Hi friends in the cluster world.  I am soon to celebrate my 45th bday later this month.  I am a male and I have been a clusterhead since I was 13 (episodic).  I went 4 years without the cluster and thought maybe I had left it in the dust.  At the height of a stressful stretch in my walk, BAM, they returned.  Over the years I have tried most everything.  I even had a Ojibway fella successfully treat me with plant medicines and a healing stone (knocked them right out).  CH went in remission for two years and returned.  Went back to healer and he prescribed a different remedy, which was not effective..  This latest battle has been long and intense.  Verapamil and Topamax have been ineffective and I am about two weeks into this V3, Omega 3, magnesium, calcium regiment (I will call it the Batch regiment)  and then I abort successfully with O2 or sumatriptan (when I have them in stock).  I have been trying some essential oils and believe they are helpful ward off attacks during the waking hours some of the time.  After 17 years my CH evolved to include the nightly attack 90-120 mins after falling asleep.  I will quit rambling and simply say its good to be here with supportive folks that know what its like to be a clusterhead.  In solidarity and love, Bigoji :) Also, has anyone tried a nerve-block procedure to break a cluster?

Hi Bigoji and welcome.

Stick with the D3. It will take a while to work. Have you had your blood levels checked?

I had a nerve block and it worked, but only for 4 weeks and the Beast returned stronger than ever.

Peter.

I have not had my blood levels checked yet.  Peter, can I ask if you are typically episodic or chronic?  My episode is due to be done any time now and I am hoping the nerve block will end it. One never knows how these CH will react though.  -Bigoji

Bigoji,

I was episodic at the time. It was a few years ago. I'm chronic for the last 2 years.

My CH has become very manageable since I went on the D3. Still get a couple of hits per day, but only at a level of 3/4 and sometimes they go on their own. Some shadows as well, but nothing like I was before D3.

That's why I advise sticking to Batch's programme exactly and getting your levels checked. You really need to know where you're starting from, so you can compare a second blood test a few weeks later. My level went from 33 to 163 in about 4 weeks and that's when I benefit started to pay off.

Also, keep on the programme after your current cycle stops. Take it every day whether you're in cycle or not.

Hope this helps.

Peter.

I'm with Peter on the D3 regimen. I've been PF since Oct of 2013 (after being chronic since 97).

O2 is a good abortive if used correctly (see O2 tab on left) with the RIGHT mask.

Also have you tried Melatonin at night before bedtime. I take 20 mg EVERY night and have for years. It stopped the night hits for me years ago (had one or two but nothing to talk about).

Another thing - if you wake up - GET UP.. do not lay there and try to go back to sleep. Get up and get a cup of coffee.. For some reason if you go back to sleep - you WILL get hit.

Wishing you PF time real soon..  :-*

Hey Barbara,

I started taking Melatonin last week, but as I was not sure of the appropriate dosage I took 5omg each night. I can't say I slept much better.

Does the body take time to adjust, or could I increase the dose to 100mg ?

Thanks,

Peter.

I believe melatonin can take a couple of weeks to become effective.
I've had 2 nerve blocks. First one didn't work so had another one month later. That didn't work either.
Maz.

Maz,

Thanks for the steer on Melatomin. My experience with nerve blocks was exactly the same as yours.

Thanks again,

Peter.

Peter, You are taking a rather high dose of melatonin. I think most people take about 15mg about a hour before bed. Melatonin didn't have any effect for me, but I have sleep issues that are nothing to do with CH, which I have had my whole life - long before CH reared it's ugly head, so maybe I'm an exceptional case. It certainly seems to work well for most people.

Maz,

Thanks for the reply. I'll change the dose to 15mg for a couple of weeks and see how it goes.

By the way, your little Princess is a beautiful looking child. I'm not a royalist (being Irish that's no surprise) but the birth of a healthy child is always something to celebrate and judging by the coverage on the BBC last week, her birth brought a lot of pleasure to a lot of people.

Thanks again.

Peter.

Hi Peter,
I'm not too much of a royalist myself but I do think the Princes William and Harry are well worth thier salt. I've never met either of them of course but they both seem to be thouroughly good, down to earth youg men. And Kate is as beautiful as they come.

I am in the very small minority of people in the country who was not a fan of Diana, but I do believe she was a good mother, and her son will make a good king one day.