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bejeeber

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Off chronic cocktail/starting pred burst issue..?
Feb 2^nd, 2013 at 2:31pm

Woodawgy long time no post here for me - I've been mainly active over on the clusterbuster forum - so a large HIYA to my headbanger homeys here. Cool

One of our long time ch.com chronic CH'er pals is very unfortunately really having a rough go, and he can't even go on the computer without triggering an attack, so I figured I'd discuss his case here a bit.

He's experiencing some kind of high cycle from hell so in desperation he and his doc decided to try the the Veraapamil/Lithium "chronic cocktail" again (he'd had occasional success with it before). Well the side effects debilitated him and he was getting no relief, so they decided this last Thursday for him to go off it immediately and start a prednisone burst at 60 mg a day.

He's always gotten instant complete relief from a pred burst, but he started the pred Thurs night, here it is Saturday, and nothing. No relief, and none of the usual speedy side effects he gets either.

I started wondering aloud if the verap/lithium still working it's way out of his system could be delaying the onset of pred relief?

That's a shot in the dark alright, I have zero knowledge of these drug interactions, but thought I'd throw that out there and see what y'all think, and whether ya have any other ideas insight regarding what might be occurring here?

(He hasn't tried busting yet, and of course can't right now due to the meds)

Thanx.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Off chronic cocktail/starting pred burst issue..? Reply #1 - Feb 2^nd, 2013 at 2:42pm With everything that normally works not working, especially prednisione, it could be possible that something else is causing the change in behaviour. It is probably well worth getting this checked up by a headache specialist.
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bejeeber

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Re: Off chronic cocktail/starting pred burst issue..?
Reply #2 - Feb 2^nd, 2013 at 2:52pm

I shoulda mentioned that he is working with the preeminent LA headache specialist.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Guiseppi

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Re: Off chronic cocktail/starting pred burst issue..?
Reply #3 - Feb 2^nd, 2013 at 2:58pm

I had not heard of that beej. I use only lithium, and on occasion while in a high cycle have started up a 10-14 day pred taper, typically to get me through a major event, kids wedding, a vacation etc. It's never failed to halt the beast for me. Sadly that speaks only to the lithium and not the verapamil so not much help on any interactions there. Undecided

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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bejeeber

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Re: Off chronic cocktail/starting pred burst issue..?
Reply #4 - Feb 2^nd, 2013 at 3:53pm

Mike NZ wrote on Feb 2^nd, 2013 at 2:42pm:

..it could be possible that something else is causing the change in behaviour..

I think he's always suspected that his thyroid condition (Grave's) that he takes synthroid for can play havoc.

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« Last Edit: Feb 2^nd, 2013 at 3:53pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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LasVegas

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Re: Off chronic cocktail/starting pred burst issue..?
Reply #5 - Feb 2^nd, 2013 at 4:09pm

Bejeeber, you are a great supporter of this CH'er to post on his behalf. I enjoyed meeting you last sep at the ClusterBuster convention and hope you are doing well.

My only suggestion would be to suggest his headache specialist consider increasing the Pred dosage for immediate yet transitional relief.

But even if the Pred did start working at say a higher dosage of 80mg or 100mg to start the taper, then what is he to do about the Preventative treatment?

The Pred will eventually taper down and as you know should be used in conjunction with a preventative med/s.

Perhaps the "chronic cocktail" just needs some more time to kick in and this suggested increased dosage Pred taper might do the trick? Roll Eyes

Hope my 2 cents was helpful. Wink

-Gregg in Las Vegas

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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

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Batch

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Re: Off chronic cocktail/starting pred burst issue..?
Reply #6 - Feb 2^nd, 2013 at 5:55pm

Hey Bejeeber,

Your observation that your chronic CH'er pal's Graves' disease may be playing a role his present out of control high CH cycle is likely spot on.

Graves' disease is an autoimmune disorder where the thyroid goes postal and starts pumping out far more thyroid hormone than normal. This in turn sends calcium homeostasis into a tailspin. As calcium homeostasis and vitamin D3 metabolism are closely linked, your chronic CH'er pal is also very likely vitamin D3 deficient unless he's been taking vitamin D3 supplements.

I'd suggest he bypass his neuro and headache specialist and instead make a beeline Monday morning straight to his endocrinologist or the physician treating his Grave's.

When he gets there he needs to ask for a complete set of labs (endocrine panel, chemistry panel and complete CBC). The most import labs are for his 25(OH)D, calcium, and parathyroid (PTH) serum levels.

