Hi everyone names Doug.. I'm new on here also a relatively new member over at clusterbusters as well. Recently had a positive diagnosis of CH thanks to an excellent pcp here in Columbus Ohio who had seen CH once before in her 30 years one practice. She started me on verapamil and sumatriptan and when those weren't working she acknowledged she was over her head and sent me to neurologist also here in Columbus. I have had CH for around 7-8 years near as I can recall used to be fairly eposodic 2x a year spring and fall. Latest cycle started around October or November of last year with relief only coming from prednisone which I have had 4 rounds of since may. Neurologist has done 2 occipital nerve blocks to date first one gave me some relief in pain level and duration of attacks but the beast came back with a vengeance last night did another nerve block today while having shadows that were either from the attacks last night or one starting this morning. Thankfully only 1-2 attacks since the block today but have had a constant shadow that does not got away. Going to talk to neuro on Monday about the D3 treatment Batch was so kind to send me on clusterbusters. .... long story short new to site wish none of us ever had the need to be here. Hopefully one day

Hi Doug and welcome,
Spring and fall clusterheads have a good record of becoming pain free that are on the vitamin D regimen, myself included, so do give it a try.

Cheers Hoppy

Hi and welcome Doug.

Your PCP has done well, recognizing CH and then admitting that she needed to send you to someone with the appropriate level of skills and experience. Not all doctors will do that.

Nerve blocks have a mixed level of success. They can work well for some people, but others can find that they only last days to weeks or that the CH pain just swaps which side of the head it affects.

Are you still using verapamil as a preventive? Most people respond well to a dose of between 360 and 480mg a day, with some going to around 1000mg a day. So there is potential to increase your dose, subject to your own medical history, but you must work with your doctor if you change doses. It also takes about 10 days for a dose change to take effect, so don't change quicker than this.

D3 can work wonderfully well. I've been CH pain free for well over 5 years using it and over 80% of people find it works for them too. So I hope it can work well for you too.

You mentioned you had sumatriptan for an abortive. If this is the tablet form then these don't work too well for CH as they can take 20+ min to take effect. What works a lot better is the nasal spray or the injections. Both of these can work in around 5 minutes. In the US these are often referred to as Imitrex, which is the brand name. Sumatriptan is the generic name.

Also ask your neuro about using oxygen. Using a non-rebreather mask and a high flow rate (15lpm+), it can mean you can kill off CHs in a few minutes. Plus unlike using sumatriptans which are generally limited to twice a day, you can use oxygen multiple times a day.

There is lots of O2 info at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Before you see your neuro, I'd write down notes about all you want to talk about. Then tick off things as they are covered and take notes. Otherwise it is so easy to forget to bring stuff up.

Hope things go well on Monday and keep us updated.

There's lots of other little tricks, too, Doug.

Ice packs on the affected side or the back of your neck (frozen peas are our friends) while others use hot-packs or boiling showers instead.

Red Bull type energy drinks, chug-a-lugged at the first hint of a hit can help a lot while many ClusterHeads use strenuous/violent excerise routines which may serve to increase oxygen levels, or simply take their mind off things, but it doesn't really matter if it works.

Might also be worth keeping a bit of a journal to see if you can track down some triggers. For many it's alcohol, certain foods, smells, the list goes on but any you can nail and avoid might help a bit.

All the best and keep us posted.

We care.

Thanks everyone... I was hopeful the nerve blocks would help but sadly since Thursday night I have had fairly consistent kip 8-9s with no sign of relief I'm beginning to understand why they are called suicide headaches as since losing my job to this beast and noticing how my GF is distancing herself from me lately I'm afraid I'm going to lose her as well. It seems like the beast is taking everything from me I'm not the same man I was before they started and definitely not the same as I was when they were episodic. I'm mostly just a shell that screams out in agony several times a day. I have figured out quite a few of my triggers alcohol, being overheated(out in 95 degree weather lately has been hell. ) the list runs on but I'm always on the lookout for whatever might be a trigger. I do have O2 thankfully but the wrong mask so I'm ordering a new one today and hopefully will be able to try that as an abortive soon. I hate that any of us have to go through this and how misunderstood it is. If one more person in my family or group of friends says oh it's just a headache suck it up I'm fairly certain I'm going to lose it on them.

Chsuckedmylife wrote on Sep 25^th, 2017 at 9:44am:

If one more person in my family or group of friends says oh it's just a headache suck it up...

Hey, Doug, have a look at the ClusterHeadache Specific board, towards the bottom of page 2, and there's a thread called "Dopiest Responses to CH".

You'll find nine pages of people who know just what you're talking about.

You're not alone on this one, mate, I can promise.