My name is Linda, I'm 46, I'm terrified and mostly freaking out.

At about 1:15 this afternoon, at work, I had the worst sudden and severe headache I've ever had. Stabbing pain behind my eye. It terrified me. I came very close to having the receptionist call 911, thinking I was having a stroke or something. Instead, I kept an icepack on my eyes and forehead, wiped the dripping tears and nose, took prescription Vicodin, prescription Motrin, and aspirin. And prayed like crazy for the pain to stop. After about an hour, it did. I was left thankful but drained, feeling numb, and unable to focus on my job. Then I Googled.

Google can be very scary, but also a very good thing. I've never heard of 'cluster headaches' before today. I Googled "sudden severe headaches". I read the symptoms. I went to the bathroom and looked in the mirror. Sure enough - sagging eyelid and uneven pupils (along with wiping my dripping nose and eye for the past hour or so). I freaked out and verified the sagging eyelid and uneven pupils with not one, but four coworkers...I needed witnesses to this scary thing that was happening.

Then I sent an email to my doctor. He wrote back and said to go to the ER for diagnosis. Here's the thing...I'm a new employee, and my medical insurance doesn't kick in until January 1st, three days from now. So, I didn't go to the ER. Instead, I went to my scheduled phyisical therapy appointment after work (I've been going several times a week due to a car accident November 17th). Dr. Babb confirmed that, yep, congratulations, you have a 'classic cluster headache'. He saw my uneven pupils, my lethargy after the 'attack', and obvious lingering pain and fear.

I'm very scared. I don't WANT to be a 'Clusterhead'. I'm scared that I'm not strong enough to face years of CH. How did ya'll start? Did you freak out? How do you cope? I'm sooo scared that I can't handle it!!!

I stumbled upon this CH support group site. I'm very GLAD that such a site exists. At the same time, I'm TERRIFIED that such a site NEEDS to exist...I'm sure you 'Clusterheads' know what I'm trying to say.

Thanks for 'listening'.

Linda

As a supporter not a sufferer I'll leave the questions for the pros who I am sure will be along very soon to help you. I just felt the need reply so you didn't feel no one cared, or  leave you alone for too long. HUGS!!!!!!

There is tons of info not only on these boards, but in the links to the left as well. You are stronger then you think. I am amazed by the strength of not only the heart of the people on this board, but also character. You'll find what you need here I'm sure.

Minxy [smiley=hug.gif]

      One headache and you have clusterheadaches?

          Kinder gentler Potter

Dear "Kinder Gentler Potter",

Nope, not 'just one headache' - I've had my share of 'headaches'. The clincher is the uneven pupils, mostly (which were observed by a doctor). Please don't be skeptical and cynical....I'm terrified.


Thank you.

Potter is a man of few words, Linda, but yes, it takes a "cluster" of these headaches over a period of time to be classic cluster headaches.

There are many conditions that can mimic CH, so it is bet to have a good neuro check you out, and also to get an MRI to rule out anything more sinister.  

Keep track of how often each attack occures, and how long it lasts.  A good record will help with the doc to dx you correctly.

Keep us posted as to how things arecoming along ok?

One swallow doesn't make for spring and, thank goodness, one headache doesn't make for this dread condition. It got its name because it's represents a cluster of individual headaches over a period of time.

With luck you just scored a monster headache out of nowhere for no obvious reason but certainly discuss it with your doctor at the first opportunity. Whether it's clusters or not, relax in the knowlege that we'll help you every inch of the way.

Ya, what they said. Get to the neurologist and dont freak over one headache. Proper diagnosis is critical.  If you have CH then deal with it. Pray you dont. Here's a hug just in case [smiley=hug.gif] [smiley=hug.gif]
all the best
the bb

Thanks, ya'll. Like I said, I've had my share of headaches. I was hit by a car three times. When I was 4, I landed two houses away...on my forehead (and have the scar to prove it). Again, when I was 10, I was hit by a car with minor injuries. Again, when I was 17 and bounced like a rubber ball off the hood of a car - hit and run. I also shut my head in the car door... not once, but twice - receiving double concussions. NEVER, in all of that, did I have 'uneven pupils'. So...I freaked out today.

Too much TV - uneven pupils means brain damage, right?

I pray that at 1:15 tomorrow afternoon, I don't do a "Groundhog Day". Please...I HATED that annoying movie!!!

Goodnight - and sweet, painfree dreams.

Linda

It's very, very important to rule out other, potentially dangerous conditions.

I’m not a doctor, but I can certainly understand why your Doc wanted you to go to ER. Think about it, 46 years old, rapid onset of unexplained extreme head pain accompanied by uneven pupil dilation, followed by lethargy………….

Follow up on this as soon as possible to be darn sure that it isn’t something else.

Best,
Marc

Linda, what the others are talking about with "one headache" is not your history of other types of headaches, they are referring to this type and time.  You said that you had one headache, yesterday.  That is what they are talking about.  You don't have just ONE cluster headache.

Now, none of us are saying that you MIGHT be starting them, it is just not enough to classify as clusters if you only had one of these excruciating headaches.

Set up an appointment with a neurologist (preferably one that is a headache specialist) as soon as you can.  Most likely it will be after your insurance starts.  You need to get an MRI and CAT scan to make sure something else, that can mimic a cluster, is or is not happening.

I wish you luck, in your journey, and keep us informed, as we DO care!

