Kimbers

And I’m back lol! As expected, my husband finished his prednisone taper on Thursday and that very evening got a headache, although not as severe as normal. Dove into this D3 for the last few days, got everything ordered and he started it last night. Since he always thinks he has side effects from everything I didn’t do the loading dose of d3 just the 10000 he’s been taking and we’ll do that thru the weekend so he can see that he’s fine, then we’ll start loading ( his anxiety has hit an all time high because of these headaches, which for me anyway might be the most annoying thing!) Talked to his neuro yesterday and she started the Verapamil. He left this morning for a quick weekend trip with his dad and our daughter so he’ll start that on Sunday when he gets back along with the full D3 loading protocol! So far he’s been gone 3 hours and has already given himself an injection and is driving everyone crazy…honestly, I think it’s pure anxiety because this is the first time he’s left the house to go anywhere except the drs. in almost 3 months. I keep telling him he’s got to learn how to manage and live with these headaches in the outside world because he can’t hide out forever, he’s got to go back to work at some point! If anyone has tips for how to help him achieve that, I’ll take em! Thank you all so much for your help! Its comforting to know I have a community of amazing people that we can reach out to for advice and support. Wishing you all pain free days!

@Dallas Denny @Bejeeber I have him taking the 10000 units of D3 and 500 mg of magnesium a day but that’s it. I didn’t quite know what to do with that regimen, and he was already doing the steroid so I waited but I’ll order everything I don’t have tonight and start him on the protocol ASAP! I did a pretty deep dive into the CH world once he was diagnosed, and I had to fight with his first neurologist because he prescribed the wrong oxygen. Gave him an oxygen concentrator…took it back the very next day and informed him, with proof from this site, that he was wrong. He then basically dismissed my husband as a patient and referred us to the Headache Clinic. While we waited for an appt there, I called our primary dr and told him about the oxygen and 2 days later a tank showed up at our door!! 15 lpm and a non rebreather. I honestly think he doesn’t get on it quick enough and that’s why it doesn’t abort it, he’s always trying to tough it out. Stubborn as hell, but getting more and more receptive the longer this goes on. He’s tired, I’m sure you can relate.

@Bejeeber Thank you so much for that part about getting his life back! Def a question that’s been on my mind a lot!! I’ve read a lot of the forum posts and have seen you both posting and responding quite a bit! Thank you for helping so much! It means a lot to me, my husband and I’m sure a lot of others on this thread!

@Dallas Denny Thank you! That’s what I was afraid of, he is not on any preventive meds, but the dr did say that the next step is verapamil. I have him currently taking D3 and magnesium and was going to add in all the others mentioned in the regimen I found on here after he finished the prednisone. I suppose I’ll start the full regimen now though. He gives me a hard time taking pills so I didn’t want to overwhelm him lol. We have the high flow oxygen but he says it doesn’t help and he doesn’t like it. I think it’s more that he doesn’t like it. He’s rather stubborn. We also have sumatriptan injections but haven’t needed to use them yet since the prednisone is working. Should I call his dr and ask for the verapamil Rx? Is there any way to know if he is episodic or chronic? Or is it a wait and see kinda thing? He def started with these headaches in the beginning of August, but had a hard time describing them and how they felt for a while so I’ve been wondering if they started before august as I can remember certain traits he exhibits while he’s having them happening before then. This is very overwhelming lol

Hi Everyone! I've been sifting through theses forums looking for help and answers and I must say...I'm so thankful for all of you sharing your stories and questions! It's been a HUGE help! My husband was diagnosed with clusters almost 9 weeks ago, he is currently in cycle (we hope he's not chronic, but don't know yet). this is his very first episode and from what I've gathered we are very blessed to have found the right drs so quickly that gave him the right diagnosis and sent us to the right places. He is currently on a prednisone taper (very high dose), and his CH is gone but he is still having shadows a good majority of the day ( he says they are more annoying then painful). I'm concerned that this might mean he is NOT coming out of the cycle and that once the prednisone is done, they will come back. anyone have experience with this same thing?