Pardon the subject heading. That’s just how I feel when I am riding the beast.

First and foremost, I would like to express my deepest gratitude for all those that have shared their pains, struggles, and triumphs with cluster headaches. The fact that many of you still manage to live extraordinary lives despite suffering through the most painful condition known to man provides hope and strength for those that need it. Whenever I feel like complaining about my condition, I always think of those that must go through this without end, and I find myself being grateful that my situation is no worse than it is.

I had my first bout of cluster headaches around Thanksgiving 2008, which lasted about 5-6 weeks. I took sumatriptian tablets, which did absolutely nothing since by the time it kicked in, the cluster headache was gone. I thought I was in the clear when it went away, but sure enough it came back at the same time in 2011. It was brutal! What made it worse was that I had limited insurance because I was a grad student at the time. I couldn’t afford to get any medication. I had to ride it out. The level of pain varied, but it escalated as the weeks went on until it finally reached a dramatic finish after 6 weeks. I remember the last night of that last cycle so vividly. It must’ve been a Kip 10 that lasted for nearly 2 hours. I felt like an MMA fighter in a cage – jumping, rolling, kicking, screaming, moaning, and finally laying down in defeat. As I woke up the following morning on the floor of my living room, I felt the sun shining through my face, and I knew right then that the fight was over…at least until the next battle.

It’s January 2014 and the next battle has begun. While I was not expecting my cycle to kick in until November 2014, I was just fortunate that the beast was sympathetic enough to wait until after the holidays. I have an 8-month old son who celebrated his first Thanksgiving, Christmas, and New Year. I would have felt horrible if I wasn’t able to enjoy the holidays with him. However, the beast waited long enough and while he has been shadowing me since December 29th, he finally decided to come full circle on New Year’s Day.

I met my doctor on January 2nd and he gave me 18 – 20mg dosages of sumatripitan nasal sprays and he immediately referred me to the neurologist/headache specialist so that I can hopefully get a prescription for oxygen. I am meeting the neurologist tomorrow, so I am praying that I can get some oxygen. I am not really sure how effective the nasal sprays are since I’ve avoided using it for anything less than a Kip 6 or 7, and it’s really difficult to gauge pain level until 10-15 minutes into an attack, so I am not sure if it’s the spray or the attack is naturally dissipating. In any case, I am determined to get oxygen. Also, this time around, we prepared our extra bedroom/office into a “battle room.” Dark curtains and space for me to jump, roll, kick, scream, and moan without bothering my wife and son in the middle of the night. Oh, and I’ve also started Batch’s anti-inflammatory regimen with fish oil, D3, calcium nitrate, and magnesium nitrate. I tried it during the last cycle, but well into the end of the cycle, so I am not sure how effective it was then.

Glad you found us Joe - I'm somewhat new to the CH thing, had my first cluster Saturday before memorial day 2013 - Glad I found this board.  So much great info.  I can say the D3 has really helped me.  I've felt some shadows recently and took some extra D3 and they went away.  So yes, as Maz said - stick with it - you have nothing to lose.  While at your Doc's tomorrow - get a blood test for Vitamin D3 levels.  This is the best way to know where you are starting from.  You want your level in the 85ng/ml to 100 ng/ml - this is where most find relief.  Keep us posted!

Hoppy,
Yes - sumatriptan, imigran, imitrex - Not 100% sure but I think it's all the same thing. Just different brand names.

Thanks everyone. Yeah, I really regret not continuing the anti-inflammatory regimen after the end of my last cycle. I continued it for about a month, but lost discipline.

I just met with my neurologist and she prescribed Imitrex injections and put in an order for oxygen. She also prescribed verapamil (eventually building up to 240mg daily). I'll also give 10mg melatonin a try before I go to sleep.

Thanks again everyone for your suggestions. I really appreciate it.

Yeah, I don't think I am going to go through with the verapamil. Now I remember why I stopped using verapamil during my last cycle. I feel like it exacerbated my cluster headaches. I took my first dose this morning and soon enough, I had the most painful and longest attack since my current cycle began. Also, it feels like the beast is just hanging out constantly threatening me. Every time I move my head it feels like I'm about to get hit and this is not typical of my experience.

I've also only been getting hit twice a day, once in the morning and once a night around bedtime. It's only 6:30 and I've already been hit 3 times and I am sure the bedtime beast doesn't plan on skipping his routine.

Have any of you experienced this with verapamil? My doctor was already concerned how I'd react given that I already have low blood pressure.

Just a few reactons from this string of replies:

1. Imitrex spray is slower acting than injection and developing a good technique for using is important.

2. Your avoiding using the spray until you judge how bad teh attack is: wrong technique! Use any abortive at the first sign. Delay reduces the effectiveness of the Imitrex, etc. sometimes to near zero.

3. Oxygen is effective and popular. Limitations: acton stops quickly when you stop breathing it whereas other abortive have varying periods of ongoing effectiveness. And then the consideration of convenience when working, traveling, etc. I suspect many folks use O2 at home and a "portable" med at other times.

4. Verapamil takesn several days to become fully effective and is intended to be taken routinely during the whole of your cycle (some take it 100% of the time if their cycles are rapid, with brief intervals between them). But the comment about taking Verap without relief a few hours later quite misses the understanding of it's mode of action.

5. Re. Verap and blood pressure. Quite an individual reaction. Always surprisedsme how many folks use high doses with no problems about BP. Clearly, something which can be checkedd easily to see if, as you increase the dose of Verap, the BP declines. Coordination with the doc is the answer.