I just got diagnosed chronic… I don’t know if I can do this anymore… everyone’s already so quick to judge with this condition and that makes it hard enough… but to go from episodic to chronic…my biggest fear since I’ve found out what I have… I’m in a real dark place right now in my head… real dark place! I just want to end it… tired of falling behind financially… there used to be at least some hope knowing I was episodic… knowing it would eventually end and I would be able to at least get a break and try my best to catch up… I don’t know what to do… nobody understands… I feel so lost…I hate sounding like a bitch but I feel like I’m losing it…losing hope, focus, drive, will…and then my boss tells me today… I don’t know if I should force you to work but just because your diagnoses changed doesn’t mean anything changed with what you are dealing with or what you already knew…WHAT??? It changes everything to me…what do you mean??? How do you chronic sufferers do this… I’ve always told myself the day I go chronic is the day I pull the trigger… and here we are… I’ve had to move 3 times in this cycle and on top of that my relationship of 10 years has ended and in the worst way possible too… I’m exhausted emotionally and physically. I just wish the people around me loved me enough to at least understand that this is something very difficult to process… fuck this disease dude!!! Sorry for the dark post but I had to get it out… nobody around me is listening and I’m just barely hanging on right now!
#fact
Cluster headache pain is more intense than any other pain disorder we examined at 9.7, with the next most painful disorder, labor pain at 7.2, a full 2.5 points less on a 0–10 scale.Dec 18, 2020
Oh Billy - i am so very sorry that you are going through all of this and not getting the support and understand that you need.
Please don’t talk about ending it or losing hope - i know this is so frustrating and difficult to live with but it is not the end. I know you were on a few things (emgality, verapamil and sumatriptan injections) - are you still taking all or any of these? The dosage was not working for you - were you able to get this corrected?
I dont know how you deal with these as often as you do. You have shown your strength over an over again.
this breaks my heart to read. i wish i could give you a huge hug and make you feel better. You have gone through a lot in a short time but you are doing such a amazing job with getting your life sorted out.
You were just given this diagnosis - you need to breathe and take it in fully. I can’t say it is easy but i’ve decided that the word “chronic” is not going to fuck me up mentally. I am going to literally attack each day the best i know how. I know that i can go to bed with so much planned and have the best attitude and by morning my body is just not on board so i have to adjust (it is depressing and dehumanizing at times - this is when you look inside and find that strength to keep moving forward with all that you have). I find meditation and prayer to have helped me immensely.
This will not define you! you need to process this diagnosis and know that you can still be the kick ass amazing person you’ve always been.
again i’m sorry that those around you are not fully understanding where you are coming from - most people hear headache or migraine and say ah ok - so what. they do not realize what a cluster headache is and how incredibly painfully intense it can be. i have to admit that i had not heard of these until talking with you. don’t let their ignorance make you feel like you are unloved. we love you and are grateful to be on this journey with you. FUCK THIS DISEASE is exactly right -
Are you able to take some time off of work (i know you have been working crazy hours for some time now) - maybe find time to focus on you and get your bearings straight?
sending you much comfort and love my friend - i do hope you find a way to calm those dark thoughts and get a restful night.
PS- in no way do you sound like a bitch- please don’t think this. You are going through something intense and i am glad that you were able to vocalize it here.
Billy, im so sorry, keep venting to us here we are all here for you, i dont know alot about cluster headaches other than what youve explained but now that you have the new diagnosis does that not mean that it can be managed more fully than before? Stronger pain meds and more medical intervention by proffessionals etc? Throwing some big love and hugs your way Billy
I’m at counseling now. I’ll touch base here later on today and fill you in more. Thankful for your support as always!!! Yesterday was just one of those days where you feel like all hope is lost. Thankfully I woke up in a better headspace…. It’s just so much to battle all at once you know… ODDAT though, still sober
Grateful that you have counseling this am.
I can totally understand how everything can pile up all at once. Grateful you are in a better headspace today.
Odaat is right…and we are all here for you!
Morning Billy
Just checking in with you. - how are you feeling today? I do hope your counseling session went well yesterday.
