caret icon Back to all discussions

Cluster Headaches...

Been diagnosed with clusters now for 7 years and brother are they painful. I have tried every imaginable medication and treatment but oxygen and the new Qulipta, has really cut down on the number of epidsodes. I still take a number of medications when a bad number of episodes occur but I do not let them rule me I take charge and carry on. I forge through them and do the best I can to make it through. I am now retired and have the luxury to rest in my DARK ROOM I have created when they occur and rest. All you can do and make the best of it. There are days whenI do have migraines only but they are mild in comparison to clusters. They happen on one side of the head and particular over the eye and no wonder they call them "suicide headaches" wish you were dead they get that painful and you sit and cry out in pain but crying makes it worse, so you just succumb to the pain and soon it will diminish and you can catch your breath and
unclench your fists and unravel yourself from the fetal position and breathe again in a normal fashion and hoping another one does not come again. The bad ones do not come that frequently, perhaps 1or 2 times a month but small to medium episodes 2-3 times a day and then silence for a day or two and then BAM, they are back.

In toto, I am so used to the pattern now, that I have just learned to adjust and live with it. Barometric pressure, smells, and weather are triggers for me. I am fine and deal with it. Just part of my daily life.

My medications are: Toprimate, Tramadol, Emaglity 3 injections per month, Butabital,Aceta/Caff (as needed) , 2 BC Cherry Flavored Powders, MigRelief, Ubrevly as needed, and now daily dose of Qulipta. Just me on a good day.

  1. Hi there. I'm so glad you found us! Cluster headaches are truly unforgiving, and we have several members here who have them. Thank you for sharing your raw and honest story of what life with clusters can be like -- there is not enough understanding or awareness of them, and stories like yours are helpful. I hope our community is helpful to you! We're always here if you have questions or want to chat. Sending hugs! -Melissa, team

    1. First I'd like to welcome you to the community! We are glad you've found us. Thank you for taking the time to share what you experience in having both cluster headaches and migraine as well. I understand how awful it is to live with migraine disease, and I know people who suffer from cluster headaches too. The cluster episodes may be shorter than a migraine cycle, but I've heard the pain can be even more severe than what we experience with a migraine attack. I'm glad you have come to terms with these conditions and are living your life the best that you can despite carrying this burden. You have a good therapy regimen in place that is helping you too. You are the first person I've come across that is taking Emgality 3x per month. My husband is taking it monthly along with Nurtec and it helps dull his headache pain which is awesome. How do you navigate the expense of your medications every month? I hear of so many people who struggle to find effective ways to manage this aspect of their healthcare. Again thanks for sharing your experience with us and I hope to hear from you in the future! Warmly, Cheryl team

      1. I'm so glad you shared your story! I have cluster headache as well as migraine as well. I was on Aimovig for over 3.5 years and just made the switch to Qulipta and I was so nervous but it is doing as well as the Aimovig and maybe a bit better. I'm glad it's working as a preventive for you! I hope you are able to regain your quality of life a bit day by day - such a beautiful smile - despite how hard cluster and migraine attacks they haven't stolen that. Keep hanging in there. Anna, team.

        or create an account to reply.