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I don't like speaking ill of someone but I went to see Dr Shevel in 2013 and left the consultation in tears. After suffering with clusters for many years, I stumbled across Dr Shevel on my local radio talking about his surgery and hope sprang up inside of me. I contacted his clinic and waited a few weeks till he came to my city. When I went to see him, he asked me what was wrong and I told him about my history of clusters. He seemed tired and uninterested and his answer was that I needed surgery and that it would cost round about R70 000 in total (That is our local currency) which medical aid does not even cover. No tests, no checking me out, nothing. I told him that I wasn't on medical aid and my family couldn't afford that type of money and he said a plan could be made. I will be emailed a quote. As I was in a cycle at the time, I asked him for a script for the medication that my neurologist normally gives me and after I had told him, he said he needed to read up on Verapamil and will email the script to me. I saw him on the Friday and only received the scripts on the Monday. For someone that 'knows' the pain that we go through, there wasn't much urgency to get the script to me and I suffered with many beasts that weekend. (Still have the emails btw) Anyways, I received the quote which I declined and promptly received a call from the clinic offering a smaller surgery at a cheaper cost (About half the price). Apparently they really wanted to help me. I declined this and went to see my old neurologist. When I told him about the surgery, he said that I'm not the only person that has been fooled. Dr Shevel - Your procedure may or may not work but I will never forget the consultation that I had with you. Yes, you may help thousands of people but you didn't help me and your lack of empathy was soul crushing. I am so grateful to people on sites like this that look out for one another and can identify with the pain that we all suffer with. Verapamil has helped me keep my clusters in control and this past week I went for my Vitamin D3 blood test for the first time and my doctor found that my level is very low. Today I started the D3 regimen and that's all thanks to sites like this.

kris', how long do your more severe attacks last? How long do the "intermittent" ones last? You are right that while some of your symptoms sound like classic CH ("clockwork" regularity; effect on your eyes; excruciating pain) some do not (the very severe effect of bright light, even to the extent of causing an attack; the constant eye pain; even the intermittent attacks). What do you do when you have an attack? The likely reason for your ER experience with O2 (of the attack starting again not long afterward) is just that you weren't on the O2 long enough. People typically learn to stay on for 5-10 additional minutes after an attack has been aborted. So, what can you do to get O2 and store it safely? You say you had a prescription but no one would fill it. (My first thought about that is "Florida," since we hear that complaint frequently from people in Florida, but it's not so common elsewhere.) Can your father help with that? There's really no good reason, and probably no legal reason, for an oxygen supply company to refuse to give you O2. If you can't get medical O2, you do have the option (as you have noted) of using welding oxygen, as many people do. It's not clear to me whether you tried the steroids. They will often stop CH pain for a while, although the CH is very likely to come back as you taper down off the steroids. You don't seem to have an abortive. Typically, the go-to abortive aside from oxygen is injectable sumatriptan, which will stop an attack almost immediately. But I fear you will not like the side effects. Oxygen is crucial. The D3 regimen does include very large dosages. (It's here: https://clusterbusters.org/forums/topic/1308-d3-regimen/.) If it's something you would be willing to try (because it is very, very effective for CH), I would strongly urge you to send a Private/Personal Message to Batch, who developed the regimen, and discuss with him the symptoms you had before when you took high levels of D. He will be completely happy to receive a message from you, and he will respond promptly. To "PM" him, click on the envelope icon at the top right of the page, and put Batch in to To line. Somewhere, you had a doctor who was good enough to diagnose your condition and write you a prescription for oxygen. That puts you way ahead of the game -- the average time before getting diagnosed is something like five years, and I'd say that at least half of doctors don't prescribe O2, even with a CH diagnosis. You might or might not have CH, or you might have CH plus something else, but it does seem that you have a doctor who is better than what most people experience. That's very valuable.

Welcome Kris. Pile on the questions. What type of schedule do your hits come on? I mean, do you know when they will hit or is it more random? Have you O2 to abort with? Are you using a non-rebreather mask with your O2? What meds are a failure? Have you tried caffeine at the start of a hit? Many on this board have abandoned pharma for natural healing methods. Not that we don"t support those who find relief there, we do. Just so many of us have found that in the long run, they don't work. What makes you suspicious that you have something other than CH? It is possible of course. Just wondering why you suspect. A normal MRI is what is found in CH. No physical cause to be seen there. ATB

Kris, welcome you are in the right place for a wealth of information. 1st do not despair or give up. You made it this far. Tomorrow is a new day. This site can help you make an informed decision on some different approaches to different types of ways to teat your headaches. 1st. If you have not yet gotten a prescription for oxygen with a non-rebreather mask and regulated at 15 litres per min minimum. Another way is a Gentleman named Batch who has found that his D3 treatment (regimen) is a very effective way, And last alternative treatment. All ideas, are your choice. But have proven to be effective for many of us. Please read, read and read and then read some more. Don't hesitate to ask, a search bar is a valuable tool, as well as the main page, can guide you Pain-Free Wishes