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Is this really cluster headache?


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Dear All,

I hope you are well and are having a good (hopefully pain free) day. 

New to the forum, and also to the cluster diagnosis, I am trying to wrap my head around what is going on with me and would really appreciate if you have the patience to give me your opinion.

My profile: Female, 35 years old, mother of one child, history of migraine in the family (mother and aunts)

"Cluster headache" history:

- September 2018:  strong headaches in one side of my head (right side) and a combination of running/stuffed nose. At the time I thought it was a sinus infection but my otorhinolaryngologist dismissed this possibility. The pain lasted 1.5 months and then disappeared. No medication seem to effectively help.

- September 2019: right eye swollen, right nostril blocked and headache stronger than last time. I could not stay in bed, could not think straight but sound and light were not a problem. The pain would get better from time to time but there was a permanent pressure behind my eyes. Ibuprofen did not help, aspirin 1000 mg seemed to have helped a bit but naratriptan 2.5 mg tablets (OTC in Germany) seemed to have had most effect.  After sinusitis was ruled out,  I visited a neurologist and he diagnosed me with a combination of migraine and cluster headache but told me himself the he was not completely sure. He prescribed rizatriptan 10 mg tablets... the tablets helped to cut the pain down to 1 hour (instead of the typical 3 hours that I was facing before) but I had a lot of difficulties to function with more than one tablet a day. This went on for 1 month, then the pain started fading away for two weeks until it disappeared . Forgot to mention, I had an MRI scan, everything normal as well. 

- December 2019: Exactly 1month after the previous crisis, same thing again... eye swollen, blocked nostril and massive headache. The neurologist, now more certain about the Cluster headache diagnosis, put me on sumatriptan 6mg injection. With Sumatriptan 6 mg I can cut the headache within 20 minutes but have instead chest pains and a feeling that I cannot breath and this goes for 30/45 minutes. Also, after staring on sumatriptan my right eye was no longer swollen but the nose would get blocked before every crisis.   I was also very lucky to have two tanks of O2 prescribed. O2 significantly decreases the pain but does not make it go away. 

- Beginning January 2019: Pain starts fading away

- Mid January 2019 until now: pain is back as before - eye swollen, blocked nostril and massive headache. Current approach: Sumatriptan 3 mg injections, O2 and Verapamil 240 mg 1x day. I am taking the Verapamil for two weeks now and I am not seeing improvements in the headaches... but it makes me tired all day.

 

Facts that make me question the diagnosis:

1) I have tried to stay completely without medication to observe the pattern of the pain and it seems to me that I generally have 3x to 4x day peaks of approximately 3 hours. In between I have this strong pressure around and behind my eyes and very few moments totally pain free;

2) the pain is excruciating, but I have never felt like banging my head against a wall (yet), never fainted because of it, and could even do some tasks during crisis...however, I have seen a significant cognitive decline during crisis (difficulties to solve complex problems, to concentrate on conversations and even to form sentences);

3) The swollen eye, dripping nose is very evident at the begging of the cycle and then after some crisis it disappears, leaving behind just the stuffed nose.

Questions:

1) Does anyone face a similar case of "atypical" cluster headache?

2) For the chronic patients: how can you keep your normal daily functions? Does the sumatriptan leave your head foggy? :-)  I was in sick leave for a while and I am now changing my job, so I have some time off from leftover  vacations and over hours...but life needs to continue once I start in my new job and I do not know how.

 

Thank you all very much for your time and please accept my apologies for this huge message and ignorance on the topic.  

Kind regards, 

Lilly

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Welcome to the site Lilly. 

Perfect first post.

I would look at your oxygen setup first. what size are the 2 tanks that you have and how fast does your regulator let out the o2? You will want to get as much oxygen into your system as fast as you can at the first feeling of a cluster coming on. This sometimes needs up to 25lpm regulator and a larger rebreather o2 mask. The symptoms you feel with stuffy/runny nose swolen eye, I tand to get them all too just not all at the same time and not the same thing every attack. One attack i might have a stuffy nose and get the feeling I am over heating the next one I might have a tearing eye and be cold. 

Sumatriptan injections work great in aborting your clusters but some believe the more you use them the more attacks you can get and they can make you feel groggy after you take them this is why the oxygen setup is so important. If you optimize your 02 setup you will cut down on the injections and feel much better. 

The Verapamil will take some time to make a difference and people usually take a larger dose up to 720mg a day of this but only your doctor can up that for you.  

 

Look around on this site and ask a tun of questions and you will find a lot of help here. 

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Hey @Lilly 

glad you found the forum. Joining was the best thing I’ve done so far. It’s good you kept such a detailed history up until this point. This will give a more accurate diagnosis. I was also diagnosed with “atypical cluster headaches”. I don’t get any of the eye swelling or nose running symptoms, and until this point I am actually able to function. I’ve onlu had shaddows since July 6th (still going on). I feel fine until the evening and then it’s steady shaddows until the next day. They morph over time, so I went ahead and got my oxygen tank right away for the emergency situations. I would get on the vitamin d regimen right away. 

 

Kat

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Not all CH's are max pain kip 10's. This last cycle I am working out only had a few horrible ones, the rest were more like level 8's

 

GL! And hang in there.

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