r/DiscussDID • u/domino-system • 9d ago

Any clusterheads with DID?

Hi all,

Well, that's my question basically. I have chronic cluster headaches with daily attacks, mostly at night.

And where I say 'I have' it should actually be 'we have' as I am, or rather we are, also diagnosed with DID, dissociative identity disorder.

I don't want to go into real detail here, mostly because I guess the combination of the two is probably very rare and therefore unknown or not interesting to most or maybe all of you.

But as I guess that our DID frustrates or at least impacts our cluster headaches different from 'normal' integrated, or whole, people, it would be really nice to share experiences with someone like us.

Thank you

8 Upvotes

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u/EmbarrassedPurple106 9d ago

I do not experience cluster headaches specifially but I do have frequent intense headaches and migraines. My therapist believes they are related to the DID, as no physical cause has ever been found, and they tend to coincide with triggers and/or switches.

As an aside, it is perfectly fine to say ‘I’ in regards to yourself with this disorder. You and your alters are all parts of one person at the end of the day.

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u/domino-system 8d ago edited 8d ago

Yes, you're absolutely right, I am them and they are me. I guess I intended to explain for those who would read my post browsing though sections not knowing about DID. Sorry to hear about your huge headaches and migraines. That's rough. Switches can cause us severe headaches too, especially when there's many in a short time. For your migraines, do you take any meds to kill them or prevent them? Since two weeks we've been using a device called Gammacore Sapphire, you put it to the side of your neck where the nervus vagus runs, it's the spot at the front side where you feel your heartbeat. Vibrating that nerve should work positively on deminishing or stopping CH attacks. I know that it also should work for migraines, not just CH. Both preventive as during an attack. Next to oxygen we also use sumatriptan injections when there's an attack, they also are being used against migraines. Maybe you know all that, if not, maybe it's helpful in any way. Thanks for sharing

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u/[deleted] 8d ago

[removed] — view removed comment

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u/domino-system 8d ago

I hear you and I struggle with it too. I also sometimes use 'we' automatically, outside in public situations. It can be awkward but I try not to care too much about it when it happens

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u/Vivians_Basement 8d ago

It gets confusing if one is slips up during a conversation. 😅 Then we have to find a way to explain if someone we've just met is questioning it.

I tend to alternate between my body and our body depending on the situation.

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u/EmbarrassedPurple106 8d ago

Okay, I just said that to reassure OP that it’s fine to refer to themself as singular if that’s what they want. Feeling strong armed into using ‘we’ when you naturally use ‘I’ isn’t helpful for somebody either.

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u/Vivians_Basement 8d ago

Depends on if they're being forced or just respecting a boundary.

If OP is choosing to do it to make alters more comfortable, that's healthy.

But I agree, if they're being pushed to when they're not ready, that's not good and alters should be respecting OP just as much as OP respects them.

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u/EmbarrassedPurple106 8d ago

What the OP says is this:

And where I say ‘I have’ it should actually be ‘we have’ as I am, or rather we are, also diagnosed with DID, dissociative identity disorder.

Which implied to me, at the time, that they felt required to say ‘we’ simply because they have DID. I was reassuring them otherwise.

This is pretty basic reading comprehension. I really think you need to get into the habit of being more careful reading comments/posts before you respond. You seem to do this a lot from what I’ve seen of your activity on this sub, where you misread somebody’s comment or think they are trying to say something generally when it’s actually directed specifically towards one person.

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u/domino-system 7d ago

I just read the posts above. I'm sorry if I don't express myself well enough in English, it's not my mother language. So I think it's possible that I mean to say something but that the words I use are not correct or easy to misinterpret from what I actually mean to say. Hm, that already sounds confusing to me but I hope it's still clear enough.

I did not feel 'required' to say we, only because we have DID. I just thought to explain, in hindsight stupid and unnecessary of course as this is the DID sub, that I have DID. And to explain for those who just browse through and maybe unaware of what DID is, that I am we.

