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Everything posted by Snowflake
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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
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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
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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
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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
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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
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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
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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
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Thanks alot @snafu much appreciated
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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
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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
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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
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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
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@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
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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.