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Emmalou

Please can someone help!

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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 

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I can't say whether you have CH or not (as you note, you have some typical characteristics such as the regularity of the attacks and their location and nature, but not all of the physical symptoms), but here are a few answers to your questions. Amitryptiline (Elavil) is sometimes used to treat CH. In a 2015 study, the results were like yours -- pain reduction but not complete elimination.  It might have been prescribed to you also because of the stress in your life that you mention. It's not a first-line treatment for CH, but it's not completely unusual.  As you say, 15mg is a pretty low dose.  You can start the D3 regimen without the blood test. Measuring D levels in the blood is part of a standard bloodwork panel, so it might show up in the tests your doctor ordered. I'm going to bet that Batch will be here soon enough to show you the simplified version of the regimen, or someone else will (or I will when I have more time).  The most important abortive treatment for CH is oxygen.  Between the D3 regimen and O2 -- and busting, if you choose to try that -- it's very likely that you can avoid being on any substantial medications for the rest of your life, as you fear. You should also have something, most typically injectable sumatriptan, for breakout pain if you experience that.  Verapamil might help you as a preventive (D3 is better for most people, and healthier), but it takes a while (a week to 10 days, maybe) to take effect, and usually the initial dosages aren't high enough to be fully effective.  I'd urge you to look over this file and pursue the links to get a pretty full sense of the treatment landscape, including the basics of busting: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

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The MRI and seeing a headache clinic are a good start. You will want to read up on this site for a few days and come up with your own plan. I would recommend getting oxygen as your abortive for your attacks. You can find a tun of information on this topic by searching it in the upper corner. You will need a script from the doc to get medical but you can also get a welding setup. You will need a higher flow rate then normal so you may need to buy your own regulator. You can down any type energy drink with caffeine and taurine in it like a 5hr drink or redbull. You will want to reach out to Batch about the D3 but it is pretty straight forward in what vitamins you need to take and a blood test is recommended so you have an idea on your starting levels. You can read up on all the different busting options people have used in the past. 

Read and ask all the questions you have, you are in a good place for help  

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We are here to help! So, I am very glad that you found us. :) 

The MRI is to eliminate any other issues in your brain. It is a good thing. Some people present with what seems like Ch, but the MRI finds something else. Not often, but often enough to make it a good thing to get out of the way first thing.

Not having a weepy eye is not an indication that you do not have CH. You can also have sweating on that side only or a runny nose from that nostril. As well as the predictable times of your hits. Fun Times is spot on with the caffeine too. Since you know when your hits are coming, you can try to get the jump by hitting your caffeine about 20 minutes prior. It can help a lot for some. 

O2 O2 O2!!! 

The D3 Regimen can do amazing things for many. Just vitamins taken daily and all good for you too. 

ATB

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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! 

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