Good Morning Everyone!
My name is Erica and I found your site through google searching about cluster headaches. Just a little background on me - I was diagnosed with acute episodic cluster headaches at the age of 14 (I'm 27 now). In the beginning, getting a diagnosis was extremely difficult. I think God for my Mom who was my advocate because she knew something wasn't righting did so much research. I had the classic symptoms- SUDDEN onset of headache at night (sometimes 30min-1hr after falling asleep), behind my left eye - which then would become puffy, teary, and red. I felt like someone was pulling my eye out-often times unbearable. My headaches last from 15min-1hr 30min. After a month or so, they would disappear for almost 10months-to a year. My Dad also had acute episodic clusters from the age of 18-early 30s. He hasn't had one since (knock on wood).
Unfortunately, I have a cardiac history - I have a pacemaker/ defibrillator for Vtach (diagnosed at 12 while running track- had cardiac arrest and survived!) From a heart standpoint - I am great. But it is an issue for me while taking the triptans. For the heart - I only take Nadolol which is a beta blocker to keep my heart rate down.
I recently started Emgality at the onset of my cluster headaches and it seemed to decrease the severity of the headaches and shorten the duration. However, I still get those unbearable headaches here and there. I was given the sublingual Rizatriptan which actually works like a charm - but obviously need to be super cautious due to the cardiac warnings. I take Excedrin because of the caffeine and it'll help for the cluster headaches that aren't so severe. I also will take this to give myself a break from the triptans. I recently was introduced to a medication called "Nurtec" - I liked it because there aren't any cardiac side effects but wanted people's opinion. I love that it's sublingual, too.
When a cluster period starts - I will avoid alcohol like the plague haha, anything with MSG in it, running (for some reason - it triggers them for me), use a mouth guard because I clench my teeth at night due to the stress of the HA's, and take Benadryl here and there because I am sleep deprived by week 3 of clusters. I have gone as far as using "Sinus Plumber" during the onset of a HA - which I didn't see much of a difference besides my nose feeling like it was being burned off. I also started multi vitamin that I take every day. Almost all my headaches are at night time. I usually will get 1-4 a day depending on where I am in the cycle. My cycle lasts for a little over a month and then disappear.
I wanted to see if anyone had any additional advice for me. Is there something else I can be trying? I appreciate any suggestions and so happy I found this site. I have already found some useful information!
