Anyone have Cluster headaches? What helps?

Hi @benchi300, were you able to see @vellen's response and what they have used to help with their symptoms? I'd like to also invite @faithann64 and @jalo as they also discussed experiencing and struggling with cluster headaches/migraines.

@benchi300, was verapamil what has been prescribed to you? How are you currently managing your cluster headaches?

I've had them for many years and been taking Topamax about two months now. I am getting fewer and less painful migraines. I'm not sure how long this medication has been out but I wish I found it long ago. I had been taking Sumatriptan after a migraine started. Of course the ones I'd wake up with were the worst and when coupled with nausea, very difficult to get ahead of. I haven't had one of those. Pretty amazing. One plus side effect is weight loss.

Have u found relief with preventive treatment. Is Verapamil a good treatment that keeps its efficiency over time? Thanks for your help.

Has anyone tried Verapamil as a preventive for cluster headaches? It’s been known to help as an off label benefit.

@echom1, there is a possibility a thiamine deficiency may be causing your cluster headaches. Thiamine is subject to being diminished or destroyed by anti thiamine factors. The stuttersence link contains a comprehensive list. Thiamine also needs magnesium to activate it and like thiamine there are many causes of magnesium loss such as stress, pain and medications. The krispin link offers a list of others. The blood brain barrier poses a restriction on both magnesium and thiamine. Fortunately fat soluble thiamine forms such as TTFD, sulbutiamine and benfotiamine are not impeded. Magnesium threonate can also pass through the barrier. However, be aware that the amount of magnesium in the supplement is low and should be not be relied for total daily requirements. Always consult your health care provider before using any supplement.
http://stuttersense.blogspot.com/2014/08/these-factors-reduce-your-thiamine.html
https://www.krispin.com/magnes.html
https://pubmed.ncbi.nlm.nih.gov/29850313/
https://www.hindawi.com/journals/crinm/2018/3901619/

My friend was put on oxygen to stop his cluster headaches.

Oh I guess I'm suppose to put what I do when I have them. I cry pace douse that side of my head with ice cold water, I take the imitrex pills, and just try to get through it without disrupting the world I'm in at the time. Terrible things to endure.
Treatment right now for me is predinizone every six weeks to two months depending on headach onset. And sumatriptitan aka imatrex I believe. The ten days of predinizone typically kicks them and makes them go away for six weeks to 2 months which is good. The side effects of the predinzone ate a bummer but better then the headaches 8 to ten times a day.

Yep been having them about a year now. There terrible. I'm sorry to anyone else going through this.

Hi @elsie37 you my have noticed I moved your post to this existing discussion on cluster headaches so that your post would be seen by more people wth similar experiences. Simply click VIEW & REPLY in your email notification to find your post.

That must be frightening to see your husband have this severe attacks right now. @msb18, @mnvo96, @kristiesmith221 and @kariulrich may be able to offer you support as you search for ways to help your husband.

Back to you @elsie37 was your husband given any treatment at this time?

Moderator, are there any discussions on cluster headaches? Thank you for any assistance you can provide. Asking for my husband who is suffering severe attacks right now.