Have a wonderful Saturday my friend
what i’ve somewhat learned about cluster headaches…
it’s worse and lasts longer than a migraine or severe headache — the pain is more intense and lasts for up to months at a time and comes on more frequently and without warning.
A cluster headache commonly awakens you in the middle of the night with intense pain in or around one eye on one side of your head . Bouts of frequent attacks, known as cluster periods, can last from weeks to months, usually followed by remission periods when the headaches stop.
its crazy how i’d never even heard about this until just recently when Billy explained.
Hope you are well Billy and do know we are all here for you. There are many like us that don’t know about this condition and the intensity of it but doesn’t mean that they care for you any less.
much love my friend - i do hope you doing better today
Hey guys… counseling was definitely needed and a god send this week…let’s just say that. I am in a better headspace and have taken a few days to reflect and regroup my motivation and will. ODAAT…that’s all I can do…that’s all any of us can do…cluster headaches are the worse and they should be called something else because for one it’s way more than a headache, they are more of an attack per say… the worst pain I’ve ever gone through in life and I’ve had a few surgeries/work accidents…and with this condition my pain tolerance is really high… I wouldn’t wish this on anyone except for pedophiles … they should all have it 24/7… anyways… yea it’s pretty horrible and going from episodic to chronic is a pretty big mental blow knowing there is no end in sight for right now… but I got this, I have an awesome group of people ( this includes you guys) supporting me and checking on me daily ( I’m blessed right now) I can’t thank you guys enough… you have all definitely helped me through this and my sobriety… I guess I’m also thankful I went chronic because it keeps my mind busy and not thinking about getting high at all, actually the opposite, it makes me want to keep all of that 1000 miles away from me so looking at the glass half full today and just taking account of all the positives in my life right now… it does suck not knowing when they are coming and going but it keeps me on my toes… not excited to be trying new meds etc… and the crazy thing is I guess what has been helping other sufferers is magic mushrooms I forget the scientific name but there’s research backing it… problem is, it’s illegal and my neurologist advised against them saying he would drop me as a patient if I went down that road so… I’m trying to just stay focused and trust the doctors and process… @JazzyS thank you so much. If we were closer I would have definitely done sent you some flowers or something… you are a true friend!!! @SoberGuyUSA@Starlight14@LeeHawk thank you all for your continued support as well!!!
You are too sweet my friend - i’m just so happy to hear that you are in a better mental place today! Been worried about you but glad to know that you are aware that we are all hear for you and so grateful to know you have a good support system in real life!
Wishing for the best for you - hopefully whatever the doctors do / prescribe helps you my friend.
Came across this today and am sharing with so many - do give this number a call. It brightened up my day for sure!
That’s pretty awesome, just like you. I need to be more active in this group. Every time I get too busy and don’t, it shows in my day to day. Whoever created this forum is a genius and deserves the world because look at us all just supporting and helping each other get through life!!! It’s a beautiful thing to be a part of…I’m happy to have you all in my life and in my circle
I agree with this, i feel like this site should be like a multiple award winner but i guess the reward lies in being able to have a part in changing peoples lives aswell as our own. Im always happy to see you around on here. I totally agree too that @JazzyS is worth her weight in gold
Too sweet my friends and @Billy85 … I think we are all Rockstars and it amazes me how strangers on the internet (the internet of all places) from alround the world can show so much support and compassion for one another. We truly are stronger together…love my new sober friends / family
A huge thanks to @Robin for creating this app and bringing us all together and all the moderators for keeping the site a safe place for all
Billy my friend, I am so sorry your going through this…I am praying hard for you. I totally get wanting to give up. However, i have no choice because the choice i made no matter how shitty i feel is…i wake my head up sober and i lay my head down sober…just 24hrs and tomorrow will do it again 24…just for today. The mind is a powerful and beautiful thing, will bring you pain and joy…keep thinking the joy…the pain will go away. Keep grounded, focused and the one rule i learned and still say it…" 10-80-10" spend 10 percent in past 80 percent in present and 10 in future. You got this…" one day at a time and Easy does it…iam always here…message me anytime…much love my friend. GatorGirl
