So what's the dumbest thing someone's said to you when you're in cluster mode?

Stop eating cheese? Go to bed earlier? Just pull the curtains and have a wee lie down? Stop drinking those Red Bulls and you'll be alright?

And so it goes on. Most times I don't even tell people I've got CH anymore, cos they just don't get it. It's easier just to say I've got a migraine to stop the stupid questions.

Even some of the people I love think I'm inventing it, which makes me so angry. They've never run headlong to the fridge at 3am in the morning to find an egg to stick into your eye socket.

Is the word "headache" the killer? When you mention that do they think you're a fake?

Anyway, what's the dopiest thing ever said to you when you mention CH?

This one came from a neuro: "take an aspirin and drink a coke".
I dont see him anymore.
Horse doctor >:(
thebb

"Go back to your hotel, lay down, turn the lights off, take the phone off of the hook, and just relax! Hopefully that'll nip this in the bud!"

...That's what I was told after being discharged from an ER. My family repeated it when I had my next shadow and we all laughed at the absurdity of it. XD

This has the makings of a good thread!

Mind you, there's some understanding out there. One time when I was in cluster in the office I sent a friend out to buy me a facecloth.

He came back with a facecloth and - without asking - a bag of frozen peas. They were half-boiled with eye-socket heat by the time I left the office that night...which saved on cooking time when I got home...

Ah, this thread brings to mind two different responses, at widely different times.

The first was when I first started having clusters, 29 years ago.  I had been admitted to a teaching hospital, and they observed many hits during the two weeks they had me there.  The head neurologist came in and told me: "No one can have the pain you are "pretending" to have, without something showing up on the tests."  (I was transfered to the psychiatric ward, where I was kept for three months, till I was "cured" {the cycle ended})

The next dumb remark, was many years later, after I had been properly diagnosed, told to me by my darling Mother!  (As a former hair stylist) She told me that if I cut my hair (it was long, and in a pony tail at the time) AND if my wife and I stopped going to those nudist places, my headaches would stop!

So there is the cure!  Keep your clothes on, and your hair short!

Chuck

Just today and old friend called to check on me after we talked last week  about me being in cycle with CH. I told him I haven't been getting much sleep lately and avoid sedating myself because I need to respond quickly to a wakeup CH.

He said, "You know what you need is two big shots of Jack.". No, I can't even smell alcohol I said. "Oh then you just need a big fat joint." Kind of makes you want to snap someones big fat joint but bite my lip and thanks for the call. Gotta love em.

Brother said you have CH because you took LSD. Now it stops it!!!!!

""yeah, I get headaches too""

   EVERYONE has a cure the these things. Now , they are only trying to help, so you thank them for their advise and move on.

My mother on the other hand, read in a magazine somewhere that if you eat raisins everyday that you will not get headaches. I thanked her for  her advice and moved on. She however, wouldn't let it go. Every time I saw her, she insisted I need to try it. Even after I explained to her that  all 5 of my doctors were highly educated and well respected she just kept on...

Moms you gotta love em... it's the law

Jim 

Moms you gotta love em... it's the law

Jim  

No one loves you as much...or means as well as mommies!!! ;D

"You just have tooo much stress in your life, stop worrying about stuff and give up coffee!"

Guiseppi

I had a Dr. tell me it was only allergies and I should eat bran muffins with local honey twice a day. :D

It's all in your head.

" If you stop worrying about it maybe you won't get one!"  This from my well meaning husband.  He tries!

Jeannie

"She's imagining them" by my aunt. I'd like to hear if she said the very same thing to her colleague, who also has ch! ;D
(Hmmm, I have her email addy now, I could write and ask.  ;))

My mother's "cure": have a donut.
A classic! ;D And believe me, I sure tried that one! Too bad, it doesn't work (at least, not for me...)

Jim,  you can tell your mother that another clusterhead eats a lot of raisins - and still gets ch! So it doesn't work for me; I don't know about the rest of us. But I do love those raisins... It would be great to tell a neuro that raisins keep ch away instead of the meds they wanted me to take! ;D

Sanna

It's only a freakiing headache - what's the big deal?

There's no way your mom can hurt THAT bad - she just wants you to feel sorry for her! (This from an RN daughter-in-law from Hell who works for a pain management neuro and SHOULD know something - I'm now sitting on my hands!!!!)

Mom, WHY can't they give you something? (This from idiot son who listens to daughter-in-law from hell!)

Breathe Granny Breathe (this from darling grandson who brings Granny O2 tank and stands by until she needs a hug). This one is worth waiting for....

Hugs BD

From my father just the other day:

"Listen to Mantovani"

Mantovani huh?   I wonder if Gershwin would work as well.


  Stupidest thing?  

Just relax.

I had a HA like that once.

I can cure you with Chiropractic.

Linda_Howell wrote on Oct 8^th, 2008 at 5:52pm:

I can cure you with Chiropractic.

I've heard that one before.

Theres another thread with great responses in the jokes section too. There are some real classics there...

My mom told me to take a St Joesph's baby aspirin ( the orange chewable kind).  She said she takes those everytime she has a headache and it goes away....

Apparently my mom still has some bottles of this from who knows how long ago...  I hate to break it to her that I haven't seem that at Walgreens in  the past  5-10 years.  

"Just don't focus on it and try to do something productive.  It just gets worse when you focus on it."   This from my well-meaning husband.

"Come back to bed and just relax." Again, he means well.

"Try to avoid things that trigger the headaches" - From the ER doc who seems to think I am an idiot who goes around guzzling red wine, chain smoking and eating pounds of chocolate- none of which I do because I have enough attacks without adding fuel to the fire.

diagnosed by neuro after a 2 minute office visit."your depressed"
well no $%^& you dumb ^&%$%$&^. that was 5 years ago i have real neuro now.

My son came up, kissed me on the head and said "All better?"

It wasn't dopey at all, but I thought Id share anyway.  For a 4 year old (at the time) it was hard to explain to him what daddy was going through but it makes me smile whenever I remember it.

Kushka wrote on Oct 8^th, 2008 at 8:20pm:

From the ER doc who seems to think I am an idiot who goes around guzzling red wine, chain smoking and eating pounds of chocolate- none of which I do because I have enough attacks without adding fuel to the fire.

Not sure, but you may have just alienated about 85-90% of the people here with your first post.

I hope not. I, for one, am not going to take it personally.

FramCire wrote on Oct 8^th, 2008 at 8:50pm:

My son came up, kissed me on the head and said "All better?"

That's so sweet! :)
Thank you for sharing that. I love that story.

Sanna

I'm so guilty of complaining of a bad headache to Phil.  I know my headache is nothing compared to what he goes through.

Hugs,

Jen

hurts_so_good wrote on Oct 7^th, 2008 at 10:38pm:

So what's the dumbest thing someone's said to you when you're in cluster mode? Stop eating cheese? Go to bed earlier? Just pull the curtains and have a wee lie down? Stop drinking those Red Bulls and you'll be alright? And so it goes on. Most times I don't even tell people I've got CH anymore, cos they just don't get it. It's easier just to say I've got a migraine to stop the stupid questions. Even some of the people I love think I'm inventing it, which makes me so angry. They've never run headlong to the fridge at 3am in the morning to find an egg to stick into your eye socket. Is the word "headache" the killer? When you mention that do they think you're a fake? Anyway, what's the dopiest thing ever said to you when you mention CH?

Wow. This is so happening to us right now! We don't say headaches or migraines. We're like "He has a brain disease." People shut up. It's just easier. We used to say "Wicked headaches" but people just think he is a sissy that can't handle a migraine. Whatever...the dopiest thing? "Keep taking Advil."

RIGHT...with the light dusting of hellfire on his brain that no amount of silly little "moderate pain reliever" will EVER be able to help, I'll be sure to follow up on that.

My brother asked maybe it wasn't just psychological.  I couldn't talk to him for quite a while without gritting my teeth. A friend has said 'yeah I get migraines too'.  The usual about laying in a dark room, quiet etc.  The sweetest is when ever I tell my 6 yr old son that 'mummy has a headache, he asks which side and gently rubs it, kisses it then holds my hand as I take my 02.

This one from a nuro that not only do I not see I asked for him to be banned from touching my file.....

The reason you have headaches is because you are derpessed! I asked him why when you gave me morphine did it not help his answer because you are depressed you dont know what you are talking about!!

thingy

The all-time stupidest thing ever said to me about ch was before I was diagnosed correctly:

I had called AGAIN to the Kaiser Permanente help line sobbing because the pain from "a sinus infection" was so bad I needed HELP!!!
The nurse who answered told me to "EAT JALAPENOS" to open my sinuses!!!

One of many.....from a neuro....

"Well, until you stop smoking and drinking coffee there is nothing I can do for you. You'll just have to keep beating your head on the door jam like you have been."

I thought Blake was going to burst into tears.....won't repeat what I told the a$$hole doctor.

Jackie

i was told to have a glass of whisky singel malt and a joint of hashis
befor i knew about ch i did try that
boy was i wrong  :'(

my mum god bless her told me to sleep it over
i love my mum but if could sleep i would sleep

Good stuff there.

As referred to above, I really hate "I'd one of those once."

Oh yeah, and if I thought I could get away with a single malt during a cluster cycle, I'd happily go for it.

I've brought this up before...

My pregnant ex-wife told me that I was psycho-somatic with the headaches and jealous of the attention she was getting because she was pregnant.

Ray

doctors response:  "your grinding your teeth while you sleep"

boss's response: " I get migraines too you just need to get atleast 8 hours of sleep"  

It takes me 16 hours in bed to get 8 hours of sleep so even if the only thing that I did was work 10 hours a day and went straight to bed I still wouldn't get 8 hours of sleep.  

just a couple of many.
on the sleep side of things,our local chemist said"try a glass of warm milk before bed"
and a occupational health doctor said"yeah ive dealt with cluster headaches before................how do you spell that???(sumatriptan)

Drink grape juice.

So, i did try it... figured couldnt make it worse.  It didn't help or hurt but I do love grape juice.

I also had someone say to me:  "Your kids are so loud, no wonder you get those headaches"

I said  :-X and walked away (I was having a shadow)

my two favorites:

Mom - "Just rock your head back and forth or take a hot shower."

Friend - "Try pinching the skin between your thumb and forefinger.  That helps."

And another classic

"Try acupuncture"
Yeah, when they can get the needle to go through the skull and mess around with the nerve cluster in the brain ... maybe that would work ;)

But yeah, friends and love ones mean well, they just don't understand.

Here at seminary (for those who don't know, I'm studying to be a Catholic Priest) I told a friend that I received the Sacrament of Anointing and he told me that headaches are really grounds for the Sacrament.  I wanted to reach over and slap him silly!

One "cure" that I think does work is "Pray more."  It won't necessarily eliminate them entirely, but I must admit that my prayer life is the only thing that gives me the strength to continue to carry this cross!

God Love you!
Joe

mom used to tell me to prey before i went to sleep, its good advice but it dont do much for cluster headaches, or " im not paying 60 bucks for this medicene to stop a little headache". that was after she found out the preying didnt work. Coach bill.

Except for you folks, I mostly don't talk to anyone about them anymore.   :-X  No point.  They don't get it.  

