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.

I've decided that there is no "typical." From 2014 - 2018, I had them every September, for about 30 days. 2019 suddenly went to a November/December cycle. Respite in 2020 led to a recurrence in 2021 back to September. But then 2021 was December until January 2022. All of those lasted 4-5 weeks. But now here I am in 2024 with a cycle that started the end of April. It's now 2 and a half months later and still going strong. I've basically thrown my hands up and just said I'll deal with them I guess.

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.

I retired a year and a half ago and thought that maybe moving to a more southern latitude would help. Unfortunately it didn't. That said, retirement may have helped. I didn't get a cluster last fall, but then again, I also didn't get one in 2020 when I was working. Father-in-law passed away in December last year and that triggered one ; the first time I've had a December cluster.

I'm on day 4 of Indomethacin, 150mg a day (3x 50mg). So far, I'm still getting clusters, but I don't know if it needs time to work. My guess would be no since it's an NSAID. He didn't prescribe me anything else to take with it. I'm going to continue taking it through this Friday for sure, which will be a full week, and also coincides with my follow-up with the neuro. But because of how harsh it is, I'm considering stopping it at that point unless I see a complete remission of headaches. Part of the problem I have with a lot of this is I may be coming to the end of this cycle (although who knows, because this is the first November/December cycle). So if it goes away, it may have absolutely nothing to do with the Indomethacin. Similarly, the vitamin D3 regimen isn't working this time (blood work on Friday had me at 124ng/mL). So did it work in previous years, or was I just in a 2 year relapse? Or maybe it only works for me if it's already in my system prior to the cycle starting? I appreciate all the help! I know a lot of this is probably repetitive for people who've had CH for a long time, but the information is all over the place and sometimes difficult to find.

Bit of history, I had "mild" clusters starting in September 2015. In 2017 after my 3rd year (each September), I found the vitamin D3 regimen. September 2018 and 2019 passed without headaches (started the regimen last week of August and took through first week of October). But then I started a new cycle in mid-November. I was caught off guard without the vitamins. This cycle has been more typical of CH's, with more frequent attacks and much more painful (what used to be 7's as the worst are now 9's and 10's). Because my previous cycles had been so mild, and the vitamin D3 thing worked so well, I'd never sought out a doctor. After a 10/10 last Thursday, I got an emergency appointment with a neurologist Friday (4 days ago). He put me on Indomethacin and I had to beg to get some kind of treatment, which ended up being Imitrex. I mentioned oxygen and he said it'd be almost impossible to prescribe. I'm not sure if that's legitimate, but I have seen that a lot of insurance doesn't like to pay for it. This is the first cycle I've tried other methods. So far, energy drinks seem to work decently well, but since I'm limited to probably 2 a day, if I get multiple shadows I'm torn on when to take them. I've got a clearance, so "alternative" illegal substances are off the table. Outside of that, I tried a vibrator to my eye socket. That...mostly just distracted a bit, but didn't bust it. That's about the extent (I'm only 3.5 weeks into this new, hellish cycle). As I said, the Imitrex is basically a last resort if I get something in the 9-10 pain range that I just can't handle. I'm curious if using it gluteal would work?

I've had a much more intense cycle that started in November (normally a September CH), and I finally went to a neurologist. I was able to get him to prescribe 6mg Imitrex, but I'm a bit nervous about the injection site. I have pretty low body fat, and there's really nowhere on my thigh that feels "fatty" enough to inject. I'm worried that I'll be injecting into either my quad or hamstrings, depending on where I choose (similar problem with my arms). Googling this I haven't found any similar question, so I'm curious what to do. I'm basically using them as a last resort, but I don't want to have to use it and cause a serious health problem as a result of administering the shot incorrectly.