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.

@Dallas Denny Hi Dallas, Thanks alot buddy. Will check it out.

Wouldn't it be nice if there was a simple book of what this condition does to a person for the sake of understanding to everyone else. I know you probably have the beach boys playing in your head right now and I'm not talking about the pain of our condition. 90% of people will never go into this site to understand cos let's face it, they don't care enough to do so. I'm referring to the state of mind in all it's "splender". Anyone else has no filter during CH seasons? I feel like Eminem on steroids and I'm pissing off everyone around me. Obviously I don't care either right now however, people are noticing change in my responses and actions. So I shut up most of the time or try to avoid contact with anyone. Even my spouse. She does know the "drill" however the questions. The simplist of questions can start a fire in my eyes and what comes out the mouth, are stuff that neither of us expects. As for being out on the roads..!! It's like I have a license to be an ass. My D3 update: Sitting at 259. Hits max 3 per day @ 5 to 7 mins aborted with O2. No nocturnal attacks.

Thank you. Yeah I have the tanks, not the concentrator. However I set it at 4lpm depending on where about I catch the beast arriving. I did research on the concentrator and found that is really not for our condition. Still waiting for my blood work results. I got through yesterday with just 1 minor attack. Lasted 5 mins. Lucky me. Does any one know if oxygen helps for panic attacks? I get them every Thursday morning cos my bro passed at midnight on a Wednesday and this keeps playing in my mind. Rushing to the hospital only to find a nurse telling me that 'are you here to see Mr Reddy? You do know that he passed away?' I just grabbed onto the table near me and started hyperventilating. Then she just pointed out the room they moved him to where I found my family crying. My dad in a wheelchair crying. My brother cold as I kissed his cheek. This scenario plays in my head every day but worse on Thursdays. I really don't know how to handle this and I'm afraid to go for my psychology appointments cos that not going to bring him back. It's going to bring back reality 10 fold. Juggling between this and the season is really fk up. I come here to this group cos you guys are the only ones that would truly understand give me sound advice which I appreciate so much. Thank you all fot the support.

I wondered about that cos I only get them when I'm relaxing or watching TV. Even gaming. I have bad Rem. My wife says that my eyes shift side to side while closed extremely fast. Usually at the famous 2am mark. Went and did bloods yest. Waiting for results. I have a feeling my D3 dropped. At the moment I am loading and boosting with prednisone. Seems to be helping. I found that the hits are nothing that 4lpm O2 can't handle within 5 to 10mins for the ones that I do get. I'm just stuck between a rock and a hard place. Brothers death and ch season starting. Where do I focus. Even though it's so difficult to.

@BoscoPiko @CHfather @Amholla3Amholla3 @xBossThank you so much. Going to check bloods tomorrow. Need to check my D3 levels. Just had an attack now. Aborted with oxygen. I can feel it starting again. I added prednisone to my regimen just to get through the nights and to deal with my brothers death. It stopped the night attacks. Just 15mg a night. I don't know if calcium is bringing on more attacks. Cos when I take 50 000iu d3, omega 3, and vitamin A, it got me through 2 years. Till now. I feel when I take the entire regimen I have more attacks. Plus the magnesium I get cramps. The boron and zinc also doesn't seem to be helping. I know, whatever works right? My D3 levels in 2019 was 18. So after loading frantically I managed to get to 80 and the cycle stopped. I guess I have to check my levels tomorrow. Completely forgot about that cos the last two years was really hectic seeing to my brother etc. Thanks everyone for the condolences.

