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Clusters and depression.


devonrex
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Quick history, chronic refractory, been having daily attacks, 2.5 hrs in length with up to an hour between some random longer breaks, most weeks I get about 5 or so 9+, most are in the 8 range, no other breaks. Med list including everything mentioned on this site does little to nothing. Sleep is usually with a mouthful of sleeping pills after being up over 24 hrs so I am out like a light coma patient to get through a night.

 

How do ya'll deal with the depression, anxiety, panic, ptsd day to day? I am kinda at my wits end and anything that might give me ideas would be great. On anti depressants and such. Best I got is music cranked and try to lose myself in it. But any thoughts, suggestions or ideas would be amazing.

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For me it's a daily battle to get outside and take a walk. some fresh air and talking to the neighbors is always positive.  it sounds stupid, but little things help.   stay positive, it will pass. 

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Hey @devonrex,

Sorry your feeling down. Sure is an easy thing to get sucked into when you have to deal with CH. The ptsd is a hard one for me as well, I remember asking on here "how often a cluster head thought about attacks" because I think of them embarrassingly often. I started meditating to for 10-15 minutes a day and just concentrating on trying to block out my worries. I'm not all that good at it, but when you are concentrating on something other than the fear of an attack, it gives less time for your mind to drift back to it. Nowadays they even have apps that walk you through the breathing and what not. For the anxt, I remind myself (probably 20 times a day) that when it happens, I will get through it and that I always do. I think the depression is somewhat natural as it not only hurts beyond explaining but makes one sad to feel excluded from the world which is DEPRESSING so I try and catch myself at the first sign of the gloom and doom mode and do something (anything) other than let myself get trapped in the walls of my own thought jail. I like to write when I am starting to feel a bit depressed because for some reason the writing always seems to come out way better when on the edge of gloom jail. I also agree with @Oaksthat little things like forcing yourself to take a quick walk or sitting in the sun make a difference. Hang in there!!

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Find someone who will listen and not hold anything against you. Someone who knows your just venting to feel better. Remember that it could always be worse ( Not sure what that would be like). I am in the same boat as you are, chronic, tried just about everything on this site and it only "just helps a little". Kind of sucks but keep at it. something may kick in and get you a week off from the hell. I tend to go off the reservation with the 5 day rule and the blocker rules when things are bad. I do whatever I think will help even if its just a little. Keep at it and keep lookin forward you will cone out of it eventually and be just fine. 

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  • 2 weeks later...
Posted (edited)

I think what gets me as well, is the fact so much of the treatments seem to be "Anecdotal shotgun medicine" they stuff all of the " here some guy in Toledo was using this drug and randomly got 3 days cluster free so give this a go. George in Alabama had sex with his chicken and was cluster free for a month, have you tried that?" Into a med course and just fire it at you and see if anything sticks. So little is made for us, I am having to fake migraines to get on this new infusion avec or something or other just in case it could do something. 

IT just takes so much of my life away, I no longer do the math because it just makes things worse. I do the meditation when I can, I try and get absorbed in something, music usually to keep from thought spiraling. This is more just me venting and knowing people here will understand and not look at me with a combination of pity, disbelief and a weird kind of concern,.

Edited by devonrex
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20 hours ago, devonrex said:

people here will understand and not look at me with a combination of pity, disbelief and a weird kind of concern,.

We do look at you that way :) 

It is like looking in a mirror! It all sucks and it is bullshit that not many doctors take the time to even listen to some of the crazy shit we try just so we can make it to the next day only to start all over. I gave up on the math as well. I use to keep notebooks full of every attack I had and got pissed one day and threw it all out thinking what is the point? 

Keep on venting and doing whatever you can to think positive, I know its easier said that done but don't think you alone, we have all done it at least once. 

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  • 2 weeks later...

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