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Everything posted by Snowflake
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Sorry I only thought of this now: The previous cycle started just after I made homemade juices using beetroot and carrots. This cycle started just as I made a smoothie consisting of celery, spinach, mix of redberries and banana. Had it about 3 times in a 2 week period before I had my first attack this cycle. So wondering if this all is a potential trigger for cycles? Thanks
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Hey xxx I think my answers to the other post should answer some of these. Thanks for the heads up on the water consumption. Unfortunately I can't double the magnesium cos I get hectic cramps on my hip replacements. I am taking all the cofactors as you mentioned but only when this cycle begun. To be honest I'm not getting hit like I used to in the last 26 odd years. My attacks are 90% of the time really short like around 7 to 10 mins with O2. I found a breathing technique that is working wonders as well. However there is that 1 or 2 attacks that really drills a hole in my head which I head for Redbull and continue O2. Those last no more than 30 or 40 mins before I feel his clutch release. I assume it is from the Alzam that I'm trying to tapering off . Which I dropped down to 0.25mg from 8mg drastically once this season started. It's difficult but I know that this is also contributing to the attacks that I do get cos one of my triggers is napping or being happy or even just resting, getting exciting news etc. Thanks again batch. Some of my answers are on the other post I guess. Take care Snowflake
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Hey Batch, How are you? Wonderful to hear from you. Ok so when my last cycle aborted, I started maintaining at 20 000iu every 5 days but I will be honest and say I was not religiously doing so. When this cycle started, I got a script for the 50 000iu calciferol D3 and started on them but once a week maintaining at 10 000iu everyday. There were a few weeks I forgot the loading dose. My attacks were manageable entering the season. Just this Saturday I got hit hard at midnight for 30mins and O2 couldn't touch it until I stopped and hit a Redbull and then restarted O2. About a week or so ago I also started prednisone out of desperation (40 mg a day for about 4 days along with the D3 loading) Reading on here since Sunday I found a post you wrote on what to do when it returns ie the 12 day loading schedule along with all the cofactors and since Sunday I have been on it. Attacks were few and less intense and aborted quick with O2. Then I read somewhere that the prednisone was hindering absorption of the loading doses and started tapering of since Monday. Now since you read my post on the PTSD after my last cycle and all the drugs I was taking eh benzos etc, I tried cold turkey with them a while back and landed in trauma. So I have been seeing a psychiatrist and psychologist who were trying to ween me off. I was still in the process of their tapering plan when this cycle started. I now skipped to the lowest possible dosage of these sedative meds to avoid attacks. Yes I feel the pinch, tremors etc but I gather as long as there is a little in my system, I won't suffer like last time. That's where I am right now and I'm on day 4 of the 50 000iu loading dose every morning trying to get to day 12. After I saw my figure this Tuesday sitting at 61, I kinda made sense of things regarding the prednisone and the lack of absorption rate and fluctuating figures. I couldn't get the Biotech in time so I had to get the one from the pharmacy. I'm not sure of the brand as we require a script here for D3 if it's over 50 000iu. Just says calciferol and it's 1 round little purple tablet. I have been medically boarded and my salary took a plunge so I couldn't repeat my order like the last time I took a pic and sent to you. But I'm working on it. Hope I answered all your questions. Thanks alot my friend and take care too. Snowflake
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Great idea. Thanks BoscoPiko
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Ok thanks snafu. Appreciate it
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Hi I have a question regarding the 12 day D3 50 000iu "reloading" dose. I checked my levels on Monday and it did drop. Infact it is all over the place. I just wanted to know whilst doing this, should I lesson the amount of water intake per day for better results instead of drinking alot of water and pissing it down the toilet. Or does 2litres of water help absorption along? Thanks
