Cluster Headaches and 9/11 burn pit exposure?

[Paul B]

Hey all,

I'm new to the forum.  Been suffering from episodic cluster headaches since 2016.  This past year I think I'm transitioning from episodic to chronic as the spells have moved from a 6-8 week cluster period each year to a 2 week cluster period every couple of months.

I've read that many military personnel and 9/11 first responders/survivors are suffering from cluster headaches at higher rates. 

Does anyone know of any groups that are advocating for Cluster Headaches to be added to the Zadroga 9/11 Health and Compensation Act?   I'd like to connect with other members who were in downtown NYC and had exposure to the 9/11 burn pits.   

Thank you for your time.

Paul

[Racer1_NC]

I've messaged a member of the Busters that has direct experience with some of these issues. Hopefully he will be by to connect...

[CursedEyeball]

I was two miles away. (Just someone who lived in NYC. Not 1st responder or anything.)

The non-stop smell, the feeling of the smell coating your tongue, the thickness of the air… there isn’t a vocabulary for this… just no words… bleak adjectives like nightmarish and horrific miss the mark the way describing an elephant as grey does— there is no scope, no dimension, to capture what it was actually like.

 To think that the smell/taste/sadness/despair of that day/week that is still so visceral, could be connected to the life-ruining, non-stop, soul-crushing, relentless pain that I feel like I can’t endure another second, this pain that makes me want to rip my own eyeball out the way Van Gogh dispensed with his cursed ear, to think this pain could be directly connected to that 9/11 pain… I just don’t know what to say… I’m crying right now, but I am not sure if it is the thought of the connection between these two, or the fact that I ran out of o2 last night and I’ve been pounding my head against the shower wall for the last 12 hours.

[fattestfoot]

When I first heard about the burn pit exposure thing, I definitely considered the possibility they were linked. Did 3 tours in Iraq and definitely visited the burn pits a few times.

Was in Iraq 2004-2007, and clusters didn't really start until around 2014/2015 I believe (wasn't really sure what they were the first few years, so didn't log it well).

Nothing really to add to the discussion except to say that I'm another possible number if that were to be something tabulated.

[Paul B]

Thank you for your service @fattestfoot .  I would advise you and @CursedEyeball to consider registering with the World Trade Center Health Program if you had exposure to the disaster area in downtown NYC between 9/11/01 and 05/02.  I know too many people who have suffered from all types of illnesses related to their exposure to the dust cloud and burn pits.    @CursedEyeball described the acrid air that blanketed that area for 9 months post-9/11 so well.     

It's still unclear to me why Cluster Headaches have not yet been added to the Zadroga 9/11 Health Act so that people can get the help that they need.  I'll continue to research and post here if I make any headway.  

 

[Bohm]

@paul B, One of our Clusterbusters Board Members Joe McKay was a 9-11 NYC Firefighter and he is actively engaged in the burn pit issue.  You can find him at joem@clusterbusters.org or here is his Facebook page.  https://www.facebook.com/joseph.mckay.182

[Paul B]

Thank you @Bohm- I'll reach out to Joe.   All the best.