Hello Team,
First post, but long-time episodic sufferer. Well, long-time is relative and not really so compared to others here. I'm 37 and got my first cluster when I was 19. I'm active duty Air Force, and my first cycle was actually right after basic training in 2003. I had no idea at that time that the beast in my head would be something that revisits me every year to 2.5 year time frame. I have been serving for 17.5 years. Through those years, I have gotten CTs, MRIs, misdiagnosis's, pain killers, and plenty of frustration in the military health care system having to explain my case with just enough familiarity and time before moving or getting a new PCM to start all over. I was finally able to advocate and get oxygen after doing all my own research and bringing printed out copies of studies showing O2 therapy for CHs to my doc around 2009. Even still, getting equipment and working with new suppliers after a move is pain in the butt. However, I'll take it any day of the week compared to get relief from the beast.
My handling of CHs has morphed over the years as I am sure it has for many of us. Trying new things, reading about someone's response to a certain approach, and someone else having the complete opposite effect. Here's where I currently stand, this cycle started Jun 24 and I was in remission since Jun 2018. This cycle seems to be more enduring though and persistent than any others before it. Here's what I'm doing: I have Verapamil ER, and started it the day after, but after reading that ER isn't the most effective and the dosage required to see benefit comes with other concerns, stopped taking it after a few days. I had gotten to 120mg in the am, and 120mg in pm. One of the reasons I stopped was after reading Batch's D3 regime post, I had never seen that before, but began on Jul 3. Now, once I get to new area for a military move I always try to establish my O2 equipment and have it on stand by. Luckily, I have had it since the first one of this cycle, and I bought the Optimask a long time ago after trips to the emerg room and getting their non-rebreathers that you have to modify and it's little reservoir. Additionally, I have sumatriptan nasal sprays at 20mg each. So here's where I am getting confused and need some advice, suggestions, or thoughts. The first couple days the CHs would abort fairly easy with just the O2. In fact, after 3 days of getting a CH every day (which is typical for me to get one a day in a cycle) , I went two days without one. Yet, here's where things are going, my CHs are rarely being aborted with one interval on the tank. I usually spend 15 min on the mask, and go about without having to worry about another. However, the past few days I have been getting multiple in a day, and also having to hit the tank like 3 times to keep it from creeping back in. Only to come back a couple hours later. I don't take the nasal sprays with each one. I honestly don't like to, but when I combine the spray and O2, I seem to get good relief.
Here's some big questions for me: I am in the 2-week loading phase of the D3 regime. I have not done labs, and currently about to move myself in 2 days once again to Virginia from North Dakota, with a little stop over in Dayton, OH. I am also taking the Benadryl 4x day at 25mg each as the pollen and blooming of things in ND has been occurring for a few weeks. I take the D3 regime as shown, but only 400mg of Magnesium. Is there anything I should do or adjust with my regime to see any better results more rapidly? I'm really concerned about this move as I am a single dad and moving myself in a big Uhaul with my 7 year old daughter. One of my fears, and most likely will be reality, is driving down the road with a mask on with my E-tank at my side. When I have the mask on, I am fine, I can keep the beast quelled. Still though. Is there any reason why O2 isn't as effective as it used to be? I see some saying the amount left in the tank may play a role, but that's never been the case for me before. Should just continue with the nasal spray and O2 since I know it usually works? I'll give you an example. I had a hit around 5pm this afternoon, O2 for 20 mins, then off, shadow there, but not ramping up, well then I spoke too soon, and back on the mask at 5:45. Another 15 mins, feeling like it's gone, wait 5 mins, off the mask, nope. Decide to spray, then jump on the mask again, 10 mins, good to go. Now mind you, I got hit at 1:15pm today as well. I normally don't get more than once unless I'm in the peak of the cycle. Even then, it's usually a late morning, and not long after bed that make up the two. I have been getting hit early afternoon into evening. Yesterday was particularly bad, but I'm going to chock that up to poor food choices and staying up way later than usual on the 4th, but still.
I know this is a long post, and I apologize for that. I have never taken the time to post on here, and I should have a long time ago. Sometimes, I just want to talk about it, especially with people that understand. In this case, I'm typing about it. One last thing I am going to try is getting into Keto. I have done the diet before for weight loss reasons, but just recently saw there is a correlation for some and CHs. Is there anything anyone could suggest (all legal options of course, can't try 'busting', at least for a couple more years)? Do i need to adjust or add something to my D3 regime? Anyone have theirs become more resilient to O2? Thank you and I look forward to finally interacting with you as I should have been a long time ago. -Dustin