Thank you I appreciate it very much

Thanks so much buddy

Hi @BoscoPiko @FunTimes @CHfather Hi there Thank you for the co condolences. I always assumed I would go first since I'm 44 and he was 41. After he passed away I didn't grieve as I had to be strong for my family. It's a few months now so you could be right since the cycle just started. No I have been taking 50 000iu every single day out of panick cos I was driving him to and from his chemo and radiation and no one else could take him. I still am taking the same dosage. I never really noticed any side effects accept for itchiness at my ankle. Attacks are sporadic. One just hit me without warning on Tuesday. Other than that, I am getting the shadow before hand so I have time to abort with oxygen. The other thing is that am on benzos and the likes because of my hip replacements. Yet that doesn't provoke an attack. It's just the element of surprise and we'll I guess the picture in my mind of the last time I saw my brother alive at the hospital. The look he gave me while holding my hand. And I told him don't worry I need to leave now and I will be back first thing in the morning. Then received a phone call to rush to the hospital at 12.20 at night from my sister to come to the hospital. I rushed over and he was already cold when I got there cos they said he passed away exactly at 12 midnight. I have that picture painted in my head cos he was fine when I left the hospital. Made jokes even though the cancer they removed was on the side of his neck. Still he could talk. I'm such a mess. I need to resume my psychology appointments but I'm scared to relive everything. My baby bro. Yet everyone thought he was the bigger brother. Always had my back. Even through all my ch cycles. I wish it was me and not him cos of this nightmare of a condition. I feel lost and alone. I came here to vent a little cos it's only you guys that will understand. I appreciate all of you very much.

Thank you @CHfather I appreciate your reply very much

Hey guys. Hope you all are managing. It's Autumn so the cycle started. Just wanted to know that when you are about falling asleep and get startled for some reason. Is this a trigger? Happened about 3 times now. Also If you are anxious or excited or even playing video games. I found that these contribute to an onset. I found that oxygen at 4litres per minute are aborting my attacks within 7 to 10 mins. If this is the case, does anyone out there think that those oxygen machines would or could help me? Instead of the tanks. Cos my breathing technique is that I wait for the bag to fill, then pull in the oxygen and hold it until the bag fills again. Then repeat. I find that's works great for me. I have been loading D3 50 000iu since January this year. I hope the length of which I am taking the 50k iu is safe Along with the cofactors. I just lost my only brother of 41 years old on the 23rd of November 2023 through 4th stage cancer. I am only getting bits and pieces of the entire funeral coming to me now each morning as I was 'numb' when he passed. Didn't shed a tear. And now I am extremely emotional and I just keep saying to myself that he is ok and still living in Johannesburg I order to get through each day I never had a problem with severe stress bringing on an attack. Anyways I just thought I'd put this on. It would be Interesting if anyone are experiencing the same. Thanks and take care

Hey @jon019 Good to hear from you too. I hope you are ok. I am out of cycle and your response answers my question especially knowing I'm not losing organs lol. But yeah the smell is on and off and is really for me, scary. I also tried some research on it and how ironic that it is only a few people that are affected and is quite rare just like Ch. I must stress that it is a "ghostly" smell. otherwise, I am good. The reloading worked wonders and I was snatched back to life as @xxx reloading schedule is extremely effective. Been pain free for few months now. Sticking to maintaining and just trying to tapper off antidepressants and pain killers which I abused by force over the last good couple of years. It is difficult but I am trying really hard. Just find myself relapsing just as I am nearing my goal because of incidents that occur like my mum got sick and ended up with shingles inside her ear which is rare but I can imagine the pain at her age, then my dad had who also has both his hips replaced as well as both his knees, ended up not long ago in hospital to have his ankle bone scraped down however the wound is taking forever to heal since it's on a movable part, no my brother came down yesterday from Johannesburg to see a specialist to remove a growth on the side of his face which is rather large and near the ear. He goes in on Monday to be admitted to hospital and Tuesday is the rather intricate operation as they need to bring in ENT specialists as well to see which angle to approach this thing from. Then all our vehicles are troubling at once. So all this stress is just making me grab more meds to cope since I don't drink alcohol so the go to thing for me are pills unfortunately. sorry for the long read and take care buddy

Good day Ch Family, I hope you all are coping.. Just wanted to know if anyone here has experienced or is experiencing phantosmia. It means that sometimes now and then you get a smell from within. A smell that only you can smell and it's in a way "scary". I always refer to it as " the smell of death" cos it really scares me each time it happens. it is intermittent. If I had to describe it, it would be like the smell of burnt plastic mixed with harsh chemicals that actually has a frightening effect. Even if you try to smell the strongest of perfumes or menthol rubs, you can't since this smell dominates it. And no one else can smell it. It feels like it is coming from within myself even exhaling through the nose senses it. This is the second time that this is happening to me and wanted to know if it has anything to do with our treatments or condition. I'm on the D3 regimen for a long while now also . Please let me know as this is wierd and terrifying all at once. I hope non of my organs are failing or if it also has anything to do with the fact that I had both my hips replaced sometime ago. scrambling for answers TIA

