BoscoPiko

Well trying to express my gratitude for those before me and those involved with starting this site would surely fall short! My words may 2, but trying won't kill me I suppose. Thank you 2 all of the pioneers that understood the need for a place like CB, thank you for compiling experiences into a haven for folks like me, thank you for caring beyond monetary gain, thank you for having the insights to recognize the need!

Lol jeebs I'm super serious! Grind, soak gag and choak over here.. it is odd that so many of us are same timing it.. I have upped everything so much that my tummy hates me! Uff.. the porcelain God has manifested its self and seems to think i should pray from both ends This 2 shall pass. In the famous words of @Dallas Denny...ONWARD!!

Sorry Sean! Hang in there!!!

Already started trying.. I have all crossables crossed that you get out of cycle and I don't go in!!!

I think I'm in the ramp up stage (mad shadows for the last week and a half)

Hey Matthew @Matthew Funk, people on here might be able to help a bit more if we knew your script. If you have some stigma with regard to revealing it that's ok 2. There are many migraine meds that get scripted to us cluster heads (typical) but not so helpful unfortunately. I am also going through a rough patch with my CH and utilize a few different methods of preventatives. Have you done any research on the D3 protocol? Or the "Full Monty" D3 reg ? Both have pretty good results. Did you ever speak to your Dr. about O2 as an abort? It's important that you do as it could really help. Lastly, please read the new users banner as that may help you immensely as well. Feel free to ask and ask again if need be. I hope you get through this relatively unscathed. Your not alone here.

Well....many antidepressants have been sister medications for migraine and Ch. You did not specify the medication/antidepressants scripted but most are not effective for CH. Your doc should have first and foremost scripted oxygen as an abortive then maybe verapamil.. which currently is the so called gold standard of treatments not that it means much in the way of CH. The D3 regimen should be looked into as it has helped many more than verapamil..

My experience worked out that time without my head acting up. I made a point to take some treatments prior which I believe made the difference.

NO! THOUGHTS OF IT YES.. SUFFICED? Wade in the muck often? Want help? Still here....

I sure hope no one else has a suicide plan! Life with CH can be immensely difficult at times, but life between the clusters is just 2 special to give up on. @lp3 to make sure I answer your question, no I don't have a suicide plan but in the beginning of my CH (prior to finding CB), I was definitely guilty of thinking about it. I know you have been on here for quite some time, but I don't think you post all that often (which is absolutely ok). It's just that I wonder, if none of the things you mentioned not wanting to hear about don't work at all for you if maybe you haven't been properly diagnosed? Maybe try and see a different Doc or better yet a headache specialist. When is the last time you spoke to a Dr. about what you’re going through? I know you’re not looking for advice but that is pretty much what we do here (try and help). In a way I think maybe you are looking for help because how would it change anything for you to know someone else had a plan? Please excuse the ramble, I just hate to see/hear of a fellow sufferer being in such a bad way. If you change your mind and do want to talk about possible methods that could help, we are here!

Hi Ellie, Unfortunately I don't think BC will help. I was put on them in the very beginning when they misdiagnosed me with migraine and they did not help. I don't know if you can take supplements (vitamines) when breastfeeding but if you can a good start would be the D3 regimen.

I have to admit I was a bit confused as to what the ask of welding companies was 2. If you are bringing a tank to be filled with welding O2 and that is the ask, then the problem shouldn't exist. If bringing with the ask of medical grage O2 (virtually one in the same, medical tends to be slightly more pure at 99.5ish while welding is 93 to 95%) then I understand. So first question is what are you asking of the welding companies, medical grade or welding? If asking for medical, I suggest you just ask for regular welding O2. If in fact no welding companies will fill your tanks (seems unlikely) then it's time to start in on your Doc for a script!

Hi Erin, I think anyone that suffers with an extreme headache condition not only belongs here, but can and will benefit from being here. I have read many a post from those with both HC and PH. Some have benefited from CH methods of maintaining pain free time as well as experienced a community of folks that understand pain in a way that non sufferers just can't comprehend. Sometimes it helps just to know you're not alone in your pain..

I remember the segment! You did great. It was of course shared here on the site. I can't say that any of my experiences have included anything with the nasal passage but it does remind me of a recent post on here about another condition called Charlin Syndrome?

Glad to be of any sort of help! Kick the bunny in the teeth twice..., once for you and once for me!!! A third kick would be ok 2

Hey Jeeb! Yes indeed this is an old one and it's kinda cool in a way to see how clueless I was to the games of the bunny It sucks that you are getting spiked!! As the years went on I have definitely changed my view of the "spike out's". Initially I almost got convinced that I could ignore them and not dose with something, but not so much anymore. Now I have sort of shifted to ignoring shadows but scrabbling to dose, dose dose if spiked! I would say it's time for some funny movies, snacks and possibly @Shaun brearley style neurotic house cleaning

You stay strong! No matter what we are all here with you!

Hi Billie, So sorry to hear that your going through what throughly sounds like a terrible cycle If it makes any difference it really does sound like CH to me. Anyhow I wanted to mention that you could always start the D3 reg in the meantime which has really worked well for many of us. The upside to the D3 reg is that all the supplements are easy to obtain and overall quite good for you and your immune system. I have attached the latest info on getting started for you. I hope you get some definitive information from your upcoming appointment. Hang in there!!! Quick Start Guide - Sept 2023 (1).pdf

Pretty accurate...

A big fat YES!! Attached is the latest info from Batch. Quick Start Guide - Sept 2023 (1).pdf

Hi @Cjmoe, Sounds like your Dr. is a keeper! Unfortunately what you describe with regard to the stabbing pain in the eye on one side, tearing and nasal congestion is pretty indicative of CH. The part where you mention daily headaches that feel like a looming migraine sounds like what is often referred to as shadows. Shadows can be daily for some of us and more of a pre-attack warning for others. I'm glad you started getting your D3 levels elevated and urge you to read about the D3 regimen on here as it includes various other supplements taken in conjunction with the D3 to prevent the cluster bunny from attacking and it's important to incorporate them to reach cecassion. Lots of good stuff on this site. Happy you found this place but sorry you had to...

Hi Sam and welcome.. To answer your above question-Yep... Good that you found the ginger. I use a mixture of turmeric, ginger and turmerones which helps a good deal. It goes away sometimes and comes back sometimes I have never used it but have read a few similar things. Unfortunately most of what I have read has been on the not so helpful side. Maybe get an appointment with a ENT Doc. could be sinus related I would start with the D3 ASAP! It has helped so many of us!

Gotta love that shirt!!

Gosh there is so much that comes up on verap and busting that I'm having a hard time finding a helpful thread. @CHfather, @Bejeeber are either of you pros able to assist with this one?

Hi Coverly, I have seen some back and forth on this subject with some reporting that they were indeed able to bust while using verap and others not. I think the dosage level has also been brought into this as well with some reporting that lowering the dose prior helped to successfully bust. I'll look and see if I can find the threads pertaining to this subject when I get home from work if someone doesn't beat me to it.