I don't necessarily think that's a bad thing.  It's just a thing.  So if I show up in the morning after a bad night looking like I've been dragged backwards through a culvert, I just let them think whatever they think.  I may look bad, but most people have sense enough to leave me alone when I've got the afterburn going on.  As far as I'm concerned, my personal appearance after a nasty hit is nature's way of saying "don't touch".

Dopiest response?  I've mentioned this before, but it was the optometrist who told me the headaches were caused by eye strain.  He gave me a contraption to perform "eye exercises" with.  The exercises consisted of crossing ones eyes to merge two images into a single stereoscopic picture.  I got pretty good at it.  To this day, I can watch a 3D movie without the special glasses.

Needless to say, it didn't help.

Best,

George  

Luckily, my GP diagnosed me. My neuro is cool. The stupid responses I'd get are... migraine, go lay down. And.. I get headaches too. I don't discuss them with anyone but my friends here. If I'm out, I grit my teeth, and keep my mouth shut. If people ask about my red eye, I tell them, it just does that. No point in discussing it.

So I was talking with someone today & they go "Any chance he might be possessed?" I said "Why,  yes, of course, that makes perfect sense." (and laughed uncontrollably when alone in the bathroom...)

I had to hunt this thread down to add this.

"Well, have you tried Vicodin for this?"
"Yes, I have. It did nothing."
"How many did you take? You probably just didn't take enough." From a DOCTOR.

Later on, my Mom and I realized, we really should have asked how much was enough. I doubt a full bottle of it would work. Then we BOTH started laughing going "How much is enough vidocin? 20? 30? 50?! LET'S CALL HIM AND ASK!"

  Here's a new one for me "we need to get your sleep under control" WTF how do you sleep when you get 2-5 ha's a night,  my wife even got mad at that one. :D

I just hate it when people tell me to take an aspirin... Probably because the beast is about to pay a visit and I'm not at my most patient.

Like others here, I don't say cluster headaches. I say I have a malfunctioning brain and when people ask about why I don't drink, I say I'm allergic to alcohol. It's just easier than saying headaches and people don't try to give you all kinds of BS cures that they've used to get rid of migraines etc.

I wish raisins and grape juice did get rid of them!! If we could get PB&J sandwiches on the list, I'd live on that diet forever!!!

Hello,

Love these threads they do make me laugh!!!

Before i started on 02
Boss at work " It is because you have 2 monitors" after taking the 2nd monitor away and being struck "it must be the lights in the office" After changing the lights and still being struck he finally listened to me that it was neither the monitor nor the lights but hey the office benefitted from blue daylight bulbs!!

All i can say is that he was trying to help as smoe people do but what would help is that they listen to the person!!!!

wrote on Nov 6^th, 2008 at 4:28am:

Here's a new one for me "we need to get your sleep under control" WTF how do you sleep when you get 2-5 ha's a night,  my wife even got mad at that one. :D

I also got mad when the jacka$$ was badgering Phil about how much caffine he drinks a day.  The neuro was saying come on tell me how much you really drink, tell me the truth, it's time to come clean.  He had no frickin' clue.

Jackie wrote on Oct 10^th, 2008 at 7:38am:

One of many.....from a neuro.... "Well, until you stop smoking and drinking coffee there is nothing I can do for you. You'll just have to keep beating your head on the door jam like you have been." I thought Blake was going to burst into tears.....won't repeat what I told the a$$hole doctor. Jackie

As I do agree that neuro is a jacka$$ especially the part about caffeine, I will admit when I quit smoking, my cluster cycle duration, # per day, and intensity has been reduced by a lot.  I will be smoke-free from cigarettes for 4 years come Feb.  Tobacco of any kind was a definite trigger for me.  Not sure if quitting had anything to do with it or maybe it's just a coincidence.

Finally, some mental relief from this stress.  Reading these posts made me laugh out loud - which I haven't done in eons.  It's nice to know that other people hear the same stupid ideas from people.  The times when I REALLY need to bit my tongue are when people say, "Oh, ha, I get those bad headaches too."  Ya - NO YOU DON'T!  I love the idea of calling it a brain disease - it may stop some of these well meaning suggestions/comments.

Assistant Manager at work : "If you don't want to come into work then don't, but please do not come in and put on those kind of theatrics again...."

Mind you that was only a couple of days after being diagnosed, and I probably shouldn't have been in.....

He's still a dumbass though...... :)

Quote:

we really should have asked how much was enough. I doubt a full bottle of it would work.

  Au Contraire....a full bottle would work like a charm.  You'd be dead!!!!!!   end of the headaches though.

Only today i saw a new neuro who's comments included:
"so your migranes"........ er NO
and
"do you think that its because you've moved and its a new environment" well i have moved 200 miles down the road but im not sure thats the route cause.
Bless my family, i still get, drink more, sleep more, eat less, eat this, dont  eat that, im sure everyone knows the classics. My response it to laugh, if only they knew. I love the brain disease one, i might try that, ive only ever told my very nearest and dearest but i think that might be quite entertaining, i think it dose it more justice that, "headache"
::)
L

Izzy wrote on Oct 9^th, 2008 at 5:04pm:

Wow. This is so happening to us right now! We don't say headaches or migraines. We're like "He has a brain disease." People shut up. It's just easier. We used to say "Wicked headaches" but people just think he is a sissy that can't handle a migraine. Whatever...the dopiest thing? "Keep taking Advil." RIGHT...with the light dusting of hellfire on his brain that no amount of silly little "moderate pain reliever" will EVER be able to help, I'll be sure to follow up on that.

Yes, the word "headache" is the killer!

We've resorted to the "he has a brain disease" response too.  Gary finally had enough of the "Oh I've had ONE of those!"

Although one of his old neuros did write him a prescription for a vacation to Hawaii.   [smiley=rolleyes.gif]

Laurie

wrote on Oct 7^th, 2008 at 10:45pm:

This one came from a neuro: "take an aspirin and drink a coke". I dont see him anymore. Horse doctor >:( thebb

maybe he said coke and really meant pepsi :D

"thats what you get for making all that money"

and more recently

" thats what you get for losing all that money"

It's not the dumbest thing anyone ever said to me, but it was a thread on these boards, years ago:

Topic was something about how do you cope, what do you do, where do you go, during a hit.  A response was, and I paraphrase,

I mentally go to the beach, where I sit in the hot sun wearing a string bikini, that I really can no longer fit in.  I just close my eyes and take in the heat.

That response received tons of replys, most of which were not very nice. The poster was called a troll.  The poster was called a Meegrainer, and the poster was so denigrated that he/she left the boards in humiiation.

I was that poster.  I posted that back in the summer of 1999 on these boards, prior to having a confirmed diagnosis.  I posted this during the first ever in my life Ch cycle.  I was uninformed, and very naive.  I asked stupid questions, and posted stupid posts.

With a firm diagnosis under my belt, I came back two years later  and two cycles later.  Now, I always give any newbie the benefit of the doubt no matter how uninformed or naive his post may be.

As to my responses now to people's comments,  I just say that I have a malformed hypothalmus that causes the constriction of the blood vessels in my brain.  The only things that can help alleviate the pain are vasoconstrictors, which dilate the blood vessels, etc, etc.

Once you hit the word hypothalmus, then go to vasoconstrictor, they quit listning.

Sandy

One er doc told me to go on a walk and breath in the good idaho air its 20% oxygen.  When I told him that o2 would help my headache.
p

You know I don't get comments of 'I've had one of those too'. But I think it's because we mention my other problems first, then clusters later on.

When you tell people all of the other crap you have first that IS life threatening, they don't make comments like that too often. They end up not wanting to say they might have anything remotely like what you have, because the thought freaks them out too bad.

Generally if I tell someone the pain is so bad that it makes me suicidal during the worst parts, they also don't want to think about it. Like I said, it's way too scary to think about something that painful.

I was a doing the Linda Blair at the nero’s office and the HA nurse clinician said "can I get you something"? I replied yes some O2 please and she said "we don’t have O2 here you will have to go down stairs to the ER if you need it that BAD"! Like I was complaining! I said it’s a dam hospital, and you don’t even have an O2 cart? It’s just how they treat us that really sucks…

Rolo. :(

Told to me by a "chiropractor"..."your headaches are caused by a past-life experience.  You were defending your home-during the Civil War, and were struck and killed by a blow to the right side of your face."
:o
And how did he know this? I asked.  
His angel-perched in the corner of his room-told him.  I saw no angel, and although I do believe in a spiritual plane not ordinarily visible to us, this was more the ramblings of a quack.

He charged me $50.

Gotta admit-I've gotten alot of milegae on this story though.
::)

So, my Mom just informed me that last week, when I was at the pharmacy and having a cluster headache, the pharmacists had no idea what was going on.

The next time she was in they were all asking her
"Was Mysti mad about something?"
"Why did she have that look on her face?"
"What was Mystina upset over?"

I nearly pissed myself laughing when I heard this... Seriously, one eye closed, pacing, and groaning = angry?! Mom was like "Uh no...What you were witnessing? Was her in a cluster. She was holding her head and groaning for a reason!"

"As to my responses now to people's comments,  I just say that I have a malformed hypothalmus that causes the constriction of the blood vessels in my brain.  The only things that can help alleviate the pain are vasoconstrictors, which dilate the blood vessels, etc, etc.
"

Just so you know, it's the other way around; your blodvessels dilates and causes pressure on your trigeminal nerve. Vasoconstrictors helps constrict the vessels back to normal again, taking the pressure off the trigeminal nerve.

just dont think about it,  use mind over matter. you can do it, your mind is a powerful tool.  uh......go fuck yourself, until you have to walk 1 foot in my shoes dont tell me how to "deal with the pain"....thats just me.
chris

Kind of makes you want to stomp on their toes until they cry for ya don't it Chris!

Rolo.. ;D

I had a boyfriend quoting from some book by that power of now guy tell me over and over that all pain is purely a manifestation of not living in the moment. The irritating thing was his moral superiority about it. I couldn't be honest about my day because he'd start quoting that stupid book.   :-/

I got so frustrated from his condescension that I came to this board to ask for advice. Someone told me to tell him the next time he had diarrhea he needed to stop it by being in the moment. That if he would only control his mind he could control his body. As a confirmed curry lover, that finally shut him up. It turned out he'd been up all night the night before with diarrhea!

;D

ninja mom wrote on Nov 24^th, 2008 at 2:11am:

Told to me by a "chiropractor"..."your headaches are caused by a past-life experience.  You were defending your home-during the Civil War, and were struck and killed by a blow to the right side of your face." :o And how did he know this? I asked.   His angel-perched in the corner of his room-told him.  I saw no angel, and although I do believe in a spiritual plane not ordinarily visible to us, this was more the ramblings of a quack. He charged me $50. Gotta admit-I've gotten alot of milegae on this story though. ::)

LOL!  OMG!  I am totally going to go all Phoebe (from Friends) on the next condescending response to clusters and tell them that my headaches are caused by my past life!  The stupified response will be worth it!

"it's just a headache", "You act like you've never had a headache before"...

The above comments were from family and friends when I first started with CH.  

"You smoke too much, you are taking on too much and stressed out, you party too much" you know, the long speech that ER docs give you while they are holding the needle filled with Imitrex, Demoral, etc.  This ER doc never even listened to my symptoms and said it was migraine and it's my fault I get them because of my life style.

