women with ch Women with CH

[Cheryl]

Given that the largest majority of CH sufferers are men, and women are frequently mis-diagnosed - does it make any sense to start a general topic solely for women suffering from cluster headaches?

I'm having trouble with healthcare providers in this area and there also seems to be very little data on women sufferers.

Just an idea. Thoughts?

[KJosie]

Hi Cheryl,

In my experience, the treatment is the same. Although, we are..as the docs call us...A Typical. I, fortunately, was diagnosed by a well informed neurologist when I was 14 years old...and have been dealing with cluster headaches my whole life. Ive been told a number of times that I have migraines, even cluster migraines, by uninformed docs, to which I usually reply that they clearly do not know the difference between cluster headaches and migraines and refer them to my original doctor.  The one thing that is different is if you are female and trying to have children. If the vitamin D regimen doesn't work, then there are decisions a woman would have to make versus a man.  I was lucky to not have any cluster headaches while pregnant, which I read was actually common. 

Its not a bad thought, maybe there are other things Im not aware of that other woman have questions about or have had success with. All in all, what Batch has put together here has given me my life back...and has allowed me to have a child that I never thought would be possible  since the only other treatment options were rather harsh medications.

[ThatHurtsMyHead]

Cheryl,

I'm not opposed to it, but it doesn't seem like something that would help.  Everything from treatment, to symptoms etc, etc are exactly the same regardless of gender.  It's educating the doctors that's the real issue.

J

[Cheryl]

I was kind of lucky because I was correctly diagnosed when I was 20 in the 1970s when I was living in England and the stuff they gave me when I lived there worked magic until the episode ended in January. Then 40 years later here I am again at 62 and they're back.

I guess I can see maybe why there's no need for a separate forum since we get treated the same.

But .. you're both kind of wrong because the symptoms are not "exactly" the same. There are a number of differences that studies have found:

1) Women tend to develop them at an earlier age and more likely to develop a 2nd peak after age 50

2) Women are more likely to have some family history of CH and migraine and can also have increased risk of Parkinsons

3) Women are more likely to experience sensory, language or brainstem auras

4) Women are significantly more likely to experience pain in the jaw, cheek and ear than men

5) Women tend to develop more "migrainous" symptoms than men, are much less likely to have the alcohol trigger and significantly less likely to start an episodic cluster in the October-December timeframe (although that doesn't apply to me because both of mine happened in October-December.)

I've noticed that my headache frequency goes up when there's a large barometric pressure change and when I alter my sleep schedule.

Thanks for the reply -- I'll just soldier on in the general forums. 

Best,

Cheryl

 

[spiny]

Hey Cheryl. Can you tell me where you read this info? It is interesting. 

It is nice that the stats are changing on who gets CH. It used to be stated as 2 out of 10 are female. Now that is stated many places as 4 out of 10. A welcome change.

Barometric changes and changes in sleep times are riggers for many. My head is a pretty good barometer!  

[CHMom]

Hi @Cheryl and @KJosie - Just want to introduce myself as a fellow female CHer. I was diagnosed with episodic cluster headaches 11 years ago, when I was in my early 30s. I can share all kinds of stories with you about cluster headaches during and after my pregnancies, but figured I'd just say hello and introduce myself before I unloaded a lot of personal info about myself on both of you.   I'm very happy to make your virtual acquaintance. And Cheryl, thanks for starting this important thread. I can see starting threads on CHs and pregnancy, CHs and breastfeeding, CHs and menopause, all kinds of stuff specific to women. 

[Cheryl]

Hi @CHMom and @spiny. I thought I was getting a handle on my 2nd round of CH but now not so sure... So weird that it should show up again at 62 after 40 years... We (Doctor & I) were pretty sure it was another  round of Episodic but now not so sure since it's outlasted the last episode I had in my 20s which lasted 2 months. This one's going on almost 3 months. It started in October on a camping trip and headaches have creeped through the prednisone and now the topamax - they seem to creep through more when it rains and this year it's rained a LOT. These are different than the ones in my 20s - not as severe but still awful. They started pretty regularly (3:30 every morning) but with the medications are all over the place now sometimes 7:30 AM, sometimes 5:30, sometimes 11:30 sometimes 4:30 or 5:30 - all over the place and then sometimes I'll go 3-4 days without. But they always show up when it rains. Who needs a weatherman! One thing I noticed is that when the headaches came back my hot flashes disappeared!! 

