Dawn French

@xxx, thank you so much for responding, I will do what I need to do to keep the doctor happy and press on with the regimen once my bloods have been done after Xmas. I’m on day four of the prednisone taper and feeling much better but I would rather control my CH with the supplements not steroids. I’ll let you know my progress and Happy Christmas to you and your family.

@Shaun brearleyYes I used Red Bull on holiday as I had no oxygen, I was desperate to try anything! My O2 set up is set to 15 with non rebreathable mask and that’s a god save!

@kat_92Got it thank you! ❤️

Thanks Shaun, I didn’t realise that!

Hi Shaun, to begin with when I upped my vit d I wasn’t using sumatriptan but after the flight I had to because the pain was intense. Once I got home after another flight I had to use the sumatriptan plus the oxygen. Thanks for replying

Kat-92 thanks for your thoughts, the only medication I’m on is an antihistamine twice a day. I think the flights ruined my progress maybe I should have done another loading dose?

Hi Pete & co, I have been recommended by Craig Stewart to ask Batch for advice here. My story is I started CH in the spring of 2021, four attacks per day over three months, I was 59 years old. Fortunately got to see a neurologist quite quickly who diagnosed me and got me on sumatriptan nasal shots, later followed by oxygen. Remained pf the rest of the year and started the Vit d regimen in February 2022, all was great I missed potentially the spring cycle but October I started to get a few shadows so after getting advice I upped the Vit d until I was at 50k. I had a 7 hour flight for a holiday and on landing the beast struck hard! I upped the Vit d to 100k and it tailed off to one attack over night. I experimented with increases plus the extra co factors inc turmeric etc and over the course of my holiday I was having pf days but some nights I was having attacks. By the time I got home, after two attacks on the plane home I was taking 250k, I then had one last push to 300k in a last ditch attempt but to no avail, clear all day but two attacks overnight without fail. I then decided to stop the Vit d as obviously I was aware it could cause problems. I got my bloods done which I’ve attached, my GP was a tad shocked but after I explained what I was doing she fully understood why! So my plea here is, what did I do wrong or is it that it just doesn’t work for me. I’ve been so good for 18 months and really thought the Vit d was keeping me in a great place, any help you can give me I would really appreciate, thank you