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AdamCHUK

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AdamCHUK last won the day on March 14

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  1. I appreciate where your coming from @Juss. I'm just grateful that regardless of what life throws at me and however much money I have I know my health will be taken care of. An income based contribution I guess is kinda how we fund healthcare here. I'll check out the Zynex though. Have you used it for long?
  2. This guy puts up mixes of really chilled out listening. My go to when I want to relax
  3. Wow the cost incurred by you guys stateside make my eyes water! I can't imagine having to deal with the financial burden of treatments along with the condition as well. You have my admiration for sure.
  4. I'd not heard of cfaley but just did a quick search on google. I think both devices work on similar principles but the cfaley seems to target the trigeminal nerve from the nerve endings. The gamma core plays with the vagal nerves. I seem to remember the packing note having a price of £3500 or there abouts which would make it a more expensive option. Not sure how much they go stateside or if you need the popup cards. It looks like you end up paying out for the electrode packs on the cfaley as opposed to popup cards and lubricant. I agree with you about being a distraction and one thing I do remember was getting a sense of calm about me after having used it as a preventative. The reason I'm keen to continue with it is it non-invasive and isn't some kind of drug or substance I'm putting in my body along with everything else. Be interested to see how you get on maybe after some regular use.
  5. I smoke and although I don't see it as a cause I do find that if I smoke too soon after an attack it will bring it back on again. Currently looking to stop but that's easier said than done. I don't really drink and so it's my only indulgence at the moment. Can you explain about the PPI? Do you mean that taking it helps reduce your attacks? I do find I feel my intestines seem to get distressed (more than normal!) when having an attack. I put this down to the blood moving away from my gastrointestinal tract as a response to the CH attack.
  6. 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.
  7. 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.
  8. 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.
  9. I haven't done the D3 protocol but looking to start shortly. My doctor was onboard with it immediately which I gather is not always the case. Had my baseline bloods done yesterday and awaiting the results. I did watch a video / interview by @CraigStewartand the guy Batch that came up with the regimen. I think I remember him saying that you need to be taking it with a main meal so that the fats can break down the chalky magnesium. I think it may have mentioned that you could break the dose down so rather than taking the whole dose of Magnesium with one meal you could try taking half with breakfast (as long as there is some fats) and the rest with dinner. This may help improve things around back. Going to be interesting to see how I get on and I wish you luck on your journey. You can watch the interview here:
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