Hello All!

I hope I’m in the right place. 😊 I have received a preliminary diagnosis of cluster headaches, but my doctor and I are still figuring things out. I have a couple questions I could use some help on, but I’ll start with my intro.

I currently live in Chicago with my husband, but we move often for work. I have had migraines all my life and all the other women in my family get them too.  About 8 years ago, I started getting headaches that were much shorter, but much more severe, didn’t respond to any of my migraine medications, and only seemed to get out of control in the fall and spring. For years, my doctor has been attempting to treat these “uncontrolled migraines”, with little success.

Recently, by accident, I stumbled on a video of someone having a cluster headache on youtube, and it was like looking in the mirror. I had always been made to feel as though my “dancing” was because I wasn’t as strong as other migraine sufferers, so I was completely shocked to see that other people were experiencing the same thing.

At my last Neurology appointment, I showed my doctor the video. Since she had never actually seen me in pain, she hadn’t understood what I was going through, but she agreed that we needed to consider cluster headaches. I have been on Sumatriptan for years, so she prescribed Indomethacin and she said that if the headache responded to that, she would consider the diagnosis settled. What that amounted to was that she said “Take this. If it works for you, you have cluster headaches, and we will talk about those when I see you again in 6 months.”    So I’m left with a lot of questions.

Based on the symptoms I have, I’m not 100% sure that cluster headaches are the issue. I’ve made a list of my symptoms that match and that don’t, if that helps any.

Cluster Headache Consistent Symptoms

• Attacks that can reach KIP 10
  Most intense pain lasts between 30 minutes and an hour
  Indomethacin responsive
  Ice pick, sword through my brain pain on always just behind my left eye
  Worst pain seems to come at about the same time of day
  Attacks much more frequent in fall and spring

Symptoms Not Consistent with Cluster Headaches (I think)

• 5 or 6 day of low level pain, punctuated by sudden pain increases to KIP 8-10
  Very rare to have a sudden attack without low level pain first
  No eye pain, redness, droopiness
  No midnight attacks
  Pain in the base of my skull on the left side (this would probably hurt a lot, but the attack is always worse)
  Attacks are not responsive to high dose tablets of Sumatriptan

From the reading I’ve done here, I know I need to ask my doctor about taking the D3, but I have a couple other questions if anyone can help.

1)      The doctor told me to take the indomethacin as needed, but it isn’t clear to me when I should stop taking it. Right now, I take it when I hit a kip 5, but I don’t know if I should stop taking it when the pain stops, or keep taking it to prevent a second attack. In my last bout, I took the indomethacin 5 days in a row, but only once a day because I was able to get back to kip 1.

2)      When I asked the nurse about the Indomethacin, she told me to take that for stabbing headaches and the sumatriptan for migraines, but I don’t know which attack I’m in for when the low level pain starts. I’m keeping a journal to try and better understand the patterns, but does anyone have advice for how to know what treatment to take when?

3)      My doctor and her nurse have been insistent that most of my attacks will go away if I “manage my anxiety better”. I feel like my anxiety comes from the severity of my attacks, and is pretty reasonable all things considered. Has anyone had significant results by adding anxiety medications? Or is there something I can say to get the nurse to stop telling me I’d be better if I would just do yoga?

I’m sorry for the novel! I’ll try to keep my responses shorter in the future. 😉

So nice to meet you all!
-Bally

Hi Mike!

Thank you for getting back to me so quickly! I'm going to start researching HC and talk about it with my doctor when I see her next. Unfortunately a different doctor isn't an option at the moment, but she is always receptive if I've done my homework.

I'm also keeping a ridiculously detailed diary so that the doctor can see exactly what my pain fluctuations look like, so hopefully that will help as well. Is there anything else that I could keep track of to help my doctor zero in on a diagnosis?