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1dallis1

First post here, and a more resilient cycle

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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

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I can’t answer your questions on the d3 regime, Batch might be able to answer some questions you have in that regard. Was the tank possibly near empty? A few veterans on here have mentioned that if the tank is running low the effectiveness isn’t as strong? That’s all I have for now :/ just wanted to welcome you to the forum! 

Kat 

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Hey Kat, thanks for the reply. I did see the thoughts on low tank level maybe not being as effective,  but I don't ever remember that being an issue for me before. I used to be able to drain the last bit of oxygen in my tanks with the same success as the first hit on one. I am going to pay more attention to it though. Especially when it comes to my E tanks, I think there might be something there to follow... Thanks for the welcome and suggestion! 

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I guess it's late, but any chance of getting a prednisone taper for your trip?  For most people it will stop attacks at least part of the time while you're on it.  Seems like that would be safer than driving while aborting.  It will also give the D3 more time to ramp up.  It can take a while, weeks or even months, for D3 to get up to therapeutic levels. 

You seem like a wise and knowledgeable person, so the rest here is just in case . . .  (and I might not have read carefully enough, so forgive me where I'm wrong)

Batch has talked about not driving while taking those Benadryl doses. Maybe you're not significantly affected by them.  If you decide not to take them while actually on the road, considering going with 50mg at night.

You don't mention energy drinks/energy shots/coffee as you start on the O2.  Maybe you are using them, or maybe you've had some kind of issue with them.

I think you are surely aware that higher flow rates can be helpful for aborting. Even with your good O2 results in the past, you never know with CH.  As you know, the issue is to be able to take full deep breaths and have the bag be full when you're ready for the next one.

You can send a PM to Batch, and he'll almost certainly reply promptly.  His username here isn't Batch anymore, it's xxx.  Go to the envelope icon at the top of the page and type xxx into the "To" line.  Don't tell him I sent you (inside joke).

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I have had times when it seems like the oxygen is not helping abort the attack totally and only helping when I am using it. Like CHfather mentioned using the 5hr drinks can sometimes give you that bump to put it over the edge just enough to kill the attack off for a few more hours. I am not sure how long you have been taking the Benadryl but I try to only take it for a week and then stop for at least another week. I feel as if it somehow builds in my system and become less effective, I have no idea if that is true or not. I was on the Verapamil 240ER 3 times a day at one point, changed over to the standard or fast release and dropped down to only taking 120 twice a day. I don't know if that would be better for you or not but something you may want to look into. 

As fat as more hits more often that is something that people see happen over time. Cluster change and sometimes it is for the worst. You will just need to ride it out, adjust your treatments and hope for the best. We all have tried many different things like different breathing techniques, hot or cold towels pressed on your face or neck, hot water to put feet into, ginger tea, drink cold water with a straw to hit the roof of your mouth. I am sure we have 100's more here and you may have read them all but like myself they slip the mind when all the pressure builds and the fun begins. 

Good luck with your move, we will be here when you are all settled in and are willing to help. 

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9 hours ago, CHfather said:

I guess it's late, but any chance of getting a prednisone taper for your trip?  For most people it will stop attacks at least part of the time while you're on it.  Seems like that would be safer than driving while aborting.  It will also give the D3 more time to ramp up.  It can take a while, weeks or even months, for D3 to get up to therapeutic levels. 

You seem like a wise and knowledgeable person, so the rest here is just in case . . .  (and I might not have read carefully enough, so forgive me where I'm wrong)

Batch has talked about not driving while taking those Benadryl doses. Maybe you're not significantly affected by them.  If you decide not to take them while actually on the road, considering going with 50mg at night.

You don't mention energy drinks/energy shots/coffee as you start on the O2.  Maybe you are using them, or maybe you've had some kind of issue with them.

I think you are surely aware that higher flow rates can be helpful for aborting. Even with your good O2 results in the past, you never know with CH.  As you know, the issue is to be able to take full deep breaths and have the bag be full when you're ready for the next one.

You can send a PM to Batch, and he'll almost certainly reply promptly.  His username here isn't Batch anymore, it's xxx.  Go to the envelope icon at the top of the page and type xxx into the "To" line.  Don't tell him I sent you (inside joke).

Thanks all! I've reached out to my PCM to see about getting the pred taper for the trip. As for the caffeine, I have tried it and it does seem to help for the most part. However, I chugged a fresh brew of cold coffee the other night while I was in the middle of a hit, and it seemed to make it worse. Which was weird because energy drinks usually help, so I'll stick to those besides coffee. Definitely will grab the 5hr energy. Chugging the big cans can be difficult.

As for Batch, seeing his posts really was uplifting and encouraging! It's so frustrating to me that we sufferers are often the most educated on the topic, and have to educate the physicians. I mean I guess it makes sense also, but still frustrating. I'm just glad thr detailed info is there to share with them. The benadryl doesn't really affect to bad with drowsiness, but I may come off that in a couple days as suggested but I know the Miami Valley of Ohio is notorious for allergies (I'll be there for 8 days), so not sure yet. 

On the O2 topic, I'm still trying to find the right and most effective technique for me on this cycle. It seems if I get a huge lung full, take the Opti2 mask off, hold for 3-5 secs and purse my lips and exhale all the way with the crunch at the end while the bag fills back and go back to the mask for the next breath, that seems to be pretty effective. My m-tank regulator only goes to 15, but my e goes to 25, I find myself lulling all the air out of the bag on the m sometimes and being left with a fully complete lung full. Ive looked at demand valves, and that seems like something I may want to explore further. 

Again, thank you all for the comments! 

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Quick follow-up question. I got the pred taper RX and I got standard verap as well. When should I take my doses? I'm on the D3 regime and take those in the am. Should I also start the verap now that it's normal one, and when? Any suggestions? I messaged Batch, but haven't heard anything yet. 

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You will want to take the D3 a few hours away from your verapamil. I do Veap first thing in the morning when I wake up around 5AM, D3 at about 5PM and Verap again about 930pm. 

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What you are doing with the O2 - inhale, hold, and exhale with a crunch seems to work best for most of us. 

Not being able to get enough O2 per breath sucks. You need the cadence that works for you and plenty of O2 to maintain that rhythm that is most effective for you. It is often the case that a 25lpm regulator is needed. So, I am not surprised that the tank with the 25lpm works better for you. If you can outrun it, you need a higher flow rate. 

If you still have a shadow when you quit the O2, the hit will return for most if not all of us. And when you are PF, do your post breathing as well.I have walked away from my tank with a 'minor' shadow, only to have it ramp right back up and I do a bat turn back to the O2. It needs to be completely gone for me and then 5 minutes of post to remain PF for a some number of hours. 

And heading to a new locale can begin a cycle sometimes. So, I suggest that you keep the Benadryl in the mix. Maybe only at night when you are traveling, but once there, go back to taking the ones during the day if possible. The different pollen can be a big problem.

 

ATB and Welcome to the site!!! :)  

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