confusion with multiple headache types

[sanderson]

Hi, Newbie here!

I have had migraine since I was 13 or so, which became chronic 12 years ago when I was 49ish. It has not been fun--eventually lost my job and my whole life is changed. Not a new story to all of you. I had a really great neurologist who had CM and was very knowledgeable and helpful. Unfortunately, she retired due to her CM last year.

About 4 years ago or maybe a little more, my headaches started changing, or sometimes they did. I kept getting these severe headaches that would wake me up at night that were not as responsive to the migraine meds. Eventually I tried oxygen and it worked! Hooray! However, no one is sure if they are really cluster headaches or some migraine variant. Oxygen doesn't help all my headache attacks, only a subset, which is what I call CH. Or since some of my doctors don't think they are clusters, I call them NPH for Nocturnal Pulsatile Headaches. However, they admit that they have CH features and seem to have some differences from my typical migraines.

In addition, I get headaches that seem to be related to superficial nerve pain--mostly occipital, that seem to be worse lately and, again, different than my other headache types. However, all 3 of these headache types have some overlap in symptoms.

I am not really sure what I am asking with this post. I guess I am wondering if others with multiple headache types have felt lost like I do and any advice would be appreciated. I do see a headache specialist via telehealth, but no longer have a local neurologist. There are no other headache specialists that are open to new patients in my state (Oregon) and I have tried to get into the Mayo Clinic and they aren't taking new patients either.

I know healthcare in our country is screwed up and I am a victim of some of that, as are many folks on this forum. Again, I know that CH is under-researched, under-funded, and that Clusterbusters does more for the CH community than any other entity. So, I thought I would become part of the community and see what I could learn. Thank you!

[BoscoPiko]

Well welcome @sanderson. Glad you decided to join us but sorry you needed to. Some of the symptoms you describe do sound a bit like CH. The "don't you dare try to rest attacks" are pretty common amongst us. I didn't notice any mention of unilateral symptoms? I see the comment about the occipital pain which I don't think is as common but definitely not unheard of. The fact that O2 worked for you (and that you have access to it) is great and is something that works for most cluster heads. Although many of us have experienced O2 not working during a full attack so I wouldn't let that rule out the possibility of CH. From my experience with CH, the pain is typically one sided with the daunting and very uncomfortable/uncommon side switch but it's usually always on one side or the other. I am not sure what you have tried to eliminate the occurrence of your pain but I would highly suggest the D3 Reg which you can read all about on here as it has been know to help with various headaches head attack types migraine included. Hope you get some answers and relief soon!!  

[sanderson]

Hi BoscoPiko,

Thanks for your reply, I really do appreciate it!

So, all of my "CH" are on the right side, although maybe twice in the last few years I swear I got one on the left....

They tend to start between 2-4am and I either wake up with them, or I wake up and feel fine but then roll over or turn my head and then it starts. Fairly quickly gets worse and up I go to get my oxygen. Pain seems to start on the back of my head near the neck, very pulsatile, and eventually goes behind my eye too. Only autonomic symptom I seem to get is R nose plugs up completely. Oxygen works most of the time. Occasionally I get them during the day, but usually only if I had one the night before. I get some lesser forms during the day sometimes that I am starting to recognize as possible shadows. With the full blown "CH" I have to get up out of bed because any contact with the pillow makes it worse. I find I am best off standing. So I do move around, but I don't feel super restless like it is described. Sometimes I have a little residual neck tension after the oxygen, and that makes me super anxious when I am trying to go back to sleep.....

I also get very photophobic, even more so than with the typical migraine. However, I know CH are supposed to last less than 3 hours and mine can last several hours if they are not treated, although that is just from memory because I never don't treat with oxygen or sumatriptan now that I have those options. I sometimes feel like the cluster headache triggers a migraine attack and that the full duration is really 2 headache types.

They tend to come in "clusters" although again maybe atypical. I'd say that about every 3 months or so, I will have a week or 2 when I have them 3-5 days/nights per week. Occasionally, I seem to get one or two out of the blue by itself and not in a "cluster".

Another atypical thing is that while these are very severe and worse than most of the migraine attacks I get (which may be partially because they ramp up so fast and the migraine usually gives me more time to treat it and is more amenable to treatment), they don't seem as severe as what I hear described for CH. I have not gotten to the point of banging my head on the wall.

I have tried oxygen for the more usual migraine attacks I get and it really doesn't do anything. 

In my reading, it seems that folks that have CH and migraine do have some overlap in their symptoms and a little more atypia. However, it also seems that there is a fair amount of variation in symptoms from one person to another. And I wonder if the neurologists are wanting all the headache classification parameters to be met too strictly for a diagnosis of CH. I know most criteria for any disorder are mostly so that the right candidates are chosen for research purposes, but in real life there are variations on all diagostic themes.

So, I guess I wonder if what I am describing sounds like CH to you folks who know what is what. That will help me decide on next steps with ny neurologist.

[Bejeeber]

I sure am no diagnostic expert, but the fact that your CH-like attacks do respond to oxygen, you feel them behind the one eye, and they are fast ramping makes them sound to me like yep, some CH really could be mixed in there with the migraines. 

[BoscoPiko]

On 3/25/2025 at 7:59 PM, sanderson said:

I also get very photophobic, even more so than with the typical migraine. However, I know CH are supposed to last less than 3 hours and mine can last several hours if they are not treated, although that is just from memory because I never don't treat with oxygen or sumatriptan now that I have those options. I sometimes feel like the cluster headache triggers a migraine attack and that the full duration is really 2 headache types.

You are not the first to report this unfortunately.. As for the duration.... i've had attacks that have lasted upwords to 6-8 hours. Not common, but again not unheard of.  Now that we know you are a rt sider (sorry) for this unfortunate experience.. it sounds even more like CH. I'm not a Doctor and have no definitive answers and can't even claim to know "what is what".. I can tell you that shadows are a really unfortunate offspring of CH. This conversation makes me feel like another member @mit12 with both migraine and CH might have some insight? @mit12

[sanderson]

thanks everyone, it just helps to hear that these things aren't necessarily outside the range of "normal"! 

the validation means A LOT, thanks!

[Jamesmsv]

You are definitely not alone, I also have a 'weird' migraine/CH co-existence that differs a bit from yours. If I'm in a cluster cycle I will have no migraines, however the final dose of a 3-dose bust will often trigger a migraine. If this happens then 90% of the time it means the bust has worked and my brain has flipped back to migrain mode. I'll then have a few migraines over the following months until CH rears its head again. So in my case it's a bit of flip-flopping, I can only recall one instance over the past 17 years where I had a migraine during a CH cycle.

The moral of the story is I guess that both these conditions are pretty complicated and not very well understood, and there is almost certainly come cross-over in causes that leads to our individual circumstances. By accepting our individuality it also opens the mind to expermenting with the different busting regimes/tactics and finding something that works for you if the standard regimes aren't quite working or that may go against current thinking. Good luck with your journey...