calling female cluster headache sufferers

02 Nov, 2011 - 7:42 pm

I have had cluster headaches for 30 years. I am a female medical practitioner and had access to very good care from neurologist colleagues. I was tried on all the preventative therapies - they would work for a while and then the headaches would break through.Oxygen was very helpful and I used Imigran IMI when I didn't have access to oxygen. In my early thirties I wanted to start a family but was very anxious about how I would cope with the cluster headaches during my pregnancy without being able to use both preventative and abortive medication.At that stage I was having clusters every 4 months that lasted between 4 and six weeks headaches occurring daily to twice daily. They made my life an absolute misery and I felt very neurotic and self obsessed when I was going through a bout of headaches.
To my amazement I had no headaches whatsoever during my pregnancy but I got a cluster within 3 weeks of delivering my son. I wondered what protective factors the raised hormone levels during pregnancy might be affording me and reflected on male predominance in cluster headache sufferers. My obstetrician told me the predominant hormone in pregnancy is progesterone. I went onto a progestogenic contraceptive pill(.I had been on a number of contraceptives previously but they had more oestrogen than progesterone). I found that if I remained on it continuously - without the customary 7 day period off it - I remained free of the headaches.This kept me headache free for 10 years. I then thought I would try and see if I could have a brief break from the pill - but the headaches immediately recurred and one they started the cycle of daily headaches ran its course for 4-6 weeks. So I went back on uninterrupted progesterone medication. I am now on hormone replacement - both progesterone and oestrogen as I am postmenopausal. I thought my cluster headaches were behind me but earlier this year I was started on anew antidepressant which works on the melatonin system and I had a cluster headache. I immediately treated myself with 2-3 times my usual dose of progesterone which I think halted the headache cluster.I stayed on this for about 10 days before returning to my usual dose.
So the take home message is that continuous progesterone based contraceptive treatment may offer you the miraculous help it afforded me - without it my life would have been terrible. You will need to talk to your own doctor about the potential negative effects for you - I had none fortunately. Obviously giving men progesterone is not straightforward and may well be out of the question.
I really hope this helps some-one out there.
I'm happy to answer any questions.
Penny

0 people like this

03 Nov, 2011 - 6:38 pm

Hi Penny,
Welcome and thanks for sharing your experience and info.

Just a couple of questions - is the long term use of progesterone likely to increase the risk of breast cancer and / or blood clots, especially in post menopausal women?

Secondly, do you mind if I copy your post to show my GP?

Cheers
Sara

0 people like this

05 Nov, 2011 - 12:38 pm

Hi
Of corse I wouldn't mind you showing my post to your GP.
As to the risks of progesterone - I'm no expert but this is what I understand. Before menopause I was using a standard contraceptive - just with a high progesterone level - so the risks would be those associated with that - using it continuously without a break may cause issues for the endometrium - but the implant is a continuous hormonal treatment for months at a time. Post menopausal hormone treatment carries risks - cancer of various sorts and some other risks - but my understanding is that progesterone and oestrogen is safer than oestrogen alone. The risks seem to manifest after 5 years of use.
I must emphasize I am no expert on these issues. Your GP or a gynaecologist could give you advice on the risks.
I guess with any medication one needs to balance benefits against adverse effects and risks.
For me progestrone has been an absolute godsend. Before beginning it my clusters were getting longer, with more frequent headaches and the intervals between them getting shorter. I hate to think what the last 22 years would have been for me without the progesterone. My response to the progesterone may have been idiosyncratic but maybe other people could benefit too.
Did you have pregnancy related changes in you CH frequency or severity?
Regards
Penny

0 people like this

05 Nov, 2011 - 3:10 pm

Hi Penny and thanks for the info

I have no experience with CH and pregnancy - I'm 47 and only had CH for the last 5 years.

If you're interested in other members' experiences with CH during pregnancy, click on "Forums List" at the top lhs of the page, then you can search for posts containing the words pregnancy / pregnant etc.

Sara

0 people like this