Hi all, first post here but I’ve been a follower of the forum for a while, having been a fellow CHer for the last 19 years since I was diagnosed with them when I was 13. Forgive me as it’s a long post but it’s rather therapeutic to get it out! Mine are episodic, with my latest episode beginning about 3 weeks ago and the one before that was in January 2020. I’m at my wits end battling these for so long, although I find myself fortunate I do not have to deal with these chronically like some, they do affect my quality of life greatly in the 1-3 months the episodes last as I’m sure all of you can empathize with.
I unfortunately have a lot of trouble getting my GP on board with oxygen therapy, relevant lab work done or even just prescribing a correct dose of a medication I’ve finally been able to convince him to let me try. I believe he has good intentions behind this since he just doesn’t have a lot of experience with CH, however it’s definitely stale mating me in my fight against The Beast. I’ve mainly only been using triptans as my main source of abort, one time was prescribed propranolol - a beta blocker - however saw no results. This was so long ago I can’t remember the dose, but knowing my doctor it was likely the minimum recommended dose from manufacturer.
My episodes are classic cluster - come on within minutes, unilateral focused on my right side always, teeth/jaw pain, feels like someone’s tearing my eye out, eyelid swells, sometimes droops, usually last anywhere from 30-45 min although I’ve had a few only last 5-15 min on occasion, some that last up to 4 hours. I always seem to be able to count on a hit about 2 hours after bedtime and within 2 hours of waking, occasionally I may get one through the day as well.
One outlier symptom I seem to have is back pain. I always know a cluster is coming because I feel it in the right side of my back first then it crawls up into my shoulder/neck, does it’s ugly thing to the head and face all while my back is doing extremely painful spasms as well. If a cluster is shadowing me, I usually feel it in the back of my right ribs and up from there into my shoulder. Sometimes I take Flexeril, a muscle relaxant, to help the back spasms. If anyone also has experience with this, I’d love to get your insight.
This current cycle has been again about 3 weeks in, started with 1 hit a day, then 2-3 and the last week it’s been 4-5, with extreme pain episodes lasting a long time. I considered perhaps I was having rebound headaches from having to abort with Triptan so often.
Wednesday AM I woke up with a slight pain in the back of my right hip and knew a cluster was coming. Immediately took 50 mg sumatriptan tablet (was out of my Rizatriptan dissolvable) and half a flexeril tablet but the beast was on within 2 minutes. I had a very strange symptom I’ve never had before with the clusters, about 5 minutes into it all the sudden I just started sweating profusely but all the pain just suddenly ceased completely for a few minutes until finally the sweating stopped but the cluster came back at a 10. It’s been a long time since going to emergency room for a cluster as I live in a small town and in the past, I usually get the headache treatment where they put me in a dark room and wait it out. But with the strange new symptom, felt I had to go.
by the time I got in front of a doctor, I was about an hour in and down to about a 5-6 pain wise, mostly in my back with some waves still going up into my head. We initially tried oxygen, I think it helped some but this would be more helpful if I could get it right when the attack was starting. it helped for the first 10 minutes then I felt like maybe it was giving me a different kind of headache.
the doctor did a bit of researching and decided that we should try the steroid Prednisone to help prevent some of the attacks short term, reduce some of the inflammation that’s clearly going on in my back and hopefully get me to a new neurologist appointment (I haven’t seen one since I was diagnosed at 13.), follow up with my GP and go from there with treatment.
after being given oxygen for about 15 min, 60 mg prednisone and another 6 mg sumatriptan, i felt much better after about 45 minutes and was discharged with a script for 60 mg prednisone for 6 days then to taper off by 10 mg a day until im off of them. And so far, knock on wood, it has at least interrupted the cycle but I’m weary of it for sure since I know this stuff has pretty strong side effects and it’s likely the clusters will come back.
i was able to follow up with my GP on the phone today. Wasn’t able to convince him to get me oxygen at home to try, but was able to convince him to put me on Verapamil to hopefully help me continue to reduce the numbers of headaches long term after I’m done with the Prednisone. However dose of verapamil seems low (for what I’ve seen recommended for cluster), at 60 mg a day.
I’m really not sure if the verapamil will help or not but I’m desperate to try anything. If the clusters do come back after the Prednisone, I’m also considering asking if we can try Indomethacin, just to rule out the possibility that it is Paroxysmal Hemicrania I’m dealing with instead.
I did try the Vitamin D3 regimen in the past but this was while I was a struggling college student and couldn’t necessarily afford so much extra, even for my own health. I’m definitely going to try this again, would anyone recommend I wait until presnidone treatment is done? It scares me to be on it but it’s also been something of a miracle worker stopping this cycle in its tracks as it has so far.