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?

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

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

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 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