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Another Newbie From Chicago (Read 1639 times)
Bally
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Another Newbie From Chicago
Nov 29th, 2017 at 1:33pm
 
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.”   Sad 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
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Mike NZ
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Oxygen rocks! D3 too!


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Re: Another Newbie From Chicago
Reply #1 - Nov 29th, 2017 at 2:05pm
 
Hi and welcome Bally

Your neuro seems to have some understanding of headaches, but she might not be a headache specialist. So it may be worth you finding and working with a headache specialist, especially as you also have migraine in addition to this other headache behaviour. Trying to isolate out and diagnose multiple concurrent headache types is pretty complex.

To get an idea of how many headache types there are and their diagnosis, the International Headache Society has a standard definition of each, along with diagnostic criteria at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register. Some of the complexity is not just matching the symptoms but in ruling out all other possible causes for the same symptoms.

If indomethacin stops the headache then normally this is a strong indicator that you have hemicrania continua. This is a drug that isn't commonly used with CH, other than to help rule out this other headache type.

And some people can have more than two headache types, which could account for the confusion around the different symptoms.

For your list of symptoms not consistent with CH, you'll see us refer to "shadows" which are low level CHs which don't quite result in a full blown CH, but can be treated just as if they are, responding to oxygen / sumatriptan, etc.

Whilst most people have many of their CHs overnight, not everyone does (myself included), so the time of attack isn't a perfect indication of CH.

Using sumatriptan tablets, whilst effective for migraine, isn't great for CH since it takes around 20 minutes for the sumatriptan to take effect. Instead the injections or nasal spray works a lot faster in around 5 minutes, which saves a whole lot of CH level pain.

From your questions:

#1 - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
ue_June_2015.pdf - this has some good info on how indomethacin is used with HC. But if you have questions like this you are best to work with your doctor / pharmacist as they know your medical history.

#2 - this is hard to answer as until you've got confirmation of what headache type(s) you have, you'll not know what symptoms to match up to your current headache to determine the medication. Once you do know, this will come from practice and knowledge.

#3 - for CH I'm not aware of research linking anxiety to CH frequency / intensity.

Hope these answers help, but keep asking all the questions you have and read up all you can here.

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Bally
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Re: Another Newbie From Chicago
Reply #2 - Nov 29th, 2017 at 9:56pm
 
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?
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Mike NZ
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Re: Another Newbie From Chicago
Reply #3 - Nov 30th, 2017 at 9:57pm
 
Bally wrote on Nov 29th, 2017 at 9:56pm:
Unfortunately a different doctor isn't an option at the moment, but she is always receptive if I've done my homework.


It is great that she is receptive in this way as not all are, but be aware that she has limited experience in this area and when it is possible to see someone more experienced it is probably worth consulting them.

Bally wrote on Nov 29th, 2017 at 9:56pm:
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?


What is key here is to try to capture anything that might impact your headaches, so I'd include things like the date, day, time, headache duration, pain level (0-10 scale), any medication used, pain description and then any possible triggers which could be anything from what you ate prior to it to the weather.

The next thing is to be able to use this to spot patterns which could be triggers for headaches to what works / doesn't work to control the symptoms.

Since it looks like you may have more than one headache type, it may help identify patterns for each.

For my headaches, I did this using an Excel spreadsheet, plotting out multiple graphs for just about every combination of data, but use what you are comfortable in using.
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