Hormones: All experiences

[Nutcluster]

Hey everyone

I’ve had a look through old posts and nothing really recent is coming up and not all experiences are in the same place so thought I would start a new thread to help us all figure out how hormones may impact CH. Whether you’re male/female/trans (saw that trans people have particular insights on this topic in old threads) what are your experience in this regard?

So, here’s what’s going on for me atm.

I’m female, early 40s and the last couple of years my CH have been less frequent. Usually I get them every year at around this time (I’m in the UK and it tends to link to daylight saving). Over the years (about 20) they have switched between the other clock change in about April but usually not more than one cycle per year.  During pregnancy I didn’t have them, but both pregnancies were Jan-Sept so not during Oct clock change. However, about 2 weeks after both pregnancies I got hit (as you can imagine, my sleep was bad during that cycle).

This last few years I’ve skipped a clock change and the headaches have shifted to the next one. So instead of going a year I’m going 18 months remission. It has now been 19 months since my last attack and I have only had a couple of possible shadows (those that usually indicate the start of a cycle but it hadn’t followed the pattern which is to be like that every day until the start of the bad ones). Hoping that they’re gone for good but thinking it may be linked to a drop in estrogen. 

I have also noticed other symptoms which could indicate a drop in Estrogen (oestrogen in case anyone is searching). My worst headache cycle was a year I got a contraceptive implant (which I had taken out because the correlation with intensity was so strong) so I’ve always thought hormones may influence the severity of the cycle. 
 

I am obviously very happy that the CH might be stopping but I may also need to address other symptoms that are starting to bother me. Naturally I am trying to avoid doing anything that will bring back CH. 

Can anyone else share any experiences at all which may be linked to hormones so we can have them all in one place for anyone looking? Whether you come across this thread today, or in 10 years from now add your thoughts so we can learn as much as possible about this condition! 

[Craigo]

Hi Nut cluster.

I’m clearly not female (I missed the social cues upon joining the forum regarding using a cat as my profile picture), I don’t have much to add regarding estrogen but I have always been intrigued with vitamin D biology during pregnancy and your post captured my interest so please excuse me if this is a little off topic but wanted to share. 

Cholecalciferol / vitamin D3 is converted via hydroxylation into the blood storage form calcifediol which is then further converted into its hormonal form, calcitriol, mostly (but not exclusively) by the kidneys. The blood level of calcitriol is maintained in a strict range to maintain calcium homeostasis and is regulated by parathyroid hormone. During pregnancy the levels of calcitriol, the hormonal form, increases by double or triple to levels you’d see in granulomatous disease or intoxication but without hypercalcemia. The body deliberately raises both calcitriol and binding proteins in order to support placental development, immuno-regulation and fetal skeletal growth. The levels then fall back into normal range 2-6 weeks postpartum. There is still much we don’t understand about this intriguing process.

It’s interesting that many female warriors report skipping cycles during pregnancy and to also consider why they return postpartum (and perhaps also why MS relapse may occur postpartum), and although tempting to speculate it may have something to do with the increase in calcitriol and its immuno-modulatory properties, probably an oversimplification - the body is just so complex.

Dr. Hollis & Dr. Wagner have a combined century or so of research looking at vitamin D and reproductive outcomes, this was a great talk from last year although can’t recall if they cover the specifics of the points above.  

 

[Bejeeber]

I see the kitty in your profile pic now @Craigo 

[Nutcluster]

On 11/23/2025 at 6:37 PM, Craigo said:

Hi Nut cluster.

I’m clearly not female (I missed the social cues upon joining the forum regarding using a cat as my profile picture), I don’t have much to add regarding estrogen but I have always been intrigued with vitamin D biology during pregnancy and your post captured my interest so please excuse me if this is a little off topic but wanted to share. 

Cholecalciferol / vitamin D3 is converted via hydroxylation into the blood storage form calcifediol which is then further converted into its hormonal form, calcitriol, mostly (but not exclusively) by the kidneys. The blood level of calcitriol is maintained in a strict range to maintain calcium homeostasis and is regulated by parathyroid hormone. During pregnancy the levels of calcitriol, the hormonal form, increases by double or triple to levels you’d see in granulomatous disease or intoxication but without hypercalcemia. The body deliberately raises both calcitriol and binding proteins in order to support placental development, immuno-regulation and fetal skeletal growth. The levels then fall back into normal range 2-6 weeks postpartum. There is still much we don’t understand about this intriguing process.

