Birth control and cluster headaches

[RissG]

Has anyone had any success is controlling clust headaches with low hormonal bc?

I was recently trying to get pregnant and have PCOS. The crazy hormone meds they gave me triggered a CH cycle and now nothing is helping break this cycle. I have also noticed some symptoms to tell me my hormones are still out of whack.

Do you think it's worth trying bc pills to balance that out? (I have given up on the idea of have children). 

[Ganuchi]

Hi Riss

I can only share my personal experience but I have been on Ortho Cyclen birth control pills for 22 years (yes - you read that correctly-LOL- knew from a very young age kids weren’t for me).  Anyway, when I used to take the brand of the Ortho Cyclen my CH was worse.  When they discontinued the brand and I switched to generic “Estarylla” I felt like it actually improved.  The Estarylla is higher dose though which may not be what you are looking for and you very well may find your own experience different.  I get more episodes and shadows around the time of the inactive pills and as fluctuate back to actives so I have often wondered if there is a hormonal aspect even though CH is pretty male dominant.

 

Don’t know if this helps but I wish you well as you battle your beast.

[jon019]

2 hours ago, Ganuchi said:

so I have often wondered if there is a hormonal aspect even though CH is pretty male dominant.....

....monitoring these forums over the decades leads me to believe that the ratio of male/female in the "beast war" is prit' near 50:50. older lit and uninformed medicos still cling to the fallacy that it's a "guy thing"....which only increase the burden on female clusterheads. perhaps the guys are just more vocal AND/or one must realize the lit is (or was) written by men. the old saying that if men had to give birth there would be a whole lot more attn given to birth control is absolutely true.....IOW, males tend to look at things as it effects men. newer lit is much less, if at all, definitive re gender affliction levels. see men and migraine for a similar mis-belief the other direction.....

....my further belief, also developed by watching these forums and personal experience,  is that significant fluctuations in hormonal levels, regardless of gender...are an effector of CH. see pregnancy, see high stress/de-stress situations, see D3 regimen (D is a hormone folks).  i've always wondered if barometric levels follow a similar pattern. high or low never bothered me.....rapid fluctuations (e.g. weather fronts) dramatically significant. it also may be that levels outside "normal" is equally significant for some clusterheads....

...pls pardon the small thread hi-jack....i think it wise to monitor how hormones affect any aspect of your health...considering your levels and how much, if any, to adjust ....an excellent idea!....

best

jonathan

Edited August 22, 2021 by jon019

[Ganuchi]

Thanks Jon019!  Whenever I have mentioned hormonal fluctuations triggering CH I have generally been looked at like I was psycho.  Guess I shouldn’t have believed the lit saying CH was mostly men, but I do think there is a tendency for some reason to put women under the “migraine” umbrella.  Probably because most people don’t understand that CH is not the same.

Also, fluctuation of barometric pressure does a number on me too

We are on to something here

[Bejeeber]

23 hours ago, jon019 said:

....monitoring these forums over the decades leads me to believe that the ratio of male/female in the "beast war" is prit' near 50:50. older lit and uninformed medicos still cling to the fallacy that it's a "guy thing"....which only increase the burden on female clusterheads

100% agreed here after decades of forum monitoring - between the two of us @jon019 we probably have going on 50 years of forum monitoring action. 

[jon019]

....a coupla clusterheads keepin'  an eye on things....

[RissG]

Thank you both for your interesting contributions!! @Ganuchi that's really comforting to know they improved after switching. I was also laughed at for saying it was a hormonal thing but I would go long spans of time without the beast, take hormones to help me get pregnant and each and every time, I would start a cluster cycle. My neurologist said he had a male patient who found clomid (a medication that helps women ovulate) actually helped keep the beast away for him. 
@jon019 I definitely agree with you that it increases the burden on female cluster heads but I'm part of the problem. I will no longer be telling people that. I think many women are misdiagnoThank you both for your interesting contributions!! 

 I definitely agree with you that it increases the burden on female cluster heads but I'm part of the problem. I will no longer be telling people that. I think many women are misdiagnosed and aren't given the proper information and treatment to help them through. I have gone through it myself. Thanks for bringing some humor to the table as wellsed and aren't given the proper information and treatment to help them through. I have gone through it myself. Thanks for bringing some humor to the table as well 

[Ganuchi]

Wish you well Riss!
 

We (women CH) definitely take a burden.  I was in ER once (away from home unfortunately) screaming for oxygen as doc was telling me she was going to give me migraine cocktail because SHE KNEW migraine was my problem.  Obviously, the cocktail did nothing because it’s f-ing CH!
 

My male cousin who suffers from migraine along with epilepsy deals with the opposite as though men can’t have migraines as jon019 alluded too.

 

Headaches should not have gender roles…….the beast is bad enough!

[jon019]

.......in case you were wondering...Bejeeber is the good looking one....

 

[spiny]

I find the denial about hormones confusing! In the 70's, if you had migraines, they would not give you B.C. pills! Why? Because they made the migraines worse. Nor would they mention CH if you were female. 

I am pretty confident that in the future, if they diagnose correctly, migraines and clusters will be equally split between the sexes. My son and daughter have migraines and I have CH. Which was undiagnosed for decades. Like from age 22 to age 58. At 58, I drug my husband to the Neuro with me so he would shut up about migraines! Once my husband told him 'I am sick of losing my wife at 8 o'clock every night!', he was willing to entertain the thought that I might have CH. They did come like clockwork after all.  

'Headaches should not have gender roles…….the beast is bad enough!' AGREED!

[EllieM]

My 38 yo daughter gave birth 6 weeks ago. She has been having CH the past few weeks.

No meds as she is nursing. May have to stop. Wondering if birth control pills may help. 
Her on/ gyne referred her to a neurologist but there is a long wait.
 

thanks. 

[BoscoPiko]

3 hours ago, EllieM said:

My 38 yo daughter gave birth 6 weeks ago. She has been having CH the past few weeks.

No meds as she is nursing. May have to stop. Wondering if birth control pills may help. 
Her on/ gyne referred her to a neurologist but there is a long wait.
 

thanks. 

Hi Ellie,

Unfortunately I don't think BC will help. I was put on them in the very beginning when they misdiagnosed me with migraine and they did not help. I don't know if you can take supplements (vitamines) when breastfeeding but if you can a good start would be the D3 regimen.