BUt I must say, my friends, famiy, and coworkers are more understanding now.  

Laura

BWAHAHAHAHAAAAAA KATHERINE!!!11!!!1!!  Oh, boy howdy, I can't WAIT until my boyfriend gets diarrhea!!!!  ;D ;D ;D  Because yes, after being very supportive for so long, he went and said it- "Have you tried meditation?"   :o  I said, you try and meditate while I kick you in da nuts!!!

And my mom just won't get it....yesterday she gives me this epic speech about how I drink too much caffeine...I say, mom, they are PRESCRIBING ME CAFFEINE!!!!   :D

sell your motorcycles and quit wearing that helmet all the time.
quit riding 2 strokes
take a hot shower

Sleep on your back   ???????????????????

Just Plain Carl wrote on Oct 8^th, 2008 at 4:57am:

""yeah, I get headaches too""

LOL yes!  I had that response too.  And also "Wow those sound awful- well, if you feel them coming you can take a shot of something hard right?"  

DONT YOU THINK I WOULD HAVE TRIED THAT, GIVEN THE DESCRIPTION OF PAIN YOU JUST HEARD!?!?!

   I just tell them that its a distant cousin to Epilepsy, and I'm having a siezure. That gets them off my back and stops the stupid questions.
[smiley=smokin.gif]

I once had to see a locum GP instead of my own doc to ask for a repeat prescription for O2. He stated to me that
"there is no medical evidence that O2 can treat the pain you say you are in"
I ended up in such a state that I couldn't speak!  >:(My own GP was told the basics of what had happened and he sent a taxi to fetch me to him, he apologised and said that i was never to see another doctor again (what a SAINT) My O2 is now supplied without prescription direct from the gas supplier.
I don't know what happened to the locum doc... ::)

Guys, this is a thread to earmark.  Im laughing just rereading the posts this morning.  Great theraputic value!!

Izzy wrote on Oct 13^th, 2008 at 2:52am:

So I was talking with someone today & they go "Any chance he might be possessed?" I said "Why,  yes, of course, that makes perfect sense." (and laughed uncontrollably when alone in the bathroom...)

LOL.. I had something similar happen to me... I used to work in ministry and went into this "healing" prayer session at church and a woman who didn't know me told me that God told her that the reason I have headaches is because I allow the demon who causes them to stay in me. She then followed that up with a bunch of pseudo-spiritual babble taken out of context from the back of our senior pastor's most recent book. She didn't know that I had recently been on staff at his publishing company.  I told her she was wrong, she asked if my head hurt any more. Well, not at that minute it didn't but that's not the way it works!  She took it as proof that she was miss super-divine with a direct path to God.

When I later questioned that and the increasing amount of politics the church was involved in I was accused of losing my faith. I stopped going to that church.

Just Plain Carl wrote on Oct 8^th, 2008 at 4:57am:

""yeah, I get headaches too""

I have to reply to this response only to find out that the person who told me the same thing is indeed a clusterhead and has been diagnosed.  At first I was like yeah right (in my mind).  She is a co-worker and told me her symptoms and I was like, WOW, you do have CH.  This is the first time I have met a clusterhead in person and it's kind of cool (not that we get them) to be able to understand what another person is going through.  It's a small world.  I told her to get on this site ASAP.

Which is why you gotta try and get to a meet and greet. Imagine meeting 30 of us!!! It's a mind blower. Good job on spreading the word! ;)

Joe

1. "OH, It's just hormones."

2. "Oh, I get those all the time." (this one makes me most mad.)

3. "Take a multi-vitamin."

4. "Are you pregnant?"


Oh, how I love people that don't understand. ::)

Friend: "oh, that sounds like a tension headache!  I've had those."

Sister, "yeah, I hate my migraines."

A disturbing number of coworkers: "have you tried acupuncture?"

A disturbing number of people who I think are trying to be cute: "maybe it's a tumor."

The woman at the front desk of my doctors office on a Wednesday, after I explained I have cluster headaches, and was in cycle, and I was getting multiple severe hits a day and I need to see the doctor about starting some prescriptions for it: "Ok... let's see.  How about next Tuesday?"

While i wouldn't wish this on any one or anything, I really sometimes wish there were a way to give them a K8 for five seconds.

Really enjoyed reading this thread as we all go through the same things although unlike Posted by: Kim Dyer i have never been told it could be my hormones or am i pregnant but hey there is still time for other morons out there!!

PFD TO ALL

I've just been referred to a "Pain management specialist."  Here's the kicker, it's in July!

Ray

actually, I think I made the dopiest response years ago before I knew about ch and before I kept a log of symptoms and times, when I told the Dr "I have a migraine that lasts a month, changes all the time, and never goes away."  I was told to try aspirin.

My husband on occasion has said, "If you don't think about it so much, maybe it won't happen."

almost forgot, we had a temp clerical who was also a medical assistant, and when I asked her if she knew about cluster headaches she said, "You put them in a room by themselves for 10 minutes, then they are ok."  I just stared, and my buddy Jacki laughed her ass off. (yes, we told her later, that wasn't ch)

Charlotte

"If you don't think about it so much, maybe it won't happen."

I was so sure of this one I wouldn't come NEAR this board while off cycle! ;D

Joe

One of the first Dr's I saw for ch thought it was all in my head and I should try "de-stressing"  LOL  I asked him which side of the match book cover was his diploma written on and walked out.

-P.

Quote:

I was so sure of this one I wouldn't come NEAR this board while off cycle! Joe

That is , until I set your thinking process straight.   ;)

That is , until I set your thinking process straight

Well yes you did!! ;D

Joe

Not so much a response to me saying I have CH but...

Almost without fail, when I'm in the spare room where the M-tank is, my dad will walk by and see me in there with the mask on holding my head and the norm and asks one of two things "Headache?" or "Is it working?"

uh... Duh, anyone?

Kirk wrote on Dec 23^rd, 2008 at 9:01pm:

[b][i][font=Times New Roman][size=16]    I just tell them that its a distant cousin to Epilepsy, and I'm having a siezure. That gets them off my back and stops the stupid questions.

This is also my response now.  It is also how I finally got my husband to understand (he has epilepsy).  I was in the Drs' office when I first made the comparison and the Dr agreed it was like a siezure, only we get the pain........lucky us  :-/

I went to see my new gp the other day and explained i was being hit too many times a day for the imitrex and i need an rx for o2.....he explained to me that o2 in the home is reserved for only the really sick people....

Some of these are terrible!

The dopiest was the one that made me angriest.  My first doc hadn't heard of them, "cluster headaches huh?" Funny emphasis on cluster, "sounds like you've done a lot of research.  Ive never heard of them, what do you want me to do?"

I was fully expecting him to say that they sounded made up in his stupid little voice.

Oh well, c'est la vie.

LMAO on this stuff. I have been lucky, if you can call it that. I have never seen in 20 yrs a doc that was not understanding, most that did not know about them- looked into it and talked on the next visit.

BUT I HAVE HEARD MOST OF FAMILY,  BOSS AND FRIEND STUFF. Classic....   I use the Hypothalmus deal and it works great, and true :)

midwestbeth wrote on Feb 11^th, 2009 at 3:47pm:

Kirk wrote on Dec 23rd, 2008 at 9:01pm: [b][font=Times New Roman][size=16]    I just tell them that its a distant cousin to Epilepsy, and I'm having a siezure. That gets them off my back and stops the stupid questions. This is also my response now.  It is also how I finally got my husband to understand (he has epilepsy).  I was in the Drs' office when I first made the comparison and the Dr agreed it was like a siezure, only we get the pain........lucky us  :-/

Pretty much, that's how my Mom views it. I used to have seizures. When my cycle started, she thought I was having them again. We had it checked out, I'm not... but she says the look I get on my face before one, then how I look afterward is how I used to look during 'em. You also get the whole worn-out, drained feeling after.

BACK ON TOPIC!: I've had people, including a nurse, tell me that if I'd keep my hair out of my eyes, I wouldn't get headaches. WTF?

My bangs are usually down on both sides of my face if I'm wearing my hair like that...errr... WHY IS ONLY MY LEFT SIDE HURTING AND CLOSED UP THEN? D:

The nurse wound up reaching over, and tucking my hair behind my ear. She was lucky I [i]DON'T react violently to being touched during them unless I'm startled.

It makes my brain cells want to commit suicide. LOGIC IS WHAR?

My CH started about 15 years ago when I was in high school.  I was begging my mom to go to the doctor and finally she agreed and took me to our GP.  I described in great detail the nature of the pain, how they started and stopped, and most importantly that I could set my watch by them as they started at 10am each morning.

The doctor thought he was being clever and looked over at my mother with a smirk and asked, "what class do you have at 10:00"?

That was the last time I ever saw that doctor.

just a few hours ago..
neuro:''ch happens only during spring and autumn.You can't have it
all year.You must have sychological problems.you should see a therapist''

ok i cant laugh at the same joke more than once.
can someone borrow me his box gloves please? >:(

It is just eye strain

Take a BC powder

Alieve works

Suck it up

Your mother gets migraines too

Doc told me "cluster is still just a migraine"

my favorite is still " I had one of those once"

Egg in the eyeball remedy...must try that.

Regarding your question:  "You just need to eat more green leafy veggies".... :-?

Langa

Yeesh, if I had a dollar for every "I've had one of those" repsonses....  ::)

One person told me to hold my breath.  :-?

My mom asked me yesterday if I had tried Excedrin Migraine. I almost came through the phone on her. wow, excedrin i never thought of that, thank you, is what I said.

You should try red peppers (in your nose).
:D :D :D

i LOVE the " ive had one of those".
how can you just have one? do they understand the word "cluster"? meaning MORE THAN ONE. i know they all mean well, but WTF?

when I first was in hosiptal the stuid nuro said your scan is clear you havent reacted to morphine so therefore the headaches are not real and you are depressed!

I asked so why is one eye dilated and goes red etc and he said it just proves your depressed!

Then a few weeks later another nuro said you have CH but there is no treatment or pain relif avaliable and go away and live with it!

Needless to say I have never gone near those 2 donkeys for nuros again!

ive have just been advised by a doc to try yoga?

Uh oh....hopefully he said that in an attempt to help you with the secondary effects of CH...the tight shoulders...strained muscles....cuz that's the ONLY thing Yoga will help you with. Might be time for a new doctor............. :-/

I do understand...! but could you do the night shift at least....


Lefty....!

When I first started getting clusters, my mom and dad totally  blew it off.  They said that I wasn't eating right.   :-/

Guiseppi wrote on Feb 11^th, 2009 at 10:04am:

"If you don't think about it so much, maybe it won't happen." I was so sure of this one I wouldn't come NEAR this board while off cycle! ;D Joe

sorry , but i had to laugh awhile over this one, lol.  I had a period of about a year where I kept thinking "maybe it's  all in my head" and I would try so hard to not even think bout headaches.  ;)

jay wrote on Mar 11^th, 2009 at 12:12pm:

when I first was in hospital the stupid neuro said your scan is clear you haven't reacted to morphine so therefore the headaches are not real and you are depressed!

30 years ago, when I first started this fun time, I was admitted to the hospital.  After being there for over a week, and witnessing several hits, the head neuro (of this teaching hospital) came into my room and said: "Nobody can have the sort of pain that you are pretending to have, without something showing up on the tests we ran."

