Unsure about next steps?

[TheChinBurglar]

Hey, new to the site so I hope this is the right place for this post. 

I seem to have had the opposite initial diagnosis experience compared to a lot of people I've read about on this board. About 3 years ago I saw a PCP about my headaches for the first time and was given a diagnosis of cluster headaches. I was in pharmacy school at the time and had been doing a lot of research on my own about headaches.

My headaches are always one-sided with pain behind the right eye/temple. It's constant pain that gradually gets worse and gradually fades away and feels like a stabbing pain. I have no nausea or major sensitivities to light or sound during the headaches. They last around 30 minutes to just over an hour. My nose will run about half of the time and rarely my right eye will water. I also had pain radiate to one of my back molars but two dentists saw nothing abnormal or any signs of TMJ.

All of this seemed to fit a CH diagnosis pretty well, but I only had these headaches maybe once a week initially. I've also seen descriptions and videos of people suffering from CH and (thankfully) my headaches don't seem to be nearly as painful. I've never had more than one headache a day and the most frequent they've ever been was one a day for about a week. I've had multiple periods headache free which seem to be a couple months at a time with absolutely no headaches.

I just started having headaches again after 2 months of having none, but I've noticed a lot of what feels like sinus symptoms this time. I've never had any imaging or testing done of any kind and I have only taken Excedrin and sumatriptan (infrequently) for the past 3 years. 

I could really use some advice about what to do next. I've read cluster headaches are partially diagnosed by exclusion and I don't feel like I've excluded many other possible diagnosis at this point.

Sorry for the lengthy post! 

[Siegfried]

Hello TheChinBurglar,

A few things to consider here:

First and foremost, try to consult a headache expert in order to get a diagnosis. They are the best placed to do that as they see over thousand of headache patients every year and they know when to consider you symptoms as CH or something else. But in order to get a good diagnosis, you need to collect accurate data. So, keep a headache diary where you write as much as information down about your headaches. In addition, film yourself during an attack... your behavior will tell a lot about the type of headaches you have.

Second, don't worry too much about not matching all the boxes and not screaming and shouting as much as this or that YouTube guy. I think your symptoms match CH relatively well. But it is important to get an MRI done to rule out any underlying condition. That is key ! If that is OK, they you will fall under one of the primary headaches. It is then up to the doctors to figure out which one. And I can assure you that, if they are real headache specialists, they know what they are doing and you have to trust the outcome and I know what I am talking about. When I got diagnosed in 2017 my CH did not look very much like textbook CH at all - just "some symptoms of CH" as they described it. But now 1,5 years later, they proven to be right and I still thanks to them every day they gave me oxygen back then, otherwise I would have ended up as a walking bag of zolmitriptan

All the best !

siegfried

[jon019]

Hiya TCB...welcome aboard!

Siegfried is absolutely right....great points.  One of the frustrating things for clusterheads: we have the same thing.....yet we're all different!  Find yourself a headache specialist to sort it out... and don't dismiss the possibility of multiple headache conditions. Different treatments work for different types...so ya collect the ones that work. I'm shocked (dismayed) you apparently have not been prescribed  OXYGEN !?. LONG time first line primary CH abortive, well discussed, researched, and approved by the medical community...the right flow (at least 15 LPM), the right mask (non rebreather), and the right technique....and lives have been changed and saved. Look into Vitamin D3 regimen also...….

Best

Jon

[TheChinBurglar]

Thanks for the replies  Siegfried and Jon!

I believe I found a good specialist to try on the board here. Might have to wait until the new year when I'll be switching to a much better insurance plan though. 

I do think that imaging will be an important step for me if only for piece of mind. 

I was a bit surprised as well that neither physician I saw really mentioned oxygen as an option... Maybe with how infrequently I was having headaches at the time they didn't think O2 would be appropriate. I have always been interested to see if it would help. If it did that would help confirm the diagnosis a little for me I guess.

Vitamin D supplementation is interesting. I don't believe I've ever had that lab drawn (I'm generally healthy and haven't had much besides basic lab done). I did have unexplained high cortisol levels a couple years ago. An endocrinologist did a workup and found nothing significant. I ended up blaming this on an irrational fear of giving blood, but I have seen some links to cortisol and cluster headaches before.

Thanks again for the input guys!