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@Chloe Chriselle @BoscoPiko Hi guys. I just fetched my big O2 tank so I feel safe. also wanted to mention that I realised that the prednisone I was taking (out of desperation) from last week was actually hindering the absorption of the loading doses of D3. I honestly didn't know that would happen. So I'm tapering of the prednisone while I'm loading the 12 day "reactivation" intervention. Also I remembered that the Omega 3 and Vitamin C from this regimen is extremely vital for the absorption for ultimate and spontaneous results. another thing, since end of May this year I checked bloods 3 times regarding my D3 levels, with the last time being yesterday. in may my D3 was at 40. I started loading intermittently. in July it went up to 71 I carried on loading but not religiously. yesterday's result was 61. I Have to bring this up to at least 110 to be pf like I did last time. So this to me proves that the prednisone kinda slowed my D3 intake. Yet I remember when I first checked my D3 levels ever, it was at 18 and my attacks back then we're nothing short of brutal. Once I was introduced to this regimen and followed it, I am still in awe of its power to stop the beast if done correctly. I'm glad I didn't just stop this regimen out of haste and thank you guys for cheering me on. I'm smiling again So to who ever reads this post in the future, like Chloe has also mentioned. Do not give up. Tweak it where it needs to be tweaked and I say that this regimen is the reason I am still breathing. Getting to go for functions and enjoying what life has to offer since we were all so deprived and happiness was replaced with fear and thinking twice before every move we make all along. Thank you once again for all the replies and support from such a beautiful group of souls Snowflake
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Thanks @Bejeeber I will do so going forward. Just wanted to add a huge thanks to you all for this wonderful site I am fortunate to be a part of. See the contradiction there lol. But in all honesty, whilst this world may turn, this world wide web is awesome even when everyone in here are stuck the "web" with pain. I spent the rest of yesterday searching and reading posts on here (which I should have done so in the first place) and I found so much of useful information. After finding one of batches posts where he mentioned that even whilst on a long successful D3 journey, the beast will return with a vengeance and that a 12 day loading dose with the cofactors should stop him eventually again. Luckily, before I read that, some hope was restored cos I took it upon myself to try the loading 1 week now but it wasn't consecutive days. So Im on the right track, just got to be more specific in accordance to the dosage. Like everyone here I guess we all panic at a certain stage when something doesn't work anymore and think the worst. But that post was my string of hope once again. I am not into MMs or seeds etc. Although I did try fee years back. However I prefer the D3 regimen cos it's easy and easier to do if count where I am from. Everyone makes mistakes. I say this cos I am guilty of such and unfortunately during 2019 (which was my worst year) the neurologist dished out very sedative medication, which u am still left trying to ween off. This is why my nocturnals where also so bad. And I , out of desperation to basically get into a comma at night was taking these meds quite a bit. Since then even though I have learnt that sedation and seratonin will make the beast trigger happy, I tried tappering of these sleeping pills and antidepressants. It's 2022 and I'm almost done with 1 more. That's how long it took me cos I tried to go cold turkey with it once and I almost died after the meds left my system out of shock I guess. Like some of us in here also, I just lost my job sadly because if the clusterheadaches and I'm left sitting in the lounge staring at a manifest that only I can see on the wall in front of me till my spouse come from work. I don't have the enthusiasm to even click the remote to switch the TV on some days. Alot of fatigue and feeling depressed and anxious like I mentioned in my previous post on anxiety and depression. However I put it down to the the last sedative med leaving my system. 1 week ago also I started prednisone even though I know what it did to my hips. This was because I couldn't get enough oxygen in time as the company I get it from are really delayed in reactivating my account. I still didn't get the required tank yet and hope they have sorted by today. So I have only a really small one that a friend at the pharmacy sent me. This tank looks like my big tank gave birth. So I'm trying to savour it in the meantime. I'm writing all this especially the part where maybe some of us want to relax and teach out for wrong stuff to feel good cos we are all so fed up. But I learnt a valuable lesson to NEVER reach for that again and stick diligently to the D3, cos it is the only way I can live a "normal" life. If there is such a thing. On day 12, I will update on my progress. Thanks and pain free to all. ❄️
