I have cluster headaches from the ruptured brain aneurysm surgery I had 5 years ago. They are off and on and as of last week they are on. I had a horrible one last week that about sent me back to the ER to get an anti seizure (dopamine?) injection. I am on Verapamil, Keppra, and Baclofen as preventative and Zomig as abortive. Any suggestions on what I may try? Is the surgery that blocks the trigeminal nerve any good?
Hi Alex...you should get many responses from this post...I never experienced migraines until after the coiling...they were so bad after coiling ... but now I get one at least once a month for a few days...I have to admit your's sounds awful...what does your neurologist say to you...about the clusters...?
You should get many responses on this post...Cyber~thoughts your way ~ Colleen
My clipping was done 2 yrs ago May. I still have headaches, but like Colleen it's at least once a month and some can be pretty rough. My docs here in Pensacola....don't like giving medication. so i don't take anything stronger than advil and sleep. Good luck to ya God Bless
I've had migraines for 30 years. My unruptured AVM & aneurysms were just found last year. (I had a crani to clip the aneurysms & am shrinking the AVM with Gamma Knife Radiation).
The best combo for me so far is taking Nortriptylene nightly (antidepressant often used for chronic pain & to prevent migraines), avoiding some of my triggers (not getting enough sleep, not eating on a somewhat regular schedule), and taking Tylenol for smaller headaches and Maxalt for migraine--works best if I can catch it at onset, especially if I have aura as a warning. I had really bad headaches last month after my GK treatment--ended up in e.r. 3 days later. They gave me a prescription of Norco to take for a couple of days. I ended up taking it for closer to 4 or 5 days until I could finally shake it. (I really don't like having to resort to narcotics).
I took Zomig about 15 years ago & did NOT like it. It made me extremely nauseous. (I don't usually get nauseous with my migraines)
I also keep the blue ice packs for lunch boxes in my freezer. I pull one out, wrap it in a hand towel, and put it on my head.
When my migraines "changed" last fall (a couple of months after first GK & after clipping), my neurosurgeon sent me to a neurologist. She's the one who got me back on the Nortriptylene & told me to practice "good sleep hygeine--shutting off t.v. & computer an hour before bedtime).
We are trying many different paths of treatment (different medication) to see if we can get something to work. I think with the Zomig, I will have him cut my dosage in half because it has given me rebound headaches and made me super groggy. It works when I take it at the onset but it is hard for me to tell if they are coming and I do not want to take Zomig when I think I am getting one because I will get rebounds because of that. On preventative medicines, I have been taking Verapamil and baclofen for a year and Keppra for 6 months. I remember taking Keppra after the brain surgery to ward off seizures then weening off of it and getting really bad headaches after that so I thought we could try it and it has really helped me out a lot. It has cut my cluster headaches down from 2 a week to 2 a month and my normal headaches down from 3 a week to 1 a week. I am not sure if we can try those on a different dosage or if there is a better preventative combo.
my headaches were so bad after the surgery that I was put on the schedule at the pain clinic to get anti seizure drips twice a week. I went through a lot of different neurologists because 2 of them tried topomax on me and it made my headaches 10x worse and the first one thought that I was faking it and the second one would not take me off of the topomax.
I finally went to a good "old school" neurologist who got me on neurotin, some sort of syrup, and apap/sumitrptan. This helped me somewhat where I could halfway work again but occasionally I would end up in the ER.
I moved after I graduated and had to find a new neurologist who took me off of all of the medications that I was on and got me on baclofen, verapamil, tylenol 3, and Maxalt. Those worked a little better but I changed jobs and they were not covered under my new insurance so I found one that was. He is a great guy who listens to me and knows that the best personal neurologist in most cases is the patient. He has helped me think on what has helped and what has hurt.
Bless your Heart Alex...I feel for what you are going through...
I can tell you I use Feriocet...for mine...but like you I have to be careful because they can lead to "rebound headaches"...but I donot have the half of what you are going through...
Hopefully something will eventually work...Cyber~thoughts your way ~ Colleen
Now I remember that I had taken Fiorecet in the past and that helped me some. Maybe I can add that on to my Zomig to aid in relief of headaches.
Fioricet/Fiorinal give me rebound headaches, too. That is what I was prescribed when I said I wanted something different than Zomig. I can't function at school on Fioricet/Fiorinal & don't feel safe driving when taking it. I would often call in for a sub, drive to school to put together lesson plans, drive back home (30 minutes each way), then take the Fioricet & crawl into bed. After I couple of years, I asked for something else. That is when I was prescibed Maxalt.
When I went to fill my Maxalt at the pharmacy, the pharmacist told me that the Fioricet "masks" the pain, but doesn't really get rid of a migraine.
I am going to try Fioricet to take by itself for lighter headaches and with Zomig in extreme cases. I will see if he will cut down the Zomig so I am not a groggy, moody bastard after taking it. I am going to talk with him about the mood pill that help headaches (not lithium) because I have anxiety issues since the aneurysm. Also, I will see if he will add a dose of Verapamil and maybe add Neurotin at night for preventative medicines. Thank you all so much for your suggestions!
Hey this is old! I’m closing it. Feel free to start another post.