Chuck

Hi Linda,

You have been given some good advice.  It is a good idea to have yourself checked out by a doctor.  We all had to be certain that what we were experiencing was not something more serious than CH.  Sometimes, one may wish that it would, but CH will not kill you.  Not to scare you, but other conditions might.   It truly is imperative that you be seen by a professional.  

The term "Cluster Headache" gets the name because the headaches come in clusters.  One can go for months or even years without any pain and then the headaches start everyday, often several times a day.  Sometimes it is at the same time and sometimes it can vary.  It took a while for mine to follow a clear pattern.  I however, ALWAYS had them in clusters.

I do understand your fear.  I hope that this was a one time thing.  If you are still feeling the after effects of yesterday, I would encourage to seek medical attention to rule out any dangerous conditions.  

Please keep us informed..... as said before... we do care and will be here to offer support and any advice that we can.

Jeannie

And if they rule out some other condition and it turns out you do have CH, then, yes, it's time to learn to deal with chronic pain.

Luckily, this place is a wonderful sanctuary- you'll find a ton of emotional support here.  And I recommend, if your insurance covers it, talking to a therapist who deals with chronic pain, because there's a host of issues that come along with it.

One big one is guilt; because a cycle can last for months, you may feel guilty that your loved ones have to help you out and see you suffering.  By the way, any supporters in your life also have a home here, too- there's a place for supporters to get support!

It's tough, but you can take it.  We'll help you.  And remember- CH won't actually kill you.  It's the other stuff that MIMICS it that can!  ;)

And something else you must always keep in the forefront of your mind.  Not ALL doctors are Headache Specialists, and not all neuros are headache specialists.

One of the downsides of "Cluster Headaches" having a little more familiarity in the medical community, is that in many circles it's become a DX set forth from a doctor who has possibly read a quick blurg somewhere.

Many of the meds that we take could be seriously harmful if taken for another headache type or other condition totally.  

As Chuck said, a history of other headaches is not a history of Cluster Headaches.  

No matter if you have another one or not.  PLEASE get checked out.  And keep us posted.

Yes...this is the best place to learn how to cope and about the latest in CH progress.  Watch out for the snake oil vendors and the trolls however.  There are people out there who have nothing better to do than to try to profit or get their jollies off our pain.

Hey,

I survived today with an annoying, not obnoxious headache (but I medicated myself just in case this morning). As 1:15 came and went (the time of my scary headache yesterday), I felt relieved to have past it.

I still have a droopy eye lid and one dripping red eye. Still have uneven pupils, though not as extreme. Feeling 'sick', bad, almost flu-like today. Came home and felt worse and worse, then cried from the pain. Took more meds and felt better, mostly.

In 24 hours and 19 minutes, I have health insurance. That's my goal. I keep praying to God and the sky that it's okay to wait.

Thanks for all of your responses and for caring about me, a stranger. I appreciate it.

I'll post back.

Goodnight and sweet, painfree dreams to you all.

Happy New Year to us all.

Linda

BigTexasMom wrote on Dec 31^st, 2008 at 12:41am:

Thanks for all of your responses and for caring about me, a stranger.

Not at all, Linda. You got a headache, headaches hurt, and you're seeking information.

You're doing everything right, darlin', and we're on your side.

Welcome Linda!

I sure hope you don't have clusters because non of us would wish this condition upon our worst enemy (well most of us, lol).  Your symptoms sound like a cluster other than the fact that you only got one of these headaches.  As most have said, seek a good nuero that specializes in headaches.  Get the all of the major tests done to rule out anything else.  I feel blessed because I'm an episodic sufferer and my headache cycles last 3-7 weeks, 2-5 clusters a day ranging from 20 minutes to 2 hours.  I get two cycles a year.  Obviously this is where the "cluster" name comes from.  Some get it a lot worse than me here, but since I have found this site, it has made my world a lot easier.  The support, advice, information, etc...  

Lets hope you are alright and you don't have clusters.

If for some reason you get another one of these headaches within the next 24 hours before your insurance kicks in, try chugging a red bull or any energy drink with caffeine and at least 1000mg taurine in at the first sign of pain or as we call a "shadow" headache.  This works for a bunch of us to reduce the intensity.  

Best of luck and have a great New Year!

Kindest Regards,
Chad

Linda,  you may want to try the Red Bull now to take care of the "sick" feeling you are having.   If it is CH, what you are feeling may be a shadow.   I continue to have the droopy eye, ect. in between hits.  

PF wishes,

Jeannie

BigTexasMom wrote on Dec 29^th, 2008 at 10:10pm:

I'm very scared. I don't WANT to be a 'Clusterhead'. I'm scared that I'm not strong enough to face years of CH. Linda

Nobody wants to be a clusterhead.  I'm a supporter of 17+ years and have been married for 26.  My husband was diagnosed when I was pregnant with my first child.  I was sure he had a brain tumor and my son would never know his father . . . .

17+ years later my son knows his father and clusterheads VERY well and knows all about the compassion and empathy that supporting a clusterhead brings to ones life.  He's met extraordinary people who deal with extraordinary pain multiple times every day.  He knows intimately what pain does to people and knows most ways to abort an attack with a clusterhead.

While no one wishes this pain on anyone else, there is usually no choice in the matter - like having blue eyes or short legs.  One deals with it as one can, and turns to places like this when the need becomes great.  There's always someone here willing and able to provide advice or simply listen to a rant - whether it's a sufferer or a supporter.