I'll wager a Coke & candy bar his 25(OH)D serum level has tanked. In other words he is likely vitamin D3 insufficient (20 to 32 ng/mL) and more likely deficient (<20 ng/mL).

If this is the case, your pal needs to start vitamin D3 therapy asap... and I'd suggest the complete anti-inflammatory regimen with 10,000 IU/day (or more) vitamin D3 plus 2000 mg/day Omega 3 fish oil and all the vitamin D3 cofactors: magnesium, zinc, boron, vitamin K2 and vitamin A all at RDA.

If your pal is vitamin D3 insufficient/deficient, he starts the anti-inflammatory regimen and stays on it, I'll double down on the bet that his present CH high cycle subsides and the frequency of his CH drops.

I base this wager on the results of data I've collected from over 300 CH'ers here at CH.com (and at least 20 from the Clusterbuster forum), who posted they started the anti-inflammatory regimen and included results of their 25(OH)D labs. Of the 300 CH'ers, 240 or 80%, reported they've experienced a significant reduction in frequency, severity and duration of their CH. 78% reported they experienced a 24 hour pain free response, and over 60% reported they've remained essentially pain free.

The following chart developed by Dr. Robert Heaney, MD, illustrates the time course 25(OH)D serum concentration response to vitamin D3 dose. I've overlaid the 25(OH)D lab data and response to this regimen collected from posts here at CH.com as color bands on this chart.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

The actual 25(OH)D serum concentrations for a therapeutic response fall in a range of 60 to 110 ng/mL. That makes the mean value of 85 ng/mL as a good target 25(OH)D serum concentration for you pal to shoot for with his vitamin D3 therapy.

In the mean time, all the chronic cocktail and pred burst will do is treat the symptoms...

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Feb 2^nd, 2013 at 5:57pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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bejeeber

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Re: Off chronic cocktail/starting pred burst issue..?
Reply #7 - Feb 2^nd, 2013 at 7:58pm

I received a text from him - he asked a pharmacist whether drug interactions could be preventing the pred from kicking in and the answer was no for the lithium and verapamil, but yes about the synthroid.

This is confusing because he's done 7 or more immediately effective pred bursts in the 30 + years he's had CH and been on synthroid that whole time.

Gregg I'll relay your mention of higher starting pred dose, and Batch I'll definitely pass along the stuff about endocrinologist, endocrine panel, etc. Thanks guys. Joe I shoulda known it wouldn't be the chronic cocktail interfering especially since it's such standard practice to start a pred burst and verap at the same time.

His doctor is talking about starting him on a drug monday that is used for SUNCT that he has found to also work for a couple of hard core CH'ers so far. It starts with an L....? It takes a couple weeks to kick in, hence the 18 day pred burst.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Off chronic cocktail/starting pred burst issue..? Reply #8 - Feb 2^nd, 2013 at 8:22pm Before changing meds again, sugget doing another Pred series but starting at 80 to 100mg. No uncommon for too low a starting dose to fail.
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bejeeber

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Re: Off chronic cocktail/starting pred burst issue..?
Reply #9 - Feb 4^th, 2013 at 2:11am

Thanks Bob - I've passed that info along too.

The latest development is that his doc thinks it's a bad batch of prednisone (there was still no relief, no sign of the usual pred side effects last night), and has had him get a replacement prescription.

Also I found out the long term preventative drug currently under consideration is Lamictal , an anti-seizure without the heavy side effects of Topamax.

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« Last Edit: Feb 4^th, 2013 at 2:17am by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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neuropath

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Re: Off chronic cocktail/starting pred burst issue..?
Reply #10 - Feb 4^th, 2013 at 3:21am

I am chronic and if ever I need a break in my 2 month high cycle and opt for a pred taper (I am on lithium throughout the year) I need to start at way more than 60mg to make a dent.

Generally I go for 2-3 IV treatments of 120mg and then stay on 100mg oral for 3 days thereafter before slowly tapering down. Often the beast comes back at 60mg.

At these dosages I recommend to take something for the stomach, taking pred with food in the morning and to buy a few books because insomnia is almost inevitable ( as is weight gain ).

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Callico

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Re: Off chronic cocktail/starting pred burst issue..?
Reply #11 - Feb 6^th, 2013 at 12:11pm

Several years ago I had to go off the Chronic Cocktail because of side effects. I found Kudzu to be very effective as a replacement. It gave the same relief as Verap and Lithium, but no side effects other than a little gas. There are a number of good threads on it in the Archives section. Don't know about any drug interactions, but don't think there would be any.

Jerry

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