I was then transfered to the psycho ward, for three months, because I was PRETENDING to have this pain!  They let me out after three months, because they "cured" me.  (The cycle ended)

I wonder where that dickhead is now?

BUT, at least I have the distinction of officially being declared nuts! (And I live up to that declaration EVERY day!)

Chuck

I saw a GP (not my regular GP) about my headaches. She referred me to a psychiatrist, because she thought I was depressed (I didn't look so bright). This was after I finished telling her how these headaches wake me up every night, and I hardly get any sleep. Night after night. And she still manages to mix up depression with exhaustion.

The psychiatrist (I did go see him anyway, you just never know) did have one good advice for me: 'You're not depressed. Go see a good neurologist.'

My brother told me he thought I was taking too many meds for the HA and maybe I was enjoying it too much.  Not long after the same brother asked me if maybe it was just psychological.  Same brother who suffers with migraines told me that a heat patch kills his off in minutes so I should try the same.  I don't even mention my CH to him anymore.

After being admitted to hospital and spending 3 days there in agony and enduring 3 lumbar punctures, they realised it was headache related they discharged me on the spot, even though I was still in the same pain I was whilst getting admitted, and told me there was apayphone in the lobby to call a taxi.  Couldn't even walk properly let alone call a cab.

Last time I called doc out on a home visit, she asked if I'd ever tried paracetamol.

Loads of people say they suffer with migraines too.
They look at me with a glazed look and can't get it into their heads.  I personally think that as soon as you mention the word headache, they don't hear anymore.  My partner has said he experiences the same thing if he tries to explain it.  I try not to talk about it anymore or I say I have a neurological disorder.  But saying this doesn't feel right in my mouth either as I feel I'm making it sound worse than it is...then the beast hits and I stand corrected
S x

Some of these, if not most, are insane and it amazes me that they are doctors giving out most of the advice!

I remember seeing a neurologist in CA that was supposed to be top notch and his suggestion was to take two exedrin migraine with a big bottle of mountain dew. He said that that always works for his patients... we still laugh about that one.. if only treatment were that easy!

I can also remember all of the neuros either saying to cut out caffeine, drink caffeine or some other idea that was no helpful at all. And many have said that I was depressed... duh.. but that does not cause the headaches!

My last neuro at Jefferson wanted me to try the nasal spray with pepper.. the Sinus Buster I think is what it is called. So after much debate and much pestering, I paid twenty bucks for it and tried it once.. I can not put anything into my nose during a hit without make it ten times worse. So I gave him the bottle at my next appointment and told him to keep it in so many words. He got that message.

It is amazing to read what people suggest, have tried or have heard. I still remember someone on here saying to try snorting hot pepper... I did that and do NOT recommend it at all because it was horrible. Oh the things we do..

Anyways, just wanted to share these. At least we can laugh at what people tell us... most of the time and after we are longer angry at them!

Jill

Hi jill,  I am coming back after a 2 year PF cycle.  I noticed your post that you were at Jefferson Neuro.  Did you mean in Phila?  I live near it and used to go to Jeff, but I dont go there now.  Anyway, it caught my attention, because I have never met another woman with clusters.  Send a note if you feel like it and we can probably compare docs, and laugh at what dolts most of them are.

My names Christine and I live in S jersey.
Chris :)

aj wrote on Feb 11^th, 2009 at 1:09am:

The woman at the front desk of my doctors office on a Wednesday, after I explained I have cluster headaches, and was in cycle, and I was getting multiple severe hits a day and I need to see the doctor about starting some prescriptions for it: "Ok... let's see.  How about next Tuesday?" While i wouldn't wish this on any one or anything, I really sometimes wish there were a way to give them a K8 for five seconds.

I called my neuro's clinic this morning (wednesday) and asked for an appointment telling her my cycle has started.
The receiptionist says "OK. You can come on next friday (after 10 days) at 10:00 AM"
I called the neuro on his mobile immediately and he asked me to go to him this evening.
God bless the receiptionist..

Sunil Gururaj wrote on Apr 8^th, 2009 at 10:55am:

aj wrote on Feb 11th, 2009 at 1:09am: The woman at the front desk of my doctors office on a Wednesday, after I explained I have cluster headaches, and was in cycle, and I was getting multiple severe hits a day and I need to see the doctor about starting some prescriptions for it: "Ok... let's see.  How about next Tuesday?" While i wouldn't wish this on any one or anything, I really sometimes wish there were a way to give them a K8 for five seconds. I called my neuro's clinic this morning (wednesday) and asked for an appointment telling her my cycle has started. The receiptionist says "OK. You can come on next friday (after 10 days) at 10:00 AM" I called the neuro on his mobile immediately and he asked me to go to him this evening. God bless the receiptionist..

My Ex Doctor( Not receptionist ) said the exact same thing..!

Lefty..!

Lissa wrote on Apr 1^st, 2009 at 7:48pm:

When I first started getting clusters, my mom and dad totally  blew it off.  They said that I wasn't eating right.   :-/

My parents were the same way until Nov. 2004 (several months before I was formally diagnosed with CH by a headache specialist in 2005), when I had about a Kip 8 or Kip 9 attack while I was visiting them. Seeing me in agony, curled up in a fetal ball rocking on the couch for an hour and a half convinced them that something serious was going on.  Then they thought it was possibly sinus problems (since my dad had a history of sinus infections).  I even thought then (from having read a little info on them) that they were CH.  

Oldies but goodies I've heard over the years:

Mom - "well don't think about it and maybe you won't have an attack tonight."

Friend who used to be an evangelical street preacher - "have you tried faith healing?"

Online guitar forum (I've been playing guitar for 30 years), and the same evangelical friend - "have you tried weed?, it does wonders for headaches/migraines"

From the director of an animal shelter I volunteer at before I set her straight - "do you suffer from constipation?.  I have a friend who used to get bad headaches from tensing up her neck muscles while trying to go to the bathroom when she was constipated."  Sheesh!!   ::)

And yes, I've heard the "oh, I get (or I know someone who gets) migraines too."  I usually make it a point to inform people that CH is NOT like migraines.

When I finally was referred to a neurologist, he actually knew a little (I stress little) about Clusters, and diagnosed it right away.  Then he started sticking his foot in his mouth:
He asked me to describe them, and I started by saying that they only happen on the right side - he immediately said No.  I said no, what?  And he explained that I have them on both sides, I just don't notice it.
Then I told him that they wake me up at night - and he said No.  I said no, what?  And he explained that the headaches DON'T wake me up, because headaches don't work that way.  I finally asked him OK who's having these headaches anyway?  You or me?  But I have to say that he did get me on the oxygen in spite of his inferior knowledge!

i think we should pull our resources and wright a book called a thousand and one comments to annoy a clusterhead.

after being hit last week with k9 2 hours before work and shadowing like a maniac my co worker looked at me and said "whats with the miserable face, jesus you put me on a downer" then told him i was having a bad day to wich he replied "put a smile on it cant be that bad"

been told to go to a dark room and if im having an attak and he walks in  then i should leave the room as he didnt want to see it  i laughed my arse off at that one.

another guy in work, "my mate has headaches and he whent to acupuncture theropy and his headaches have gone" on asking what meds he used he told me aspirin.

my wife (bless her cotton socks) told me i wouldnt have an attack as she has banned sharon from the house. got hit that night, on telling my wife she informed me she was sorry but she left the bedroom window open ROFLMAO

mark (now feeling a bit more cheerfull)

My daughter reminded me of something my mother said to her a couple of years ago, while I was having an extreme 10K attack and running around the house banging into things.  She said that I could probably get rid of these things if I would just go have a makeover - she would have a headache too if she looked as bad as I did.  We're still laughing over that one.

I think she's lucky not getting a headache for that remark of hers, especially during a hit like that!  ;)

I was lucky in that my doctor immediately recognized the condition and I was diagnosed on the first doctors visit. Unfortunately, he doesn't seem very educated in area of treating CH's. He prescribed me Vicodin. Which only makes me nauseous. Ugh! That's besides the point..

I've also come mostly across the 'Oh, I've had that before' comments. I nearly lost my job. Bit my tongue just in time. That was my manager, luckily my supervisor knows someone with the condition also. We made plans on how to handle the situation if it arises at work.

but.. ooooooooooohhhhhhh!! 'I've had that before' ticks me off. Being treated as though I'm just being a whimp over a 'headache'.

My kids walk into the room, how ya feeling today mom...take one look see my left eye drroping and say ahhh (they're teenagers..and good ones) and tell me to lay down.  ::)

My boss who knows I suffer tells me I have too much drama....asked me to keep an eye on an account but told me I had to keep my eyes on the account to do that (I had my eyes closed while dealing with the peaking of the cluster at work)  :D

Linda_Howell wrote on Oct 8^th, 2008 at 5:52pm:

Mantovani huh?   I wonder if Gershwin would work as well.   Stupidest thing?   Just relax. I had a HA like that once. I can cure you with Chiropractic.

My oldest friend of over 40 years suffers from migraines.  In 1999, my first ever CH cycle (undiagnosed at that time) she came down to attend my daughters wedding.  I was in cycle, and she gave me three pills before the reception, telling me take this one, and if it doesn't work, take this one, and at last resort, take this one.  As a CHer knows, of course I got hit at the reception.  Took the first one, nuttin, took the second one, again nuttin.  The hit ended before I had a chance to try the third one, so she says.....See, I told you they would work.

And chiropractor.  I had a chiro who also suffered with CH (at least that's what he told me).  He told me, chiropractic will NOT help.  He moved away and my new chiro can absolutely cure me  ;D (says he)

Sandy

I went to a chiropracter , my Dr.s husband,and he said my neck was "out" and he would have me fixed up after a few visits, after 2 weeks of no fixinging he said I was the worse case he had seen.
100. apop for that!

I too have enjoyed reading this.  Common lack of understanding of the level of pain and the real fear, upon that first twinge, of just how bad is this one going to be?

We are not exclusive to pain. It's has all to do with the nearly unexplainable level. I think that's where we loose them.

My Neuro left the area after the storm.  She was the best. My new one actually charges me for the education I've bestowed upon him. Always says to me..."okay.., what do we do now?"  

Sometimes I want to intentionally fail all of those little gadget tests he asks me to do on my way out just to see his reaction. I guess I'm just getting old. This twit could be a child of mine that I don't even know about.

Steve G

Thanks, yes this was years ago!

Got a good one. My CHs are back, and my disabled dad is forgetful and didn't remember I suffer. I gave him some literature to try to refresh his memory to no avail, then he said "Do you need an aspirin?" I didn't even try to explain to him. But the other night during an attack, he came in while I was pacing/cursing and asked me if I should lay down. I was in no condition to give him a response, but then I heard him say, "Instead of pacing and rocking back and forth, do you want me to buy you a rocking chair?" :'( >:( :o ;D
Again, I was cripple, couldn't respond. But the next morning remembered what he said. When I asked him to repeat what he said, he told me he was reading the material, found some people rock back and forth in a sitting position and wanted to know if I wanted a rocking chair. He's hopeless but means well.

