It's Been Awhile/Updates/VA Disability

[charles87sf]

Hello my fellow clusterheads! 

It has been quite a while since I last posted on here. I don't login in regularly unless I'm in a cycle and need the additional support and information and encouragement. Thankfully, I've been relatively cluster free for about a year now! I just wanted to share a few things that's happened as of late:

1. Emgality: I'm sure it doesn't work for everyone, but Emgality has been VERY successful for me. I begin taking once a month shots as soon as I go into a cycle and I'll maintain the routine until the clusters stop. What used to be 4-5 attacks a day(at it's peak), on Emgality they've reduced to maybe 1-2 a day at peak. While still unbearably painful, the reduction in frequency is a joyous thing! 

 

2: I began having clusters while I was still in the military(honestly didn't know they were clusters until later... Didn't even know what clusters were then). I may get some rebuttal for saying this, but this is simply my experience. I suffered a head injury in the military and the clusters began almost immediately after that. Perhaps there's a link between clusters and head injuries, or perhaps it was simply coincidence. Either way, that's how it went down. For anyone in the military that began having clusters while in, and you have it documented, I was awarded VA disability for my clusters. IT IS POSSIBLE!! The following was the verbiage used in the final decision "Service connection for cluster chronic headaches as secondary to the service-connected disability of insomnia with traumatic brain injury". The reason I let my military brothers and sisters know this is because I know treatment can be expensive (oxygen, emgality). This now being a VA disability rated concern, I can now see the VA for clusters specifically and I can get treatment through the VA. 

Anyways, I hope this information helps someone. Keep fighting the good fight and know that you're not alone! Reach out to me any time if you have questions. 

[karensitas]

The info about the VA and how you got coverage is super helpful for vets who might be dealing with the same thing. I didn’t know head injuries could be linked, but your story makes a lot of sense. Appreciate you taking the time to post this.

[jon019]

....re disability, vet or not, it is critical to list any comorbidities...the award decisions can be so arbitrary that one seemingly insignificant one may be the key to success. i got disability for a serious but non fatal illness partly because my doctor listed the potential mental health issues caused by the disease that we had discussed. the SS approval letter specifically noted these potential effects as having significant weight in determining qualification. i will be forever grateful that my PCP had documented EVERYTHING...and was willing to sign off on the need for disability. find an advocate doc....its JUST like we need for CH.....

[charles87sf]

On 7/21/2025 at 5:41 AM, karensitas said:

The info about the VA and how you got coverage is super helpful for vets who might be dealing with the same thing. I didn’t know head injuries could be linked, but your story makes a lot of sense. Appreciate you taking the time to post this.

Of course! I think we can all agree that any and all help is appreciated! If there's anything I can do or say to help even one person with clusters, I'll certainly do what I can! 

[fattestfoot]

I generally only check these boards once a year, but I thought this was an interesting time to chime in.

I didn't start having clusters until about 2015, and I left the Army in 2008. I also didn't file for disability until last year (January 2024). I did a lot of research before filing my claim, and from everything I could tell getting clusters linked/approved was almost impossible (I found lots of appeals denial letters which are public record).

I had an awesome C&P examiner, and after discussing everything I believe she wrote up a very convincing argument to link them, although I don't know exactly what she wrote. When I filed, I believe I had it as secondary to PTSD. But I did also mention that I had a migraine (my first and only) at the very end of my service. I don't remember the exact details, except that I know we had already moved off base because it started on the drive home from base right before I started terminal leave. In retrospect, it's very possible it was my first cluster attack, although it was also a one off event. All that to say, I never saw anyone in the military for it.

Additionally, a big thing with any headache for VA is it needs to be debilitating, and frequent. This is where I think a lot get denied, because episodic clusters won't get rated (almost everything uses migraines as a template). Luckily (or unluckily?) for me, when I was filing, I started seeing a therapist for the PTSD which caused me to have the longest cluster period I've had, lasting 5 months or so. The examiner decided that even though 2015 until 2023 had been episodic, that I was, at the time of the examination, chronic. I also made it clear that cluster headaches prevented me from having a normal work schedule, because once they come on that's it.

In the end, I was rated at 30% for them, which I think is a miracle.