Snowflake

Good day guys, I hope all are managing. I have been taking 50mg of Prednisone daily for the past few weeks, in an attempt to assist with the loading dosages of my D3. It is helping, however I am having excruciating leg cramps mainly at night. Now it is also cramping on the muscle surrounding both my hip replacements. Get them some times when I'm driving also So, I do know that Prednisone actually depletes Potassium levels. Magnesium, for some reason, is just makes the cramps worse. I tried other anti cramp meds out there and its not working. Just wanted to find out if it is safe to take high dosages of Potassium for now and if it will aggravate the Clusters or will it be safe. Thanks

Thanks for sharing friend. Will have a read. I'm using a smart watch in conjunction with the health app on my phone. I must say that it measures almost everything like sleep patterns, sp02, breathing, heart rate. All to the "T" I had many of these things in the past, however the one I'm using now works excellent. It would be nice if everyone could invest in one as it will give us all a sense of tracking this beast. I know some are expensive and some of us can't afford it. I got one couldn't, however I saved to get this particular one and it's totally awesome. It is an Huawei GT2 watch and I'm using a 2014 model Huawei Mate 20 Pro with its OEM health app. Goodluck buddy.

Was at the beach fishing on 2 occasions in the last 2 weeks. Whilst there, and even though it was a "Full Strawberry Moon" , I never had any shadows, or even attacks during the 7 hours I was there each time. Strange enough, when I got home, I suffered 7 attacks in a space of 1 and a half hours which I kept aborting. Basically 15 mins apart on both occasions.

Yeah it is right? The one I'm using is an Huawei smart watch G2 paired with my old Huawei health app on the Mate 20 Pro Series. Seems to be doing the job. It's amazing that the very 1st REM onset triggers my attack which is usually 1 hour after falling asleep. Yet the following REM spikes doesn't. I'm just trying to get some more research done regarding the sleep aspect as well as why my subconscious stress at midnight is skyrocketing. Try it out brother. Let me know on your findings. Good luck

Hi all, I know you probably all know this already, however, aside from these attacks getting me during the onset of REM, I am just curious about the spike in stress levels especially at 12 am. Seems weird. These were the last 2 nights stats. Also whilst melatonin is mentioned to control you from going into REM, there's mixed signals about it from what I have read. It can also send you into the "devils playground". Just fascinating looking at this. My awake times are when I am having the attack. Will continue to monitor.

Thank you so much. It's funny how all this stuff surfaces after I reached 40. All along I had it buried along with a blood stained Tshirt from all the abuse. I still faced my abusers as they came for my brothers funeral. Makes me angry cos here I am battling to rake up money for oxygen to survive and they are actually millionaires. Living the life. Have a family with kids etc. And we can't have kids and concluded recently that we dont want any. My wife also has alot of complications with her health. Yes she still goes to work. I on the other hand had been medically boarded from work and I didn't want to be. They put it down to the fact that the company will not alot me to carry an oxygen tank to the work premises and since I walk with a cane, they used all this against me and "worked me out". That's South Africa for you! Never looked back cos I had to be the man of the house straight out of school. Did manage to save, study and achieve some of my goals however I was limited. On Xmas Eve 2001, I was on my way to work in a taxi which list it's back wheel doing 160kmph and it rolled over 3 times. Landed on its roof. I got out without a scratch. Helped whoever I could. That was also a weird thing that happened. I started seeing a psychiatrist and psychologist. I explained what Ch is all about and that I cannot take just any meds they prescribe cos I'm on the D3 Regimen. So will see how it goes as time goes by. One thing I noticed, when I'm busy, either fixing my car or fishing, I don't get attacks. The moment I lay on the couch watching TV, it gets me. So I have to be busy as best as my physical conditions allow me to be everyday. I have alot of demons. I hope I get to tackle them all and I will not let my entire situation ever stop me from doing things that normal people do. Made it this far, will never give up now.