@spiny the differences between male & female was from a survey done in 2008. The United States Cluster Headache Survey was the largest study of cluster headache sufferers ever completed in the United States and at the time was also the largest study of female cluster headache
patients ever presented. There were 183 questions and 816 men and 318 women responded. Apparently the questionnaire was just placed on a website from Oct - Dec 2008 and respondents had to have been diagnosed with CH by a neurologist. I found it here: https://www.ncbi.nlm.nih.gov/pubmed/22482825

 

[spiny]

Interesting abstract Cheryl. 

I had a long remission that ended in my 50's. They returned with fury too. Previously I had been Chronic with lower level pain and no nocturnal hits. When they returned 15 years ago I was Episodic and Nocturnal. Untreated or poorly treated, my cycle runs Solstice to Solstice. Unless it gets prolonged by a surgery or something That produced an 8 month cycle a few years back. Several males have had long remissions  too.  Upon return several changes are notated, such as going from daily attacks to nocturnal attacks. Also, the greater severity is common too.  So I would say that the changes you are experiencing are rather common. 

I suspect that you have looked at the Trigeminal Nerve diagram. It shows all the branches involved with that nerve. The three main branches are over the eye, under the eye, and the jaw. So, that covers all the nerves on the entire side of your face on your CH side. Teeth and sinuses included.

As far as rain is concerned, it usually includes a low pressure front. For whatever reason it is falling barometric as opposed to rising that sets my head off. That is pretty common. It is also common for migraines.

Verapamil is top med for it too, not Topamax. In addition, pred is awful for you over the long haul. Like needing hip replacement awful. It is normally used as a 'bridge' medication to get you thru till the Verap kicks in. You might discuss a medication change with your doctor. And he should know to provide you with O2!!!! It is the best abortive out there and not harmful to your body. It is infuriating when this is not offered as a first line of treatment!! Advance warning - Medicare does not cover O2. 

You might want to try some caffeine at the first sign of a hit coming. It can be a great help. Also, you can set up a welding O2 tank and buy your own O2 without insurance or a script. You will need a non-rebreather mask to use with it for best aborts. 

Oh! Don't worry about being Chronic yet. That means you have less than 2 weeks pain free in a year. It is quite likely that come spring your cycle will end. 

ATB

[CHMom]

Hi @Cheryl - So sorry to hear about this recurrence after 40 years! What a drag! I hope you can get it under control soon. I highly recommend the D3 regimen. I started it for the first time at the beginning of this month (December), and after 2 weeks, my CHs are totally under control. The D3 regimen basically aborted my cycle. Sometimes I will wake up feeling like I have a CH coming on, but once I get out of bed, oddly, it just goes away on its own. I rarely even have to take ibuprofen for these headaches, and I haven't had to take a Relpax (triptan) in 2-3 weeks. 

And even though you're cycle has now lasted 2+ months, I'm not sure I'd call your condition chronic CH. The cycle I had last year lasted 5 months (it was awful - my worst ever), but it finally ended on its own last May. Here's hoping yours ends MUCH sooner than that. Give the D3 a try. Best.

[Cheryl]

@CHMom Hmm.. I was on prednisone for a month in the beginning w/sumatriptan for the pain, now on topamax w/zomig which seems to be working better than the prednisone. I take D3 (10,000 mg/day), melatonin (10mg/night), magnesium, etc. and still get at least one headache a day and I'm feeling pretty lucky because it's better than the 7-8 I used to get back in October/early November. The one a day used to be pretty regular at about 3:30 AM, then they got pretty unreliable for awhile and went up to 2-3 a day before I went on the topamax. Since I went on the melatonin, the one the wakes me up still wakes me up but it's not really bad enough to need the zomig/sumatriptan and can usually go back to sleep. I sometimes get a second one between 2-3 PM and sometimes I need the shot of zomig/sumatriptan and sometimes an extra strength tylenol does the trick - but the D3 doesn't seem to be doing anything and I'm pretty sure if I stopped the topamax I'd be back to 7-8 headaches a day.... unless there's something additional about the D3 I don't know about?

The last time I had these they started in November and stopped in January but if it doesn't stop raining here I'm pretty sure they're going to keep continuing LOL... We're going skiing in February and I'm hoping they either stay the same or go away. I agree though, I think they'll be gone by the spring. I've always always had issues with the fall season with allergies and had trouble with the time change and sleeping so I'm thinking my 40 year CH free was just luck. 

Happy New Year!!