First Post, better late than never

[doctornugz]

Hello all, truly and honestly grateful to have found this site and have the opportunity to learn from so many beautiful people. The anti-inflammatory regimen has been the thing of dreams for me, and allowed me the opportunity to look at the beast, not with fear, but with respect. 
 

All little about myself. I’m a 24 year old episodic CHer living in the good ole honky tonk capital of the south! Where the only things that are certain ais crazy weather volatility, broadway girls, and the reimmergence of the beast. My first memory of the beast was when I was in highschool at 14 years old. I remember being in Spanish class early in the morning in 2nd period during the middle of October right around homecoming, and getting these incredibly painful headaches right behind my left eye that came out of absolutely no where, leaving me FLOORED. I did what any 14 year old would do and ate my body weight in Advil and Tylenol for weeks on end. This stupid headache was hitting me at the same time every damn day, and that’s when I started experiencing the classic rebounds. Holy shit I was NOT ready for that classic beast escalation. Compounded by the fact I had no idea what was going on inside my brain. I saw my pcp who said migraines (of course) and put me on Celexa. Then one day after about 5 weeks they just stopped. I woke up one day gripping the Advil bottle waiting for the first sign so I could take 4 of them bad boys. It never came. Yay, let’s forget about it and move on, yeah? I experienced 2 of what I consider mini cycles, I don’t know what else to call them since at the time I had no clue what was going on. They lasted each about 5 days a piece and happened at seemingly random times throughout the year. I hadn’t connected the dots yet and just disregarded both as “getting sick” or something. Fast forward to November 2020, the beast returned and made his presence KNOWN. This time there was absolutely no way I could disregard it, and I knew something was wrong. 7 weeks of misery, tears, anxiety, and everything in between that we all know too well. I had my tricks that I had learned through the years to help, sure. Wrapping a shirt as tight as I could around my head, pushing my thumb into my eye at a very specific angle and pressure, hot baths/showers (my personal favorite), etc… but it just wasn’t doing the trick anymore. About 3 weeks in I had a mental breakdown and found my way to a nice week long vacation in the psych ward. It actually helped me, believe it or not. Gave me just a little ounce of motivation to find out what this shit is. So then starts the slew of drs appointments, all the way to a neurologist at a well respected hospital who listened to me and gave me the answer I had been looking for. Gave me a verap script, immitrex injection script, and sent me on my way. (No longer my neuro) but I had my answer and decided to hit the good ole internet -> Reddit -> here! I then found everybody’s favorite, Batch! And he guided me through the next 2 weeks of taking his regimen to a T. And it fucking worked. I never even had to take the verap or use a single injection (partly because terrified of going chronic and rebounds) After 2.5 weeks my headaches went away and I was PF. I stopped the regimen shortly after and remained PF for THREE years!!!!!! 
 

Until Sept. 28th. I had just sat through a 6 hour tattoo session and I guess I just hadn’t gone through enough pain that day. Immediately as we finish up, shadow city. That went on for a few weeks until it turned full blown and I KNEW the beast had returned. What did I do? Waited a few weeks to do anything of course because 3 years of not keeping up with this does a number on your coping mechanisms. Anyways I found myself back here a few weeks ago and it literally brought me to tears. Hit the D3  regimen again, same routine as last time with all the new updates, and here I am 14 days on the loading dose. Still having shadows, very very minor in comparison. Around day 4 I stopped having massive attacks and it went purely shadow. I plan on staying at this dose for a few more days or until PF, but im going on 10ish weeks and honestly I am struggling. My body is tired. My head is tired. My anxiety and depression are at war with each other 24/7. I seriously feel I have a PTSD like response to these attacks. I’m working on seeing a therapist to help with the mental health issues. But thanks to you guys I keep fighting. Seriously, I have actual hope because of the knowledge I’ve gained from this place. Don’t worry my next step is working on getting O2, and getting off antidepressants for a proper busting experience. I also want to stop smoking cannabis as I rely too much on it as a crutch and feel I lack the ability to process negative emotions the correct and healthy way, but thats for another conversation. I love every single one of you, and I owe you all so so so much. I will attempt to be more active in the future moving forward in this community, but I just had to tell someone a little bit of my story… Someone who would understand and not say “yeah I get headaches too” 

Thanks for reading if you made it this far! We are so incredibly fucking strong, you know that? I wish we didn’t have to be but we are. And we’re fighters. I look forward to getting to know some of you more! (I’ve already read damn near every post from the last 5 years). Hoping to go to the next conference and meet some you lovely folks!! 

[Bejeeber]

Man what a captivating report - well done @doctornugz

32 minutes ago, doctornugz said:

I seriously feel I have a PTSD like response to these attacks

32 minutes ago, doctornugz said:

getting off antidepressants for a proper busting experience

With all your reading, I bet you've well noted that the busting can potentially help with the PTSD-like stuff too, so it sounds to me like you're preparing for a good shot at some double whammy busting benefits. All appendages quadruply crossed for best outcomes. I've now taken appendage crossing to another level @BoscoPiko , try to beat that! 

[BoscoPiko]

@doctornugz Hey hi!

I'm gonna start by just saying kudos to you for putting all your going though into words. Gosh do you remind me of myself when I first found this place to live. Seems you have been around but maybe have not interacted much (massively ok). I am so happy that you have gleaned as much as you have from this awesome sauce site! I would not assume that you did anything to fluff the bunny. CH is complicated and hard to keep in your pocket. It morphs to find holes.  Never stop the D3 regimen..your body is only better for it. (I'm operating from my phone so please excuse typos and punctuation).  You have options but you also need to read on here. I myself had an unpredicted attack today even though I've been clear for a week. Ginger and curcumin may help the shadows.  I tried to skim your post but am sure I'm missing some of the important things. You're stronger than you know!

