Hello all, I just found this group and am so glad! I am a 30+ year chronic CH sufferer.  I am mostly controlled these days. I use to mess around juggling my verapamil in hopes that I could go off it when things seemed to be under control but discovered that for me that was not possible. I take 480mg every day - and never ever forget because one missed dose triggers me. I do occasionally have cycles where the verapamil doesn't work and then my only option is prednisone (which has caused "steroid induced type 1 diabetes).  Living with diabetes is also hell but we all do what we have to keep the pain away. I do live almost daily with "shadows" but they are manageable.  My husband has discovered that when I'm having an attack if he can keep me calm enough he puts cold packs under my feet, which lowers my core body temperature and seems to reduce the severity; unfortunately this isn't always possible but if it can help someone else it's worth a shot.
The reason I found this site is because I was searching around for information for the COVID vaccine and whether it trigger's cluster headaches. I have been terrified to get the vaccine because I don't want to trigger my CH's or create another chronic health problem that I have to live through daily. Of course none of our health care providers here can tell me that (very few understand CH) so I am grateful that I found this site so that I can get real information from people who completely understand. I would appreciate hearing about your experience.
So glad to find all of you, as I read through the message board I was crying uncontrollably; 1 because it's hard to hear of someone else's pain & 2 because it's nice to know I'm not alone and not a freak

I have not seen any data on this topic, so I can only report my personal experience.  I got my Pfizer vaccine in March and had no CH-related side effects at all.  I suspect that if there were associated CH side effects other would have reported them here. 

From posts that I have read, from episodic cluster headache sufferers, it made no difference, but then again, we are all different.

Hoppy

G'day Carmen, welcome aboard, and I can promise you're neither alone nor a freak, (unless the rest of here are, as well).

I had my first shot a couple of weeks ago, A-Z, and it was mentioned beforehand that mild headaches are an occasional side effect. A-googling I did go and all the sites I visited suggested as much, along with the advice that a couple of panadols would likely resolve the issue.

The headache I did get was so mild I didn't even bother taking a pill and all is fine.  Chatting with friends who are also doing the right thing about getting immunised and side effects count for almost nothing amongst the lot of us.

I wish you all the very best from down under,

Brian.

Hello Carmen,

Welcome to our little community.

I too am Chronic and suffer shadows daily, but I have them well managed with the D3 Regimen...worth reading about here.

I have had my two Astra Zeneca, the second about 2 months ago, with no side-effects whatsoever.

I too was worried when going for the first, but not a bother at all.

Hope this helps.

Peter.

J&J back in March......nothing changed head wise.

Hi Carmen, sorry that you know what clusters are, but this is the place to be when you do. To your question, I am fully vaccinated (Pfizer, in case it matters) and during both occasions my head didn't react to the vaccination. Having lived with ch for 20 years, I don't recall ever having ch hits related to vaccinations. It is the fall, cold, sunshine, thunder, dentist, alcohol and spicy foods that I need to worry about.

But it is good to ask experiences, since we all are different and react to ch bit differently.

Wishing you pain-free days,
Sanna