Hi folks
I've been lurking a while so I thought I'd introduce myself.

My CH journey started about 15 years age in my mid 30's. I remember for many years getting vague headaches which came and went with no apparent pattern. They were always bearable until 2008 when they got a lot worse and I decided to see a neurologist. Just as I got to see her they stopped. I now know I went out of cycle.

In the spring of 2009 they started with a vengeance. Because of the location of the pain, the sinus clogging and the unilateral tears I thought it was sinus related so I went to see an ENT. He (mis)diagnosed sinugenic migraine and did a sinus op which obviously helped nothing. But the post op pain killers worked a treat until I went out of cycle again.

In early 2011 it started again and this time I saw a neurologist who knew what he was doing and diagnosed classic episodic CH. My MRI scan was normal and no other health conditions.

Treatment was o2, prednisone and maxalt which has worked perfectly for me ever since. Lately when I go into cycle I don't bother with the o2, the maxalt does the trick. I take 10 mg before sleeping and it keeps the worst away.

My last bout ended in 2012 and I though it had gone away for good. Since the last bout I lost 20 pounds, completely transformed my diet and am in the best shape I've been in in 20 years (I'm 49 now). I thought that might make it go away but no such luck. They started again on 2 July. Welcome back, hope you don't stay too long....

I've just started the d3 routine now, but I'll post and update in that thread about progress.

Well, if you are going to have CH I guess mine is the best kind. With treatment I rarely get above kip 5, I only get woken once at night about an hour after sleep and rarely have pain during the day. The cycle usually ends in 60 days and I just have to avoid alcohol, stress and extreme exercise for the duration.

I used to feel quote sorry for myself but lately I've just grown to accept it. Not much point in dwelling on it, it's part of me so resenting it would be like resenting your arm.

It helps having a loving family who support and understand when the times get tough.

Thanks for all the advice so far!

Hi and welcome


Jovan wrote on Aug 3^rd, 2014 at 3:21am:

Treatment was o2, prednisone and maxalt which has worked perfectly for me ever since.

For how long do you use the prednisione?

Normally it is just over about 7-10 days whilst a longer term preventive, like verapamil builds up to an effective dose. If used for longer then there is a significant risk of it causing issues, especially to your joints.

Do you use anything like verapamil?

Glad you stuck your head in, give the D-3 a good try, I'm a little older then you, 54, been pain free the last 4 years after well over a 30 year run with episodic CH, using JUST the D-3 regimen. Hope you catch a short go this go round.

Joe

Mike NZ wrote on Aug 3^rd, 2014 at 3:52am:

Hi and welcome Jovan wrote on Aug 3rd, 2014 at 3:21am: Treatment was o2, prednisone and maxalt which has worked perfectly for me ever since. For how long do you use the prednisione? Normally it is just over about 7-10 days whilst a longer term preventive, like verapamil builds up to an effective dose. If used for longer then there is a significant risk of it causing issues, especially to your joints. Do you use anything like verapamil?

I've never tried verapamil , will speak to my neurologist.

I take 10 mg prednisone for the full duration of the bout, usually 2 months.

Guiseppi wrote on Aug 3^rd, 2014 at 8:43am:

Glad you stuck your head in, give the D-3 a good try, I'm a little older then you, 54, been pain free the last 4 years after well over a 30 year run with episodic CH, using JUST the D-3 regimen. Hope you catch a short go this go round. Joe

Thanks Joe, me too!

Jovan wrote on Aug 3^rd, 2014 at 10:50am:

I've never tried verapamil , will speak to my neurologist. I take 10 mg prednisone for the full duration of the bout, usually 2 months.

I'd certainly have a chat about using a preventive like verapamil or lithium with your neuro. They know your personal medical history so they should know what is best for you.

Two months on prednisione is a very long period and there is an increased risk of side effects associated with this. I'd suggest that you do some research on this and discuss it with your neuro.

That's great advice Mike. I've set the appointment already.

My old neuro retired so I've found a new one. I'll ask this one about verapamil.