Hi friends Update as promised. The reloading dose worked. However I pushed it till 14 days instead of 12, then I'm currently maintaining. Pain free for 8 days now so I assume it's gone. Did bloods last week, D3 was at 65. However I aim to bring this figure higher. The O2 technique was working wonders. All in all I'm a happy chappy again thanks to you all and especially batch. Aka @xxx Haven't felt this good since June this year. This regimen is more likely to be a miracle, honestly. pain free wishes and I hope that you all give this a shot. Trust me, it's so worth it. Thanks again and take care. Snowflake

Hi folks I made this contraption to save on O2. It's seems to be working so far perfectly. Easy trigger. Just thought I would throw this out there to help others save when exhaling as we lose alot of o2 during this time. Flow rate I'm using is 8 litres per minute. I used the trigger from a plant sprayer. Works well. Good luck if you are looking to do the same. Use zip ties to get it to hold tightly at the main sections. Snowflake YouCut_20220922_175607174.mp4

Hey Mariana, It's my pleasure. With regards to the "phantom pain" I also get those. It lingers the entire day at a mild level. Causing stress and anxiety like it gonna start an attack. All the pain meds or antiinflammatory meds will not get rid of it. However, what I found is that when I took O2 for a short while that pain disappears. Feels like the clutches have released from the side of your head. Give that a try. If you search on my alias here you will find all my posts and like you, I started of not knowing much about treatment and this site has taught me patience and how to cope. You will also read that I was very hasty in trying to get relief as quick as I could. Oh and that I tried alot of stuff along the way out of desperation including dangerous procedures and the use of pharmaceutical drugs that left me with 2 hip replacements. I experimented alot and some times I ended up worse to begin with. Let's start with O2. My very first experience I thought it would work the moment I put the mask on. Then gave up on it. However after alot of encouragement and advise from this group I started on it again and it worked. Then I played around with the flow rate and adjusted my breathing techniques to now where I finally found a way to abort day time attacks in a matter of 4 to 5 mins or less using a low flow rate of as little as 8 litres per minute. As mentioned on previous posts, when you find that an attack is starting, you have to let it start at least 2 to 3 mins. Then head in for O2. Using the non-rebreather mask, I set the regulator to 8lpm. Let the bag fill up. Pull the O2 through your mouth with your tongue touching your upper palette. Hold the O2 in you lung till the bag fills up. You will still feel like the attack is going to get worse but it won't. For comfort during this time, cup the affected side of your head with you hand whilst doing this and slowly apply pressure and massage that area in circular motions. Exhale one the bag fills up and repeat. You will find that you will stop the attack much faster and also save on O2. Leaving the tank at 8ltpm, is kind of like a timer of how long you should hold the oxygen in your lung before exhaling. Of course this won't be the case for nocturnal attacks since they are difficult to catch. So for those, do the norm of 15 to 20lpm and remember as difficult and as painful as the attack is at that moment, you have to try to focus on trying to hold as much O2 in your lung as possible for as long as possible and keep telling yourself that it's going to release just now. Try to focus on a happy place. I know it's really hard to at that moment but I found that if I force myself to try to be calmer, the quicker I get relief. I picture being in a boat in the middle of the ocean with dolphins swimming past. Lol. I always have that image and it does help me during O2 treatment. I think we all can agree that as a rule of thumb: Always have O2 wherever you are during cycle. Regarding the D3 I think I'm like a 3rd year student of Mr @xxx. The reason I say this is cos I didn't do it right the 1st time. But after having grusome attacks every 2 hours for the whole of 2019, I had no other choice since non of the other remedies on here helped me. The first thing I think you should do is bloods. Check where your D3 is sitting at. The first time I checked mine, it was at a shocking 18. Explained why my attacks were so frequent and so so painful that I almost peeled the skin of my forehead on the affected side. After loading as per the schedule, it climbed to 40 after 3 weeks. Then 80 in another 3 weeks. Sure I was still getting attacks but it was too few to mention during the loading. There were a few days where I did have what you may call "slapback" attacks which were painful but always keep your eye on the ball so to speak. So once you get your d3 levels tested, check what it is at. My guess is that it is very low. Then work on trying to bring it up and never forget to take the regimen every day. Including the cofactors as they also play a very important role including proper absorption of the D3. I strongly recommend that you get in touch with @xxx, as he will guide you on specifics and dosages etc also as mentioned previously, its on the files section. Print it like I did. Highlight as you read through and trust me, you won't go wrong. So I don't thing that the D3 brought on that attack. I think you should persevere and make sure you do your bloods. Get your number and take it from there. Cos it is the starting point. unfortunately, we have to be patient and let the regimen start to work. There is no quick fix as much as we wish there was. But like I said, keep your eye on the ball. Once you know where you want to be, you will know when you want to start. I strongly believe that you can do this!! Take care and best wishes Snowflake

