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Been here before... forgot my stuff so started again.  I'm 6 years and counting... chronic.  The most break I get is 2 weeks If that.  Today is bad.  I'm failing my family,  can't walk when I get them,  no insurance no oxygen,  fuck... I'm so done hurting.  People around me don't understand my poor husband he tries so much for me and my anxiety had me crying all day today because kay night was 3 hours which isn't too bad really.  But I just wasn't it to stop. 

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So sorry to hear it's a bad day. Do you have options that work for you Hhh? There is lots of good support here and ways to find help and hopefully relief. I am episodic and cannot imagine being chronic. Oxygen works for me and I am able to get it paying cash very reasonably. I've also just started the D3 regimen, which is inexpensive and has really reduced the attacks.

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Thank you! I do d3, energy drinks,  you name it !! I've got it.  Even when I had oxygen it did work nightly. But everyday they come back.  D3 helps the length of them which is really appreciated. I'm just tired.  So i came here to remember I'm not by myself and I'll live until tomorrow... but some days kick my ass... sorry for the profanity but I'm angry today...I want it to just stop. 

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Hhh, Being sick of it attacking you is normal and we all experience it. 

Are you doing the full D3 Regimen or just D3? It matters. 

O2 kills one hit. It does not prevent the next hit unfortunately. But, you need to stay on it for 5 or 10 minutes after the pain has gone. Otherwise, you will get hit again right quick. Try that and perhaps you will get an hour or more pain free. And if nocturnal, try sleeping in a recliner. Keep your head above you heart and you will do better. Wake sooner with a hit and perhaps have fewer hits. 

I truly understand your anger!! Carry on. Use your tools and get pain free!

ATB!!

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Thank you! Yes I do the regimine...cluster father shared a few years ago... so grateful for everyone's input.  I feel for my other half... he is amazing,  truly all these years right there and knows to leave me alone,  today after all these years,  was the fist time after an attack that i felt like i should jump off a cliff.  I won't,  i know better but what the f@#$ , I'd love just a few more pf days.  Alas no insurance and no oxygen and I know it works at least shortens it... in case others are reading newbies... it works. 

I have a question though... do others of you find that prior to an attack that you get angry,  agitated, I've been realizing... after the attack that it is a precursor before I get slammed. 

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2 hours ago, Double A said:

I understand. No apologies needed! It's important to vent in a safe and supportive place. The beast lives for those ass-kicking days - keep on fighting and I hope you kick it right back! 

Thank you

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I'm nocturnal, so I don't notice that, But the first one of the evening will begin about 8pm. My 'tell' is I begin rubbing my forehead above the brow on my CH side. Or I will be rubbing my neck, as that is a 'tell' for me too, if it starts to ache. Both indicate a hit is on the way. Knowing your own 'tell' is pretty handy. 

Have you looked into getting a welding set-up? Not script needed for that O2. If you are interested, we can help you set one up and get you some relief that way. It will cost about 150 to 200.00 to get that going. O2 should be your best friend! 

Have you had your labs done recently to see what you D3 levels are? How much are you taking daily?  An increase in that vitamin can really help too. I tend to increase my D intake before a cycle is due to be sure it stays away. Like many in the world, I would suspect low D levels because most of us were not able to get as much sun over the summer this year. How much D are you taking daily?

Your partner sounds like a keeper! We love our supporters. :) 

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On 11/3/2020 at 3:57 AM, spiny said:

I'm nocturnal, so I don't notice that, But the first one of the evening will begin about 8pm. My 'tell' is I begin rubbing my forehead above the brow on my CH side. Or I will be rubbing my neck, as that is a 'tell' for me too, if it starts to ache. Both indicate a hit is on the way. Knowing your own 'tell' is pretty handy. 

Have you looked into getting a welding set-up? Not script needed for that O2. If you are interested, we can help you set one up and get you some relief that way. It will cost about 150 to 200.00 to get that going. O2 should be your best friend! 

Have you had your labs done recently to see what you D3 levels are? How much are you taking daily?  An increase in that vitamin can really help too. I tend to increase my D intake before a cycle is due to be sure it stays away. Like many in the world, I would suspect low D levels because most of us were not able to get as much sun over the summer this year. How much D are you taking daily?

Your partner sounds like a keeper! We love our supporters. :) 

I have looked into the set up... it's the affordability of everything unfortunately.  But I still plod along.  I am nocturnal as well...9 ...930 every night. This week earlier which is a little different but so is the weather... that effects my demon.   Truly the most break I get is 2 weeks, f#@k..  Im 6 going on 7 years same schedule.  I accept it.  I know it.  I live it I hate it.  

He is a keeper.  Although I apologize terribly the whole time and I know it kills him.  

I get my levels checked now and then and just stay on the regimen because it helps. 

I just hate it... I'm being wimpy this cycle and I don't know why.  I have tells lol I start winking... all my friends actually know before me because I wink at them it's a little funny... they will say " hey lady you better head home your going to fall out."

I thank all if you so much for letting me vent thank you for letting me know I'm not alone wishing all pf  days and nights!!! 

 

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Hhh, I know, we know, that you are not a wimp. This beast is straight from hell and deserves to be sent back!! 

I am delighted that you have people who know your tell and mention it to you! They are good friends to have around. :wub:

The change in time might be from moving off of Daylight Savings perhaps. Everything seems off by an hour. It used to throw me for a loop. The bulb finally lit up and I realized that 8pm last week is 7pm this week. ;)

Are your D3 levels at say 85 or above? You need to be at that level to reap the benefit of the regimen. You can PM XXX for information on the current regimen. It has changed a bit since I began. Sometimes doing extra 'loading' doses can kick you into remission or reduction to a greater degree than where you are now. Are you using Melatonin or Benadryl? Both can also help. 

As for the welding system, buy a welding tank of O2. Become a hobbyist. That will be under $100.00. The Clustermask is about $30.00 and a regulator can be pretty cheap. Don't buy all at once if that is not possible, but start buying the pits and pieces. Make it your Christmas list or Holiday list? I had to piecemeal it too. But once I had all the pieces and it was running, I was in heaven! Yes, it took over a month to get it all bought, but I made it my priority and informed my husband. After Thanksgiving that year, I had my set-up. Life changed.

Stay with us! We will try to work through this together, okay? Better days are coming, with all the new research going on finally, we may actually have something legal that REALLY works. Won't that be awesome? 

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