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Hi Batch, Hope you are well. You were right. He did return about a month now. Saturday night was my worst attack. Really suffered. Oxygen did nothing. Redbull then oxygen again brought it down a tad. But it went off after 45 mins. At that moment I wished I was dead. Seriously. All my hope on the D3 was gone. But nevertheless I started loading almost 3 weeks now but I'm not sure what's a safe quantity to take. I'm writing out of desperation. So far I'm taking 50 000iu every 2nd day. Along with the cofactors. Also out of curiosity, what's your view on " Neurovance. Says on the box that it has no sedating properties, not does it increase seratonin. So I'm curious and desperate to try it. But as always I like to check with our family here first. Thanks and keep well. Snowflake
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Hi all. Hope you all are well. I have been on the D3 regimen since 2019 Was doing well up until a few weeks ago. Attacks are back. Had 10 from yesterday to today. I found this supplement in one of our stores. Supposed to increase endorphins without the sedating properties. Just want to know if this could be of help. Also, how many loading doses of D3 can I possibly take in a week to stop this nightmares please. Please ignore the part about the D3. I found the post I was looking for where batch says it will come back with a vengeance and it did. Also on how to go about controlling it. PFW Thanks
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Thanks for the heads up
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Hi Snugs Thanks. I'm not a sinus sufferer. I got the flu for the 1st time since 2014. But I admit it is a bit uncomfortable. Especially in the mornings. As long a you advise that the antihistamines are safe for us, I'm happy with that. Can get over the flu quicker. If you know, taking loading doses of D3 over a short period along with the maintenance dose of 20k iu, would you know if it's safe. Along with all the rest of the multivitamins? Cos when I started this regimen II n 2020, I checked my D3 and it was at 18. Which explained all the brutal attacks at that time and previous to that. Fortunately for me, Batch took me through the process and I brought the levels up to 90. Then the cycle stopped. Haven't had any attacks until now. But nothing I can't handle. I am very diligent with the regimen so I was baffled as to why my levels dropped to 41. But I'm working on trying to pick it up again. So my question is , is it safe to have my loading doses so close together? It is a mission to get oxygen in this country. Alot of paperwork and motivation etc. Thank you for your reply and guidance. I appreciate it alot.
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Thanks Jon, I remember reading on this platform a long time ago that antihistamines aggravate Ch's. Hence my enquiry. If I read wrong or if someone did post incorrectly, what I am gathering from your try is that antihistamines are actually good for Ch's? Yep there is nytol etc. I have been staying away from allergex and the likes for so long. Again, thank you so much for your reply. I appreciate it very much
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Hi guys. Hope you all well. I unfortunately I have a bad cold. I am on a strict D3 regiment and it's working like magic until last week. Few mild visits from the beast which O2 handled well. Checked D3 levels and was sitting at 41. So I loaded 150 000iu since last week. Attacks are around 2 mins and milder. However here in SA I can't get benadryl but the closest thing is AP-Loratodine. Reading online and the insert it is classified as H1. Just want to know if it's safe to take this to stop the sinuses as I'm battling with this flu. Phlegm is non stop. Tried all the Vicks inhaler etc but not helping. I am itching to take the loratodine, but thought I would check if it could bring the season on or not? Please help Kind regards
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Hi all, Update: Like you said xxx, I did still get a few attacks. All were in one night and thereafter nothing. I managed to get my D3 Bloods done and happy to report that from 18 I managed to push it up to 73. I feel this made a huge difference. I am maintaining this dosage at the moment. I noticed that the usual triggers do not affect me anymore which is great. So I get to eat what ever I been staying away from. Perfumes etc don't even give me a shadow. My tank of oxygen has been lasting me over 1 and half months now. Just keeping it for back up. So far so good. I feel great! Thank you and pf wishes. Snowflake
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Good day all Just an update. It's been well over 3 or 4 weeks into the D3 regimine. From 9 or 10 attacks to 0 per night. I feel great. Just having a full night sleep after so long is heavenly. I must say that this is a breath of new air into my life and I found purpose to live again. Too late for regrets now as this could have saved both my hips and needle through me face and other painful procedures I put myself through out of haste and frustration. However, I see only positive things coming my way and there are basically no words to express my gratitude to those that helped me. Love to all. Snowflake
