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Why don't we all just get real?


lp3
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The simple fact of the matter is that this is a non repairable disease that us ch will have til the day we die. No one really knows what causes it (if you reply back hypothalamus i will scream) and that all prescribed drugs are psuedo science placebos. Oxygen is not a cure. Lsd Mushrooms etc are a distraction and that we have been chosen by god to be sent into the horror chambers of hell. So...fuck god. Doctors, big pharma, psychedelics etc. You have been chosen. It is your and my destiny to live life like this. Once you take this attitude u can respect that this whole life of yours is a joke. Got a rope? There is a reason these headaches are called suicide headaches. Please do not post d3 regiment or other bullshit in response. I have tried them all. And. Nothing. Works. Chronic. Mad. And done with it all.

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You are correct, there is no cure! But you can get some life back with busting and other things people have suggested. I have been where you are and got some relief only to go back. It’s a life long fight and I am thankful for this group of people that have helped me cope with this life. 

Edited by mit12
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I still maintain that I discovered the cause back in late 2020. If you care to glance at the theory, research, and treatment plan you may want to check out this post. Nothing worked for me either until I discovered this and created a treatment plan the treats the actual cause. I went from 3.5 years of being chronic to now, where I mostly lead a normal life. Every once in a great while I'll get a shadow and have to stick to the treatment plan more diligently. I hope this is helpful to you.

 

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Hey @lp3 I just wanted to take a moment and reply to this post because I can feel your anger, disappointment and devastation through your words. To start I want to say that no your life is not a joke nor is mine or any other cluster head's. @mit12 was correct in saying that  a cure is non-existent and that buying time to live life as we used to is possible!  I really get where your coming from with not wanting to hear another bleep about a janky hypo or D3 or busting etc.. In the past I believed that this affliction was a punishment of sorts for some bad thing (I've done many a bad thing)  in my past. Truthfully that's like saying a baby diagnosed with leukemia is being dished penance. For what?? I'm so sorry that you have not found "clear brain" as of yet and that your torment is so awful. My life has changed so much since this diagnosis that at times I'm not sure who or what I've become.  My strength is perseverance! Try, Try and Try again! Don't give up my friend! Never give up! Yes it's hard and if you believe God chose you to walk the hollows of horrer then be proud because God chooses only THE BEST! 

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LP3

Yes the reality is it is relentless and without mercy

Yes 15 attacks a day is unbearable

Yes I question ‘why me?’

Yes there is no future, only today and tomorrow

Yes the medicines are no cure and take a huge toll on my health

Yes I can not enjoy simple things anymore like movies or concerts

Yes there is only little that I can eat or drink without triggering

Yes the nights are long not knowing when it is going to stop

Yes tomorrow it will start all over again

Yes I am fucked

 

Yes I do not feel fucked

Yes I refuse to give up

Yes I need to be stronger than this

Yes I can not tell my parents up in heaven, ‘sorry I gave up’

Yes I lead by example for my children

Yes I do accept the help of my friends for the things I can’t do anymore

Yes the glass is half-full, not half empty

Yes I can still see the beauty is small things

Yes there is a place (here!) where we really understand

Yes I take comfort that I am not alone

 

I found my peace with it

I hope you can find yours

 

Alex 

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  • 2 weeks later...

LP3, only those of us in this hell can understand your rage and feelings of hopelessness. But DO NOT give in to those feelings. You did well to vent to your brothers and sisters on here. We all get it. 
 

I dosed this morning at 4 am and then stood in the kitchen about an hour ago and wept as a KIP 8/9 hit me again. I was devastated. I could hear laughter and happiness in the next room as family celebrated-just as it should be. . 

The beast had once again reared its ugly head on one of the holiest times of the year for our family. I hate being made the center of attention when the beast interrupts everyone’s life - not just mine. No one complains because they understand-as much as they can anyway AND because they love me  

After the entire family prayed for me I was humiliated by once again being the center of attention. I was grateful for the love but once again I had been crushed by the beast. However, I somehow found the strength to get back into the fight 

So I open the forums and your post is the first one I see. Surprisingly I wasn’t discouraged by it but my first thought was LP3 needs us. Of course, so many had responded that very day to you with kindness and understanding that only a fellow cluster head can have. 
 

it dawned on me that is what keeps us all going in those dark moments: the fact that we’re not alone, that someone somewhere needs to hear that someone else understands, and that there is no way in hell we will let each other down. 
 

thank you for your post and I hope you had a wonderful holiday weekend-despite the beast. 
 

 

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