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Jeler

Newbie here from Iowa

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Jeler, what is your current O2 status?  (And your overall status?)

I had a pretty nice series of exchanges with that person at the Iowa regulatory board.  S/he seemed authentically concerned, and made whatever suggestions s/he could come up with from staff.  (The name of the person I corresponded with could be a man's or a woman's, so I don't know.)  The suggestions aren't very helpful -- try a big supplier like Airgas because they are also a wholesaler and would have larger tanks on hand; ask the prescribing doctor to specify either large tanks or a large number of small tanks; consider a concentrator.   If you've done all that and you want another step, I had the feeling that maybe that person might try to exert some influence directly with a supplier.  Just a small feeling I had.  Of course, if your problem is solved and you don't want to think about it any more, that's fine.

I guess I would say that my interaction with that person from the board was a lot better than I had expected it to be. 

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CHFather

Current 02 status is much better now that I've switched my med supplier. Previously was on E-tanks and during bad attacks could empty 1 tank a day.  My new supplier is

now delivering M60's. Great people to work with and thanks to Rod H here with telling me about this supplier. Great people with personality +, unlike the other supplier.

 

Thanks so much for taking the time to call the Iowa regulatory board, interesting discovery. I did call up AirGas last week and asked them about who they delivered the larger

to. Glad to hear your experience with the board was beneficial!

4 days ago I started on the Vit. D regimen, I expect it'll be a few days before I can benefit from it. I'm also going to have my blood tested next week.

Lately I've been getting hit semi hard around midnight, 2AM, 4AM and again at 6AM.  Using O2 for 15 minutes puts a stop to all of them.

Jeff

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Very glad to hear this, Jeff.  Do you mind saying the name of the supplier?

I'm going to assume that you know that melatonin at night helps many with the nighttime attacks (melatonin levels are quite low in people with CH).  Starting at maybe 9mg.  

Hopefully, you'll get your aborts down considerably below 15 minutes over time.  Some research shows that just in general aborts tend to be slower in the beginning.  You'll get a breathing rhythm that works best for you.  Recommended is big inhale, hold a couple of seconds, big exhale.  It has been written that for some reason looking down toward your feet can speed an abort.  And then there's equipment: the "ClusterO2 Kit" mask makes a nice improvement for many, and a higher-lpm regulator will also help if it allows you to use the most effective breathing technique without waiting for the bag to refill.  If you're up for it, strong coffee or an energy shot as you start the O2 almost always speeds the abort.

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CHfather

My present supplier is Jackson Medical. So far so good. Great customer service.

I have tried the melatonin at 10mg per night. Didn't notice any decrease in activity at night however.

Vast majority of my aborts are down below 15 minutes, providing I catch them in time. However during my night/early morning attacks by thee time I've been woken up with pain it does take a bit longer. O2 definitely has helped. "Looking at your feet?" My eyes are normally closed but I'll take your word for it. Interesting!  I do have the ClusterO2Kit, not really impressed with it, but it does the job. I quit using the face mask because of increased pressure against the bridge of my nose which is very painful, so now I just use the mouth piece. Coffee or an energy shot at 3AM for me will not work, I'd be awake the rest of the night. Right now I need some sleep.

Thank you

Jeff

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...anyone walking around a corner and catching me trying to abort a hit with O2 woulda said: "Jon, why are you staring at your feet?"....

….now, the only thing I know about physiology was learned from Playboy (circa the 60's)...so this is just ME sayin what worked for ME: In this position it was easier to breath; slow ,fast, however I wanted.....also seemed to allow for drainage (sumtimes ) of my congested nose and the breathing easier thing....then, of course, was convenience to the spit bucket..... always kept around as ona my symptoms was a gusher of spit I couldn't  possibly swallow fast enough (added benefit is that'll gross an observer out enough to get 'em to leave you alone.)......lastly, it kept me a little bit "under control" in a calming position sense.... to help avoid the dreaded thrashing and screaming and pacing...…..it all became a very distinct  routine......YMMV

Edited to add...nowhere did I say ROCKING in this position is not allowed....doing it right now out of habit....

Edited by jon019

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I have only a vague recollection of where the looking toward your feet thing came from.  I feel pretty certain it was advice that Dr. Kudrow, the discoverer of O2 therapy for CH (or at least the most early serious investigator of it), gave somewhere and was reported here by a patient of his.  But it could have been from a conference presentation by Racer or John Bebee, or perhaps from that time I was peeping through jon019's window . . . .

I just did a little search to see if I could find my original source here at the board.  Didn't find that, but did read some posts by people who were patients of Dr. Kudrow's son, from 2013ish, in which Kudrow is telling them that timed release verapamil is no good, which feels like it's something that we are just fully accepting as valid in the last couple of years.  Or maybe it's just me that has been slow to fully accept it -- spiny and others may have been trying to get that through to me for many years now.