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Hi Thanks alot. Yes he is. He did video call me once. Awesome guy. Thanks again I will private message. Didn't know he changed his alias. Thanks
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Hi Any idea how I can get in touch with Batch directly please? Thanks
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Thank you. I will monitor it. I'm sorry that O2 is not effective for you mostly. I didn't know about the breathing rate and HBP would have an effect on O2 levels. Interesting. I will keep monitoring and testing. Today I checked the O2 readings and was all over the place again without shadows or anything. Consistent 99% again when I checked on my wife for same duration. I need to find few more tests along with sticking to the same times I do the tests. subjects in order to try and find a pattern. Will be in touch. Thanks again
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Thank you Chfather. This means alot. I speculated before posting. Now I'm glad I did. I wanted to upload the video I took of this happening and the size of the file is to large. I just did the same test this morning as the attack started. I waited for it to increase in intensity. The O2 was at 99%. Then in 9 seconds, it dropped to 87% then 65% then came down to 59%. I managed to keep it together and check my blood pressure quickly. It was at 135/84 at that point. Then ripped the thing of my arm and headed over for O2 as I need to abort mission. Luckily It went off in 7mins. D3 is really knocking em dead for the night. Cramps are waking me up. Every hour. I didn't take magnesium yesterday just tobsee if there is a slight improvement bon cramps but maybe too soon to tell. Will leave it out for another 2 days or so and take it from there. My mission is this O2 thing which has me very interested. I checked during the day yesterday, whilst in was feeling perfect, and it was still fluctuating badly. Very eradic and weird. And I keep thinking it could be the device but my test subjects are always on 99% Thank you for replying
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Hi friends. Hope you all are keeping well. I managed to get an oxymeter, mainly for checking both my wife's and my levels during this time of the pandemic. However, It so happened, the day I got it, I also had a few shadows that showed up during the day as I am mainly nocturnal. Also I am ECH in season. So I checked her O2 levels about 3 or 4 times and it was always at 99%. At that point one of my shadows showed up and I tested mine. The results was shocking to me and rather interesting at the same time as I never even got up to 97% and went as low as in the 80s. This being said, I decided to test during a full blown attack and my levels was all over the place. It even went down to 68%. (I assumed I should be dead at that point) At the same time, I checked my blood pressure and it was lower than than when I checked it before going to bed when I was Ch free at that point. Also, even when I don't have a shadow or any sign of the Ch, my oxygen doesn't or rarely reaches 99% I then started O2 during last night's attack and even with the recommended flow rate with the correct mask etc, my O2 took very long to increase, and when the attack aborted, my levels still had not reached past 94% Switched the oxymeter over to my wife and hers picked up 99% yet again. The reason I am posting this is cos I wanted to get some advise on whether I should go for a CT angiogram to check my heart? Now, this makes me think that it could be that even out of cycle I am not getting the required oxygen like non sufferers. Seeing that I did have a few head trauma since little and being a sufferer for 25 odd years, and even though the question about why is there remission if this looks like my usual oxygen levels all the time. Please excuse me if I am speculating a bit much but these to me, are worth mentioning. I'm guessing that since I'm a spring sufferer, something worsens due to the moon phase which has an effect on the pressure regarding fluid in my head as well. So the rest off the seasons, are fine cos the climate aspect does not react to the magnitude that it does for me in spring? I dont know. These are just 2 reasons I can think off as this is so weird to see upfront especially when I can clearly see that there is no mistake with the readings. Any feedback or thoughts will be appreciated and pardon me if anything I did say sounds stupid. Other thing is that I am amidst the D3 still and it has really improved the frequency and intensity. I'm so glad I can breath and steal sleep more with each day. Just the leg cramps that get me jumping out of bed. I read posts here about it but I am still not sure whether to increase the magnesium or stop it for a few days. But the cramps are really hitting hard especially at the arch of the bottom of my legs and my hands. Fingers get locked while I'm writing or even holding a cup of tea. I am weening of prednisone still and I know thAt prednisone does cause cramps, but not to this level. First time experiencing such bad ones. Thanks and keep safe.
