How do you know when to go to the emergency room? Today was the worst day yet and I was literally screaming for about 30 to 45 minutes and my boyfriend was downstairs ignoring me and I did not know when or if I could call an ambulance. I wasnt thinking clearly of course because I was at a level 10. I also asked him for an energy drink and he came home with an alcoholic beverage and told me to drink it and I was not able to read it because of the pain and turns out it was 6% alcohol. Then he made dinner and it was smoked meat and I am not supposed to eat smoked or preserved foods because it sets off the migraine that I have too. OMG I am so angry with him and really when do you know to call the ambulance? My O2 didnt help and I cant talk now because I was screaming at the top of my lungs for so long. He told me I was screaming that long. To me it felt like hours.  Please answer. Sophia

Agree with Brew's response. But I also read my response to your first post in the new folks section and I don't understand why the doc has put you on a 60-day drug free period. This is not something required by the nature of cluster and I wonder if they are some other medical considerations which you have not mentioned.

In any case, I see your only useful option is to inform the doc of your condition and press him for more active treatment now. If you go to the ER, print out the second article and take it with you. I assume that the ER staff there will be no better informed/trained than they are in the U.S. and so would not treat you effectively.

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
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Treatment guidelines from Europe

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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
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(Thanks to "cluster" for link.)

Sophia, I'm really sorry to hear you're having such a rough go lately. When I was first diagnosed, I was in the ER a few times, but usually if I had CH and a migraine at the same time. For some reason, that combo was a never ending nightmare, the pain would go on for hours.

Brew is right, you need to keep a supply of energy drinks, and a couple of ice packs, or frozen veggies, like peas, and anything else you need to fight the beast. Your boyfriend probably doesn't understand what or why you need these things.

I understand your frustration with him, but he could be feeling helpless, and doesn't know what to do to help you. Maybe when you aren't getting hit, you two can sit down and talk about it. Supporters have the hardest job, because they have to watch us and can't do a damn thing to stop our pain, and that hurts them.

Just a couple of suggestions... as soon as you START to feel like you're about to get hit, get on the O2, the sooner the better, and chug an energy drink, or even strong coffee, lots of it. I know you said the O2 didn't work for you that time, but try it again, and try the energy drink, it can take the edge off pretty fast.

If you feel like you have to go to the ER, print off the links Bob posted (when you aren't getting hit) take them with you, and tell your boyfriend you need to go. I wouldn't suggest driving yourself.  If he won't take you, call an ambulance. But, be aware of how long your hits last, and how far you are into it, by the time the ambulance gets there, and transports you, you could be coming out of it. That's the nature of the beast.

If you can, try to stay as calm as you can, and find something to meditate on, even just thinking of something, anything, can help take your mind off the pain. Move around, try the cold packs.

Tell your doctor you need some sort of preventative, and another abortive, maybe a triptan, and you may need to TELL him this. Some docs have no clue.

Well, I -disagree- that it's completely your responsibility to deal with KIP level 10 hits when your bf is in the house. OF COURSE he should do all he can to help you, beginning from trying to educate himself about cluster headache! Spontaneously, without you urging him to do it. And at least come and ask if you need some help. God knows that if my loved one would suffer so, I would. I'm sure you are ready to provide the answers, if he will ask.

That being said, sometimes people do think though that people in "embarrassing" conditions want to be left alone. Maybe your bf thought that? He could have also generally felt helpless and the cold beer could have been his way to help - it is usually a nice gesture. I think you should clearly talk it through with him, but then again, you probably already have?

Also, sometimes the beast comes quicker and a bit unexpectedly. Just yesterday I was struggling with my liquid oxygen system, which I had been too stupid to open from the packaging before a hit, and was in full KIP 9, writhing on the floor and crying from the pain before I could get it to work. My guy came home from just taking the garbage out and wondered why I didn't have the ice pack there...but that was just it - the pain was just too great for me to even get to the freezer. We're all human. And I'm pretty sure if he hadn't given me the ice pack I'd have kicked his ass gazillion miles from Saturn after the hit

Have you tried the ice, Sophie? I'm sure your doctors allow you to use it, even when they deny other meds for 60 days. I have a big chunk of ice in a plastic bag which I just press against the cluster side of my head during a hit. It managed to reduce that KIP level 9 hit to a much more manageable pain in a matter of minutes. Heh, the ice has actually already partially melted and molded to my head

- Wishing you better times soon!
         Rosa

deltadarlin wrote on Jun 16^th, 2008 at 7:46am:

I don't believe you're disagreeing with me. Where did I say it wasn't his responsibility to support her when she was having a headache? I said it was her responsibility to have the abortive tools handy.

