Hello all!

I am so glad I found this forum. I have nobody in my life who I can talk to about this. They all assume that my headaches are the same thing as a migraine and they really don't understand just how much worse these are. I am not the type to really respond to pain too much. I don't complain and I am never dramatic about my health, but everybody around me makes me feel like I am being dramatic about this and it bothers me a lot. The pain is way too intense to be treated like a hypochondriac.

I have to say that my husband is as sympathetic and as understanding as he can be about my CH episodes. He is the only one who really understands just how much pain I am in and that the pain is way worse than a migraine, but he still doesn't really understand. He can't commiserate with me, and I guess that these things are so traumatic to me that I need some commiseration. So, I was happy to find y'all!

I got my first cluster attack back in 2007. I had no idea what it was and I thought I was going to lose my right eye. If not from the pain, then from me actually poking it out myself. I had never felt so much pain before and it was horrible. It had started with what I now know is a shadow pain earlier in the day and I thought that it was just a tension headache. I get lots of tension headaches on the right side of my head. I took my normal advil thinking it would go away and it just got worse and worse until it reached a full cluster attack and I wanted to die.

That was my introduction into this wonderful rabbit hole world. Luckily, I only get a few episodes a year (around the season changes) and they only last a day or so. I feel very relieved about that when I read about so many of you who have them chronically for months or even years. 

Well, I had an attack last night as the new season is upon us. It wasn't a Kip scale 10, it was more a 7. But I had a level 3 to 5 shadow pain all day and then the rest of the night after the 7 episode went away. Of course, my right eye was watering like crazy and here is what is weird, I had horrible nausea. This happened with my last episode, too. I never used to get nauseous with CHs but now it seems that I do. And I'm talking very uncomfortable, can't eat a thing, feel like I am going to puke everything I ever ate up type nausea. When I got it last time I made myself puke even though it made my eye hurt worse, but I had to get rid of the nausea. Well, it didn't do a damn thing. I puked, made my eye hurt worse and then the nausea came right back, just as bad. I couldn't make myself puke again.

I don't understand it. The pain is bad enough, but when you add nausea to it...I just can't with this anymore. I have a pain level 1 shadow today and my nausea is much more manageable, but I am feeling scared that my episodes are always going to be accompanied by that horrible nausea from now on. I am on the verge of tears all morning.

Anyway, I always feel as if I have had some sort of traumatic experience after an attack, so thank you all for being here.

ETA: Oh, btw, I live in Toronto, ON and I am a 36 year old female (really wish that all of the data would stop saying that it is rare for a female to have these because it really stops the doctors from wanting to diagnose the ladies and it interferes with our treatment <end rant>). Sorry, forgot to include those things. Thanks!

Thank you very much for your response, Doctor. I appreciate what you are saying. I have been to several doctors but none of them knew much about CH and what they did know hindered their ability to diagnose me as they insisted that it is not something women usually get. I finally got a diagnosis, but none of the treatment works. I have tried triptans, prednisone, oxygen, caffeine, everything when I start to feel the shadow pain but none of it works. I did notice the Vitamin D therapy on here and I look forward to trying that.

The Headache and Pain centres here operate independently, but they are incredibly expensive so they aren't really an alternative for me right now.

Is my description of the emotional burden of these headaches unusual? I thought that everybody felt them as traumatic. I don't understand how pain that great wouldn't be traumatic. If I am coming off overly dramatic here, then I really don't know where else to turn to for camaraderie and commiseration when dealing with this sort of hell.

I know you mean well, Bob. But I don't think that you read my posts very well. And I know that I am not the only clusterhead who has tried all of the normal medications and had none of them work for me. I also mentioned that I have been officially diagnosed with CH and have had all of the other things it could be like an aneurysm ruled out. That fact that I get them so rarely makes it a little more difficult to experiment with treatment.

As I said before, I know you are trying to help, but your answers have made me feel more frustrated and alone, like maybe I made a mistake trying to get some camaraderie here.

The distress from these headaches don't dominate my life. Again, I would like to reiterate that I only get them a few times a year, however, when they do happen, and probably because they happen so rarely, they feel traumatic because of the extreme pain. I wouldn't call that a hindrance or dominating my life but I would call it a normal response and I assumed I would find understanding minds here.

I have seen on the board where you have been very helpful to a lot of people and are very well liked. I know you are a good person who means well, but you couldn't be more off base with your replies to me because it sounds like you only skimmed my posts and as I am still raw from coming off of an episode, it is quite frustrating.

