I was only diagnosed on Tuesday, though i have had a few episodes in the past. I have to admit, that it was almost a feeling of relief to know what the problem is. I'm NOT crazy, these things really do come on fast, last for an hour, and then go away on their own. For a while i really thought i was loosing my mind. My co-workers must have thought i was faking or something, because i would leave work around the same time everyday for a week, holding my head and screaming.

So when my neurologist officially diagnosed me with cluster headaches, i suppose i felt relief. I now have a name to put to this hell. I started to read and do some research on my own, and it all makes sense to me now. Especially the things you all call "shadows". I would actually try to explain them as echos of the real pain, or "pings". Whatever i called them, i knew they were warnings. I had already figured out what they meant.

As soon as i was diagnosed and the doc explained what it was and what it meant, my mom seemed to understand. After all, she had spent countless hours in the ER with me for these things in the past. I thought it made sense to her too.

I suppose i was wrong. Tonight i went out to dinner with my mom, two older brothers, and boyfriend. I hardly ever drink, it is really rare, but if i DO drink, i do so when i am in the company of my entire family, mostly because i know i will not be driving home. The only thing i really drink, even in that circumstance, is a beer or two with dinner.

I had read that alcohol can "trigger" the pain, so i did not even consider it tonight. When I turned down the offer of beer with my steak, my brother questioned me. I told him what i read and he looked at me like i was insane. "how can one beer cause a migraine?". (I honestly don't know if my one beer would have brought it on, i just knew i was NOT going to find out). So he rolled his eyes, shrugged his shoulders and let the subject go.

All this week i have honestly felt RELIEVED, i know i keep saying that, but it really is the truth. I am NOT happy to have this problem, or have to live with it. . . i am just SO glad that i am not crazy, it really was happening, and then to find out that i am NOT alone made it all the better. (there are other people that understand!!)

After dinner, the topic of my moms coffee cup came up. My boyfriend got her a set of them for mothers day, and apparently the brand he got has been recalled. (the paint is bleeding or something like that). My Mom, who i thought understood and accepted this as i had, jumped on the conversation and decided that her coffee cups are to blame for my headaches. They MUST be causing all these headaches.

Maybe it is her way of dealing with this. Blame it on anything you can. I know she can not stand to see me in pain. . . i know it hurts her. But is it normal for her to act like this? For family members to try and come up with anything as an excuse then just shrug it off? She was sitting in that doctors room with me, it seems she has completely blocked out everything the man said.

Somewhere between the beer topic, then the coffee cups, my mood has changed. I no longer feel relieved. I feel like crying. I do not want to have to keep trying to explain this to my family. I live with them, they witness my hell and suffering. Why was it so easy for me to accept and they just can not believe that is just what it is. Everyone keeps trying to come up with other solutions. (Maybe i don't get enough sleep, I'm too stressed about work, allergic to my dog. . . etc.)

My brother still thinks i have migraine issues, and my mom is about to empty all of our cabinets and trash any dish that is not plain white.

I guess i just needed to vent. . . but i have to ask you guys, is this to be expected? I feel so alone right now. i don't want to keep explaining it. Why cant they just accept it. Learn about it. Hell, i don't even want their sympathy. . . i just want them to stop blaming other things. Does any one have any suggestions, or should i just let them think what ever they want? It might be easier that way.   .

You're not alone. You've got a forum full of people who totally understand what CH is.

It is a huge relief to finally get a diagnosis, to know what has been  making your head so painful and it's not something else like a brain tumour.

Alcohol can trigger CH for most people who get CH, often within minutes of having a drink, although there are some people for whom it isn't a trigger. This is often used by people for whom it is a trigger to see if their CH cycle is over with the "beer test". If they can have a beer with no CH then it's over for that cycle.

For your family, it is almost as if they are in denial. Yes they will know in their heads that you've CH, but really in their hearts they will wish that it is something else. So it would be so much "better" if just throwing out some plates or something similar would fix it. This is pretty common, not just with CH but with many, many other things too.

As to people thinking up solutions, it is because they want to help. They will see something that has helped someone somewhere with some headache problem and hope desperately that it will be the thing that will cure you. Just about everyone here will have been told by well meaning people to try all sorts of things from acupuncture to needing more exercise and everything between.

It is totally up to you how you handle it as you will more likely know what will be best for you. Just try to understand why they are thinking this way.

You have been given great advice, and inisight, to the CH conundrum. As you have been told, people around you will want to "fix" you. They are sure they had what you have and through some miracle of diet, or exercise, or voodoo were able to get rid of it forever. What I do is thank them for caring, tell them I'll look into it, and when they ask later (if they ask) I tell them, "no, it didn't help, but thanks again." In the meantime, you didn't tell us what your doc prescribed. Care to share? blessings. lance

Thank you to all of you guys. I was just really upset last night. to Lance, as far as the drugs go:
right now I'm on a high dose of steroids to break the cycle
a "preventative" pill to stop it from coming back (begins with an a. .  its in the bedroom so i don't want to go grab it)
and the imitrex shots. WHICH i took my first one yesterday and i freaked out. it took something like 14 minutes to work and it got really bad before it got any better. . . is that normal? In hindsight, 14 minutes is nothing compared to over an hour. . . but in the moment i really thought that shot was not going to work.

Kat. wrote on Jun 23^rd, 2012 at 8:32am:


Triptans are powerful drugs so no surprise there are unpleasant side effects associated with the shots. But, generally the shots work faster than you describe. Don't know what you mean by "freaked out." Depending on what your deliver system is, it is still possible to receive the abortive effects of the shot while reducing the felt side effects using the imitrex tip at the left. You basically reduce the amount from .5ml to .25ml, cutting the amount in half and doubling the the life span of one shot. Would be helpful to know what that  preventative is, the one starting with "a." Is it amitriptyline? If so, my experience is it may help, but by itself is not an effective preventative. blessings. lance

Kat, your post is right on the money. 
to answer your main question, I found it best to just to smile and say "sure thing" to all the suggestions.  Everyone has an opinion on what you need to do to deal with the headache. 

i have had clusters for 20 yrs now, and just last week a friend suggested I go to a chiroprator...i was like...really, never thought of that... you mean i have been dealing with this for 20 yrs, seen neurologists, witch dr's, tried every drug under the sun,  and lug a portable o2 tank around and all  i needed to do was go see a chiro... brilliant.

they all mean to help, they all have no real understanding of the discomfort / disruption.  One thing i found that helps a little is to say that its a neurological disorder, and not a headache.

i think this might of been done on the old ouch board, but there was a list of all treatment suggestions made by people who were "just trying to help".  it was quite amusing.

Seriously, though, i am sorry you have to live with this, however, like you, i too was relieved when i was first diagnosed.  Then, I actually cried when i found this site, It was overwhelming to know i wasnt alone and going crazy.