[BoscoPiko]

2 hours ago, Bejeeber said:

I've now taken appendage crossing to another level @BoscoPiko , try to beat that! 

No way.. not taking the bait! I'm  a newbie and what you had to say @Bejeeber made me feel better! Can't top that!

[xBoss]

Hey Hey!

 

Welcome to the forum. It's a battle brother, I have 25 years under my belt and I still start to lose my mind after about week 5 or so. The no sleep part is what does it for me. You seem to be very informed about all things CH! I wish you well fellow warrior. 

[devonrex]

Glad you found us, sorry you had to find us. I have read that yes, we do get ptsd from these things. How can you go through some of if not the worst pain a human can experience and not be full of those feeling of dread, of panic of fear over the next. I have had many instances of this over the years being chronic. Like I am going to lose my mind. So many here are so knowledgeable and can steer you right. This really is an amazing place for those in the trenches and those helping those in the trenches.

[CHfather]

On 12/15/2023 at 10:49 PM, BoscoPiko said:

fluff the bunny.

When I first heard Jeebs use that phrase at a conference dinner, I thought he was talking about something else entirely.  My face is so red! (from embarrassment, I mean)

Edited December 18, 2023 by CHfather

[CHfather]

On 12/15/2023 at 8:23 PM, doctornugz said:

I’m working on seeing a therapist to help with the mental health issues.

Dr. Larry Schor is a psychotherapist who has CH.  He has spoken at many CB conferences and is an exceptionally good guy.  I don't know whether he works with clients remotely, but it might be worthwhile to contact him and find out if he has any suggestions for you:  http://www.carrolltoncounseling.com/

On 12/15/2023 at 8:23 PM, doctornugz said:

Don’t worry my next step is working on getting O2

Yes, indeed.  Take that step now, please, and let us know how it's going.  There are some links in here -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ --to help persuade a doctor, but s/he should just know from looking at any standard online or printed medical reference that O2 is the #1 recommended abortive (along with injected triptans, but of course the difference in side effects is night and day). Some people here, including me, theorize that doctors' resistance to prescribing O2 is often not that they don't know about it, but (a) they don't have patients using high-flow O2 and don't know how to "manage" it; (b) they don't know how to write a prescription for O2 for CH; and/or (c) they figure Imitrex works just fine.  (The prescription language is something like "Oxygen therapy for Cluster Headache: 15 minutes at 12-15 liters per minute with non-rebreather mask.")   Welding O2 is a very reasonable alternative.  I agree with Jeebs that some busting substances might improve mental wellbeing in physiological ways, and I would also say that oxygen has improved the mental wellbeing of many, many people with CH, taking away some of the dread that you describe.

On 12/15/2023 at 8:23 PM, doctornugz said:

getting off antidepressants for a proper busting experience

I get lost on this topic, but it's my understanding that some antidepressants might block busting and some do not.  Could be wrong about that.  I would suggest that you name the specific antidepressants involved and then maybe people can give some direct advice/guidance.  (You can also use the search bar at the top right of every page to enter a term and see what people have said about it.) 

[BoscoPiko]

12 hours ago, CHfather said:

When I first heard Jeebs use that phrase at a conference dinner, I thought he was talking about something else entirely.  My face is so red! (from embarrassment, I mean)

Well technically, it's sorta the same thing after all we are talking about "waking em up"

[doctornugz]

@Bejeeber @BoscoPiko @xBoss @devonrex @CHfather Thank you all for your kind responses and all that you do for the CH community. I made this post about 2ish weeks into the D3 regimen, and fortunately things have gotten much much better since then. Still not completely PF (constant low-level shadows that are getting incrementally better each day) and am over 3 weeks removed from my last Kip 6+ attack. because of this, I didn’t find my way back here until just now. Something about when you’re finally not in agonizing pain, you almost want to forget it ever happened and avoid even the thought of it. I spent hours combing through the files and posts here regarding pristiq and L and have come to the conclusion to just go for it. There’s so much anecdotal evidence from both sides of the coin that I just really have to find out for myself if it dampens to effects. I have finally gotten ahold of some vitamins L and M and actually just dropped 1 tab about 20 minutes ago. Fingers crossed for some good ole D3 + L synergy to help me cross the final hurdle into PF bliss. Will dose again in 5 day intervals until this motherfucker gets the hint and leaves me be. Will update how the trip goes!! PF wishes to you all!! 
 

Also… O2 is in the works! Have an appt with my PCP next week for blood work and to discuss oxygen. I know he will write me a script for it, fortunately he’s a huge patient advocate and realizes that he doesn’t know everything there’s is to know about everything, and he was super receptive to the information and data I brought to my appointments showing the efficiency of O2 and even tryptamines

[CHfather]

7 hours ago, doctornugz said:

fortunately he’s a huge patient advocate and realizes that he doesn’t know everything there’s is to know about everything, and he was super receptive to the information and data I brought to my appointments showing the efficiency of O2 and even tryptamines

Such a simple thing, yet it practically brings tears of happiness to my eyes.

[Bejeeber]

Yes, very happy to know you have such a fantastic PCP!

[doctornugz]

Here I am roughly 9 hours later on the come down!! Had a fantastic experience honestly. Really eye opening and even now I feel very at peace. I am experiencing a minor shadow at the moment but nothing all too crazy!