I've posted here before, often with months or years in between. I'm 31 and have had 6-8 attacks of 60-90 minutes per day since I was 18 years old, before that I was cyclic since early puberty. I've tried pretty much every treatment, but none have really worked sufficiently.

How do you other chronics deal with life in general? Can you maintain a normal social life and relationship? And how does your partner handle things?

For years now, I've rarely mentioned the pain to anyone. Even though it has severely impacted my professional and social life and I think about ending it all on a regular basis, I never complain and never use it as an excuse. But I am starting to ask myself whether that is a good thing.

Especially where my wife is concerned, as she does not seem to take my condition in account at all. She has her own ailments -sciatic, metabolic issues- and I help her with those by being understanding and assisting her with pretty much everything when she is suffering. And she talks about them constantly. Literally hours of complaining every day. But I never seem to get any consideration. She simply will not understand me being in less of a sparkly mood at a party when my head hurts so bad I want a train to ride over it and put me out of my misery. She will not understand me being a bit quiet now and then during an exceptionally bad attack. When I am in obvious pain, she never asks if I can manage, she will just ask if I am angry and/or act as if I am sulking.

I have tried on occasion to explain just what it is like to live with this, but she sort of tunes out and says something like it's no excuse for my "negativity". And even when she sort of  looks like she might get it, nothing of that remains 24 hours later.

Now even though I love her dearly, I know she is extremely self-absorbed... so is there a way to make her better understand?

Hi Henker,
Sorry to read the beast never gives you a break, being
a CCH sufferer, i can't imagine what that would be like
without proper support. But, just hang in there and read
everything you can here. Maybe you could list all the
meds and treatments you have tried so far. Then 
maybe we could help, in getting you on the right track.

Hoppy.

With all due respect please check out my blog and my perspective of living chronic.
I have several topics on this subject in my blog. Not trying to tout my own horn but I write about this on a regular basis.
Blessings

Would your wife be willing to read some of the Supporters Corner comments on this website?

Self-absorption is a tough nut to crack. Might try to get her to voice how SHE has a hard time dealing with you.

Then "wonder" if it would benefit both of you to "chat" with a marriage counselor about how to live/cope with you. That is, you become the "bad boy" until you both can get into a neutral territory to work on the real issues.
===

In the meantime, can we help with your Cluster stuff?

Do not really need treatment advice at the moment. I read the board here often and as a medical consultant I keep up with current developments. After years of having exhausted a laundry-list of drug cocktails, alternative remedies and a whole mess of neurologists, I have resolved to handling the affliction without chemical assistance. Not because I have anything against it, but because it doesn't work for me personally as I haven't found adequate relief through drug therapy and I have developed liver/kidney problems as a result of the many years of experimentation.

What I need help with is having some inkling on how to deal with daily life and relationships -friends and family as well as partners-. Apart from the fact that it is not exactly easy to live in constant pain, it has marked my personality so deeply that even if all physical problems would go away tomorrow, I would still be left with tremendous difficulty living.

This may be the wrong forum, but I figured I could talk to someone here without having to explain the nature of severe chronic pain.

In your years of exploring have you considered that you have a cluster-like syndrome? I continue to be surprised at the number of new entries I find on PubMed with this as a title.....


Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

I hesitated to respond to this post as I question my qualifications. Unlike Bob Johnson, who is an experienced, now retired professional, I feel a bit out of my element. On top of that, I have a dream supporter. One who found the original streaming CH board, and is responsible for most of what I now use for CH. All that being said:

As much as we all like to be strong, "Live our life between the hits", "not allow the beast to run our lives or define who we are", the fact is, it has a substantial affect on our lives. The fear that's always there, sometimes buried deep, sometimes right on the surface, the embarrassment of getting hit in public, or having those we love watch us flop around moaning and yelling. It's why I spend so much time on the board, it's always been a form of CH therapy for me. My closest friends are people who live thousands of miles away from me, people I met on this board. Jimi, Brew, people who know the  most intimate details of my CH life.

I guess my only advice I'd offer up is to jump in here with both feet. I don't know why your partner won't work to understand CH, it's damned scary, maybe just too scary for her to even begin to wrap her arms around it. But people here get it, whether it's the funny posts about our "hall of fame hits", or just knowing there's someone you can call when you're at the end of your rope. It's been the best therapy I've found.

Wishing you peace.

Joe

I am also a chronic and have been for many, many years. I also am hit several times a day and during the night. We have noticed, and my own experience validates this, that even chronics have high and low cycles. During the high cycles I am completely self-absorbed attempting to deal with the pain and the interruption of an attack. During the low cycles I have some time to consider what my pain and self-absorption are doing to my family. It's then that I open conversations and realize while I am struggling to live with the CH they are struggling to live with me.

I have to admit I don't understand your reluctance to share various failures and successes with preventatives and abortives, though. A lot of stuff hasn't worked for me, but some of it has. At worst I am always on the lookout for new approaches since a possible med or approach brings hope back into the picture for me. And hope is a vital element in keeping one sane. Open up a bit to us, why dontcha? blessings. lance

hi! im in the same boat ,have been for 20 years ,i have better and worse moments ,and there really is only hope that i hang on to ,that theres gonna be some sort of new med that can free us all!,,don' :) :)t lose hope ,,stay strong!