8 Years with Cluster Headaches

By Lowenstein1021

1 min read

I was diagnosed 8 years ago with cluster headaches and also have migraines too. I have tried all types of medications and now take a combination of medications to ward off the excruiating pain as I have several episodes per day that can last for hours or days. I can see why they called them "suicide headaches."

I have had migraines since I was a teenager and then they came back in my 30's. They went away again but came back in my 50's and have been with me ever since...

Hoping they come up with medications for cluster headaches soon.

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Nancy Harris Bonk Moderator
Hi <inline-mention username="CommunityMember502" user-id="4708981"/>, Thank you for much for sharing your journey with us. Living with cluster headache is very difficult, we're here for you. We do have a good bit of information on treating cluster headache you can see here; <a href='https://migraine.com/search?s=cluster' target='_blank'>https://migraine.com/search?s=cluster</a>. Many with cluster headache find high flow oxygen beneficial - have you had a chance to discuss this with the doctor? Please keep us posted on how you are doing, Nancy Harris Bonk, Patient Leader/Moderator <a href='http://Migraine.com' target='_blank'>Migraine.com</a> Team
Anna Williams Moderator & Contributor
<inline-mention username="CommunityMember502" user-id="4708981"/> Thank you so much for sharing your story! I too have both migraine and cluster disease and it is a lot to juggle! As Nancy said, there has been some cluster headache information shared on the site. If you don't have access to high flow oxygen with a rebreather mask I highly encourage you to reach out to your doctor. There are some articles that have talked about access to it and I just got mine covered by Medicare which is HUGE! Emgality 300mg has also been FDA approved specifically for Episodic Cluster Headache, again another huge win, but you are right, we need more, so much more awareness and treatment options designed for us. I look forward to hearing how your journey continues and how your doctor might help you find some new tools for you. Pain free wishes to you. Anna - Migraine .com Team Member
1. Anna Williams Moderator & Contributor
 <inline-mention username="Melissa Arnold" user-id="3827796"/> I just saw my local neurologist yesterday and he had NO IDEA this was possible - he was going to call some patients to let them know because they need it.
2. Melissa Arnold Community Admin
 <inline-mention username="Anna Williams" user-id="3727707"/> Sounds like a good guy. I really value docs who are willing to pick up the phone outside of an appointment -- in situations like this it's invaluable. -Melissa, <a href='http://migraine.com' target='_blank'>migraine.com</a> team
Lowenstein1021 Member
I am now on Quilipta 60 mg. Once a day for preventative episodes. Helps!
1. Anna Williams Moderator & Contributor
 <inline-mention username="CommunityMember502" user-id="4708981"/> That's great! I just made the leap from Aimovig (3.5 years) to Qulipta. Since it's not my only preventive I can't tell how much it will help prevent cluster attacks but it is keeping me steady with how I was with Aimovig so that's a win for me. I'm hoping it will help lower my migraine attacks more. I'm glad Qulipta is helping and hope you continue to manage better- thanks for sharing! Anna (Migraine.com Team)
Lowenstein1021 Member
My Neurologist just bumped me up from 30 mg. to 60 mg. of Quilipta and boy oh boy what a difference in preventive episodes. This stuff is really helping with my clusters. But I also take Ubrelvy every 3 days and Emgality 3 x 100 injections once a month along with my other cluster medication cocktails when it gets bad. So, even though it is some relief never a cure unfortunately. Carry on! 
1. Holly Harding Moderator & Contributor
 <inline-mention username="CommunityMember502" user-id="4708981"/> This is really helpful! These drugs are fairly new, as you know, so it's very interesting to hear how they are combined and when they are done so in an effective way. I think this is the first time I've heard of 3 different types of CGRPs used in concert together (in addition to other strategies) and I totally agree that because there's no one cure, the best approach is to combine strategies until a good level of relief is achieved. It sounds like this is what you've done. I'm grateful you shared your strategy (and dosing levels) here so the rest of us can learn from your well-earned wisdom. Warmly- Holly <a href='http://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
Lowenstein1021 Member
I am on 12L flow of Oxygen as needed as well and into 2nd year and it helps but again not a cure for Clusters but a quick band-aid that does help in the process.

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