Emmalou

I hope so @Brain on fire, thank you for your comment :)!

Hi Eyecepick. This is my first ever bout of cluster headaches and I can honestly say I’m SO grateful that amatriptalyn has given me some relief, i am still 100% getting the headaches but the pain is a million times better on them. When I first started getting them 3 months ago I ended up taking a few days off here and there as I just couldn’t cope at work. How long have you suffered? Have you found anything that helps you? How long have you suffered? I hope you don’t mind me asking but it helps being able to relate to people in a way. Mine suddenly just started after I relaxed from a really shitty period in my life over the summer and I understand that stress can kick off CHs happening. I haven’t had a full 24 hours proper relief for what will be exactly 3 months very soon, although as I say the amatriptalyn makes it a lot more bearable. I will be trying the vit d regime soon, I’m just waiting for delivery of the vitamins. I’m in the uk so have used iherb as suggested above but I believe the items still come from America so I assume I’ll be waiting a little while. My mum suffers with pain from her bones deteriorating from a medication she used in the past and she has the multi faceted appropriate and I completely agree so should we as it has such an impact on mental health. Before I got the relief with the amatriptalyn I remember crying on the phone to the doctor once begging for something to help as I couldn’t imagine living my life like this. I have a little girl so I would never do anything like that but in the moment of excruciating pain that’s all you can think of. I completely agree that people just don’t understand but how could they when it’s not really visible unfortunately. Good luck with your appointment, I hope it goes well!

Thank you both so much!! I’ve already read and reread your treatment protocol a good few times to try and get my head around it all. I live in the UK but I will go iherb and get it all ordered. Thank you so much for your explanation Batch. I’m getting on well with the amatriptalyn, only on quite a low dose of 20mg per day and the side affects are pretty minimal compared to the pain I was getting from the headaches before I started, so I was planning on sticking with the amatriptalyn for a while until I get the right serum level and get myself off of it. I work a lot at the moment due to the industry I’m in and I just can’t deal with the pain of the headaches whilst I’m so busy with work but I do want to get off them as soon as I can. I will get started ASAP and honestly just thank you both so much again!!!

I had my vit d checked recently and I want to start the vit d regime but my serum is already 86nmol/l. Isn’t that the desired level anyway? I’ve taken vit d supplements of 4000iu for quite a few months along with some general multi vitamins and I started taking them just before I started getting cluster headaches. Does this mean the vitamin d regime won’t work for me as my serum is already where it needs to be? I posted the last couple of days as a new poster explaining about my situation. I’m currently on amatriptalyn which is keeping the pain bearable but I’m still getting the headaches and it’s been going on daily for the last 3 months now. I feel rather deflated now that I’m probably going to have to try the verapamil and I really didn’t want to try it. I think I need to have a good cry!!!

I’m in the UK so we don’t often have a lot of decent sunlight. On top of that I have a 9-5 office job so now it’s winter I literally leave to go work in the dark and come home in the dark :/

Thank you all for your replies! The amatriptalyn has massively helped, I completely understand the term ‘suicide headaches’ used for CH as I don’t understand how anyone could want to live their lives with this pain so at the moment I’m SO grateful for the amatriptalyn but I just don’t want to be on medication long term. Verapamil is the next medication I’m due to b put on but after my own research I’m not convinced, it seems a lot of people don’t have that much help from being on high doses for long periods of times with the potential for it to cause heart problems. I personally want to try the vit D regime, I just know my doctors won’t do the bloods easily and I don’t really understand what I’m trying to get measured from the vit d blood test (the serum levels I don’t understand) Im more then happy to be on vitamins for a long time, it’s healthy anyway and hopefully won’t have the side affects of medications, it’s just a shame Doctors are so keen to hand out strong medication but not even consider diet and normal supplements. I’ve already printed out the vit d regime ready to take to the doctors tomorrow (although they’ve kindly cancelled so now need to wait another week)! Fortunately the amatriptalyn is containing the pain so I’m not needing to use abortives at the mo and the docs will only provide me with the sumatriptan tablets which I know aren’t much use. My thoughts are to stay on the amatriptalyn for a while, get myself on the vit d regime and try and taper off the amatriptalyn in a few weeks. The main question I have with the vit d regime is whether particular brands or types of the vitamins are needed or can I just walk into a pharmacy and pick up what’s needed if that makes sense? Unfortunately busting won’t be for me as I suffer from bad anxiety and panic attacks so my mind wouldn’t be in the right frame for it and I wouldn’t want to risk it. Honeslty, thank you all so much for your responses, it’s helped massively and I’m so glad there is so much online from people to help with an issue hardly anyone knows anything about! Sorry for my long reply, I could talk about this all day as there so much I don’t know and so little people to talk to on a normal day about it!

I’ve been diagnosed with cluster headaches. They started only in September this year following a VERY stressful period in my life. Previously suffered with a few migraines but never dealt with this sort of pain. They started off at 9pm every night until they increased to 3 times a day, one in the morning, one at lunch and the evening one. The pain always started behind my right eyebrow, quickly following around the right side of my face, feeling as though my bones were being crushed. Lasted an hour max. Got put on Amatriptalyn a month ago, only taking about 15mg a day and I know I’m still getting the headaches as I feel the pressure but the pain is about a 1 compared to a 10. Only three times at most did I ever get a watery eye, out of having 3 headaches a day for nearly 3 months now. Only once did one wake me up during the night. Drinking alcohol does trigger a headache usually but I can generally drink through the pain (that sounds awful :/). Anyway I read a lot on other people’s experiences and I feel like my suffering is nothing compared to others but it doesn’t seem like they’re going away any time soon. Does 3 months for a first bout sound usual? Does amatriptalyn usually give CH sufferers relief? I had an appointment with a headache clinic (I’m in the UK) last month and she was reading from a piece of paper, ordered some blood tests and and MRI, has requested my doctor put me on verapamil (having ecg this Friday) and sent me on my way very quickly. I just don’t understand this all and how I could be diagnosed so quickly. I’m dreading being on medication for the rest of my life. I don’t really know what I’m trying to achieve from this post, maybe just some help on what to do and some understanding of it all. I really want to start the vitamin D regime but the paper that is published about it is rather confusing and I’m not convinced my doctors will give me the blood tests the regime suggests