Looking for support/REM sleep question

[CHfather]

This is what one of the world's leading CH experts recommends regarding steroids: "Corticosteroids in the form of prednisone. 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach. It often stops the cluster period, and should be used no more than once a year to avoid aseptic necrosis."   (google [goadsby management of cluster headache] to see the whole document)

[Bejeeber]

1 hour ago, CHfather said:

It often stops the cluster period

Far be it for me to mince words with one of the world's leading CH experts, but I feel like "It occasionally stops the cluster period" might offer a more accurate idea of what the chances really are. 

If one of the world's leading CH experts has convincing hard statistics to back up that "often" claim though, I might have to back down. 

[jon019]

...yur stirring a semantics pot Jeebs....3 kinds of lies, ea progressively worse: lies, damn lies, and statistics. for me i was 1 out of 3 with a methylprednisolone iv/taper...so 33%. but the first time, it stopped a cycle MID FREAKING cycle. it was a miracle!!!!....and 100%. i'm guessing.... with COMPLETE confidence.... that the actual number is somewhere between 0 and 100%.....

[Bejeeber]

That must have been an occasion for 1,000 ecstatic victory laps when the pred taper actually ended all attacks mid cycle!!! I do gain that much more respect for the pred bursts when hearing of such a result.

And I suppose even 20% or so could be considered "often" in some contexts, but now strictly having fun with the nitpicking of semantics far beyond what should be considered reasonable, here's one gauge of what 'often' and other indefinite adverbs mean. Going by it, my guess is that prednisone stopping a cluster period occurs closer to rarely than to often:

FREQUENCY

Frequency refers to how often something is done. How often something is done can be described with indefinite adverbs and definite noun phrases. The most common indefinite adverbs are: always, usually, often, sometimes, rarely, and never.

 

 

Adverb	Frequency it represents
always	100 percent of the time (or almost 100%).
usually	about 80 percent of the time.
often	more than half of the time.
sometimes	less than half of the time.
rarely	about 20 percent of the time.
never	at no time.

[CHfather]

Parsing further, however, "stops the cluster period" doesn't necessarily mean ends the cluster period. It could just mean stops it temporarily, which is not uncommon though maybe even that doesn't happen "often" based on the definition provided.

It just so happens that the very "world's leading CH expert" that I mentioned, Dr. Goadsby, did a double-blind etc. etc. study of the effectiveness of the recommended prednisone taper. You can read about it here.  https://www.jwatch.org/na52979/2021/01/05/prednisone-transitional-treatment-episodic-cluster  

Having read that, you can explain to me what the heck it means.  It mentions some people "achieving attack freedom by 7 days," but not how many, and not whether anyone's cluster period was completely ended. Overall it seems (to me) that maybe most people got significant reductions in attacks but not complete freedom from attacks. Being able to read the whole thing and not just a synopsis would probably help.

And then there's this one, with a few hundred authors, that also says (I think) that pred reduced attacks but says nothing about eliminating them in the short run or fully ending the cycle.  https://pubmed.ncbi.nlm.nih.gov/33245858/   Although I see here again, in this discussion of this study (https://www.reliasmedia.com/articles/147514-prednisone-vs-placebo-in-short-term-prevention-of-episodic-cluster-headaches), the unclear statement "After seven days, cluster attacks had ceased in 35% of the prednisone group." -- which of course still fails to meet the provided description of "often," and still doesn't tell us whether that cessation was temporary or cycle-ending.

But I do remember, as others might, a crabby woman who wanted to take pred while she was pregnant and asked whether it would end her cycle.  She was told "might stop it temporarily but probably not end it," which was very irritating to her. She mustered the energy just a few days later to tell us we were idiots because it did end her cycle, long before she could possibly have known whether her cycle had ended or not. But I am nonetheless adding her to jon''s instance and declaring that to be often.

 

Edited July 26, 2022 by CHfather

[Bejeeber]

WHAT - [I'm now realizing I instigated] all this because I couldn't discern the difference between stop and end? Augghh  

As far as temporarily stopping attacks is concerned, my observations (and heavy bias from personal experience with I dunno, maybe 10 or so different pred bursts), says pred will usually stop attacks temporarily.

In my personal history, it has always temporarily stopped attacks.

Then often when the attacks return, they do so with a pent up vengeance (for me). 

[BoscoPiko]

[Bejeeber]

Oh come on @BoscoPiko, you'll be missing all the fun and exhilaration. 

 

[BoscoPiko]

1 hour ago, Bejeeber said:

Oh come on @BoscoPiko, you'll be missing all the fun and exhilaration. 

