Developed cluster headaches after giving up caffeine?

[manu08]

I originally posted this on reddit, and someone pointed me in this direction, and I'm finding clusterbusters to be a wonderful resource and community so far. Thank you all!

I'm sharing my story for reactions, I'm trying to connect some dots.

tl;dr it seems very interesting that I developed what I believe to be cluster headache attacks just weeks after giving up caffeine cold turkey after fairly regular consumption for decades.

Longer version: I've been dealing with migraines for my entire adult life, about 20 years. Most of the time the migraines were episodic and managed with basic treatment: rest, ice, typical OTC meds (including excedrin).

I have had periods where the migraine frequency increased, but nothing like fall 2023. Suddenly I was having migraines daily, the light sensitivity really took over, started wearing FL-41 glasses nearly full-time.

I quickly got my act together and got an alternative acute medicine, Sumatriptan, which works well for me. I tried to power though while paying attention to my excedrin and Sumatriptan usage. That strategy wasn't working as well as I'd like, so on December 24th I decided to quit excedrin cold turkey. I also quit caffeine more broadly, which mainly meant no more daily soda. I was hoping that caffeine addiction and/or excedrin overuse was triggering my migraine frequency.

I knew quitting cold turkey would be brutal, but I had around 3 weeks off for the holidays, and I wanted to maximize my chances at normalizing before returning to work. As expected, the withdrawal headaches were brutal. The first few days were rather painful, though they matched the pain severity and location from bad migraines I'd had before. Then on the 4th day, December 28th I got a very different kind of headache.

Normally my migraines are one-sided, sometimes more centered around the forward 1/3 of my head (what many would describe as a tension headache), but this new headache was very localized. It felt like a knife was slicing down my forehead and into my right eyeball. The severity on that first day wasn't horrific, it was similar to a bad migraine, just a different pain pattern. I didn't think much of it at the time, I figured it was just a weird withdrawal headache.

Welp, I was wrong. Since then I've had 4 more of these headaches, but the pain severity went from modest to severe in a few minutes. Each time it lasts about 10 - 20 minutes. I thought I understood pain before, I was wrong. Holey moley these things hurt. This initiated a lot of research and has led me to believe I am experiencing cluster headaches (severity and location of pain, eye watering/sobbing, congestion, desire to move around, etc). The only thing that's off, is the frequency. I've had 3 of these thing over an 8 week period. It seems like most folks have these daily for a time period (hence the cluster name), but it's not always the case.

Also, I discussed this with my mom, and she confirmed that she and my grandma have both episodic migraines and cluster headaches. She hasn't mentioned it before, but they developed them earlier in life, and they matched the common pattern of a brutal short headache every day for a while, then suddenly nothing for a year, then bam it's back.

In any case, I find it peculiar that these suddenly started at age 37 after decades of migraines, just weeks after quitting caffeine. Perhaps the regular caffeine usage was mitigating them before?

[CHfather]

Wish I could give you a good answer to the "why" part, and I suppose it's possible that your caffeine use was somehow keeping them at bay, but I don't think anyone knows the practical "whys" of how CH begins.  I also don't know what to say about the pattern of your attacks, which is indeed unusual.  As you say, your symptoms sound CHy, for sure, although 10-20 minutes is on the short side for attacks (but again, not completely unheard of). 

Are the 10-20-minute attacks situations where you've been having some pain and then it ramps up and then drops down again, or are they more self-contained experiences that start and stop in the 10-20-minute period?  Have you tried anything for treating them (you mention sumatriptan that you have for the migraines, but you don't say whether it's in pill form or injectable)?

Since you're new to all this, you might take a look at this "overview" file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

 

  

[xBoss]

When my CH started it was only 20 minute attacks and just a couple few hits per week. It has progressed to more of a classic full blown CH since. With grandma being diagnosed it def smells like CH or combo migraine ch. I hope you can get it figured out! Great forum you are on. GL!

[devonrex]

Mine started off with a couple a week, but long, 2.5 hours from the start and still are. Since I got no breaks even in the couple a week, they were chronic from the start, just low end of the spectrum. I had been t-boned and trashed my neck the weeks preceding the ch, so I have felt that may have been the 'trigger' but who knows. A butterfly farting in Argentina could have been the cause. They do sound like them. As was asked do they ebb and flow or ramp up to the level they stay at until they 'drain away' at the 10/20 minute mark? That is usually one of the main things they ramp, stay at that peak until they drop off again. 

 

Cold turkey caffeine stoppage can cause withdrawal headaches as well. That may be a precipitating factor as well.

[manu08]

On 2/20/2024 at 10:53 AM, CHfather said:

Are the 10-20-minute attacks situations where you've been having some pain and then it ramps up and then drops down again, or are they more self-contained experiences that start and stop in the 10-20-minute period?  Have you tried anything for treating them (you mention sumatriptan that you have for the migraines, but you don't say whether it's in pill form or injectable)?

Sorry for the delay, I didn't get the notifications I expected. I'll figure it out.

Anywho, the 10-20 minutes is the peak of the attack, the portion of absolute misery that redefined my understanding of pain. All of my attacks have happened in the afternoon/evening, and I had the shadow on and off for several hours before things escalated into an attack. Looking back through my notes, I'd say there's shadow with more modest pain levels for a few hours, then the climax of the attack lasts 20-30 minutes.

I have treated them with sumatriptan pills. Obviously that's too slow for these attacks, but I didn't really know what I was doing at that point and hoped it would at least quell additional attacks for some period of time. I have since met with my neurologist who agreed they were cluster headaches, and I got sumatriptan auto-injectors to help going forward. We also discussed the possibility of trying emgality, but haven't started that process yet.

In the meantime, I also went all in on the anti-inflammatory regimen. My hydroxy 25 was already 63 ng/mL because I've been taking D3 for a while, but I added the co-factors and loaded up the D3 for a bit and quickly crossed 80 ng/mL. Since I hit that level, I haven't had a single cluster. That's only 11 days, but the prior 4 clusters were getting much closer together in timing, so that feels like a potential win.

I have an appointment with Jefferson Headache Center next week (was already on the books for migraines), and I'll consider getting oxygen and see what they think about the whole situation.

[CHfather]

Wonderful news about the cessation!!!

We've discussed splitting your injections (if they're 6mg) at another thread.

Something to keep in mind at your Jefferson appointment is that there is a CH "lookalike" condition, hemicrania continua [HC], that is all-day head pain with occasional "exacerbations" into more severe pain.  It doesn't seem highly likely that you have this (because I don't sense that your headaches are continuous), but maybe it's worth discussing, since there is actually a treatment for HC in taking the medication Indomethacin.  HC is generally not fully responsive to oxygen or triptans.  Some people have suggested that Indomethacin can also sometimes work for CH.  It's a difficult medication for some people because the gastrointestinal side effects can be challenging.  Of course, you are much better off if less harsh approaches, such as the D3 regimen, work for you.

Edited February 25 by CHfather

[FunTimes]

Jefferson is a good place, been using them for a few years now. The usually have a few clinical trials going on for clusters.