It’s interesting that many female warriors report skipping cycles during pregnancy and to also consider why they return postpartum (and perhaps also why MS relapse may occur postpartum), and although tempting to speculate it may have something to do with the increase in calcitriol and its immuno-modulatory properties, probably an oversimplification - the body is just so complex.

Dr. Hollis & Dr. Wagner have a combined century or so of research looking at vitamin D and reproductive outcomes, this was a great talk from last year although can’t recall if they cover the specifics of the points above.  

 

That’s interesting I will watch that.

I did test my vitamin levels during a cycle to see if I was deficient in anything but everything was at normal levels.

 

[Nutcluster]

Update. 3 days ago I started a small amount of topical estrogen replacement and today have had a CH attack. It was a minor one but definitely the kind of thing I would experience at the start of a cycle. Yet Google tells me the opposite should be true, that CH are more likely with low estrogen levels ?????
 
 

[jon019]

17 hours ago, Nutcluster said:

Yet Google tells me the opposite should be true, that CH are more likely with low estrogen levels ?????

....not aware if high or low estrogen is a CH trigger....my PERSONAL belief is that changes to routine or body chemistry CAN be. mayhaps a discussion with physician to ramp up the estrogen a bit more slowly. i also note that an amazingly high number of medication side effect warnings suggest the exact reason for taking the med (headache for example) as a potential side effect. a bit frightening until you consider you affecting the system or chemistry that is causing you problem. sorry if thats a little "what?...hard for me to explain things these days...

best

jon

[CHfather]

One kitty is for wusses.

 

[Craigo]

On 12/7/2025 at 12:50 AM, Nutcluster said:

That’s interesting I will watch that.

I did test my vitamin levels during a cycle to see if I was deficient in anything but everything was at normal levels.

 

The range for normal depends on the country and the lab. Quest offers a range of 30-100ng/mL however the specific regimen you may read about here and on other platforms for CH prophylaxis targets a vitamin D blood level of 80-100ng/mL for episodic, the upper limit for Quests range for normal and slightly above that for chronic CH. Enjoy the watch and hopefully a pain free holidays ahead. 

[Brooklyn77]

On 11/22/2025 at 11:26 PM, Nutcluster said:

Hey everyone

I’ve had a look through old posts and nothing really recent is coming up and not all experiences are in the same place so thought I would start a new thread to help us all figure out how hormones may impact CH. Whether you’re male/female/trans (saw that trans people have particular insights on this topic in old threads) what are your experience in this regard?

So, here’s what’s going on for me atm.

I’m female, early 40s and the last couple of years my CH have been less frequent. Usually I get them every year at around this time (I’m in the UK and it tends to link to daylight saving). Over the years (about 20) they have switched between the other clock change in about April but usually not more than one cycle per year.  During pregnancy I didn’t have them, but both pregnancies were Jan-Sept so not during Oct clock change. However, about 2 weeks after both pregnancies I got hit (as you can imagine, my sleep was bad during that cycle).

This last few years I’ve skipped a clock change and the headaches have shifted to the next one. So instead of going a year I’m going 18 months remission. It has now been 19 months since my last attack and I have only had a couple of possible shadows (those that usually indicate the start of a cycle but it hadn’t followed the pattern which is to be like that every day until the start of the bad ones). Hoping that they’re gone for good but thinking it may be linked to a drop in estrogen. 

I have also noticed other symptoms which could indicate a drop in Estrogen (oestrogen in case anyone is searching). My worst headache cycle was a year I got a contraceptive implant (which I had taken out because the correlation with intensity was so strong) so I’ve always thought hormones may influence the severity of the cycle. 
 

I am obviously very happy that the CH might be stopping but I may also need to address other symptoms that are starting to bother me. Naturally I am trying to avoid doing anything that will bring back CH. 

Can anyone else share any experiences at all which may be linked to hormones so we can have them all in one place for anyone looking? Whether you come across this thread today, or in 10 years from now add your thoughts so we can learn as much as possible about this condition! 