(If you're wondering . . . I think I have this right.  Dr. Lee Kudrow himself had CH. His pioneering O2 studies were in the early 1980s. He's now retired.  The actress Lisa Kudrow is his daughter, and her brother, David Kudrow, is also a neurologist specializing in headaches.)

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3 hours ago, Jeler said:

Coffee or an energy shot at 3AM for me will not work, I'd be awake the rest of the night.

You might be right, and I totally don't blame you for not wanting to test it. But something like 80 percent of people who drink caffeine during the night, even the very caffeine-heavy energy shots, to help treat a CH attack report that it does not keep them awake. 

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I am not a big coffee drinker since I have gotten older. I used to be able to have a cup of joe on my way to bed at night and sleep quite soundly. Today, if I have coffee at 4 or 5pm, it will keep me up past my target of 10pm. However, If I am being hit, caffeine in my system does not impair my sleeping. No matter if I need it at 6pm or 2am. 

The Melatonin can be taken at higher doses. I use 30mg in high cycle every night. I read somewhere that you should limit it to 25mg. I do no recommend taking Benadryl and Melatonin at the same time unless your are accustomed to it. It will make you very groggy if you do have to get up. So, you could up that dose quite a bit if it helps. Benadryl is now part of the D3 Regimen - 25 to 50mg at night. That helps reduce histamine production. Once you are accustomed to the Melatonin, then add the Benadryl at one pill for starters. Another strategy is to take the Melatonin in 2 doses. 15mg at bedtime and another when I get up for a hit. Using this method is how I arrived at my dosing schedule that worked best for me. I just tinkered until I found the best result for me. 

As for looking at my feet - Yes. I sit and rock and just relax my neck and use an old Kung Fu directive - Look Forward, See Nothing. In other words, don't focus on anything. Focus, on anything but breathing, makes the hit worse for me. Like trying to listen to a kind relative who wants to try distract me by talking -no response required. Focusing on words jacked the kid right on up there. For me, letting go of 'focusing' on anything helps kill the hit. My breathing tracks more true with this method - hard and fast for starters with deep hard exhales - sharp deep inhales is how I start. Then as the pain receds I slow my breathing until I find my sweet spot ans stay there until the pain is gone. I maintain my breathing pattern and lower the flow as I go. As the pain goes, so does the drive for deep breathing. At the end, I take 30 breaths at normal rate and depth as my post time. This works - for me. 

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CHF , you are spot on about Dr Kudrow and family. I was his patient in the early 80's, I don't remember anything about feet, but he did slap an O2 mask on me , to abort the hit in his office. I find it amazing to meet a CHer who managed med school and residency , he had a young neuro working with him who was chronic. When I'm in cycle, tying my shoes is tough.

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Well I'm now on Day 6 of the Vit D Regimen. I began with only 40,000IU of Vit D/day along with 400mg Magnesium, 1200mg. fish oil (still waiting on Multi-vitamin delivery).

CH episodes yesterday where confined to only 4 KP-1's compared to for example 10 visits ranging from KP-4 thru 6. Last night was the first evening and early morning hours

that I did not have any episodes. What a relief after a 2 1/2 month ordeal. I'm praying for this relief to continue on so I can get back into my normal retirement regime and get back to my pilate classes, which I miss immensely.

The reason I began on only 40,000IU of Vit D daily was because I had not had my blood tested previously. I'll make a phone call today and get that scheduled.

Have a great day and thank you so much.

Jeff

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@Jeler I am glad to read your post on Day 6 of the Vit D regimen. I ordered all of the supplements from Amazon and it will be delivered tomorrow and after over a month of this episode I'm interested in trying it. I'm starting full retirement in a few months after working half time this summer and right now I'm not looking forward to anything.

 

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Jost

As usual I perhaps spoke to soon. The beast returned but the duration's for the headaches is much shorter. O2 knocks out of thee park in 10 minutes. Just got over one of the worse

episodes I've had for a while. But I think it's because I took 25mg of sumatriptan yesterday to battle my CH's while I ran errands and drove a friend to the airport. Kind of a backlash effect that I've read from other posters here.

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...well...ok...I'm certainly aware of rebounds from suma...but that's usually reported after extended use of injections...one day after an oral dose could be coincidental or how you react....i'd give it a few more tries before I nixed a tool......

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3 hours ago, jon019 said:

...well...ok...I'm certainly aware of rebounds from suma...but that's usually reported after extended use of injections...one day after an oral dose could be coincidental or how you react....i'd give it a few more tries before I nixed a tool......

Orally or injection. It is the same drug isn't it?  Everyone reacts differently to medication I imagine.

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It’s the same drug but oral sumatriptan rarely works for CH. it take too long to absorb, plus it’s not as bioavailable as the injection. 99% of CH patients get no relief from oral but get relief in 5-10min with the injection. I do agree with John it’s unlikely that one dose here or there of sumatriptan would cause worsening CH. it’s more of a problem with frequent use... 

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