I'm 45 years old. I was sexually abused between the ages of 10 and 14. Also physically bullied and beaten at school during my younger years. Ch started at 16. Had both hips replaced age 30 and 32. Due for intervention. We had 2 miscarriages upon the time I was going through hip surgery. Had ganglion block done 2019. Lost my brother in 2023 through cancer. Age 41. And I'm sitting here wondering if there is a spot to go fishing where my car is visible to get to the tank should I have to.

Is there anyone in here that has this condition? I can't help it but feel like sometimes, well more so recently that I am not in the drivers seat anymore. I am behaving strangely. I have moments like this where I can feel myself. It feels like I'm hiding and typing this. But also that I'm being watched. People and everyone in my circle are noticing strange differences in my personality alot recently. I'm concerned. Feels like something else is saying and doing things I don't mean and the worst part is that I cannot stop this from happening. I'm scared.

Good day, I hope you all are doing great. One of my many hobbies are surf fishing. However, and considering my ceramic hips, I haven't been fishing in years. I would love to go back to it, however I was at the beach up the south coast a few weeks ago. Spent about a full day there, and I noticed that a cycle began a day afterwards. So not sure if that does have something to do with being at the beach. Was a full moon as well towards that evening. I love fishing alot. I do know the lunar activity does obviously have an impact on the ocean and tides. Basically anywhere there is water.... Including I side our heads. Anyone think that this would spark a season or not or interfere with my D3 Regimen? I remember reading years ago about the moon, ocean and how it could start a cycle but nothing was really concrete. Just want to make sure and don't want to deprive myself of my hobby. I find it relaxing otherwise and atleast I can get out the house for change despite all the horrible challenges I have endured over the years. Thanks for all the advice in advance Snowflake

Hi, This is great news. I am so happy for you. I also went through the phase of hopelessness quite to the extreme. However, I found the answers within this wonderful group of souls and I so far have had 6 wonderful pain free years away from this curse. The only adjustment I made to my lifestyle aside from starting the D3 Regimen 6 years ago, was just stopping alcohol completely. I mean I was a social drinker but just stopped it. Now I can't even stand the thought of it. I still smoke since 1995. I haven't made any changes to my diet much, beside eating alot of apples and drinking alot of water. O2 has my back always just incase. So that is a must have readily available always. So goodluck going forward and keep to what works for you. Pain free wishes

Hi The injections have been discontinued in South Africa for some time now. I'm in Durban. However, what I found personally is that those injections, whilst it does abort the attack, it brings on a series of follow up attacks. I would suggest that you read through the vitamin D3 Regimen. Since I had been introduced to this magical treatment by fellow sufferers, it has really working so well for me. It does take some time to start working, however, once you are a month or so in it, it works wonders at giving you years of remission. Well that's what I found. You just have to be patient with beginning and once you in the game, you will be rewarded greatly. It is easy to lose hope whilst beginning. I did. But I gave it my all and I am pain free going on 6 years now. Whilst doing this regimen you will still get attacks at first, however, kill those attacks with O2 and maybe some OTC pain meds for the after pain on that side. Look for the D3 Regimen on this site. You won't go wrong. During these past 6 years, yes "he" did appear once, however I was guided to increase the D3 dosage for a few weeks and it phased off. Always keep O2 on hand. Always. Make sure to check your D3 levels regularly. When I started, mine was sitting at 18. Explained my brutal attacks and frequent cycles. I managed to bring it up over 80 with loading doses of D3 along with the rest of the vitamins within a matter of 6 weeks. I am so glad this is working so well for me. Maybe consider or read up on it. Well wishes. Snowflake

Welcome Eric. You are in the right place. Wishing you a well informed read/research and I hope you find a path of management that suits you well to keep the Beast in its cage. Goodluck