Hello, SeasonalLady, and welcome. We do indeed understand the trauma you experience, and I for one am thankful on your behalf they are occasional. Having said that, it does not minimize the pain you feel when the occasion arrives. We do indeed commiserate but we tend to focus strongly on effective interventions. Knowing what does not work is half the battle to finding what does. You wrote:

Quote:


As Mike said above, we often hear "I've tried everything" when what is really meant is I've tried everything in doses too low to be effective for CHs. We learn by sharing our histories. Would you mind telling us what doses or levels you have tried?

Also, the presence of nausea is indeed rare for CHs. I have experience nausea strictly from the pain of a 3-6 hour screamer (also rare, thank God) but not from the "routine" CH. Still, something like metaclopamide might help. Don't know. Hope you stick around. God bless. lance

I appreciate the other feedback and support, thank you. Maybe I am just not communicating myself very well. And of course when I say that I have tried everything I was being a bit hyperbolic because I just came to this forum so there are obviously things that neither my doctor or I know about, like the CH seeds. I meant that I have tried all of the normal routes. I am really excited to try the CH seeds and the vitamin D, which is something I probably need anyway. 

Here is the thing, though, as I said before, my CHs happen so rarely and only last a day, so it is hard to really know if something is working. Maybe I didn't communicate that point well enough.

I do realize that my CH episodes are not normal, but I also know that everything else has been ruled out that it could be and my doctor is pretty confident in her diagnosis. The way mine work is that I will wake up with a shadow pain sometime during the season change and at first I will be in denial. I will tell myself that it is just a tension headache (which I get quite often) until the advil doesn't work and the shadow pain crawls up to a 5 (which it always does) and then I have to face that a CH episode is actually happening. I always try to down a strong cup of coffee or an energy drink or at other times have tried the various treatments that my doctor has prescribed. I will then always get an attack that is between a 7 and a 10 that lasts for about 45 minutes. I get the droopy, watery eye, my nose runs like a faucet and my ritual is to push my hand against my right temple (it is always my right side) and rapidly rock back and forth. This is the only thing that "comforts me" if you can even call it that. It does nothing for the pain, but it is what my body automatically does when the pain gets past 6.

Then the pain resides and it takes me down to a shadow pain of 3 to 4 until the next morning. Sometimes I will have what I call a hangover shadow pain that can get up to a 3 for the next day or two but then it is completely gone. until the next season. Every so often (and I mean like every other year) I will get a day of just shadow pain that is a level 5 but doesn't go into a full attack and that will last a day or two.

I do realize that nausea is not common with CH and as I said before, this is only the second episode that I have had nausea at the same time as the CH. I wasn't asking for anybody to tell me why, I was hoping to find out if anybody had ever experienced it themselves or if anybody had heard of it happening. Again, maybe it was just the way I communicated it.

I understand where you are coming from in wanting to make sure a person doesn't have anything more serious but I don't know how many times I can say that I have an official diagnosis and that everything else has been ruled out. I am coming from a place where I made this post as an introduction and was ready to settle in and read more about treatment options I had not heard of. I didn't expect to get met with second opinions and having my treatment questioned right away. I mean, I feel like maybe I should swipe my health card before I post from now on.

Seriously, though. I appreciate where you are all coming from and I am glad this forum is here. You all offer a great service but perhaps my CH episodes are too abnormal to really relate to anybody here.   

Thanks Potter. You're a true help. Why didn't I think of that?

I think that being on this forum does me more harm than good.

Good luck to you all.

I feel like you're putting us into a double bind. On the one hand you tell us the pain you feel is traumatic and causes nausea and does anybody else feel that way? and when we respond "yes" to the trauma but "no" to the nausea and offer help on what does work for the pain, you want to skip town. If your CHs morph (as they tend to do) into something more than one day a year, drop by. You'll be happy we are here to help you manage the attacks with veteran advice on what does and does not work. Lastly, don't bust (the RC seeds) for a one day a year headache. That's a powerful weapon to be used on so small an inconvenience. lance

When someone comes to the boards telling of how much pain they are in, many take the time to be as helpful as they know how to find a way to help.  You are in pain... Bob tried to help. 

Isn't that one of the reasons you came here?  Not only to vent but to explore ways to deal with or even control your pain? 

I too hope you stick around.

PF wishes,

Jeannie