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Hi All, I, for the first time am currently following though with the D3 approach. It's been almost a week and a half of stagnently starting it as I did not have immediate access to all the vitamins mentioned. However I do now. I have my O2 ready on standby. Whilst I always hate to count my chickens before they hatch, there has been improment. ie. From 9 nocturnal attacks, I'm gone down to 2 per night. I have been stealing much more sleep in the last 3 nights, which feels great. I know It does take roughly 3 weeks to kick in correctly as I am still loading as per the D3 schedule provided. However, I must admit that this is the most effective approach and promising results I ever felt in 25 years. The attacks that I do get are less painful, less frequent and shorter already. This is just a note to say a huge thank you to Spiny and Batch who has so selflessly helped me get in the wagon without delay. You guys are just too awesome and help without hesitation. This will come as a shock to all but my D3 levels were at 18.5 at the start of this cycle. It also explained why my nocturnal attacks were so fierce and frequent. I will be doing bloods every so often to make sure it does not ever go to this figure again and will keep it in check. It is just 'suspensful' to visit clinics or labs right now and brings fear of contacting covid. However, I will plan appropriately and take all the relevant measures. I will admit, the hand sanitizers do pose a bit of discomfort, seeing that it does contain alot if alcohol. However, I try to either hold my breath ever with the masks on and keep my hands away from my face. After. While it does evaporate. Even though our skin does absorb some eventually. I carry cooler with Redbull and a portable tank each time I am required to leave my house. So that's cool. So thanks guys. You have no idea how much you have helped me and I am truly grateful. You saved alot of lives including mine and I can feel some sort of ' control' over the beast. This gives me hope which is the only thing I can cling to. Also, if you are out there and like me, hesitant about the D3 approach, I beg you to reconsider and keep to it. Honestly, I have no doubts about it anymore and it is the safest thing I have ever tried in my CH life even though I know I still have a long way to go. Understanding that I will be on this treatment for the rest of my life, cycle or not, The only question that circles my mind right now is once I am 'D3 complient' and out of season, do I still avoid all the triggers? Much appreciated and pain free wishes to all and stay safe. Snowflake
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Hi Chfather, Thank you for the compliment. I hear what you saying. Yet the mask is the non rebreather mask. Yet I found I was still losing O2 while holding in my lungs. Out of habit I tend to hold it in as long as I can. Hence the bag over fills and spills out up to my eyes and through the sides of me face thereby losing some O2. I find it is working for me regarding my method of taking O2. I used thread tape on all the connections to avoid O2 loss and It worked. It important part was having a good gauge pipe from tank to the gun as the pressure is similar to an air compressor. So I guess after the attack I can blow out "beast residue" my face. (Kidding) I know I could lower the Fossett on the tank but I was being experimental and trying to have fun with some ideas. I just wanted to share as I was proud of what I did. Lol. I'm sorry if I am replying again. I typed and for some reason everything I typed seemed as if it didn't go through. I received my 4.6kg tank yesterday. It came to R1380.00 here in SA . Plus I have to pay R217.00 per month for rental. This was private. My medical insurance authorised O2 for me but failed to acknowledge the size of the tank I required and gave me that small one in the picture which is a 1.8kg. nevertheless, I won't complain since now I have 2 tanks. The small one will by nifty to use when mobile. Plus it's paid my medical insurance. Something is better than nothing right? Thank you for taking time to reply to my post. I really appreciate it very much and pain free wish always.
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Thank you jon019. I really appreciate it.
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Hi All, I made this thing to control the flow of oxygen instantly so I don't let it waste away when I'm breathing out. So everytime I breath in, I press the trigger. It releases oxygen. Then while I hold the oxygen in I can let go of the trigger and tank will stop. So it doesn't keep flowing for nothing. It will save me by 50% if the tank and therefore each tank will last longer. I could have found a smaller press valve or switch, but I found this to be working so effectively and just a slight squeeze of a trigger. Note that the pipe from the tank to the gun must be thicker for obvious reasons. Also I know this tank is miniature. Cycle just begun, so my big tank is arriving today. Just an idea I thought off that might help others. Probably others came up with this too. But anyways. Costed me R30 here in SA which should be about 2 dollars. I can't upload a video to show it working cos of the size of the file. But I think you get the idea. Pain free wishes to all. Snowflake