Hi there Mariana, Welcome and nice to meet you. Regarding the D3 regimen, I have also had the same experience initially. However last season and this season I decided to give it a chance and for me it really made such a huge difference in the frequency and intensity of the attacks. From someone that had been getting hits every 2 hours day and night to 2 mild attacks a night only which I aborted with oxygen, it's given me my life back. With the proper dosages and cofactors it really does wonders. Our humble friend @xxx aka batch has developed this regimen and he can guide you further. Also have a look at the files section, there's tons of information on it and it will also guide you as you go along. Wishing you well and I have alot of faith in this regimen. Once it starts working, you will be amazed at the results. Also make sure you have O2 on standby and work on your breathing techniques and you will be just fine. Pain free wishes always Snowflake

Hey @spiny Hope you are well. THank you! I stopped the calcium magnesium citrate and taking 400mg of the magnesium glycinate when the cramps were bad. Since then, it seems to be subsiding. I just finished placing an order on iherb for more D3 the Biotech one as well as all the cofactors. Should arrive by mid October. THank's again my friend well wishes Snowflake

Thanks alot @snafu much appreciated

Greetings Family, Update as promised. So I followed the" Reloading dose, however I was hit with "slapbacks" (Nothing that O2 couldn't handle.) They were manageable and aborted at an average of 10 to 15 mins. I also, instead of going 12 days with the reload, I did it for 14 days along with the co-factors and some help of prednisone at low doses. At day 7, I was hit every 2 hours, throughout the day. and about 2 attacks per night. After that it began slowing down and well, I know we all hate to count our chickens before they hatch, I'm pain free for 2 days and night so far. Still staying away from triggers to be safe also. I find also that if i'm busy, I don't get the attacks. the moment I put my feet up to rest, it was getting me. Weird. So for me, the D3 Reload hopefully shoved him back into his cage. I'm maintaining the regimen now and will continue to do so. The only thing waking me up at night is nasty leg cramps. Usually at the front arch of the ankle. Awkward place and i Just put some salt under my tongue, and it goes away after about 7 minutes. Not sure if the magnesium is causing that but I am on the Magnesium Gycinate so trying to adjust the dose on that one to see how to stop the cramps. Aside from that, I feel great once again thanks to Batch aka @xxx, @BoscoPiko, @spiny Regarding the intake of O2. I don't know if this is placebo effect or if it is really aborting faster than usual when I changed the technique. I only open the regulator to 8 liters per minute. Let the bag fill. Lift my tongue to touch my pallet and then breath in through my mouth. Maybe it enters quicker like sublingual medication? Not sure. I then hold the O2 for a few seconds until the bag fills again (since its on 8 liters per minute it give me time to hold the oxygen in my lung. I exhale and repeat. I found that by doing it this way, the attack stops faster and you also save on the tank itself. I also cup the side of my head with my hand and massage it whilst doing this. The catch here is that when you know he is around even before the pain hits, you got to let the pain start for about 3 to 4 minutes for this to be effective. As i found that if you take O2 too early, it take a little longer to abort and you in store for another attach in about 2 hours time. This is of course for day time attacks as it is difficult to catch nocturnal attacks the same way. This method is the most effective for me, so i thought I would share it and hope that it works for you guys. Regarding migraines My brother suffers bad with them so i also put him on this loading schedule. I am pleased to say that it has almost stopped them from coming as he is still towards the end of the loading dose. In fact i mentioned it to 2 people who got the same relief. Just got to be patient and disciplined regarding the regimen I guess. I am so grateful for all the help and guidance I get from Batch and everyone in this group. The research you all have put in on the files section is really so interesting. I used to want help instantly like most of us here and out of haste do stupid things. But after a lot of reading on here I got all my answers. Its kinda like much needed ammunition. So this is my update so far. Thanks to everyone that supported me and steered me in the right direction. Wish I could meet you all. You guys ROCK!!! Kind Regards and pain free wishes always Snowflake

