Hello ladies! (And guys- if you have any insight on this topic)
I have been suffering from nasty headaches since I was in high school and can't remember the age of my first actual attack (20?) but I cannot get my neurologist to give me a cut and dry diagnosis of cluster headaches.  I have all the symptoms, almost to a tee, but she is very cautious and wary of giving the diagnosis.  She says women have migraines typically and men have cluster headaches and RARELY has she seen a women with a diagnosis.  I feel like I am going crazy and looking for support.  Statistically, I understand the ratio is 4:1 or something like this, but I was wondering if any other women out there have had this problem?????
I am thinking about changing doctors, but I am being treated just the same as I feel I would (medicine wise) as I would if I got the cluster diagnosis.  Are there any major differences in the treatment plans between migraine and cluster headaches?
I am on Topamax, Verapamil, and Maxalt or Sumatriptan injection for onset of headache.

Thanks for taking time to read this!

The m/f ratio has been becoming smaller over the years. I can't recall the present level.

Never seen any distinction in treatment for m/w in the medical literature. There are differences between migraine and cluster re. treatment.

You will find this site a good source of medical information re. treatment: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Site of one of the leading headache docs in the country. You can find individual articles, by topic, and a e-book ($10) which is loaded with medical stuff, if a bit of a slog to mine.

Has she followed diagnostic protocols in spite of her all too obvious gender biases?  Has she ruled out other causes for your headaches?  What is she calling them?  For me, any provider who does not listen to me, the client, is one I am less likely to continue to see if I have the option to see another specialist. 

While the treatment protocols are similar, there are differences and that could be significant for you.  For example, migraine headaches are not typically treated with O2 and clusters are. 

Just some thoughts about this. 

It seems to be something that quite a few doctors seem to be stuck on the idea that women don't get CHs, only migraines. Even though it seems to be less common for females, it doesn't mean that a female cannot get CHs, so using sex as a diagnostic criteria is not very effective.

If your doctor is still stuck on this it might be time to try another one.

While I understand your complaint, I am curious. The treatment you describe is not a bad beginning for early CH intervention, depending upon levels of dosage. It does lack O2, and you would do well to initiate the vitamin D3 regimen. Share a bit more. blessings. lance

The first neuro I saw (after 27 years of no diagnosis, and finally getting a diagnosis from an Urgent Care doc) actually looked me right in the eye and said "Well, you've described textbook clusters, but we know since you're a woman, it isn't THAT". I found a new neuro.

Hi Molly,
Have you tried Imigran? They have a good outcome in treating
both migrain & CH's ,until you get a proper answer. This can be
hard to get even for us male's from some neuro's out there.
[smiley=undecided.gif]

I really wish docs would get past "You can't have that because you're a woman/man" thing. Every now and then a man can get breast cancer. Jeeze! (My rant for the day. lol)

How long have you been dealing with these headaches and how long have you been taking the medications you're on? Verapamil can take weeks to start working and it usually takes a higher dose than normal to curb cluster headaches. I'm glad you found us. there's a lot of very good information available here and there's almost always a sympathetic keyboard waiting to let you know you're not all alone in the world. You're among friends now.

It's sad that such a man/woman demarcation can still happen in this day and age but I can promise it cuts both ways.

First time I had to front the Breast Clinic for tests I was sat in the waiting room and the looks I got from the women there were nothing short of pure venom. Goddam Prevert, get him outta here!

I swear the cleaner was about to call the police.

For my next trip I borrowed a mate's missus and as we sat there holding hands I received only the warmest smiles and vibes. Isn't that lovely, a man supporting his beloved lady during this dreadful ordeal.

You're right, Molly, there's no room nowadays for such out-dated and sexist attitudes.

Only better days ahead.

Wow! I am so glad I found this site! I have been dealing with these headaches for about eight years (since I was 17ish) and they have been getting worse with age.  I have not tried Imigran (I am going to look it up) and she actually just took me off the Verapamil and put me on Lexapro because I told her I have really bad anxiety and she thinks it will help calm me down and the stress will cease.  She said once this happens the "migraines" will go away.  I have yet to have this happen because I've tried so many medications to help with stress BUT the "headaches" still comes bAck!  I always described them as seasonal headaches or stress headaches before I started doing my research.  I wasn't always stressed when I got the headaches coming back. 
To describe my cycle, I get them around bedtime (9 or 10 pm), SOMETIMES wake up when a killer one, but not ALWAYS the case, only happens about a week in the period, I ALWAYS wake up with one around 7 am, and a lurking headache all day... My cycle is about 2 months and I can't even tell you how long my remission is bc I don't keep track.  I do know when I was pregnant... I did not have a SINGLE one the whole 9 months until my delivery day when I went into the hospital bc of these cluster headaches, not even in labor!!!
Anyone out there think being treated for migraines is the same as cluster head aches because this is the first doctor I have seen that has introduced medications that have actually worked to get rid of the headache- such as maxalt and sumatriptan injection, but the gender bias and not listening to my word on that I feel they are clusters really bothers me....
Thanks!

Now here's a thing. Some time ago my doc sent me for a
breast cancer test after complaining of a stange feeling
in my left breast. That was the first time i ever felt really
:-[ Fair Dinkum.

Hoppy

I go back to my previous comment!  Go to a provider who will listen to determine what your headache is and then treat accordingly.  So many of us have to advocate for our care, especially for these rare conditions.  Guessing, gender bias, and not acting on what you report is unacceptable practice. You deserve answers and relief. :D

From my experience it is very difficult to get a diagnosis of CH if you are female, I am female, so I feel your frustration.  The main thing is don't let the doctors push you into a diagnosis you know does not fit. Believe me I went through ten years trying to get treatment, until one time it all clicked for a family practice doctor. The main reason he got it right was not because of superior training or anything of that nature, but simply because he took the time to listen and understand my symptoms. Find someone you trust.  Hang in there!

CH is a rare condition, so being female with it is even more rare. I self-diagnosed when after 15 years living with these things I found this website (thanks DJ). Later, two different neurologists made it official, and fortunately didn't dismiss me because of my gender. Like you, I also experienced a remission during pregnancy. Try to be diligent about keeping a headache diary. It will help you to find patterns that are unique to your experience of CH, and this can help you manage things in the future of it turns out you are correct about your diagnosis.