For 8 long years, I've kept a secret from everyone:  my friends, my family, co-workers, classmates...  I didn't know what was wrong with me.  I thought I was insane.  It was like Dr. Jekyll and Mr. Hyde.

I am 29 years old.  I've had depression for...well, forever, pretty much.  With this depression comes the normal:  lack of sleep, trouble getting out of the house and facing the world, eating for comfort, headaches, moodiness...  I also have S.A.D.  This is no problem.  I fight my depression and learn to keep myself busy and not throw a pity party.  Life goes on.  But every Sept.-Dec., I go through something a bit different.  I had nicknamed them my "headaches of insanity."  I did not know until a few days ago that they are called cluster headaches. 

Like clockwork, I would celebrate my birthday at the end of August and then start living in fear when September approached.  Fear that I'll lose my mind again.  I'm afraid to sleep.  I set my alarm to go off every 30 minutes so I can wake up.  This helps stop the headaches from coming.  But I'm so exhausted.  I'm a zombie during the day unless I stay home and sleep.  I forgot to set my alarm the other night.  Two hours after I fell asleep, I woke up in terror.  It was here!  No time to act.  No time to prepare for it.  I half stumbled/half crawled to the room with the most floor space, dragging a thick pillow with me.  I rolled on the floor and rocked myself back and forth.  I was a whimpering, begging baby.  I begged God to make it stop.  To take the pain away.  I told him that I'd do anything.  Anything to feel normal again.  My eye felt like it was damaged.  It was leaking, and the side of my face was soaked.  I crawled to the bathroom and hoisted myself up to look in the mirror so I could make sure my eye was still okay.  Surely it couldn't have survived the pain.  But it was there.  My eyelid was sagging and I looked like something from a horror movie.  But all parts were intact.  For over an hour, I rolled, rocked, screamed into my pillow, and banged my head off the floor or wall, begging someone -- anyone -- to make it stop.  Dear God, please don't let my little boy see his mommy like this. 

I never knew why I was forced to endure this agony for several months each year.  One year, I even had these headaches during the spring!!  I never thought to research them.  That would have been the logical thing to do, right?  I deal with tension headaches every day.  I just assumed this was somehow related to my depression.  What if I told my doctor?  Would he believe me?  Would my family think I was exaggerating?  Would my ex-husband find out and proove that I'm an "unfit" mother and take my son from me?  What if I really was crazy?  I felt crazy when I had these headaches.  I was too scared to tell anyone what was going on.  But now I am still getting them, and it's the end of January.  It's making my depression worse.  Bad enough that I'm not functioning as well as I should be.  I miss too much school.  If my attendance doesn't improve, I will be kicked out. 

I couldn't take it any more.  I did a search for really bad headaches, and cluster headaches came up.  I started reading the symptoms and was shocked.  THIS is what I go through.  THIS is what's wrong with me.  I'm NOT crazy after all!  I'm not unstable and hopefully not dangerous.  It was such a relief to see that I'm not alone and that there are other people who were going through this nightmare. 

To date, I am waiting for my insurance card to arrive in the mail, and then I'm going to see a doctor.  I'm scared.  Why am I still having these in January?  I'm scared to sleep.  I avoid my bed.  There was a time when my bed was a place of comfort, but now it's uninviting.  It's a place for me to throw my clothes.  I'm so tired.  Some days I feel like I'm just going to finally break down.  I have to hide the horrible black circles under my eyes with thick white make-up that I cover with foundation.  Still, I look tired.  Will anyone notice the bruise that I got on my temple from beating myself with a Comcast remote (Comcast had to replace the broken remote) to make the pain stop?  I hide that too, and no one says anything. 

Thank God for this site.  You understand.  You know what I'm going through.  My insurance card can't come fast enough.  I need help.

~Becky

Welcome. Sorry you had to find us, but glad you did.

First off, if your insurance benefit started Jan. 1, you shouldn't have to wait for the card to arrive. Just tell the doc's office you're waiting for it to arrive.

Second, be careful of self-diagnosis. Many headache types can mimic each other. Find a headache specialist. Many neurologists don't even know one headache type from another.

Lastly, read all you can on this site. Pay extra close attention to the oxygen information. It is a miracle abortive for the vast majority of us.

One other thing - check out clusterbusters.com. It's not something that is widely accepted in the medical world, but when followed closely is effective for 75-80% of us.

You are not alone anymore.

Welcome Becky!

Glad you found us....hate you had to come looking. It sounds like you are on the right track......see a doc.....get a firm diagnosis....and read everything you can to learn how to fight. I recommend you check out the O2 link on the left hand side of your screen.....if your doc says "cluster headaches" make sure the next words out of his mouth are "here is a script for O2".