A few days ago a "friend" who I reconnected with on facebook but haven't seen in years gave me an extremely condescending lecture on how diet soda causes my CH, and that all of my doctors and me are wrong. The only problem with me is too many toxins... It wouldn't have been so annoying if she wasn't so sure of herself. She is someone who I always wondered if she was slightly mentally challenged, but recently she started homeschooling her kids and participating in some sort of network marketing nutrition thing where she thinks ALL health problems are from toxins.

My dear sweet husband said recently, " maybe it's psychological" WTF !

Lately, I have been saying that I have a neurological disorder that may be affecting my hypothalamus, and causes excruciating pain.  Shuts them up!

FramCire wrote on Oct 8^th, 2008 at 8:50pm:

My son came up, kissed me on the head and said "All better?" It wasn't dopey at all, but I thought Id share anyway.  For a 4 year old (at the time) it was hard to explain to him what daddy was going through but it makes me smile whenever I remember it.

I shared this in another thread, my four year old son started digging at the carpet under my head. my wife asked, "What are you doing" he replied, "I'm digging to find something to make daddy's head feel better"
He warmed my heart

~James

"Maybe you wear your caps too tight".  From a doctor when I first started getting clusters.

What a good thread - it highlights the ignorance towards CH shown by both the general population and the medical profession.

"Here, have a Panadol" is the most common uninformed response I get. My usual "sick of explaining" pseudo-medical response is:
Regular headaches are caused by the blood vessels constricting and Panadol helps the the blood vessels to expand. My condition is caused by blood vessels expanding so hand over that Panadol if you want to see my head explode.

And as mentioned in another thread of mine, there was an overzealous neurologist who, in addition to Sumatriptan as the abortive, prescribed the following:

• Lithium
  
• Gabapentin
  
• Topiramate
  
• Amitriptyline
  
• Atenolol
  
• Dexamethasone
  
• Tramadol
  
• Indometacin
  
• + probably others I've forgotten

... to be taken simultaeously! This left me in a mess 24 hours a day instead of just 5 or 6 hours a day.

do these comments stop over the years.

a friend told me when i got miss diagnosed with MS "a friend of mine is a midwife and one of her pregnant women had MS but after the baby was born she was cured"
im a man so even if that was true how in hells name can that help me???????

only last week a woman in a bar who is a friend of a friend tried to convince me she had healing powers and just by holding my head i would be cured but i had to believe in what she was doing. I asked her if she new what CH is to wich she replied its like migraine. No she didn´t heal me, touch or anything else LOL

Mark (the faithless)

The ones I cant stand are,
1. Go lay down
2. Stop pacing and relax
3. Stop drinking so much caffiene
4. Oh I get those too (This was from a person who has to have every problem I do right down to menstrual cramps! Right after I was diagnosed, she had to have an 02 tank as well, now I have an added diagnosis of Trigeminal Neuralgia and am waiting for her to tell me she has that too!)
5. And the top most annoying one is Stop screaming and banging your head. No wonder you have a headache.

5. And the top most annoying one is Stop screaming and banging your head. No wonder you have a headache. ;D ;D ;D

I LIKED that one!

Joe

lol i was told the other day that "it's all in my head" so needless to say i laughed and said "no shit, it's in the back of my neck too"

Sophia wrote on May 29^th, 2009 at 2:17am:

4. Oh I get those too (This was from a person who has to have every problem I do right down to menstrual cramps! Right after I was diagnosed, she had to have an 02 tank as well, now I have an added diagnosis of Trigeminal Neuralgia and am waiting for her to tell me she has that too!)

You want to know how I can tell if someone actually has this disease?

If they hear you have it, the reaction is not of dismissal like that. It's that they hate that you have this, too.

I grew up with a kid who has it, and when my Mom told him I had clusters, he was completely devastated to hear I had them. THAT tells me that you know what the fuck I'm suffering with.

In some cases a person needs it explained, because they think cluster headaches just means you have a lot. That I can get the misunderstanding with.... but if you hear it's fucking suicide headaches why in the name of god would you want to claim you have it too?

People hurt my brain...

Take B12. (Grandmother)

Can't be that bad.(Father)

Take three aspirin.(Too many to count)

I get headaches too.(See previous)

I've stopped telling people the name. I just tell them I have a rare neurological disorder.

Newbie on this board. Have been in cycle since two weeks ago today. And this after a remission of over 11 years.. But even that long ago I still remember some doozies when it came to "educated" members of the medical community, namely the head of Neurology for our local Large Hospital:

1) Oh you can't possible have "clusters" you are a woman and they don't have them. Yes you are presenting with a partial Horner's, I will grant you that, but you describe an "aura of flashing lights" never heard of that with clusters, so you must be having migraines or a sinus infection, after all you are a woman!

2) Shortly after that convo in his office, I called to let him know that I was having a Kip 8 equivalent attack and he asked me to come to emergency to confirm that I was having a "cluster"!! I went in, in full bore Kip 9 at this point, and he met me there.. The look on his face when he saw me was priceless to say the least.. "My God, you are having a cluster!! Hey, Nurses come here.. all of you, I want you to look at this patient, this is what a cluster headache looks like!!" All this while I was at a Kip 9 full bore attack! Needless to say, he finally agreed to the O2 and verapamil/sansert (it was a while ago, have had clusters from 1985 (barely no research) to 1998.. then remission until two weeks ago... ARGHHHH

I had been diagnosed with clusters for several years (4 or 5) but when my yearly episode started my regular doctor was not available so I opted to see another. I went to my appointlemt and told the doctor I was having another CH cycle and needed to start verapamil and Imitrex again.

The doctor left the room and a few minutes later the nurse walks in and gives me an injection. I asked her what it was and she said Imitrex. To which I replied WHAT FOR! I am not having an attack right now! What an idiot.

Just quickly another one: more current: from my GP: well I am not prescribing you oxygen.. at the conference I was at last week, they did not even mentioned O2 as a course of treatment so I dont' think that they are doing this anymore.. you know alot has changed since 11 years ago!! (turns out it was a conference on migraine headaches, which is something she still thinks I have) She did however call the head of Neurology  at Trillium, the next day, explained my case and did endup getting an ear full from him regarding O2 being the absolute first line of defense (abortive wise) for clusters.. Thank God.. Got a nice HUGE K tank to keep me company all night..... I give him a hug every time he helps me abort an attack (I love my K  ;) )He is so tall he stands even with my shoulders!! Better company at this point than my husband.. God bless him, but at least K understands and helps me with his silent sentinel duty against those attacks. ( I Do Not call them headaches, they are "attacks" as I describe them to people. It helps with their more comprehensive understanding.. yes it is a neurological disorder NOT a headache syndrome..

paul e wrote on May 29^th, 2009 at 8:36am:

lol i was told the other day that "it's all in my head" so needless to say i laughed and said "no shit, it's in the back of my neck too"

Love this!!   [smiley=sayyes.gif]

"you worry about work too much"

That's pretty much what I get from my family, it's all the stress...

Got this one today from my mom 'You should get Hypnotized'

gees you guys crack me up this thread is hilerous...



 thank you      ;)

dionysiusaeropagite wrote on Oct 11^th, 2008 at 3:37pm:

my two favorites: And another classic "Try acupuncture" Yeah, when they can get the needle to go through the skull and mess around with the nerve cluster in the brain ... maybe that would work ;)

I've actually had some positive results from acupuncture. My headache specialist prescribed me one month of weekly sessions and the HAs have been less frequent since I started. I can't say that it definitely is because of the acupuncture, but I will be going back in the future.

A lot of people have found a degree of relief with acupuncture, primarily with the secondary issues surrounding CH, the damage we do to our shoulder, back and neck fighting an attack. Haven't seen anyone break a cycle or prevent one using just accupuncture yet but seems to help with that secondary stuff. Any degree of relief is certainly worth exploring!

Joe

All 4 of these are from the same Doctor in the same conversation... And somehow i kept my temper and didnt laugh at him....

1. "Of course i know what CH is I am a doctor, every doctor knows this"

2. "An oxygen tank in your home? Dont be silly, I wouldn't even know how to get you one"

3. "In 25 years of being a Doctor i have never seen anyone perscribed injectable sumatriptan, you must be on the wrong medicine"

and this is my all time favourite..... the best in 8 years

4. "You know you have a problem"


I really like the "Brain Desease" or Hypothalumus ideas posted above, anything to avoid the word HEADACHE and its conotations.


"I've seen things you people wouldnt believe"

2. "An oxygen tank in your home? Dont be silly, I wouldn't even know how to get you one"

Do read Batch's post on how to get 02 prescribed! Will answer ALL your doc's questions!

Joe

AussieBrian wrote on Oct 8^th, 2008 at 9:43am:

It's all in your head.

Here here.

"You just need to learn to control it."

um...Ya I'll get right on that....   :o

when just talking to my girlfriend:

"do you have one now?"

errrr, no, if i did, i wouldnt be talking to you would I, id be smacking my head on the wall.

New to the boards.
I've been getting clusters for 25yrs, I started shooting NRA High Power Rifles Matches last year. This from my dad
Him "Maybe if you stop shooting that rifle those headaches would go away."
Me "What about the 24yrs of not shooting every weekend but still getting the headaches?"
Him "Give it a try."
ME "Come here. I'll kick you in the shin"
Him "Why"
Me "Just bringing the conversation down to your level"
That shut him up.

TB

Who taught you to speak to your father that way? ;D

;D ;D ;D

Chiggy, I like your style! Looking forward to seeing more of your posts! ;)

Joe

Two more recent ones (very typical but dopey nonetheless) that come to mind:

"Why don't you just take a nap until it passes."

"You must have a lot on your mind, go get a massage."

(As if I'm going to waste good money on a massage when it might be interrupted by a CH.)

Bumped for the benefit of our many, many new-found friends who may have heard something similar during their Cluster careers.

I had sort of the opposite where I said something a little dopey for normal headaches but in doing so conveyed to the other person a bit of context for CHs.

Me: "I had an CH earlier but didn't have my O2 or imitrex with me so I was just listening to some loud music through my headphone"
Them: "Why would loud music help with a headache?"
Me: "Well, it doesn't really help, but its sort of like squeezing your skull really hard with your hands or banging your head on something when you have a headache"
Them: "Why would you bang your head or try to crush your skull if you have a headache?!?!?"
Me: "Oh... I dunno, it's just something people like do"
Them: "I don't think it is"
Me: "Really? It's at least sort of common for cluster headaches"
Them: *silent but looking concerned for me*

I normally try to keep the CH thing kind of just between family and close friends, but it has kind of interfered with work a little bit this time, so it has come up in conversation. I love when I get the response, "oh yeah, I get those cluster headaches too."

I want so badly to say, WOW! Both you and I are within the .1% of the population that gets these! WOW!

But I just don't have the energy to explain nor the sarcasm to invoke.

