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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › Works for me..maybe it could help someone else

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Works for me..maybe it could help someone else (Read 1590 times)

CrankieFrankie

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Works for me..maybe it could help someone else
Jan 12^th, 2012 at 1:04pm

I give a little about my history so this makes sense.

I started getting these really bad headaches like 8 or 9 years ago, when i was around 15. I got all the tests done: CAT scan, blood work, MRI, allergy test. The neurologists couldn't figure out what was wrong with me so they tried anti-seizure meds and anti-depressants, which didn't do anything but actually make me despressed. I started doing research on my own and found out about cluster headaches. I printed out all the information I would and brought it to the neuro and finally got a diagnosis. But still didn't know what medication to put me on.

Almost as a last straw, the doctor suggested that I try going on birth control to see if it had something to do with hormones. And it worked. My CH stopped after one week.

My Ch have come back a few times, only when switching pills. The most recent bout with CH these past two months was because the Pharmacy told me that my pill had been discontinued. Long story short, CVS lied to me and I found a different pharmacy that still carried it. I started up my pill again, and within a week, they were gone. Before finding that pharmacy, the neuro put me on propranolol, which ended up just helping my anxiety but not stopping the CHs.

Now I understand that this won't work for everyone. But it is something that has helps me stay PF when I'm on it. I wanted to share my story in case someone else is at their wits end and may need something else to try.

"I close my eyes, I tell myself to breathe and be calm. I know you feel like you are breaking down. I know that it gets so hard sometimes. Be calm."

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Guiseppi

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San Diego to Florida 05-16-2011

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Re: Works for me..maybe it could help someone else
Reply #1 - Jan 12^th, 2012 at 1:28pm

Great to hear you found something that helped. Hormones appear to play a role in CH as some have posted that while pregnant, they had no CH. (Won't work for us guys... Wink

) And there's a whole thread devoted to testosterone replacement therapy as a means to treat CH.

I'd stick around and read up on alternate treatments, just in case this therapy ever stops being effective. Crossing my fingers for you that this never happens.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Works for me..maybe it could help someone else Reply #2 - Jan 12^th, 2012 at 2:45pm Guiseppi wrote on Jan 12^th, 2012 at 1:28pm: (Won't work for us guys... ) Crazy thought... Has any guy tried it?
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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: Works for me..maybe it could help someone else Reply #3 - Jan 16^th, 2012 at 9:00pm I'm thinking about it! Nothing else has seemed to work for long. Some things have worked really well for a period of time just to quit and leave me high and dry again.
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PlayDoh

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Re: Works for me..maybe it could help someone else
Reply #4 - Jan 17^th, 2012 at 1:26am

This is interesting and a similar story. This woman takes hormone replacement pills I think, yet states that she used "the pill" also.
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This is what she wrote.

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.
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