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I went through a stage of using Chinese acupressure points at the base of my skull and by squeezing the skin between my thumb and index finger. This led to one night try self-administered Reiki and I thought maybe if I wished hard enough it might just work. I can tell you it didn't but I was annoyed with myself for thinking it would for sometime afterwards.

Yeah absolutely. So I got prescribed the device by my neurology. I didn't have to pay anything and have had three top ups so far. You get a 93day card with the device and it will run for the 93 days and then stop working. I just email my neurologists secretary and she sends a prescription form to GammaCore and they send out another 93 day card and lubricant. I haven't had to pay anything for this which is something I'm grateful for. So you can use it in two ways - as an abortive (3 x two-minute stims, 3 minute wait and then 3 x two minute stims) and as a preventative (3 x two-minute stims in the morning and 3 x two-minute stims in the evening). I was mainly using it as a preventative and I think it might have reduced the intensity or attacks but didn't get rid of them. There was some residual nerve pain / sensations afterwards for about 5-10 mins I guess I could liken to shadows in intensity but running up the nerve in the neck and head. It's difficult to say how benificial it was as it's something I'm still experimenting with. In terms of using it as an abortive I stopped using it for nocturnal attacks as they were always so well developed and I found it didn't really help with the pain and if anything agitated them more so. I use as an abortive for some attacks I get during times I'm awake and again although it doesn't get rid of them I almost got the sensation that it was spreading the pain out over a larger area and so it almost didn't hurt as much as the pain was spread over a larger area and so hurt less even thought the pain didn't really dope. I hope that made sense but I always find my CH feels like a nuclear bomb has gone off inside a single cell. In summary I'd say I'm sceptical about it's effectiveness but it's definitely something I'm gonna continue with as I really haven't used it enough so say either way. I hope that helps, let me know if you want to know anything else.

As far as I know the cost in UK for gammacore is first 3 mouths free then it works out around £2250 a year , but being in the UK it's all covered by the NHS ,but not all areas in UK will cover the cost .so it depends where you live in the UK if you get offered this treatment

That's a nice post, Adam'. Thank you. Can you tell us how the GammaCore has been for you? It has been worth the cost, I take it (or maybe the "UK" means you are in a system where the cost is not exorbitant).

Knowing I'm going to be collecting thunder eggs here pretty quick I thought it may be nice to have something to laugh about (even if it means laughing at myself). Wondering, what's the most ridiculous or silly thing you ever started or stopped doing in an effort to avoid cluster? For myself the stupidest thing I recall doing was avoiding leaning over! Silly as it sounds, when I was a bit newer to this show I got a ch attack directly after leaning over so I then spent a few months trying to not lean over/down! I'm not sure if you have ever tried this but it was ridiculous I struggled to put shoes on undies 2! I allowed myself to be so discombobulated for a time that I truly believed it may save me .... How silly is that! Would love to hear what you did or didn't do!

Burning cooking oil used to trigger me instantly but the strange thing is that it stopped being a trigger a couple years ago.

Well at least these are more logical things to try than not leaning over lol!

I do find I get significant changes in my appetite when in cycle. I find that my hunger levels become low or disappear completely and also the thought of eating makes me feel sick. On occasions when I am hungry or want to eat I inevitably find that once I start to eat I feel sick again and this results in a partially eaten meal, even though it was likely something I enjoy and was looking forward to having. I would not class this an eating disorder though. I think it is just another symptom of the condition. I appreciate some clusterheads will have issues relating to food though and my thought are with them having to manage in addition to CH. As a general rule apart from food related nausea I don't suffer with nausea and vomiting when in cycle or during an attack, although I have had a couple of cycles when nausea and vomiting has been a constant issue which I've required antiemetics. I remember once dealing with an attack in the night and decided to use my GammaCore at the same time which caused me to projectile vomit into a high-flow mask. Lets just say there were several opposing forces of physics involved and with electrode lubricant at play also it was rather a messy night and one I'm not keen to repeat. I tend to be mindful of nutrition now when in cycle as I want to make sure my body is getting some nourishment and have found I tend to have small meals / snacks rather than a full meal which I struggle with. A protein shake I find helps and I do love avocados. My diet won't be as good as when in cycle but I guess it's better to have something you will eat and in a more manageable portion that wasting food or going without. I do find I loose some weight but just surviving a cycle reduces my worries about food as sometimes just staying alive is a real struggle and the overriding priority for me. I try to be kind to myself and beating myself up for not eating well isn't helpful and an area that I can try and give myself a break on.

One of my attacks came after blowing a candle out and breathing in the smoke of the wicks. After that, no blowing out candles only capping them to put it out. This lead to cooking things at lower heat to not burn it and avoiding smoke entirely. Especially hard because smoking Mari makes the stomach and mood feel better but don’t want to do it so that I don’t trigger a CH.

just wanted to say. I had two days now with light shadows and have been pain-free since that's good 2 weeks. Without the intake of proton pump inhibitors, I would certainly have more attacks. The steam helps me to minimize my tobacco consumption very well. I wish you pain-free days

Loading at 100,000 IU/day for two days should elevate your 25(OH)D by 20 ng/mL which should bring your total serum 25(OH)D3 serum concentration up to 170 ng/mL. It takes roughly 24 to 36 hours for each dose of vitamin D3 to be hydoxylated by the liver to 25(OH)D3 so if there's no response 24 to 36 hours after the second loading dose of 100,000 IU vitamin D3, I would be tempted to add one more day at this loading dose. Of course a trip to your PCP/GP for another round of labs for your serum 25(OH)D3, calcium and PTH will be in order one way or the other in a week or two. The rest of your plan looks sound. Please keep us posted. V/R, Batch