Stumbling out of my room in the morning...
GirlFriend: "You look like crap."
Me: "Ya, didn't sleep, kept getting hit every time I tried to lay down."
GF: "Well, you don't have anything you have to do today, so just go to bed and get all the sleep you need."
I didn't even have a response for that one.

i really dont know what the dopiest response i have ever heard is, but i know who it probably came from...  good ol' Mom and Dad.

what is it about parents?  of all the people who give advice, they are the most oppressive about it! 

i avoid the topic at all costs with my father.  he just doesnt get it.  whats even worse than that is he has experienced some incredibly painful headaches in the past, but for some reason his went away several years ago.  NOW, looking back, he is convinced it was a change in diet.  conversations usually follow something like this:

him:  you still getting those headaches?
me:  yes
him:  you need to stop eating things your allergic to.
me:  i dont eat anything im allergic to.
him:  you must be, your still getting headaches
me:  stop eating oranges and you will stop aging
him:  no i wont, that makes no sense
me:  oh.  wait, i thought that was the kind of logic we were using today?

my mother is much more bearable.  even so, she usually suggests some form of magnetic bracelate or some such crockery.

fortunately, i have not had a headache in a while.  i also havent seen my parents in a while...  next time my dad brings it up, ill tell him im allergic to him. ;D

"No, we can't just have people walking in here and helping themselves to whatever medication they want, so the answer is NO. You queue up like everyone else and the doctor who will determine whether you need emergency oxygen or not."

Spoken by a medical practitioner...
... in a hospital
... in the Emergency Room
... when I suggested that I should be given a letter to show the triage so that I'd get oxygen immediately.

I have a sneaky suspicion that in this sort of situation, "suicide headaches" quickly transforms into "homicide headaches". :P

"Oh, I've had one of those once." LOL. The very opposite of cluster headaches, of course. You can't just go to bootcamp ONCE, you gotta stay for basic training! Silly plebes.

Nothing new really to add, some great posts though. Funny and sad all at the same time.

I think it's human nature to try to "1 up" others. Yeah, you're busy but I'm REALLY busy, etc, etc. It may not even be a concious response in many cases, just an effort to shift the focus to themselves.

Or it may not even be that nefarious in nature. The typical "yeah, I get bad headaches, too" response may be in an effort to empathize or commiserate to a certain extent. Perhaps the friend or loved doesn't want the clusterhead to feel alone or isolated so they offer "yeah, me too" canned response. But if that person knew how unbelievably frustrating and annoying that was they wouldn't do it.

And let's face it, they don't get it and no one except another clusterhead can truly get it. The pain, the fatigue, the fear, the isolation and the other flood of emotions that come with a cluster attack are something that simply cannot be understood by anyone other than someone that has lived through hit after hit, cycle after cycle.

All I can say is thank god for this place and everyone here.

"here have some gum, it'll help"

"you must be on drugs" <- back when I was still in school, one of the vps told me this during an attack and I almost punched him in the face.

"breath deeply, it's the same oxygen you get at home" a great quote from the school nurse, which despite being in the throws of a kip 8, I managed to squeak out a laugh and tell her to fuck herself.

My mother:  "Did he try taking an allergy pill?"

My father to my husband:  "They've go you misdiagnosed...it's all the dust in your shop, the msg's in the food...you need to go organic..."  and it goes on and on...

If oxygen works, it's a sure sign that you have cardiovascular and/or metabolic issues and it will only get worse as you get older.

(From a medical lab technician who thinks that staring at test tubes of blood all day makes him qualified to diagnose everything.)

"Did you take anything for it?"
"Maybe you should see a doctor...."
" Yeah I get bad Mirgraines too....take 3 Tylenol PM's and go lay down......it cures mine"
"Are you gonna be ok? Maybe I should drive you"
""Oh I have a friend whos brother's sister's first cousin on her Mother's side gets those too. You should....."
There are so many. When they try to relate their puny Migraines to my CH's, or give me something stupid like an 800 ibprofern.....it irritates me. But the number one thing that irritates me is when you gotta "Monster" and they try to sit next to you and talk and won't shut up. I realize that they all mean well by their feeble attempt to comfort me, but man I don't want to hear anything abou CH's from someone who's never had one.

From a good friend who is a herbist- "drink more water"

jkclevel wrote on Oct 22^nd, 2012 at 12:08pm:

I had sort of the opposite where I said something a little dopey for normal headaches but in doing so conveyed to the other person a bit of context for CHs. Me: "I had an CH earlier but didn't have my O2 or imitrex with me so I was just listening to some loud music through my headphone" Them: "Why would loud music help with a headache?" Me: "Well, it doesn't really help, but its sort of like squeezing your skull really hard with your hands or banging your head on something when you have a headache" Them: "Why would you bang your head or try to crush your skull if you have a headache?!?!?" Me: "Oh... I dunno, it's just something people like do" Them: "I don't think it is" Me: "Really? It's at least sort of common for cluster headaches" Them: *silent but looking concerned for me*

Now thats Funny and I can totally relate as I sat in the cxr with the stereo cranked one time just to break the pain

my family doctor after my mom and i diagnosed me (from the internet) with CH - "you don't have CH, you are not a 40 years old man how smokes and drink..."
another family doctor: "i know what CH is, believe me, you don't need imitrex injections, there are very good pills for CH...."
and another one, when i had streptococcus and in a cycle: "you think that your head hurts from the CH, but it's from the the streptococcus..."

I was at work trying to work through a hit and when my customer asked what was wrong and I told her I had CH and tried to explain in general terms, she told me that she recently converted to her new religion and she learned that "headaches" are really just memories of earlier trauma.  For example, if I fell off my bike when I was a child and hit my head near a freshly cut lawn, then I would get a headache everytime I smelled a freshly cut lawn.

I don't really remember a time that someone pushed their thumb into my eye socket as they were hitting my head with a hammer while I was sleeping, or when I was driving, or when I was working, or any of the other seemingly random times that this "memory" comes back, but good to know.

"Your energy meridians are blocked"

My Top 3 dopiest responses i've been told include...

"Stop thinking about it, it's all in your head!"

"I had one of those once!"

"Go lay down!"

-Gregg in Las Vegas

I was recently told it was because I eat Gluten and if I stop eating gluten, my headaches would go away.

:headdesk:

"Probably low blood sugar" (though that could a trigger)
"When the going get tough, the tough get going" (not quite sure what that was supposed to mean)
"Just think of how much your wife suffered when birthing your child" (yes, and did she birth 3 of them a day for a 3 month period?)

Oh the classics 8-)

I was recently in the er with a kip 8 spike.  The nurse turned off the light and came back with a hydrocodone.

Had a neuro once tell me I could just take Aleve.  I insulted his intelligence before walking out. 

Did find a neuro in Charleston SC that understands CH.

there is a few such as ....i get them ....do you smoke .....stop drinking coffee.....you worry too much....hes got a headache ....i hate it being described as a headache .....or when people laugh and joke about it like its a funny issue to them ....some people ignorance is an understatement

So my mom and I were in the Burlington Mall in Mass yesterday before my appointment with Boston Children's Hospital Headache Clinic at Waltham.
We were talking about my neurologist, and this guy who owns a kiosk said "you're having headaches? Have you tried this?" he handed me a rice bag. "It has willow bark in it. That's what they make tylenol from. It'll cure your headaches!"
"First of all, I have cluster headaches, for which general painkillers are ineffective. Second, they make asprin from willow bark, not tylenol. Lastly, it would be infinitely more effective to take asprin than smell willow bark, because they extract a precursor to asprin from the willow bark, not actual asprin. Asprin doesn't help these headaches, please stop pushing your ineffective alternative medicine as if it is a cure, when it is not."

the guy walked away.
It felt pretty good.

Sorry for necromancing a thread, but since that accurately describes me too, I thought I'd share my experiences too.

"Well, it's just a different kind of migraine. You have to learn to live with it." By an neuro in ER after a week and a half of not eating anything due to the pain. (and if the neuro had been any good, I would have gotten my diagnosis 12 years ago.)

"Your life is decayed! You must come back home to live!" by Mom, after a cycle, where I ended up in the afore mentioned ER. I guess she was lonely. But she has darlingly called me her "nine month migraine" before, so...

"You need to stop eating wheat." by mom again

"Your headache is caused by that computer!" a nurse, while I was in the hospital for my backpain eating enough opiates to kill an elephant, no help for my headaches though.

"Did someone hit you?" After being wheeled to the said hospital with my eyelid hanging and slurred speech. Even the paramedics were struck dumb with that one. They had seen the episode begin in the ambulance, when I was being transferred between hospitals.

"Have you tried eating only organic food?" by an idiot convinced that it was my unclean living that caused my headache

Bonus round:
"You were shot in the back in a past life, that why you have backpain!" an ostheopath who dabbled in spirit healing, a fact I learned after I had been there.

I had an arachnoid cyst drained that is on my temporal lobe. First ch and Dr visit for them when i was 18 years old,  surgery was when I was 10. After the mri, Dr told me and my mom that they were "ghost pains " from my surgery. Ghost pains,  still makes me laugh 18 years later.

Josh W wrote on May 26^th, 2013 at 7:40pm:

I had an arachnoid cyst drained that is on my temporal lobe. First ch and Dr visit for them when i was 18 years old,  surgery was when I was 10. After the mri, Dr told me and my mom that they were "ghost pains " from my surgery. Ghost pains,  still makes me laugh 18 years later.

Dude, that's one bad-ass Ghost! :o

Joe

introducing the Ghost Faced Killah?

You're right, Josh. With a doctor like that you may really be better off with an exorcist.

I go to see an Army Doc about my CH after finding out about O2.

"Doc, its in my med file, I have CH and my cycle has started!  I just heard about oxygen... is there any way I can get a script for a portable O2 tank?"  :-[

"No way Sergeant.  I know what you'd do with that thing."  >:(

"Erm... use it make the pain stop?"  :-?

"No Sergeant, you'd probably go shoot it at the rifle range to make it blow up or something.  Now here's some Motrin..."  >:(

Fast forward to the following year when I worked up the courage to ask another Doc about getting a tank...

"Doc can I have a..."  :-[

"Yes."  :)

"Really?"  :-?

"Yup... that last Doc was a screaming imbecile who didn't know a thing about medicine.  Go get your Indocin, Sumatriptan and Oxygen bottles up front."  8-)

"Doc... I <3 you!"  :-*

DAMN!!!!!!!!!!! An educated GP, that sir is a beautiful thing!!! [smiley=tekst-toppie.gif] [smiley=thumb.gif] [smiley=thumbsup.gif]

Joe

Hello again all  :)

To continue my previous post;  Fast forward another decade and I find myself overseas in a dusty mountainous country getting smashed with 'the Beast' during my last month here.

Normally at home my wife is there for morale support when the monster intrudes, but now all I have is my 19 year old platoon medic. 

He (for some reason) refuses to rub my back and say "it'll be ok sweetie" when I am having an attack  ;D.  I forgive him though, as after being in my room during one bad night, he magically appeared the next day with a lovely green bottle of oxygen.  Bless this kids heart, he's doing what he can to help, and his stature as a professional (even at 19 y/o) is tops in my book.  I swear I think he really wanted to say "WTF is happening right now :o ?!?!?!?" the first time he saw me in full on suck mode.

Good news, 3 more weeks and I go home.  Bad news, this cycle is only just starting and if history is any indicator, I have a couple months of fun time (not really) coming my way.

As an aside: All in all, I have had positive experiences with actual Military Docs about CH and they tend to bend over backwards to help.  The odd "oh its migraines or stress or blahblahblah" here and there, but surprisingly they seem well educated on it for the most part.

Regards,
Timothy

Timothy.  Sorry to to hear about cycle. I wish you pain free travels back home.

