daily. This has kept the beast at bay, for now anyways.
 
Clusterville is always open 24/7 so you can always find someone available if you need a shoulder or to vent a bit.
 
I hope you find what works for you soon. Have a Merry Christmas!
 
    Barry Smiley
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Re: new to the group, saying hello
« Reply #6 on: Dec 23rd, 2007, 8:26am »
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Exploring all the buttons (left) will take you to multiple other sources of informatiion. Worth it as you have time. For a more coherent presentation to start your learning, suggest one of these books.
-----
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."Wink
 
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
 
--------
 
Two good sources. Print out Rozen to share with  your doc. The other link takes you to a headache doc in the Chicago area where there is much to mine.
 
http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
======================================================================== =
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
   
http://www.plainboard.com/ch/chtherapy.pdf
 
« Last Edit: Dec 23rd, 2007, 8:27am by Bob_Johnson » IP Logged

Bob Johnson
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Re: new to the group, saying hello
« Reply #7 on: Dec 23rd, 2007, 9:10am »
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Hi Sue,
 
Welcome to the nut house  Grin  Sorry you have clusters but I'm glad you found us.
 
Obviously you've had some great advise already.  Please push for some imaging though.  An MRI or CTScan would be a good idea to rule out anything more sinister.
 
Read everything, question everything.  You are your own best advocate and education is your best weapon.
 
Wishing you many PFDAN!
 
-Dennis-
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Re: new to the group, saying hello
« Reply #8 on: Dec 23rd, 2007, 11:52am »
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on Dec 23rd, 2007, 1:08am, RichardN wrote:
 
(SOMEONE PLEASE POST THE LINK OR PIC) there is a diagram of the head showing the trigeminal nerve and the blood vessels which run beside it.  

 
 

 
Hi Sue, welcome. You've been given tons of good advice.
Stick around and read.  Smiley
pain free wishes, nani
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Re: new to the group, saying hello
« Reply #9 on: Dec 23rd, 2007, 1:49pm »
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Wow, thank you everyone for all of your replies!  I feel so much better having found this site and seeing people who understand my struggles.  I'm not sure how long I've been suffering, undiagnosed, blaming everything on TMJ or sinus problems.  I was really starting to believe that everything was in my head (psychological).  I'm always in pain, and it interferes with my life constantly.  There are days I just cry, not because I'm depressed but because I can't take the physical pain.  Stress and depression cause physical pain, but come on, this is a bit excessive.  No medicine I've ever tried has tackled this headaches, so I'm excited to try to the Imitrex.  (I know it doesn't work for everyone).  My doc explained that it's not a pain killer, so it's not going to work for "regular" headaches.  People who are just looking for painkillers or stronger drugs won't get anything from Imitrex, which is comforting for me.  My doctor is amazing, but I wonder sometimes if he thinks I'm just looking for drugs or for attention.  I trust him though, because he always acknowledges my pain as being real, even if he felt it was related to stress.  He truly wants to help me manage it.  Well, we'll see what happens, especially once I see the eye doc.  Again, thanks for all of your help, advice, and just reading my post.  I'm so glad I found this site!!
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Re: new to the group, saying hello
« Reply #10 on: Dec 23rd, 2007, 6:33pm »
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Sue,
You're right about the imitrex.  Its not a pain killer at all.  Triptans are vasoconstrictors, meaning they cause the blood vessels to close up a bit, which is the opposite of the vasodilation that causes tv headache.  Triptans are pretty selective for the head, too.  If you're not having a vascular headache, then they won't do much.
 
When I first took one, my head felt like it was very hot for a couple of hours, and my neck muscles became tight and sore.  These effects went away by my third dose.  Either way, I didn't care because I had 8 pf hours for the first time in a year!
 
I think any of us who have gone undiagnosed can relate to your self-doubt, wondering how much of the pain is psychological.  I would just tell doctors, "I don't mind at all if it turns out to be psychiatric, as long as you're going to do the work to see me through to a diagnosis and treatment that works."  However, spend enough time reading around on this site, and you'll learn what attitude you'll need to take with those people who won't take it seriously, which will depend on your personality and situation.
 
- Chris
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Re: new to the group, saying hello
« Reply #11 on: Dec 27th, 2007, 1:11pm »
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on Dec 23rd, 2007, 6:33pm, Chappy wrote:
Triptans are pretty selective for the head, too.  If you're not having a vascular headache, then they won't do much.

Not entirely true. Any doc who knows how triptans work will NOT prescribe it for folks with coronary artery disease as it can precipitate serious heart problems like heart attack.
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