Madam

I called and asked and seemingly clueless as she said mg/ml but as she prescribes me the vitamin d in medical oil grade D-Cura 25.000ie ampules she won't prescribe me any more until I get it lowered. A huge spanner has been thrown in the works though, I am just home from the hospital where I spent 6 days. I have never had gallbladder problems in my life but it seems it had gone necrotic and had to have it removed in an emergency, I had a huge infection inside so had to stay in hospital. So besides being off the regimen now for 10 days plus (I stopped taking them as I felt ill 4 days before the ER) I now have also learnt that the body without a gallbladder has problems absorbing fat soluble vitamins (D, E, A and K) which presents me with new problems. I could cry... I need to start all over again and wonder what the impact will be on the vitamin intake. I just wish I had a doctor who knew the protocol that could talk me through it and make sure it is going right via blood tests etc. I only got these measurements as I had not been feeling well. Sorry for venting, I have had a rough time lately.

Anyone know how long I need to abstain from Vit D to get my levels lower? I don't know how long it takes for the levels to drop and when i can continue taking it again.

Thank you Spiny!!! I believe I have to be around the 80 mark on vit d but have no clue how long it takes to lower my values and when I can start again. I have no clue how it got so high in the first place, I don't go over 70,000 ie a week.

It has been working for me, I still get Clusters but the intensity is a lot less and it makes them more manageable. I just got my bloodwork back as I have not been feeling well and the doctor has asked me to stop taking vitamin d as the levels are at 216 which she says is way too high. I have been doing the vitamin d regimen on my own for the past 2 years without guidance and following the protocol online. I take 25,000 ie vit D twice a week and then there is also some vit d in the multi vitamin and also in my magensium/calcium tablets. Vitamin D - 216 Calcium - 2,44 nmol/l Magnesium - 0,84 The above are my results. Do I need to take a break from taking the vit d?

Thanks Batch, I really need to find the time to message you. I am on day 10 of the 12 day loading and have hardly eaten or kept food in for the past 2 days, besides the cramping & diarrhea I am also very nauseous Trying fries for dinner was not a good idea lol I would love it if you had the time to look at what I am taking and maybe see if I am going wrong somewhere ... it is hard to get the same brands over here in Europe and there are so many different doses/manufacturers/types I am pretty sure I have all the co-factors and have been taking them but the magnesium was too low on the one I bought which is mixed calcium/magnesium so bought a different kind of magnesium with D3 to take separately to get the right dose of magnesium. I take all the co-factors in the morning after breakfast and then de D3 50,000 & the calcium/magnesium when I go to bed as they both seem to make me pretty sleepy. I am sticking with it as I have not had a cluster since starting which is a miracle - 10 days of no attacks!!!!! But I am pretty miserable with the side effects which I would take over an attack any day by the way.

Yeah opiate addiction sucks, my neurologists fault for putting me on them at the start of my CH journey. I am down to 100mg a day now but as soon as I go lower the withdrawal sucks and it brings on attacks. I will need to time it when I can lock myself away for a good few days to deal with it. Hopefully I can find some time before christmas, if not it will be in the new year. I haven't looked into busting a lot yet and not sure how it works as I knew from the start it wasn't an option with Tramadol, a dutch study actually says the tramadol will completely stop any effect of the MM so it is useless and dangerous to try so that put me off from day 1 and why I am trying the Vit D route at the moment x The things we all try and do just to get rid of this pain...

I am definitely not against MM, I think I worded it wrong. I am addicted to Tramadol which is an opiate with SSRI - MM works on those same receptors so as I am addicted to Tramadol the MM won't work. What may be an option in the future is to use the MM to ease the withdrawal from Tramadol. Thank you so much for taking the time to reply xxxx Appreciate it x

Okay - thanks!! I definitely don't want to give up on the D3 but it is hard at the moment for obvious reasons. I hope he doesn't mind me dropping in on him but I will try x

Hi everyone, I have had chronic CH for 4 years now. I was prescribed Tramadol at the beginning of this journey and am now addicted so MM are not an option. After 2 years of moaning and begging I finally got Oxygen at home and my neurologist has sorted 25,000 IU Vitamin D3 liquid. I showed her the D3 regimen and said I could try it if I wanted, she tested my Vit D and it came back at 19 (I rarely leave the house) Anyway long story short - I started 4 days ago and every day I am progressively getting worse diarrhea and stomach cramping I am not sure what I am doing wrong. I called my Neurologist and she said to stop with the D3 as it could be causing kidney stones... I am pretty much on my own with this and not sure I am dosing correctly or have all the correct vitamins (have you guys seen how many there are out there!!!!) I am desperate to keep it going as I have not had an attack since starting. Any D3 gurus who can help or know why I might be having these symptoms and that it really is not dangerous.