Timothy wrote on May 31^st, 2013 at 3:18pm:

I go to see an Army Doc about my CH after finding out about O2. "Doc, its in my med file, I have CH and my cycle has started!  I just heard about oxygen... is there any way I can get a script for a portable O2 tank?"  :-[ "No way Sergeant.  I know what you'd do with that thing."  >:( "Erm... use it make the pain stop?"  :-? "No Sergeant, you'd probably go shoot it at the rifle range to make it blow up or something.  Now here's some Motrin..."  >:( Fast forward to the following year when I worked up the courage to ask another Doc about getting a tank... "Doc can I have a..."  :-[ "Yes."  :) "Really?"  :-? "Yup... that last Doc was a screaming imbecile who didn't know a thing about medicine.  Go get your Indocin, Sumatriptan and Oxygen bottles up front."  8-) "Doc... I <3 you!"  :-*

idiot doctor, but to be fair I was encouraged by friends to do stupid shit once I got my oxygen tank.

The most irritating thing I've been told happened in an emergency room. "We have a headache protocol. You need to take oxygen at 4 litres per minute for 20 minutes before we can do anything else."  :D An hour later, "You have to take oxygen at 6 litres per minute for 20 minutes before we can do anything else." :D Another hour later "you have to take oxygen at 8 litres per minute before we can do anything else." A half hour after that, "take this regular strength tylenol and wait 40 minutes to see what happens."  :o Each time I told them to read my chart, I know what this is and how it needs to be knocked on the head. They never listened. The tylenol was the killer. I almost left in disgust. >:(
There's no treating anyone like an individual any more. We are all, apparently, a product to be put through a system.

Timothy,

Thank you for your service...

I'm an old Navy Fighter Pilot and hearing military medical folks put out BS like that on oxygen therapy as an abortive for cluster headaches makes me want to go ARMSTRONG !!!

Please shoot me a PM with the email address for the idiot medics...  I've still some pull at OSD and some heavies at the National Naval Hospital, Bethesda, MD.  We might just get them educated...

Tale care and start taking some vitamin D3...  See START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE for details.

Take care and hang in there.

V/R, Batch

"maybe you should stop surfing in the ocean for awhile"  guess they thought the water was doing something to my head?

Tim, come back from the dust bowl safe and sound. Take Batch at his word, he means it. And for the rest, I've posted this before, but I carry an ER Rx in my wallet from my "informed" neuro saying, if I am admitted for CHs, I am prescribed high flow O2 with a nonrebreather mask, along with IV DHE. Haven't had to use it yet, hopefully never, so I don't know if this would work but it is a valid doctor's Rx. Worth a try. blessings. lance

On my way into hospital, a well-spoken and lucid Granny at a bus-stop gets talking to me. She seems concerned. She looks at me hard and asks me what is wrong.

I am transparent, rocking, groaning, clutching at my eyeball, coming down off a very public Imigran aborted attack with heavy inter-ictal pain and shadowing.

I could barely see. Before she arrived, I had just slipped into the roadside shrubbery and injected Imigran behind the bus-stop shelter, hopefully unnoticed. Caught out again in public...

She seems educated, concerned, interested and persistent in asking me about my symptoms.

Working through half of a barely functioning watery eyeball, in a measured tone I explain my CH as concisely as I can.

I tell her I'm 37 years old, chronic CH since age 4, around 2 years total remission in a lifetime, that I've tried 70 different medications and many times, very nearly died trying to find a solution.

I tell her I'm on my way in to hospital to see a headache specialist to run more blood tests on my thrashed organs and probably for another round of medication trials.

She listens intently for the 10 minutes it takes to summarise CH itself and my lifetime of it, nods her head, then says;

"Well dear, at least you still have your health".

We both got on the bus as it arrived.

It seemed the dopiest thing I had ever heard at the time. :o

Fast forward a few years and thanks to Batch's D3 work, I now do have my health. Perhaps she was right...

Cheers, Ben.

Here's to persistence and to the D3 regimen! :)

I met a woman in her 50's that said she had chronic cluster headaches AND Trigeminal Neuralgia and "...After trying a hundred medications, the only thing that prevents her attacks is OPANA's."  ...--->  My opinion is: That's got to be total BS & she has been misdiagnosed or (more likely) is just faking symptoms to obtain heavy duty narcotics !

I4B

---

Here's an interesting story I thought was relevant to share with all of you here n this thread...

After 2+ years of being told to get "that sore on my back looked at because it may be cancerous", I finally put down my stubborn shield and went to the skin and cancer clinic.

The doctor confirmed immediately that it looked like skin cancer.  I am not surprised, am a bit concerned about how severe it is, test results from biopsy will come back to me in about 10 days, then they set an appointment to carve it out, tell me about possible future treatments, etc. 

While the doctor and the nurse were behind me injecting a numbing agent prior to the biopsy, I felt the knife cutting a piece of my back for the biopsy.  I jokingly asked "what was the purpose of the needle injection prior to cutting?"  The nurse replied "so you wouldn't feel the pain when doing the biopsy."  I said the injection didn;t work, as I can feel the knife cut by back."  The doctor said "would you like more of a numbing agent?"  I replied "No thanks, I can handle more pain that most people in life as I have Cluster Headaches.  Do you know what those are?"

This is where it gets good...the doctor says..."I had one of those last year for about a month."  I immediately thought of this thread and laughed silently in my head.  I said "a month huh, wow, that must've been really difficult.  How did you deal with it?"  He said "I had to go on vacation to Costa Rica and swim in the warm saltwater everyday for a month straight to get rid of them and it worked."  He said "I felt tremendous pain behind my eyeball.  Where do you get yours?"

At this point, I realized he read an excerpt for 30 seconds from a medical textbook and was just empathizing with me and refrained on further discussion of CH's as an ignorant doctor speaking about CH's is at the top of my list of most heated things in life.  I replied "the trigeminal areas."  He then understood I knew proper words and refrained from further discussion about CH's.  Of course, I told him to go to this website if he ever gets them again. 

The bright side is that I do feel very comfortable and actually impressed with his knowledge, 30+ years experience and office manners to continue future skin cancer treatment.

-Gregg in Las Vegas

I have loved reading this thread. After a really crappy week I needed a laugh.

I'm sure we've all had the "oh I get headaches too, just take an extra paracetamol" all too often.

The dopiest a doc has said to me, well there are two, first one was way back when I was 15 and the doc said "of course your eye area hurts, you have your eyebrow pierced". I broke down crying and walked out. The piercing didn't last long. I tend to hit my head and it did start hurting too much. And just a couple of years ago a doc said "your dreadlocks are too tight". It baffles me how these people tie their laces never mind pass medical school. I no long have dreads so might hunt him down for a new excuse! 

If I call it cluster headaches. [smiley=hammer.gif]........................"oh, just a headache then"   [smiley=sayno.gif]

If I give it it's proper name - migraineous neuralgia.........."So it's a migraine, or like a bit of tooth ache" [smiley=deadhorse1.gif]

Now I call it trigeminal nerve compression (suggested by someone else on another site). That seems to stop the stupid responses.  [smiley=applause.gif]

I prefer "violent head smashy pain disease"

I had the inside of my house painted a few years ago and asked the contractor to patch a couple of holes in the wall of my bedroom, which I explained happened as a result of a Kip 10 attack.

He asked "you did that because of a headache"?

My Doc, told me that it couldn't be CH because it was the first time i came to him with it and CH was reoccuring.... damn scientist. I had my headeach dairy of the last month with me and all...
I told him that the next time i came back with this there was no discussion and he should redirect me the Neuro. and he did the next time i had CH after trying triptane's for 2 weeks, damn posion. The Neuro on the other hand had my fixed up with verapamil and O2 within 15 minutes.


Luckely all people around me are very supportive and not judgemental, thank god for that.

This is somewhat the "other side of the coin", but OH so satisfying!

The year I went chronic (the same year I was divorced by my wife) I was getting multiple hits a day for over a year, taking Immitrex injections ... she thought I was getting stoned all the time. Could not make her understand that there is NO good feeling from Trex except the relief from the CH ... afterwards it was like a really crappy hangover!

So one day, the lovely woman (whom I'd seen give birth to our son and never let out a welp) came into the house screaming bloody murder and holding her head. I did my typical (home) remedies for her, none of which worked ... and then asked her if she wanted to try one of my Trex injections ... to which she replied "anything ... just make the pain go away"! It was the first time I'd ever heard her use the F word! I gave her the shot and she screamed "HOW THE FK DO YOU DO THIS EVERYDAY"!!!

I'm pretty sure it was divine intervention, but the bitch divorced me anyway!

"God, if you're listening ... let her have these for the NEXT 15 years ... I've done my time and she's just MEAN!!!"

my mom, bless her soul, suggested i try "tapping" during a cluster, its some kind of new age tap your head with your fingers treatment,she still doesnt understand how violent and brutal they are as she has never seen an attack, there will be no forehead tapping while im mid-attack  :o

23yearsofch wrote on Oct 2^nd, 2013 at 5:12am:

my mom, bless her soul, suggested i try "tapping" during a cluster, its some kind of new age tap your head with your fingers treatment,she still doesnt understand how violent and brutal they are as she has never seen an attack, there will be no forehead tapping while im mid-attack  :o

I got this from my therapist and several friends.
MY SIDES.
MY SIDESS

At Work one day the Topic of Headaches came up and I mentioned Cluster Headaches, one person said...

"Oh I've had those"

me: "Really what do you take for them?"

"Excedrin Migraine"

me: "Did it work?"

"Yes it did! You should try it!"

me:   At this point I Turned and walked away with no comment and an Eye Straining Eye Roll  ::)

Because of stupid (STU-pid!) responses I stopped telling people about my clusters. Because most of the time they said "Do you think it's stress??" Of course if I gave up ____ or took [vitamin] that would do it. Then there were the commiserators who knew how it felt because they had clusters too and proceeded to tell me how they treated their migraines. There were the doctors who said "you couldn't have clusters, only 5% are women." Thirty years of NO support until I found this forum (although my kids and ex-husband were very understanding).

Bella wrote, 10/16/13.

I live in a small town in Sweden. I was sent to a neurologist supposedly an expert in headaches. Just dissapointed when the answer I got was that CH is a headache most common among 50 year old alcoholics.

Responses?? Ya,,
I strongly remembered the day when I was feeling like Hell  >:(
just because of headache and at that time I was in my college so I told my friend that I want to go home,, he replied uhh,,
Lets go we'll have a drink together and you'll be fine  :-X

Here's one for all those people who say to you, "Oh, I had one of them once..."

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This thread is awesome because us with CHs know 99% of people do not have a clue.

I am on week 4 of a cycle now and was told today by a friend since pain killers don't work its either in my head or a brain cancer, and the only fix now was voodoo!

You know how your are at week 4 of no sleep and 3-4 CHs a day, I lost it on this guy!
I said, "you are freaking right, I need voodoo to suck the demons out of my brain"! Hell at this point if I thought voodoo would work I would be out with a witch Doctor burning candles dancing naked around a dead goat and a bonfire!

A couple from out Sunday School class told my wife that she gets headaches also and the only thing that works is rubbing olive oil and fresh peppermint oil on my temples. (Serious, who has the time to mix peppermint & olive oil during a CH!?!?!)

The best thing I have found to tell people is that I have brain damage caused by a dirt bike accident. It's not all a lie I have had bad wrecks on dirt bikes, but in reality it had nothing to do with CHs but people just say sorry and move on. During a cycle the worst thing in my opinion is a stupid response, it just sets me off! God forbid if I am on a steroid at the time, I will lose my cool and go off the deep end.

