Wanted to make a post to thank everybody that contributes to this site and message board. I've been an Episodic sufferer for about 15 years now, and have read TONS of useful information through this site over the past few years. THANK YOU all for everything. Being able to read others' experiences, and success stories etc., is so useful. Particularly since most simply don't understand the severity of Cluster Headaches.
I went years without any treatment for my clusters. Used to get a cluster every nine months (almost to the day), which would last 4 weeks, with about 1 or 2 attacks per day, lasting about an hour each. My remission period extended eventually for some reason, and went to between 14 to 22 months between cycles. But, when they would come back, it was like they were making up for missed time. The cycle would last about 4 to 5 weeks, but I would get 1 - 4 attacks per day (typically every other day for the first week, and then 3 or 4 a day for the next 4 weeks), and the intensity of attacks was way worse. Each cycle got worse.
My brother used to suffer from Cluster headaches when he was younger. But they eventually went into full remission for him. My family doctor (previous) didn't understand the condition, and told me to take 8 extra strength Advils anytime I had an attack. I explained to him again how often the attacks come in a cycle, and that this scared me. I never did follow his Advil advise, as it seemed ridiculous. He did eventually give me a script for Maxalt pills (rizatriptan), but that was all. They worked as an abortive if I caught the attack in time. But nothing was prescribed as a preventative. I had a couple of days that I ended up in Emerg at the hospital with attacks that were just awful and lasted much longer than usual. Eventually got referred to a Neurologist, who diagnosed Cluster Headaches, and came up with a a full treatment plan. 100% home oxygen through non-rebreather at 12L/min for 15 minutes, Sumatriptan 6mg injections up to 2x / day, Prenisone taper (60mg first 5 days, then reduce by 10mg every three days), verapamil (80mg 3x / day, increasing by 80mg every two weeks, up to 960mg daily). Neurologist did not provide any prescriptions, but sent the letter to my family doctor. I went to see my family doc, and he shut down every treatment in the letter and would not provide any prescriptions for any of them, saying they were all too risky (yes, even home oxygen).
I eventually changed family doctors, and was prescribed Amitriptyline as a preventative. Didn't really do any good. Ended up in the ER again with another really bad attack. Also tried home oxygen near the end of my most recent cycle, but found it would kill an attack, but I would end up getting another attack shortly thereafter. I think the problem MIGHT have been that I didn't stay on the oxygen long enough after the attack went away. I would usually stay on another 5 - 10 minutes, but not 15.
After my most recent cycle, I changed family doctors again. New doctor referred me to another neurologist and sent me for an EKG. Saw this 2nd Neurologist in April of 2016, and came up with pretty much the same treatment plan, and provided prescriptions as follows (but he provided prescriptions, while the first Neuro did not):
Prednisone taper: 60mg 2 days, 50mg 2 days, 40 mg 2 days, 30 mg 2 days, 20mg 1 day, 10mg 1 day
Verapamil: start on day 6 of pred taper - 40mg 3x day. Increase to 80mg 3x day after 1 week. Continue Verapabmil for 6 to 8 weeks after cycle seems to have ended
Zomig 5mg nasal spray - max 3x day when needed
Home oxygen: non-rebreather, 10 - 12L / minute, for 10 - 15 minutes
I had a couple of lead up attacks on Jan 15th, and then one bigger attack on Jan 22nd, which told me my cycle had begun. Started the Prednisone on Jan 23rd, and have not had a single attack since Jan 22nd (previous attacks in the first week were always less frequent and less severe, then fully ramped up by the 2nd week). So, I think the Prednisone has worked, but am still cautious, as I know not that the taper is done (as of 2 days ago), and the Verapamil dose is relatively low compared to what tends to work for clusters....they could come back. So far, so good though. And I'm thrilled. No side effects from prednisone, and the taper went without any issues at all. No withdrawal symptoms whatsoever.
My previous cluster was so bad that once it ramped up, I ended up working from home for about 4 or 5 weeks, as that was the only way that I could deal with them. Luckily my work is understanding, and had no issues with it. But the last cycle was the worst one I have ever had. It was awful. My wife is absolutely incredible, and so supportive. She knows from the years of me suffering through them, that there's not a lot that she can do. She understands to give me my space, but checks in on me periodically to make sure that I'm ok. She left work several times to drive me home at the start of the last cycle when I was still trying to go to work. She kept detailed logs of food / meds / attacks for me. She made arrangements for the home oxygen and got that all setup. And she stressed herself out so much trying to "figure them out" that she couldn't sleep at night, for fear of my next attack. She is the best, and I'm so thankful that I have her in my life. I can't imagine trying to do it alone. I try to tell her that there's no sense trying to "figure them out", as they seem to change whenever you think you know the pattern. And that if doctors can't figure them out, we shouldn't spend our energy doing it. The best way for us to deal with them is just that....just deal with them. I appreciate everything that she does, but I don't want her suffering as a result of my CHs. So, I hate to see her stressing. Though I know she only does because she cares, and doesn't want to see me suffer.
Anyway....my question.
As I've never used prednisone prior to this cycle. It does seem to have ended my cycle (and I realize it might be early to say that, as mentioned, they could come back now that I'm just on Verapamil).
1) For those that had success with Prenisone, did you find any difference on when your next cycle would hit? ie: would the remission period be the same length as previous? Or did they come back sooner?
2) Do people stay on the verapamil if the prednisone kills their cycle? I know the neurologist said to stay on, so, I will at least for this cycle. I don't want to take any chances. But am curious as this is a new treatment for me, and I also don't want to take any meds unecessarily.
That's it for now. Done work for the day. Might fix up this message a bit or add more later. But mostly wanted to thank the powers that be and all of the contirbutors of this site; share my experience; and ask those two little questions.
Thanks!