Hi Friends. I hope you all are managing and coping well. Just a quick one, I wanted to add Glutathione, with the D3 Regimen to help/aid with the repair of the muscle surrounding both my hip replacements since I'm due for my second set of hip replacement surgery cos it's been over 15 years now. I'm 45 at the moment, so if I need to have them done again, now is the right time. Dont want to reach my 70s and then it will be too risky. However, if I can use alternatives like Glutathione to repair the muscles mainly cos my current ceramic joints are still in tact and functioning properly. Well... My left one is squeaking if I squat ( was thinking of using WD40.... Lol kidding) , but he ortho took x-rays and Said that it still looks in good shape. I do experience pain from time to time and I walk with a cane to assist me. Is this ok to Take glutathione or will it interfere with the Ch and the regimen? Thanks and well wishes always. Snowflake

Thanks alot friend. Means alot to me. Seriously does. Wishing you a lovely day.

Hi there Chris. Thank you so much for taking the time to inspire me in ways to handle my situation. I truly appreciate it very much. I assume this is a safe place to spill my guts without being judged? Here we go: Just like you, my battle started when I was 16. But let's rewind a tad. Between the ages of 10 till I was 14, I had been sexually and violently abused by 3 people. Continously during this patch off my life, holidays, birthdays or any special occasions were taken away from me cos this when it was at its worse. These people are not my immediate family. Anyways, I hid this from everyone up till today as I'm sitting at 45 years old. When I was 19 I couldn't study cos we couldn't afford it. My dad was ill and my mom worked 2 jobs. So I went straight into the job life so to speak, making whatever money I could so we could put food on the table. Age 22 I managed to save up enough to study and achieve a diploma. Things started looking good for change. 2001. New years eve, I was on my way to work. Didn't have ea car as yet so I took a taxi. The taxi back wheel got loose at 140kmph and the entire vehicle rolled over about 3 or 4 times before landing on its roof. I managed to kick out the back glass and climbed out. Helped who ever I could. Cellphones where flung out of the taxi however I managed to find mine to call for help. But just felt so dizzy that I fell onto the road. I could hear something screaching only to find a truck tyre inches from my head. The drive jumped out and rush to me. My shirt was soaked with blood etc. So he just ripped it open to check for injuries. I still can believe that I never had a scratch. It was somebody else's blood. 2011. My 1st hip replacement. 2013. My second hip replacement while my wife was in the same hospital sorting out our second miscarriage. And I know what going through a miscarriage is being a male in a marriage. I have seen also what it does to the female. It's torturous. There aren't words actually and I tried to support from I was. We currently do not have kids and we don't want any. We just have a dog which we latch on to. And I can see that I (as much as I love my dog) am second to him. Which kinda sucks in a way. Moving on, I had been medically boarded from work due to the headaches and hip replacements even though I loved my job. They put it down to me in a very sly way using the fact that they refused to let me carry my O2 to work. I fought them since they 1st brought it up in 2014. But they got me out on 31.03.2021. So yeah my salary took a plunge and I'm left at home staring at the walls. I turned my hobby into a small business which is electronic repairs, however I stopped for a while now since my brother passed last year. Still dealing with my loss. I always wished it was me and still do. To be honest, I'm not sure if others feel this way, but I am not afraid of dying. Actually alot of people are not afraid either. I guess they fear of how they will die. I so welcome it. In fact I had 2 failed attempts at suicide. Yes I'm seeing a psychologist and psychiatrist which I also put on hold since last year. ... And now the CH season starts. I am sorry for the long read and if I said or mentioned anything that is not allowed on here. I am glad I did find this group because I did learn alot, especially the D3 Regamin and O2 treatment. Even though the damaged to my self has already been done. I may require bilateral knee replacements soon as well as the 15 year intervention regarding my hips. I am sure others have been through worse in their own way and path of life and this is not to undermind what you all are going through as well. Just know that I appreciate you all for the advice and direction in managing this condition atleast, even though I have no control over my past. I guess all that's left to say is Thank you all from the bottom of my heart and pain free wishes always.