Thank you so much!  I'm reading through all the info I can on this site.  I'm so desperate for these to stop. 

Until you get a diagnosis and treatment plan, try slamming down an energy drink that contains lots of caffeine and taurine. Stuff like Monster, NOS, Red Bull, Venom. Slam it fast at the first hint of an attack. No prescription needed.

Also, if you don't get a prescription for O2, you can set up your own rig through a welding supply shop. Get a regulator on e-Bay and a non-rebreather mask. 25 liters per minute. Hyperventilate until it's gone. Usually 5-10 min.

Ooooh Becky... your headaches put my maybe-CH to shame!!! I have nothing to tell you, I am new here too, but I'm glad you have at least started to get answers. I hope you get some relief really, really soon........

Mel

PS I have an ex-husband too. So I know what they are like. I'm also in "Maybe MS" limbo right now, which he knows about. He seems fine now, but I'm very wary of what will happen down the track. Lots of hugs to you!!!

Melby29 wrote on Jan 22^nd, 2011 at 10:25pm:

Ooooh Becky... your headaches put my maybe-CH to shame!!! I have nothing to tell you, I am new here too, but I'm glad you have at least started to get answers. I hope you get some relief really, really soon........ Mel

Thank you, Mel.  I haven't told anyone yet what I'm going through because I want my doctor to verify that it's cluster headaches.  I used to think I had a tumor or something, but I've had so many CAT scans over the years that showed nothing.  So now, I'm just waiting.  I hate waiting.

Brew wrote on Jan 22^nd, 2011 at 10:24pm:

Until you get a diagnosis and treatment plan, try slamming down an energy drink that contains lots of caffeine and taurine. Stuff like Monster, NOS, Red Bull, Venom. Slam it fast at the first hint of an attack. No prescription needed. Also, if you don't get a prescription for O2, you can set up your own rig through a welding supply shop. Get a regulator on e-Bay and a non-rebreather mask. 25 liters per minute. Hyperventilate until it's gone. Usually 5-10 min.

My son actually has this machine that he used to use when he had asthma attacks and was too little to understand how to use an inhaler.  Do you think this machine will work the same way?  I'm new to this (at least to the getting help part) and know nothing about it.

That's probably a nebulizer. Won't help you in the least. You need to hyperventilate with 100% oxygen to kill these attacks.

Brew wrote on Jan 22^nd, 2011 at 10:32pm:

That's probably a nebulizer. Won't help you in the least. You need to hyperventilate with 100% oxygen to kill these attacks.

Okay.  Thank you.  This explains why getting myself "all worked up" seems to help it feel better or go away faster.

Welcome Becky, yeah, we get it. :'(

Get a referral to a headache specialist neurologist, that's your best bet at an accurate diagnosis, and more importantly, an effective treatment regimen. I've battled them for 33 years and am here to tell you they CAN be managed. This is my system, there are a hundred variations others use.

A prevent med. Like you I'm episodic, headaches for a few months remissions of a few months up to a few years. A prevent med is taked daily, while on cycle, to reduce the frequency and intensity of your attacks. Verapamil is a common first line prevent, but taken at doses much higher then most docs are used to. Some go as high as 960 mg a day. I use lithium at 1200 mg a day, blocks 60-70% of my hits.

A transitional therapy. Prednisone will offer a complete break for many CH'ers, but if taken for long periods of time, is harsh on your body. So for CH it's used as a short term med while your prevent kicks in. I go on a 14 day prednisone taper when my cycle starts, while I'm starting my lithium. By the time the pred is down to zero, the lithium has kicked in.

Abortive treatments, the headache starts, now what. Breathing pure oxygen will abort an attack for me in 6-8 minutes. Many are experiencing similar results. When you get to your neuro, INSIST  on oxygen being prescribed. Imitrex injectables work as fast but they're expensive, and don't work any faster then the oxygen for me.

Energy drinks, as others have mentioned, are great abortives for many. CHUG them at the start of an attack, as quickly as you can.

Since you're getting hit at night, go to your local health food or vitamin store and get some melatonin, an OTC sleep aid. Start with 9 mg about 30 minutes before bedtime. You will have to experiment with doseage, give it a few days to work. Many can avoid the wake up terrors using melatonin.

Let's you you to a doc, soon, and open up a whole new world of treatment to you!!!

joe

Hi Becky!!!!   Just wanted to welcome you.   

Jeannie

Becky, now that you've arrived here things are looking up!

You've gotten such good advice and handy tips from the good members already - that info is golden, and is the sort that has turned things around for many a CH'er.