Anyway thank you to all my CH family I love all of you, just remember according to the world this is just in our head, and that's a fact it is a pipe bomb in our head!

About a month ago I was in the middle of one of my worst cycles while at accepted students day at a college my daughter was starting this fall.  I got a kip 9 for like an hour and a half.   I was roaming the campus as my family did the school stuff.  I finally found a comfortable place temporarily rocking myself in the backseat of my car.   I am texting my wife the pain is so bad, it wont go away...clearly over the standard 40 minute headache for me.  The text back that I got was .. did you go see financial aid yet.....

Hmmmmm...on the one hand, you do have to admire her ability to stay on track! ;) Ouch!!!!

Joe

This one came from my adoring wife and wonderful supporter.
I was in the middle of a Kip 6-7 and she said to me
"When you've finished this attack can you measure up the space for the TV" (what the)
In her defense, it was in the early days and I had said to her "between attacks life is normal" (so so !)
I remind her of it often
I suppose she took me at my word ! ….. and  I did measure it up. :)
And I still love her

The one I always get that always annoys me goes something like:

me: I get horrible cluster headaches for like over 20 years, theyre the worst pain imaginable theyre ruining my life.

other: Have you tried Excedrin

me: yeah, it doesnt work

other: maybe then, you should see a doctor

me: you think?

A doctor recently told me that I needed to try "relaxation and yoga" for my headaches. Obviously, he was an idiot !!  
[smiley=lolk.gif]

The most common agitator is some derivative of  "oooh, that's why you have the oxygen tank...I get migraines AND cluster headaches. I just take some painkillers and sleep it off."
-no more though, totally just saying defective hypothalamus and leaving it at that.

The worst by far for me though was my future mother-in-law.  After diagnosis but still while fighting for treatment.
She walked in on me having one she was warned would happen at 11o'clock and that I need to be alone for it. She literally climbed on top of me. Wrapped herself around me trying everything in her power to stop me from trashing.
•"Shhh, it's ok, shhh, it's over, they can't hurt you anymore baby, mommy's here, shhh, stop, stop, shhh"
It took  Kyle and his step father on top of my even more panicked thrashing to get her off me. When they pulled her out of the room reminding her I need to move and be alone until it's over she lost it at Kyle  yelling angrily
•"How the hell did a team of reputable brain doctors diagnose her with some obscure disorder? ONLY EMOTIONS CAN CAUSE PAIN LIKE THAT!  It's painfully obvious what she's going through is a symptom of posttraumatic stress syndrome from horrible sexual assault when she was too young to fully remember! Now let me back in there she needs me!"

Your mother in law has it the wrong way round. It's not the emotions that cause the pain. It's the pain that causes the emotions.

Still, at least she cares enough to fight for what she thinks is right for you.
Maz.

Yeah,  she fights for every scenario she makes up in her mind over reality and data... but she does care.

My father, a psychiatrist, has insisted that it is: stress, diet, or for the latest, PTSD for when I was mugged at gunpoint 20 years ago (even though I got clusters years before the mugging). Insists that he specializes in headaches so he knows best.

Sigh - he cares, I know, but....read up on the condition, please?

A private conversation in the pub today about CH was interrupted by a rather loud lady who left us in no doubt that there is no greater pain on earth than childbirth. Nor can there ever be!

Us blokes know nothing about pure agony and this catastrophe that women must suffer is all our fault anyway, horrible and hateful creatures that we are.

I simply agreed with her and said I truly hope it's the most awful pain she ever has to endure, and I admire her for living through it to tell the tale.

I meant it, too.

AussieBrian wrote on Apr 24^th, 2016 at 3:44am:

A private conversation in the pub today about CH was interrupted by a rather loud lady who left us in no doubt that there is no greater pain on earth than childbirth. Nor can there ever be! Us blokes know nothing about pure agony and this catastrophe that women must suffer is all our fault anyway, horrible and hateful creatures that we are. I simply agreed with her and said I truly hope it's the most awful pain she ever has to endure, and I admire her for living through it to tell the tale. I meant it, too.

:) :) :) Well, I can attest to the fact that CH is a hell-of-a-lot worse than Childbirth - having experienced both.

At least with Childbirth you've got something to show for it and you don't have to go thru it again every hour or two.  :-*

Amen Barbara! I've had 3 and would gladly have 20 more (if I wasn't so old). No comparison!

I agree with you girls.  I'd have a baby any day instead of CH.

This thread is amazing.  ;D

This thread is great!  Some very funny posts.  I was recently told to take an Advil and have a glass of wine  ;D

I told a work colleague about my CH and it turned into a competition with her migraine. I surely know migraine, I had it as a teenager, and know it is bad enough. Well, I tried to explain how this has nothing to do with migraines. And she said well, it's still just a headache and kept on explaining how her face was numb from the pain she had to endure.
Eventually I agreed. It's "just" pain. And wished her the best for her migraines.

I mentioned this in another post (when I was linked to here to read about what people get to hear from non sufferers):

I am a vegan, and you wouldn't believe how many people develop a sort of hate for my life style choices. Well those people it seems are almost happy to hear that I have CH, because now they can say HA told ya. Eat some meat and it'll go away :)
I tried to explain that from all the vegans and vegetarians I know (and I know hundreds of them) I am the only one to have CH. So by any statistic this has nothing to do with it. (Not that I hadn't considered it, honestly if it was in my hands to put a stop to CH, OF COURSE I WOULD DO ANYTHING, eat meat, hell I would eat human flesh if it meant to stop CH) But they put their fingers in their ears and go lalalala..

Comparing CH to other painful conditions isn't easy and I've got CH, migraines and CRPS.

CH wins for the absolute pain, zero question about this from this combination, however with abortives I know I can kill the pain in a few minutes and even without, the pain is over in around an hour or so.

Migraine is different in that whilst the pain never reaches CH levels over a kip 6 or so, the duration can be significantly higher, with some people having migraines that can last days / weeks or longer.

CRPS is different again with the pain level being higher than migraine, but not more than a kip 8, but it can last months / years.

So for ranking the absolute pain, it is CH, CRPS, migraine. But for life impact it is CRPS, migraine, CH.

But that is just for me. We're all different.

A few years ago I had a similar discussion with someone I was working with and it turned out that we both had migraines and both had CH, so we called it a draw.

About the only people i bother explaining the pain of cluster headaches to anymore are dentists.  I don't accept local anaesthetic,  i hate the numb feeling.  But, i don't flinch when i am in the chair.  Root canals, fillings, extractions, oral surgeries, it doesn't matter.  My heart rate doesn't even go up.  When they ask me if i have lost feeling to my mouth(always happens), i tell them no, i suffer from cluster headaches, so dental work has become a walk in the park for me, since cluster headaches are MUCH worse. 

Thats not the actual reason i can go into the trance, as i learned that trick as a kid...
  Regardless, a dentist who just got done peeling your gum off the bone and grinding part of your jaw away, knowing you felt every bit of it and didnt so much as breath faster, is not likely to discredit your description of pain.

I recently had cause to smile.  Corresponding with a chronic who's doing it tough just now and she said,  "Yeah,  it's bad,  but it reminds you how lovely the flowers smell."

I remain at a loss for words.

The craziest I ever had was.....”You should wear a hat”.

---

You could easily make yourself a tin foil helmet Peter.  They stop aliens from being able to probe your brain which is surely the cause of CH. ;D

maz wrote on Aug 16^th, 2018 at 8:04am:

You could easily make yourself a tin foil helmet Peter.  They stop aliens from being able to probe your brain which is surely the cause of CH. ;D

….ABSOLUTELY correct...and as Peter well knows...you MUST line the INSIDE of the foil with Blue Cheese.....

...personally... I always go with foil from a pre-Y2K bomb shelter...cuz after that the "gummint" mandated "radio holes"....and we ALL know what THAT means..…………….

AussieBrian wrote on Aug 16^th, 2018 at 4:22am:

I recently had cause to smile.  Corresponding with a chronic who's doing it tough just now and she said,  "Yeah,  it's bad,  but it reminds you how lovely the flowers smell." I remain at a loss for words.

thanks Brian.....me too...no words needed....I aspire to that equanimity.....

Best

Jon

Jon,


It’s very simple........the only thing that really works is  to wear 2 pairs of socks.

Peter.c

(From the archives of ch.com)


Go placidly amid the noise and haste, and remember what peace there may be in PFDs.

As far as possible, without surrender, be on good terms with those that offer advice. Speak your truth quietly and clearly before strangling those who'd offer goji berries at a price. Tread softly upon the genitals of capsaicin purveyors and torture only slowly the trolls who'd offer us a cure.

Listen to others, even the dull and ignorant, for they too have their stories of unimaginable migraines and tooth-ache. Avoid loud and aggressive persons, they are vexations to the spirit and a mere Kip-5 would kill 'em.

Exercise caution with the medical profession, for the world is full of trickery, but let this not blind you to the virtue there is in O2 and a good neuro. Many persons strive for high ideals but there is only one Deej. Especially, do not feign affection, for we love you as you are: CH and all.

Take kindly to the counsel of the oldsters, gracefully surrendering the years of mis-diagnosis. Nurture strength in spirit to shield you in sudden Kip-10. But do not distress yourself with imaginings as many fears are born of fatigue and loneliness. Thank you ch.com.

Beyond a wholesome discipline, be gentle with yourself and your supporters, especially when head-banging is all, for you are a child of the universe. No less than the trees and the stars, you have a right to demand imitrex, 25lpm and verapamil, or seek out clusterbusters should it be your desire. Frozen peas are our friends.

Therefore be at peace with your beast, whatever you conceive it to be, and whatever your labors and aspirations. In the noisy confusion of life, keep peace with your soul and ensure your arsenal is full.

With all its sham, drudgery and broken dreams, it is still a wonderful world.

Be cheerful. Strive to be happy. PF times for all.


(With apologies to Max Ehrmann.)

Peter510 wrote on Aug 17^th, 2018 at 2:49am:

Jon, It’s very simple........the only thing that really works is  to wear 2 pairs of socks. Peter.c

---

hurts_so_good wrote on Oct 7^th, 2008 at 10:38pm:

Anyway, what's the dopiest thing ever said to you when you mention CH?

When I was working on a marketing agency, my coordinator suggested that I look for spiritual work somewhere.

My most recent dopiest response.

"Have you heard of Karma? Maybe you did something in a past life to deserve this..." :(

By the way Brian, what you wrote had me in tears by the end of the page. i'm going to print that out and hang it on my wall. Pain free days to all!

Bumped for the benefit of our many newcomers,  along with a welcome to all our regular visitors who may not know this thread is here.

Feeling lonely?  A little misunderstood, perhaps,  as though no-one really believes the nightmare we must endure.

Here's 10 pages worth of comments,  going back fully 10 years,  that suggest you may not be completely mad or simply seeking sympathy for an imagined disease.

Consider starting back at page 1,  smile when it matters,  and I can promise you are not alone. 

I was going in for my 4th brain surgery and someone actually said....oh wow....4? Maybe it is that bad....no the first 3 brain surgeries were just to get someone's attention. especially the one when they gave me 24 hours to live from infection.