Ok I will check with the pharmacy. Sorry batch it's been a hectic morning. Got hit every 2 hours yesterday to the minute. But attacks lasted not more that 15 minutes. The pain was manageable whilst using o2. By the end of yesterday, my chest was sore from all the breathing during the attacks which also left me extremely exhausted. I wanted a full night sleep so I took 3 prednisone and a Dopaqual 150mg which knocked me out. Nevertheless, I woke up at 7.40am with an attack arriving. Nothing too bad. Aborted in 7mins. I then had a busy day today whilst trying to communicate with you. I'm sorry. My phone did ring while I was in the bath. So the signal is right, and the number is working. I was unable to take you call at that time. Thereafter, I had to rush cos I had many appointments to get to, which had been scheduled long ago. Nothing medically. It was for the wife. Infact I'm still not done, cos I dropped her off and came home. I hit a speed bump on the road and even though I had seatbelts around the tank, in came flying forward landing upside down in my car. Didn't see the bump cos the paint was faded and it's an area I haven't been to before. So put in the hazards and went to secure the tank again. Also probably damaged underneath as I heard and felt the undercarriage grating the bump at 60kmph. Luckily it wasn't worse. I would hate to take someone else's life instead of my own. That being said. I never had any attacks since the am one. Cos I find that when I'm stressed or in the move, I don't get any hits. Only when I'm relaxed. Alot of Cher's will agree with that I guess. I will contact you as soon as I have a chance. I'm sorry I missed your calls. Also I need to check the time zones before so I know when youre in the am. Gonna phone the pharmacy now to double check as per your response which I'm so greatfull for. I promise to have a one in one with you to explain what's really going on as I cannot post on here. Until then, thanks my dear dear friend. You are just such a gem. Snowflake

Hi Batch Wow I can't imagine that even the neurologist called this D3 along with the pharmacy. I will get right on it with bio-tech. I think iherb should be ok. Will ask them to try to do a speed delivery. Just got to head out. Will pm you as soon as I get a chance. Busy day for me today. Thanks so much for letting me know. Keep well. Will chat on WhatsApp soon Snowflake

Hi Batch @xxx Thank you for responding. I am in SA. Not sure if you remember when you video called me and spoke to us, my wife and my brother once over WhatsApp. Are you still on WhatsApp by the way? I was also the one with the oxygen reading on the O2 meter where it refused to read and sometimes when it did, the readings fluctuated from 97 to 48 to even 0. Yet the same meter was reading my wife's oxygen as 99 all the time. Weird. I will put everything on this post so you don't have to reply to many posts as I know you are a busy bee helping everyone . I am yet to get the drops. I understand now about how this helps speed up things. I have included pictures of whatever I'm on. The Rx calciferol is included. Tried my best to capture the label as it is in a pharmacy dispenser. If I could order right now from iherb I would however, they do take over a month to deliver. This "reloading dose" you whipped up is helping. I'm now on day 6. However I will try to get the drops this evening from one of the pharmacies here delivered cos I have a huge tank to cart around every time I leave the house. With the hip replacements, it is difficult to lift to get into the car etc. No one at home to help either during the day. As you are aware I was also tapering of antidepressants when the cycle started. So I unfortunately have to bring on attacks by still taking them, a giant leap of a taper cos I am trying to limit attacks. So aside from me bringing on the attacks, (I have no choice cos the withdrawal is killing me as well) I have to have some of the antidepressant in my system if I don't want to then end up in trauma. So it's a pickle of a game that's going on. Also, because of my poor appetite, I hardly eat. Could any of the cofactors cause an ulcer? I basically have one meal a day and that supper. I'm trying to atleast have brown toast in the mornings though. Oh had to cut the magnesium down cos it is causing cramps on the muscle around both my hip replacements and calf. Thanks for everything batch. I really appreciate it very much. You take care as well. Snowflake

@xxx Hey Batch, Hope you are well. Quick one, the D3 drops. I can't see the picture properly. Just wanted to know how many iu per drop is in this bottle so I can hunt for it here. And while taking the loading dosage (tablet) how many drop should I take for better/faster absorption? Thanks bud