A few questions please.

[Snowflake]

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 

[BoscoPiko]

So sorry to hear of your loss. It seems to be common that folks do get hit directly after falling asleep when in a cycle. Not sure about getting hit due to being startled awake. 4LPM is very very low so if it's helping you to abort there is a possibility I suppose that an oxygenator may work for you. As for the D3 I am assuming you are taking one 50,000 IU per week? If that's the case you should be just fine. The stress of losing a loved one could be elevating your cortisol levels which might be playing into your recent attacks. I hope this passes for you sooner than later! 

[FunTimes]

I was dealing with my brother-in law and cancer. I was doing a lot of driving to and from appointments and hospitals for him. During this time I did not have an increase in clusters, They were about the same as always. After his passing the shit hit the fan and I got crushed every day. I can only say that stress and clusters can and will react to each of us differently. I typically have less when stressed out and more during relaxed times. That also go along with getting hits as I fall asleep, lay down and fall asleep and my body relaxes about an hour into that sleep and I wake up with a hit. 

As far at the oxygen concentrator goes I would see if you could maybe rent one for a week and test it out. If it works that is awesome and go get one. Again everything works a little different for everyone so if it works for you stick with it! 

[CHfather]

5 hours ago, Snowflake said:

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. 

The thing about the oxygen machine (concentrator) is that they are not pure oxygen the way O2 from a tank is.  Some room air gets mixed in, so you might not get the same results.  As FunTimes says, probably no harm in trying.

I would suggest that if you are aborting in 7-10 minutes with the method you're using, you might be able to get a quicker abort with the more "standard" method using a higher flow rate of a deep inhale, holding it in your lungs for a couple of seconds, and then forcefully exhaling (rather than just holding the air as you wait for the bag to fill).  But you've been at this for a while and maybe your method really is best for you.

[Snowflake]

Thank you @CHfather I appreciate your reply very much 

[Snowflake]

12 hours ago, BoscoPiko said:

So sorry to hear of your loss. It seems to be common that folks do get hit directly after falling asleep when in a cycle. Not sure about getting hit due to being startled awake. 4LPM is very very low so if it's helping you to abort there is a possibility I suppose that an oxygenator may work for you. As for the D3 I am assuming you are taking one 50,000 IU per week? If that's the case you should be just fine. The stress of losing a loved one could be elevating your cortisol levels which might be playing into your recent attacks. I hope this passes for you sooner than later! 

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. 

[Amholla3]

So sorry you are going through all of this snowflake! Sending love your way!

[BoscoPiko]

On 3/7/2024 at 9:42 PM, Snowflake said:

No I have been taking 50 000iu every single day

Well.. I've never heard of death by D3 overdose but it would be a good idea to go get some labs done just to make sure your calcium levels are ok. I'm sorry your heart hurts and I know reliving the dreadful situation/reality is not exactly enticing or very palatable but it might really help to unload some of your inner turmoil/pain. Sending prayers your way.

[xBoss]

Stress has put me into cycle a couple few times for sure. Sorry for your loss.

[Snowflake]

On 3/10/2024 at 3:53 AM, BoscoPiko said:

Well.. I've never heard of death by D3 overdose but it would be a good idea to go get some labs done just to make sure your calcium levels are ok. I'm sorry your heart hurts and I know reliving the dreadful situation/reality is not exactly enticing or very palatable but it might really help to unload some of your inner turmoil/pain. Sending prayers your way.

Thanks so much buddy

[Snowflake]

On 3/10/2024 at 3:36 AM, Amholla3 said:

So sorry you are going through all of this snowflake! Sending love your way!

Thank you I appreciate it very much 

[Snowflake]

9 hours ago, xBoss said:

Stress has put me into cycle a couple few times for sure. Sorry for your loss.

@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. 

[Bejeeber]

6 hours ago, Snowflake said:

Going to check bloods tomorrow

Good thinking, since in your case of course it sounds of critical importance that the calcium level be checked.

 

 

6 hours ago, Snowflake said:

Plus the magnesium I get cramps.

Sometimes a different form of magnesium can be more compatible for a given individual (I know this because I respond better to magnesium citrate than glycinate, but my wife gets leg cramps from citrate).

[devonrex]

I have found after exertion or stress, once I begin to relax I get hit. Sleep that hypnic jerk can be just as you are hitting rem and the body thinks it is dying and it does a quick nerve pulse/jerk. Rem is a trigger for many. I have found stress can either trigger or ramp them up a lot. 

[Snowflake]

2 hours ago, devonrex said:

I have found after exertion or stress, once I begin to relax I get hit. Sleep that hypnic jerk can be just as you are hitting rem and the body thinks it is dying and it does a quick nerve pulse/jerk. Rem is a trigger for many. I have found stress can either trigger or ramp them up a lot. 

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. 

[devonrex]

The eye shifting is pretty normal for rem sleep which means Rapid Eye Movement iirc. But stress and the season can really be doing it. I would second the above with getting high flow o2 with a tank and not the concentrator, at some point that concentrator is not going to cut it, hopefully it doesn't get there, but better to be ready if it does.

[Snowflake]

13 hours ago, devonrex said:

The eye shifting is pretty normal for rem sleep which means Rapid Eye Movement iirc. But stress and the season can really be doing it. I would second the above with getting high flow o2 with a tank and not the concentrator, at some point that concentrator is not going to cut it, hopefully it doesn't get there, but better to be ready if it does.

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. 

[jon019]

On 3/13/2024 at 11:44 PM, Snowflake said:

Does any one know if oxygen helps for panic attacks?

.....i think its the breathing part with or w/o oxygen. while not a panic attack in the true sense my initial reaction to a hit, yrs ago, was panic and thrashing and swearing and working myself into a frenzy. it took a while but i finally figured this over the top reaction was getting me nowhere. all this to say i adopted a verrrry slow deep breathing technique when aborting with O2 that had a remarkably calming, almost meditative effect and actually used an lpm similar to yours. aborts became quicker and calmer! your breathe and hold is another favorite....try this slow/deep....maybe even w/o the O2.

[xBoss]

On 3/13/2024 at 4:13 AM, devonrex said:

I have found after exertion or stress, once I begin to relax I get hit. Sleep that hypnic jerk can be just as you are hitting rem and the body thinks it is dying and it does a quick nerve pulse/jerk. Rem is a trigger for many. I have found stress can either trigger or ramp them up a lot. 

I get those. They come and go. Doing decent right now but wow, they suck!

Edited March 16 by xBoss