Hi! I don’t have any real data here but I too noticed my cycles were linked to my hormones. When I first started getting CH back in highschool it was always during my placebo week of my birth control, which was an estrogen pill. When I switched to other kinds I noticed the pattern of headaches would always be around the time of my period. I took myself off birth control maybe 7 years ago now. My last CH cycle was last year. I started getting them yearly or bi-yearly around fall/winter instead of in relation to my cycle. I use vitamin L maintenance routine to keep the headaches away but I do notice shadows right before my period begins. So I do think the two are linked for me! I have also read a few other people who had similar experiences. That being said, I’m not sure what to do with this knowledge, but it is interesting that many women experience that! I just started seeing a functional medicine doctor to get full labs on my hormones, etc. and will share if I fine anything helpful!!! 

[xBoss]

On 11/23/2025 at 5:19 PM, Bejeeber said:

I see the kitty in your profile pic now @Craigo 

We have been saving them from the Detroit streets for 17 years. Ten of them!

[Ange72]

I have paraxsysmal hemicrania directly linked to hormones. 

Started age 15, two weeks in cycle, two weeks out. This continued until age 24 when I fell pregnant. I had zero attacks during pregnancy.  Exactly 1 week after I had given birth, attacks started again, opposite side, moved from right to left. Attacks for about a year following the birth of my son became sporadic but the attacks were way more intense than I had previously experienced.  I went on the depo injection, I found this stopped cycles until about a week before my next injection was due, then once I'd had my next injection the cycle would come to an end.  Repeat this cycle until age 43 when GP told me I wasn't allowed depo any longer. Enter perimenopause and for the last 10 years, frequency has gradually increased to now chronic for the last 3 years or so, however attack intensity has reduced. Now post menopause and still constant but less intense attacks. I started on mht estrogen and progesterone November 2024. I had to stop after about 6 weeks as the headache intensity became severe again.  Now just battling on. I have had some success with keto previously,  not 100% but it definitely helped, I've just started back on keto again so we will see what happens. I have also just had my vitamin d tested, awaiting results, as I intend to start the vit d regimen to see what impact that has.  

[FunTimes]

3 hours ago, Ange72 said:

I have also just had my vitamin d tested, awaiting results, as I intend to start the vit d regimen to see what impact that has.  

I don't think you need to wait for the results before starting the Vit D. You can get started now and adjust when you find out what your levels are. I would be willing to put money on that you have low D levels. What do you use for aborting your attacks? Oxygen available? 

[Ange72]

5 hours ago, FunTimes said:

I don't think you need to wait for the results before starting the Vit D. You can get started now and adjust when you find out what your levels are. I would be willing to put money on that you have low D levels. What do you use for aborting your attacks? Oxygen available? 

No I don't need to wait but results shouldn't take too long hopefully.  

I've never been able to get hold of oxygen unfortunately.  I only have indomethicin which I only use when headaches become unbearable as it is horrible stuff. The side effects are not pleasant.  In my HC the attacks only usually last 20-30 minutes with the worst of the attack being about 10-15 minutes in the middle. For that I use my icepack, pressure on certain spots on my head and deep slow breathing to relax and just breath my way through it.  I've tried various different methods of aborting over the years, but nothing really reacts quickly enough.  Most attacks are through the night and I'm usually slow to respond. I try to just go back to sleep hoping it won't actually come to anything.  Not usually how it works out though.

[CHfather]

@Ange72, it might be worth trying oxygen, because sometimes it works or at least helps, but as I'm sure you know, that's rare with hemicranias.  Similarly, triptans rarely work, but they could be worth trying. We've had some people here with hemicranias mention getting some relief from oxygen and/or triptan injections. 

Busting sometimes provides some temporary relief (a day or maybe two). 

Your experience with indo side effects is sadly typical. Other possible treatments for PH that are typically listed are other NSAIDs (aspirin, naproxen and diclofenac); COX-2 inhibitors (celecoxib and rofecoxib); and calcium channel blockers (verapamil and flunarizine). I have read lately that vagus nerve stimulation is helping with hemocranias: one such device is the GammaCore.  But really hoping the keto, and D regimen, will make a difference for you.

You mention in your post that the headaches are "constant." Did you mean that you have some kind of background pain all day, with eruptions of greater pain, or did you just mean by "constant" that you have many of them every day?

(I realize that I might sound here like I might be a doctor or some kind of expert. I'm just reporting what I've seen here and read.) 

 

[Ange72]

7 hours ago, CHfather said:

@Ange72, it might be worth trying oxygen, because sometimes it works or at least helps, but as I'm sure you know, that's rare with hemicranias.  Similarly, triptans rarely work, but they could be worth trying. We've had some people here with hemicranias mention getting some relief from oxygen and/or triptan injections. 

