Snowflake

I found for me, imitrex were causing longer cycles and rebound Ch's really soon after each attack. Here is SA, they are no longer available as well. I think 02 is the best way. For me, Prednisone and loading D3 is helping. I went 1 week without an attack or shadow. I actually thought my season was over, but the other night I had 8 attacks at night. I don't know how to tell if the season is over anymore cos I used to count 7 days and if I'm completely pain free after the 7th day, I know it's over. Now I'm not sure anymore. I don't get day time attacks this season. Not 1. Just gets me at night. I think the timing of the Prednisone has to be spot on when I take it at 10 am everyday in-between food. That seems to be helping me this cycle. I have those rare nights with multiple attacks as mentioned above. Also noticed that it happens on a full moon always.

Thanks a lot . I guess we all are here for venting and support since nobody else will know what this life is like outside of this group.

Ok thank you. Will check my levels. So far I'm just trying foods high in potassium etc. seems to working .

Thanks so much. I go to the beach a lot. Whilst there I never get attacks or shadows the entire time. I'm always trying to keep myself busy and you are right, it does help so much. It's just the nights that it gets me. It's like I am not allowed to rest. Weird.

I only massage the area whilst taking 02. It's a hectic feeling. Subconsciously, body is expecting an attack. Sorry buddy, I hope you are ok today. Yup my wife said that my eye has almost shut. But I'm ok today. I am gone 4 days now without an attack. Counting till at least 7 days so I know this nightmare is over once again. I really hope so then I can resume normal life once again. Can't wait for this season to be over.

I had quite a brutal attack at midnight. This morning my eye was swollen and side of my head as well. Busting pain on the affected side since I woke up. I couldn't tell if is a hectic shadow or aftermath of the attack. I tried O2 for a while but didn't settle this pain and discomfort. Still have it at the moment. Pain med not helping. Anti-inflammatory as well. The anxiety is overwhelming since subconsciously my body is expecting a CH What do you guys suggest in this situation?

I bought a vitamin called Plenish k sr. Didn't use it as yet since I read that it has alcohol as one of the ingredients. So I'm not sure if that would be a trigger since alcohol in general is like a death sentence for me. It came highly recommended to boost potassium levels since I am convinced that my potassium is really low hence the cramps. I am scared to try it though, part of me is saying just wing it for a few days and see how it goes. Lol I seriously didn't know about the blood clots. Thanks for letting me know. I only knew that it cause avascular necrosis cos it's what caused me to have my hips replaced at age 30. I know that Prednisone whilst helps a lot for a lot of conditions such as wheezing, skin issues etc, has a whole host of side effects that doctors don't tell you. Yet is is the most cheapest drug on the market. After I stopped the Prednisone going on 3 days now, I didn't have the cramps for the last 2 nights. However I have pain in the areas where I was getting the cramps still. The beast is still around but had no choice since it's hard to juggle with cramps whilst having an attack and taking O2. I did try orange juice to pick up my potassium and it did work. So Prednisone also depletes ones potassium. Thank you for the info. Much appreciated

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.