I'll just re-emphasize the bits about the O2, clusterbusters.com, and a headache specialist. Be very wary of any doctor who isn't a headache specialist.

Thank you, everyone.  Thank you so much.  I'm so overwhelmed.  I'm worried about having to deal with this for the rest of my life.  I'm worried that my son will get them some day.  I'm worried about not having the money to get the help and medicine.  Until I found out what this was, I've been living of fear of someone finding out that I go through this.  My insurance is not active until Feb. 2.  So until then, I wait...and live in fear as the night approaches.

My sense of humor has always helped me deal with things such as my depression.  I can always find something funny about the stupid things I deal with that are depression related.  But I can't find a single thing funny about this.  Not one single thing.

No, it's not funny. But it's manageable. So stop it. A life driven by fear is not lived, it is merely endured. I can tell you first hand that most of the people here have tamed this beast and live some of the fullest lives I have ever witnessed.

You don't have Multiple Sclerosis. You don't have Cerebral Palsy. You don't have cancer. You have a neurological condition that hurts - a lot. But there are a hundred different things you can do to control or eliminate the pain. I'd say that's pretty fortunate.

Chin up. You have now taken back control of your life. Guess who wins? You do.

Now keep reading and learning. I, for one, am very happy for you.

Listen to Brew.....

I was in the same place you are, Becky.   Keep reading and learning.... and leaning on us.... It WILL get better.

hugs,

Jeannie (who got a swift kick from Brew too) ;)

Becky - Did you buy some melatonin today?

Brew:  I have absolutely no money until Friday.  I'm a single parent/full time student on an incredibly tight budget.  It's why I'm so worried about being able to afford treatment.  I bought some Red Bull.

Jeannie:  Thank you!!  I feel better knowing this site is here. :)  I told my mom everything today.  She's in shock.  We're trying to get a hold of my father (he's never been in my life) to find out if there's any history of this on his side of the family.  His sister committed suicide, and I never knew why.  I never knew anyone one his side of the family, so anything is possible.

Your choice. A small bottle of melatonin will cost about the same as two 4-packs of Red Bull. I'd borrow it if I were you.

It may take a few days for it to become effective, so keep taking it. I'd start at 9mg half an hour before bed. You may need more than that, but you may not figure that out for a few days.

Hey Becky,

I'm so glad that you found this place!!  Reading your initial post reminded me so much of my own story - 10 yrs being told they were tension headache - and feeling like I was going insane.

You have been given some great advice - I just wanted to jump in and say hi.  I totally get where you're at with the finance thing (single mum, student myself).  Please ask your mum for a lend if that is possible.  Melatonin has helped so many people - that fear of going to bed is a killer!!

I do hope that when you get to see a headache specialist you will demand oxygen... A real life saver for so many of us here.

Anyway I'm keeping you in my thoughts and wishing you all the very best.  As I say your post - in the bathroom in the middle of the night wondering if your going insane.. - took me right back there.  Again, really glad you found us - this place changes lives  :)

Kate

Thank you, Kate!  I seriously thought I was crazy and having some kind of fit.  Ha ha.  I put up with it for 8 years!  I have no idea why I didn't bother to research it, other than I was scared.  I could have gotten help long ago.  Oh, well.  Better late than ever.  This site has saved my sanity!  I've made some nice friends on here.

Welcome Becky,

I have little to add to the good wishes and advice you've already been given, except to respond to this one thing:


SimplyBecky wrote on Jan 23^rd, 2011 at 10:26pm:

I'm worried that my son will get them some day.

From everything I've seen here, and everything I've seen in the literature, all I can say is--stop worrying.

There IS a genetic proclivity for cluster headaches within some families, but CH seems to be weakly inherited.  We can point to a number of parent/child clusterheads here, and even some examples of multi-generational inheritance, but the majority of clusterheads (at least that I've heard tell of) seem to be singletons--no known ancestors or descendants with CH. 

So relax--although it's possible that you could pass a tendency for CH on to your son, the chances are very high that you will not.  And even if you do, think how fortunate he would be to have someone to help him who would know exactly what he has, and exactly how to deal with it.   :)

All the best,

George

Thank you, George.  I have another thread I'd posted not too long ago asking if these things affected one race more than the other.  My son is half Filipino.  Most people assured me that he wasn't likely to go through this nightmare just because I am, so I definitely feel more hopeful.  But I have to admit when he gets older, I'll always be watching for signs.  I'm a mother. :)  What's good is that he's never complained about having a headache.  He's 6 years old.  I've been having problems with headaches since I was about 4.  Not CH's but just tension headaches.  So hopefully he'll inherit his dad's stomach problems if anything.  Ha ha. :)