I'm a 25 year-old-female, and this is my third year experiencing cluster headaches. I've been to many doctors and have had many tests done to rule out other options. All of my doctors have told me that my age and sex is unusual for people experiencing cluster headaches. I have extreme pain in my eye, nostril, and top molars all on the right side of my face. The second I start to feel the pressure, it has already turned into a full blown debilitating headache. My eye and nose runs constantly. I pace around my house, roll around on the floor, or get in fetal position with my face to the floor, rocking while pressing on the right side of my face.

I've tried Teradol and Imatrex for the pain, and it only makes a dent in it. I'm also on Prednisone. It worked for me last year, but doesn't seem to be having the same effect this year. I've been on it for two weeks now. It started at 40mg then gradually lessened the dose in a 10 day period. I got two of the worst headaches I have ever had on the day I went to 10mg. My neurologist then put my on 60 mg a day. I'm only 105 lbs, and my body feels very weak. My back aches constantly. I want to get off of it, but I'm scared my headaches will get even worse and more frequent.

The headaches seem like clockwork. They happen every day around 4pm and 10:30pm when I'm getting into bed. They can last anywhere around 45 minutes(for the lucky instances) and 3 hours. The pressure goes away as quickly as it comes. The people in my life are getting tired of hearing me talk about my headaches, but it seems to be all I can think about. No one around me understands what it feels like, and that alone is adding to my emotional distress and is causing me to isolate myself.

I'm sorry for making such a long post about something you all already know about. I just need an outlet to vent to people who understand. Any ideas about how to cope and different treatments I can ask my doctor about would be greatly appreciated. Thank you!

Hello Alexa. Many of us gulp down an energy drink like Monster or Red Bull at the first feeling of an attack. Any drink with caffeine and taurine.
Usually Verapamil is started along with the Prednisone. After about a week the Prednisone is stopped and the Verapamil is continued for as long as needed.
Have you tried ice packs or heat pad?
Have you tried breathing pure oxygen?

Alexa - given the regularity of your attacks you really should look into Oxygen.  Almost nothing aborts an attack as quickly as O2.  Look at the Oxygen Info tab on the left side and then push your doctor hard for a prescription. If he/she won't prescribe, keep looking until you find a doc that will.  Its not a permanent solution, but it is almost certain to provide you some relief quickly.

Best of luck. Its a tough road, but almost all of us find a way to get through it.  There are alot of very smart, and very experienced people who can give you a world of sound advice and support.

OLD timer here and a woman.. O2 is great... D3 has been my saving grace. Batch can give you the details.

Hang in there.. there's a lot of us "wimmens" out here with CH. 

Hi and welcome

It is possible to have aura with CH, which has been part of multiple scientific journal articles which you can find via Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

So experiencing aura does not in itself rule out what you have as being CH.

It is also possible to have more than one headache type too, with CH plus migraine being the more common, but there are other combinations around. This can make it complex to diagnose and treat.

How are you using your oxygen? It should be using a non-rebreather mask from oxygen cylinders at a high flow rate, at least 15lpm. Read up about it at -  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Are you working with a headache specialist? We've found that GPs and even many neurologists do not have the experience and skills to work with complex headaches like CH.

Your description of the pain level being far worse than childbirth is something that a lot of women here have commented on.

Are you taking any preventives to cut down how many CHs you get and have you anything else other than oxygen to abort them?

Rotten luck about the CH, MackL, but congratulations on the pregnancy and we hope everything is going just beaut.

Sing out if we can help in any way at all, besides just getting ready to wet the baby's head.

Hi McLogan,

Take what Batch sent you with the utmost seriousness. It is working for over 80% of us using it and is, by far, the healthiest treatment for Cluster Headaches you will find.

Are you using Oxygen ?

Peter.

Feeling a little guilty for hijacking Alexa's thread here. Thanks Batch and Abbey.

Unfortunately for me, my neurologist and endocrinologist believe my cluster headaches are actually secondary. I have a prolactinoma on my pituitary gland that gave me very little trouble prior to pregnancy and was easily managed with medication. Since I ceased taking the meds once I became pregnant, the CH has been practically nonstop since March.

Hopefully I can start on meds right away once baby arrives and discuss surgical options with my doc. I'm def willing to try the vitamin regimen but sadly my docs say it is unlikely to work since the likely cause of my CH is this damn adenoma.

Hi Alexa,
I understand the frustration.  I am a female sufferer.  I started CH in 2005 and did not get diagnosed until March of 2013.  It sucks to be on the "rare" side and even worse to not have anyone you know understand what the hell you go through.  I found relief in Batch's vitamin regiment but unfortunately became complacent and quit taking them on a regular basis.  I'm in cycle now, kicking myself that I quit taking the vitamins.  Of course I'm back on them waiting for relief, so please read Batch's email and try them.  I know it gets lonely not to have anyone in your everyday world not understand, I totally get it, so please pm me if you want to talk, it would be good for both of us.

I'm a 27yo female, started getting clusters some time in high school and wasn't correctly diagnosed until my second doctor around the time I turned 21. Previous doctor told me the same story that typically only men get CH and also that it was "really painful, like passing a kidney stone". Well he never asked how my pain was and obviously an 18yo doesnt know much about passing a kidney stone- but whatever. Anyways, after diagnosis I found out my sister-in-law also has CH, shes about 5 years older than me, and she also had the run-around from doctors just cause she's female. I'm starting to think that men don't get CH but actually women get misdiagnosed as having migraines more often that men. Would love to see that confirmed.

RR,

Read up on the D3 Regimen here. Healthy long term preventative that works.

Peter.

Just reading through all these messages and wanted to say that yes more females that you know have these.  I have been living with it for over 30 years and I wish I could say mine were periodic but unfortunately they are not.  I suffer from CH year round.  There are lots of options out there and some do work its a hit and miss you just have to keep trying.  For myself I have yet to find anything.  I take Topirimate daily and that helps for the general migraines but does not touch the clusters.  Getting them during the day when people are around I think is the absolute worst. I can't move, I can't talk, I feel like a hundred spikes are being driven through my head.  I am in the process of finally trying to fight the government for disability.  Not to sit at home and suffer, but to find a way to work at home and support myself with some dignity and work within my limits.  I am allergic to so many medications that my options are limited.  I know myself and many others look for no pity we just look for to have it understood that this is sometimes called a suicide headache for a reason.  Keep searching for your cure, stay positive and keep focused.

Hi, I am now 50. I started having CH around the age of 22 and they were episodic. As I got older, they lasted longer and came more frequently. It took doctors about 21 years for a diagnosis, even though I showed my painful red eye to several doctors. Ironically, I learned that while general MDs seemed to have no clue what CH are, chiropractors and dentists are VERY familiar with them.

Right now, have been in a chronic state every day since past summer. I wonder if that could be because of a new medicine from another doctor (non-neuro). It has a side effect of "headaches."