If someone is going to ask their boyfriend to go out to the store and get them an energy drink WHILE they're getting hit, that person should pretty much expect anything. If you stock the fridge with your chosen energy drink, there's a much greater likelihood you'll get what you need.

Believe it or not, there are some people who are incapable of being supporters. That said, I think it would behoove you to have a heart to heart chat with him, regarding your affliction, and how he can help.
I also believe you should be prepared for a hit as best you can, as your arsenal for fighting is non existent. Preventing, an abortive that works for you...and 02............
Finally, some coping mechanism......meditation, focus, something to help remind you this will pass.
I hope these posts will help you. These are smart capable people who suffer as you so.some with great supporters, some with none- ALL ready to help any way you need.so, please, continue to ask, continue to cope, and drop in any time, OK?
Wishing you PF,
Cathi

My apologies brew, I didn't realize that she'd asked him to go *out* and get her something (I misread it).

But, read your first sentence, "none of this is your boyfriends' responsibility", that's where I got *that* from.

WOW some of you have a great support system set up. I am still working on getting things set up to cope with the demon. I have been newly diagnosed and still learning about all of this. I honestly appriciate all the good advice. BTW I PASSED MY EXAM!!!!!!!!!!

Geez....there is nothing I hate more than hearing about the lack of support that some of us receive.  Really pisses me off.  However, Brew is right.  Especially in a situation like yours.  Get yourself a boat load fo the energy drinks and do not give up on the 02 just yet.  Ice cold showers at times will abort an attack for me.  A hot shower will soothe the pain.  Try doing some push ups til your arms are about to fall off.  This can abort an attack as well.  They are my desperate measure defenses against the beast.  But do not give up on the o2.

Johnny: Tag, you're it.

It's funny how this thread about "should I go to the ER" has turned into the best "how should my loved one deal with my CH" thread I've seen so far.  I wish I had read this when I was first diagnosed.

My wife may fall under the "can't be a supporter" heading, but the jury's still out.  She honestly seems unteachable sometimes, and says things like "why don't you just try to come to bed?" when I'm ramping up with a hit.  She asks me at night "can you drive the kids to x,y,z tomorrow" and gets upset when I say "I won't know until tomorrow," when she knows I never get more than an hour between hits.  She plans dinners with friends and family in the evenings when I'm sure to get back-to-back hits, and gets frustrated when I have to bail out.

I think dealing with "supporters" takes as much practice and finesse as learning what tools will help with the hits.  I've learned with my wife to stand firm on things I can't do, and let her deal with that reality in her own time.  I've also learned that (with her) it's best to leave when I'm in pain - to another room or the back yard, or my car with the AC blasting in the driveway.  I have to agree with Cathi, that not everyone can be a supporter, at least not initially.  Maybe if you're dating that's a good sign to move on.  With my wife, after 11 years of marriage and 2 kids, I just remind myself that she didn't sign up for this any more than I did, and though she accepts it she may not be built to handle it.  If she isn't built for it then I have to accept that, and hope that over time she'll learn.

Sophia,

Sorry about the drug addict label.  I've found, to my disappointment that many friends and family who can't handle this beast don't just abandon you - they become very cruel.  If they didn't find a way to blame you, then they wouldn't be able to face their own weakness and indifference.  When I took narcotics, I just gave them to my wife to hide, and she would pull out a few days worth at a time.  That way noone "suspects."  At one point, her brother-in-law tried to justify his own drug abuse by pointing out that I take pills, and they tore him a new ass-hole.

Finally, I think when you're at the point you are you should definitely consider busting (clusterbusters.com). PM me if you have any questions.