 

LOL I'm good Jeebs. I love you guys but I know when I'm out ranked Poor Titan was just looking for 4/hrs. of sleep and look at all this info he got! (I mean that admiringly) because even with a little bicker & banter the info is good! 

[Titan32]

25 minutes ago, BoscoPiko said:

LOL I'm good Jeebs. I love you guys but I know when I'm out ranked Poor Titan was just looking for 4/hrs. of sleep and look at all this info he got! (I mean that admiringly) because even with a little bicker & banter the info is good! 

Still haven’t been able to get more than 1.5 hours of sleep at a time but I’m loving the back and forth on this thread between everyone! 

[ThatHurtsMyHead]

I love my family...  All you guys and gals here.  I've been more away than here lately.  I just had to say I actually (like really) got a tear in my eye reading the thread.

Titan,  You have the rock stars of CH on with you!  You'll get some pain free time soon.  Keep hanging in there.  Sleep deprivation really sucks...

J

[spiny]

Titan, one thing that I found to help with my first attack of the evening was to have a cup of coffee before it arrived. That would hold off the first one. But, like you, once I hit the bed, the hit arrived in 10-15 minutes. Not even a lousy 45! Prone and sleep always kicked off a hit. 

Additionally, I found that when the cycle was winding down, I would still wake at the appointed' time with no hit! Most disturbing. The pattern took weeks to stop. I would just take a bathroom trip and go back to sleep. 

As for the Prednisone, it works for me until I go below 30mg/day. Three 10mg pills and I was golden. Two and I was not! That still holds to this day and it has been decades. Since you took the initiative to stop the injections except in desperate need, it seems like the cycle is winding down? Am I correct there? 

Training your brain to not wake at those CH dictated times might be helped by the use of Melatonin and Benadryl. As in take the Melatonin at bedtime. Not sure what your 'dose' is, but up to 25mg is considered safe. I took 30mg many nights before I learned that, so not sure why the limit, but feel that you should know. Anyway, take that 30 -45 minutes before bed. Then, when you wake later in the night, say after 4 hours, take Benadryl then for the sleepiness factor and the anti-allergy benefit. That helps me ditch the 4 wake up calls every night post cycle. In about a month I am free of those wake-ups. 

Your doctor gave you an injection of Dexamethasone, not a course of Pred, which is the norm for a Clusterhead. That would not have the same effect of Pred in pill form and taken over several days. So, just drop that med from consideration. A dose pack of Pred - taken for about 5-6 days in decreasing dosage each day may help a lot. Or a course of Pred over 2-3 weeks that has a taper at the end. You taper, not just stop this medication. I am pretty confident that you will be CH free in a day with Pred. But it is a double edged sword and always remember that! You use it judiciously and perhaps a dose pack 2-3 times a year and a long taper say twice a year. You want to avoid the necrosis it can cause and have your hips replaced from it. 

As for the D3 Regimen, year round is best. That way your body is prepared if your head decides 'Oh, lets have a cycle in January this year!'. Which it can do!! It is healthy and good for you. Additionally, I have seen some members who only take it a month before and during their cycle, forget to start it and the cycle now comes. Not good!!

Hope this helps a bit.

 

[Titan32]

12 hours ago, spiny said:

Since you took the initiative to stop the injections except in desperate need, it seems like the cycle is winding down? Am I correct there? 

Yes, the cycle is definitely coming to an end, this one just seems to be sticking around longer (which as I mentioned I think is a result of taking so many immitrex injections). But at least I'm down to one attack a day and generally they are becoming shorter and less severe. Although today I had a particularly bad one. I think I will ask my doctor for the 5-6 days of prednisone and as far as sleeping, I've been trying Benadryl and melatonin to see what works best for me, but still am struggling with getting more than a few hours at a time. I'm hopeful though that I'll one of these days I'll go to sleep and wake up 7-8 hours later. Maybe tomorrow for my birthday, fingers crossed!

[Bejeeber]

Happy Birthday @Titan32, and best wishes for a 7-8 hours of straight solid sleep night, as unusual as that might be for a typical clusterhead, whether in or out of cycle!

 

[Titan32]

18 hours ago, Bejeeber said:

Happy Birthday @Titan32, and best wishes for a 7-8 hours of straight solid sleep night, as unusual as that might be for a typical clusterhead, whether in or out of cycle!

 

Thank you! No headaches today! What a great birthday! And I used facebooks fundraising to raise $65 for cluster headaches research so far!