Busting sometimes provides some temporary relief (a day or maybe two). 

Your experience with indo side effects is sadly typical. Other possible treatments for PH that are typically listed are other NSAIDs (aspirin, naproxen and diclofenac); COX-2 inhibitors (celecoxib and rofecoxib); and calcium channel blockers (verapamil and flunarizine). I have read lately that vagus nerve stimulation is helping with hemocranias: one such device is the GammaCore.  But really hoping the keto, and D regimen, will make a difference for you.

You mention in your post that the headaches are "constant." Did you mean that you have some kind of background pain all day, with eruptions of greater pain, or did you just mean by "constant" that you have many of them every day?

(I realize that I might sound here like I might be a doctor or some kind of expert. I'm just reporting what I've seen here and read.) 

 

Hi, I've had PH for 38 years, I've lost count of how many times I've requested oxygen. It is always denied. 

Up until about 3 or so years ago, there were clear pain free periods between attacks and between cycles.  Now I have constant pain, always around a 2-3 level between attacks with attacks several times a day (sporadic) anything from 6-10 level and now there is no cycles, it's all the time.

Example today, 1am woken with level 6, took naproxen lasted 20 minutes, went back to sleep, woken again at 3am with a 7 lasted 20 minutes, woke at 5am with another 7, took naproxen lasted about 30 minutes then no point going back to sleep as alarm went off to get up for work at 5.30am.  Got to work at 7am,  8am, level 8, off to hide in the bathroom, for 15 minutes, had tried to ride it out at my desk but couldn't.  11.30am another 8, 2pm, another 7, got home at 4.30pm, 5pm rolls around and hit with a 9, more naproxen, ice pack out, off to hide in my bedroom.  All the while I have a lingering low level pain between attacks. Today is the worst I've been in a while. Going to hit the indomethicin tonight at bed time. 

Have had verapamil in the past, did nothing. 

Very difficult to get anything here in New Zealand.

I was misdiagnosed with CH in my teens, was only a few years back of doing my own research that I heard about indo and managed to convince my doctor to let me try it, it worked and from there rediagnosed with PH.

Episodic PH has become chronic HC

I'd rather try natural solutions, all these medications just make me feel rubbish on top of headaches. I like to be able to function. 

I've had some success with keto in the past. I only started keto again on 1st January so I'm wondering if this rough patch is just my body working out what I'm doing to it and it will settle down after a course of indo

 I did have a bit of a carb binge over the Christmas period so that won't have helped.

7pm and another coming on now, off to get ice and go hide out. 

[Ange72]

And that was a goodie.. 

Post attack eye attached

[Ange72]

On 12/13/2025 at 9:25 PM, Nutcluster said:

Update. 3 days ago I started a small amount of topical estrogen replacement and today have had a CH attack. It was a minor one but definitely the kind of thing I would experience at the start of a cycle. Yet Google tells me the opposite should be true, that CH are more likely with low estrogen levels ?????
 
 

I initially thought the same, but I was wrong, very wrong with my attempt to supplement estrogen.  As with you, soon after starting I was under attack.  I added progesterone into the mix but no improvement.  As I had mentioned in my previous post, zero attacks during pregnancy for me. I even once said I might just stay pregnant forever so that I don't have Headache but life didnt play out that way. During pregnancy there are 6 main hormones in play. Estrogen, progesterone and prolactin increase and stay at higher levels until birth, hcg increases then slowly decreases, oxytocin jumps in at the end, but relaxin jumps up then levels out and gradually reduces again until birth. Now relaxin relaxes blood vessels to increase blood flow.  Relaxin also increases prior to menstation to start preparing the uterus for pregnancy.  Relaxin kicks in about day 14 and peaks at day 21, then drops down quickly.  Now interestingly, my HA cycle always started day 22-23 and lasted two weeks which coincidentally lines up with the increase and decrease in relaxin hormone..  might be onto something here

[Ange72]

9 hours ago, CHfather said:You mention in your post that the headaches are "constant." Did you mean that you have some kind of background pain all day, with eruptions of greater pain, or did you just mean by "constant" that you have many of them every day?

 

Yes, this is what my PH has morphed into 

Background pain all day with multiple eruptions of greater pain each day

This is every day, whereas previously, I had clear cycles