Jump to content

Snowflake

Advanced Members
  • Posts

    48
  • Joined

  • Last visited

  • Days Won

    4

Snowflake last won the day on January 27 2021

Snowflake had the most liked content!

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

Snowflake's Achievements

Rookie

Rookie (2/14)

  • Reacting Well Rare
  • First Post Rare
  • Collaborator Rare
  • Conversation Starter Rare
  • One Year In Rare

Recent Badges

21

Reputation

  1. 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
  2. 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
  3. 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
  4. Hi Any idea how I can get in touch with Batch directly please? Thanks
  5. 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
  6. 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
  7. 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.
  8. 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
  9. 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.
  10. 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
  11. Hi Jonathan Thank you for your reply. I agree with you take on this situation. Familiar with the ever so popular slapbacks. Just found it strange that if it was a slap back, it occurred immediately as soon as the drip was turned off. Instantly is a more better word I guess. Given my experience with slapbacks when using MMS , It took almost 20 mins and more to occur. In addition to this, I was anxious before the treatment and since a had a one hour drive to the clinic in pissing rain, my car broke down just as I got onto the interchange. Luckily I did have a return driver with me, so we somehow managed to turn back. And use my old 1989 Ford V6 which was sitting in the garage. Lol. Surprisingly it got us there and back as I never used it so far before and given the weather, I was even more anxious. Temperamental wise, I found that I took ten or more steps backwards that evening after infusion. Even though I didn't get any attacks since. I know Ketamine works over time and is not proven to stop depression completely. I guess in essence it can aid in managing it at a cost and once you stop, you go back to square one. Especially for a ch patient. The money was a stretch to have this done but I'm am glad I had the opportunity of at least trying it. I would recommend anyone who can, to try atleast one session. You have no idea how beautiful your mind is. It's 7.47am here in SA now. Just woke up. Realised I had a full night with occasional breaks in sleep but not for CHS. Just intermittent sleep breaks. I guess it's an habit now. However, no side effects or anything out of the ordinary with me after this one session. I hear what you saying. I appreciate your reply. Go well and allthe best. ❄️
  12. Thanks for this. The Dr did mention something about "K-hole" now that you mention it.
  13. Good day Update: I had my first Ketamine Infusion done this morning at 8am. It was a 40min infusion. I really cannot describe it although I will try. It eased in via an IV and I slowly found myself inside my mind somehow. It was like nothing mattered. As if all you needed was imagination even if you couldn't see. I found myself creating whatever I wanted in my endless mind. It felt so good. Everything became so clear. Ultimate serenity. Calm. I never knew that my mind was so capable of anything I desired. Negative part: Even though I suspected my cycle of starting last week with a few attacks, I didn't get any attacks since Tuesday. However, as soon as they stopped the drip of ketamine, I instantly had an attack, however, I asked the Dr to be prepared with O2 incase of this happening. Which he was. Aborted the attack in 10mins. But both him and I found that strange that it triggered the attack the moment the drip was stopped. So from my experience previously with antidepressants or and kind of seratonin inhibitors, I found that those brought on a cycle. Although Ketamine is part anaesthesia, I did warn him about increasing seratonin and the adverse affects.. still I took the leap. So in essence, my personal experience with Ketamine was pleasurable until the CH showed up. Which means that I will not pursue further treatment of ketamine. Unfortunately, this just gives me another reason to hate CHs as I feel this treatment is beneficial to everyone one earth. (In accordance to their personality and perseption of course.) A small percentage may feel a sense of no control of their inner being and that could lead to paranoia. Yet I am like that and this didn't happen to me. So it could be that he adjusted the dosage to suite my weight. I received 40mg as I am 63kgs. This is my personal experience and as promised, I have updated and hope it may help someone who is wondering what to expect. Like I said though, everyone is different and may or may not have the experience I had. So this is another treatment I crossed off my list. I obviously didn't do this to stop CH. I did it to cope with anticipation of CH cycles and for depression, anxiety and to deal with my suicidal thoughts and past attempts. Thanks for reading and pain free wishes. Back to the drawing board and going the D3 which Spiny is helping me with and I appreciate it.
  14. Hi Spiny I hope you are well my friend. Please can you message me your email address. Thanks
×
×
  • Create New...