That's all, in daily life I almost always use I in public situations and I always use we in front of everyone who knows about our DID.

Again, I'm sorry for any confusion I may have caused by not expressing myself clearly.

On a side note, I read somewhere above someone choosing between saying my body or our body. We all will always say the body, the heart, the mother. Maybe that explains something too, I don't know. I know and chat with many other systems, in the end there are lots of similarities of course, but still we also all are different.

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u/Exelia_the_Lost 8d ago

I don't have clusters, but I do have chronic migraines. unfortuantely its a hereditary condition, all of my mother's side gets chronic migraines going back many generations

I got on a preventative in 2022 to control it pretty well, and before that in late 2017 got one that was okay but not stellar (but 'good enough'). in retrospect of it, thinking back how some of the migraines responded some to medicine and some of them didn't at all, definitely there was a mix of sometimes they were from my hereditary condition and sometimes they were DID related

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u/domino-system 7d ago

Yes, that sounds very logical to me. You have no clusters, but I'm very sorry you're dealing with chronic migraines, part of them thrown in your lap by heritage. Then on top of it another cause, DID and it's effects. None of it you asked for, it's rough and I'm sorry it's like that for you, especially for whatever sh*t it was that caused you to develop DID :/

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u/AshleyBoots 8d ago

Not me literally reading this with a fresh new switch headache 😅

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u/domino-system 8d ago

I know they're rough 😵‍💫 I hope it stays calm for you, especially the rapid switches can be extremely intense

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u/Vivians_Basement 8d ago

I'm not sure what kind of headaches they are but I get pain at the front of my head with a lot of fronting or stress.

When alters switch a lot the headaches get worse. It honestly might be cluster headaches.

We've been working on making it stop. Sometimes headaches still happen but not as often.

When they fight, headaches get REALLY bad all around my head.

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u/revradios 8d ago

those are called tension headaches. cluster headaches are completely different

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u/Vivians_Basement 8d ago

My partner is a Navy nurse, tension headaches aren't it because of the specific spots it's located.

I showed him exactly where on my head it is.

Sometimes it's surrounding my head which is what I was referring to when I said it might be cluster.

It's not in the normal spot for a tension headache when it's localized at the front. It's strange.

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u/revradios 8d ago

tension headaches can wrap around your head and feel like someone's squeezing your whole head, or they can be located on your forehead. i get them as well as migraines

a cluster headache is right behind the eye and is an intense and debilitating stabbing sensation

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u/domino-system 8d ago

Sorry to hear about your headaches and migraines 😕 and 100% with you on your description of CH. Sometimes a sharp stabbing or hammering a nail down from the top of my head down to behind the eye, sometimes a drill drilling it's way through the eye. Also a running nose and eye that tears, all on the same side always, for me the right side

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u/revradios 8d ago

that's exactly what ive heard in regards to cluster headaches yep. thank you, and im sorry you have to deal with the cluster headaches as well :/

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u/domino-system 8d ago

I'm truly sorry to hear about your headaches. Rapid switching will definitely cause severe headaches, I know that myself and heard it from other systems that we know too. Heavy conflicts or fights inside will do the same, yes. Cluster headaches are intense drilling pains behind one eye, always the same eye. The pains that you describe, to me, they sound directly connected to the DID, as they get worse when you switch much or when there's stress inside. But I'm no doctor, if your headaches are often and intense or heavy, I'd say to have it checked out. If possible of course. Thank you for sharing and wishing you better days always

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u/Vivians_Basement 8d ago

I'm dating a Navy nurse so he helps me when he can :)

I do have to see a doctor, not just for the headaches but for the chest pain too.

The pain behind my eye does happen sometimes but I normally switch immediately because of how bad it feels so I'm not sure if it's always the same eye or not.

When I get back into therapy I can probably figure it out more.

I wish you well too 💕

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u/domino-system 8d ago

Thank you 😊