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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> It's working: no nocturnal attacks
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Message started by shooky on Aug 19th, 2014 at 4:37pm

Title: It's working: no nocturnal attacks
Post by shooky on Aug 19th, 2014 at 4:37pm
After experimenting a little, than a little more, I can say with confidence this is really working for me: the combination of Amitriptyline and Melatonin prevents most of my nocturnal attacks.

I found it during my last cycle. Recently, after a series of health problems that seem to have waken the beast up (I'm chronic), I tried it again with great success.

I use 10-20mg of Amitriptyline (Elavil/Elatrol) + 3-5mg of Melatonin, taken up to 2 hours before sleep.

During my cycle I used higher doses of melatonin (5-10mg) with 10mg of Amitriptyline.

Note that neither had been so effective by itself, in any dosage - only the combination does the trick.

Title: Re: It's working: no nocturnal attacks
Post by Batch on Aug 19th, 2014 at 7:09pm
Shooky,

Have you given up on the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 plus all the cofactors? 

When I last checked, you reported a 25(OH)D serum concentration of 67 ng/mL...  That is still too low to have a therapeutic effect in preventing your CH...

Regarding Amitriptyline...  The data on the most common adverse events directly attributed to Amitryptyline submitted to the FDA might be worth a second look;

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Vitamin D3 and the rest of the anti-inflammatory regimen are exceptionally safe in comparison... No deaths reported.

V/R, Batch

Title: Re: It's working: no nocturnal attacks
Post by feisty on Aug 19th, 2014 at 10:46pm
Shooky, that is so fantastic!

Based on Batch's post above, I'm wondering if your D3 level is just nudged you up to where the medication/melatonin is working, but just below where the supplement regime would work by itself? I think it would be worth getting your D3 up a bit higher into the therapeutic zone to see if that works?

Title: Re: It's working: no nocturnal attacks
Post by shooky on Aug 22nd, 2014 at 6:17am
Haven't given up the regimen at all. Let me explain.

My last cycle ended some 8 month ago and the next one was not supposed to happen until late December (following a pattern my cycles had for the past 5 years). So I'm on a maintenance dose and did not have my 25(OH)D checked lately. 

Until I do, and since it looks like I'm starting a "surprise cycle", I tried my best to prevent the nocturnal attacks (for daytime attacks I have O2).

Note that the attacks I'm getting are very similar to those I got on my previous cycle - reduced intensity, evolving rather slowly, easily aborted. So I'm not 100% PF but the regimen DOES work for me. Think 80% reduction in triptan use and even in energy drink consumption.

I also take Amitriptyline for several month now, for a chronic neuropathic pain on the other side of my face. It was almost as horrible as CH for a while, really frightening and debilitating. A small dose of Amitriptyline helped me almost right away, and I'm taking it since.

I made my own research and consulted several doctors about this. Amitriptyline is in use for over 6 decades. It is considered extremely safe in daily doses of up to 300mg. I'm using only 10-20mg.

Like others here, I already used it in the past in larger doses as a preventative, with little success. For the past 4 years I was also using Melatonin in large doses with decent success (nocturnal hits became less violent). 

So I had both and during my last cycle (a few day after getting the 67ng/ml results) I tried combining them. At that point  I had 2-3 of these reduced intensity hits every night. Not too painful but it did mess up my sleep and empty my O2 tank incredibly fast. It changed over night when I added 10mg of Amitriptyline to the Melatonin I took before sleep. After a few other PF nights my daytime hits gradually stopped and the cycle ended.

I was surprised - didn't believe my luck - that such a small dose even made a difference. I suspected a coincidence - maybe it was just the end of the cycle? Maybe it was my 25(oh)d just reaching the sweet spot? So I tried the combination and it worked. 

Maybe it works just because I'm also somewhere on the upper end of the 25(OH)D scale. And if so, maybe it's an option for the 20-25% that don't get a noticeable relief from the regimen. I think it might also be used as a transitional treatment until you build enough D3 using the regimen.

Title: Re: It's working: no nocturnal attacks
Post by thierry on Aug 22nd, 2014 at 1:35pm
Hey Shooky, it sounds like you could do with loading the D3 for a while. I am also taking the regimen but got pretty strong shadows about 2 months ago. I took 50000 iu D3/day for a couple of days followed by another couple of days at 40000iu/day which were then folowed by a couple of weeks at 20000iu/day. The shadows disapeared pretty quickly and haven't returned. This might work for you.
All the best

Title: Re: It's working: no nocturnal attacks
Post by shooky on Aug 22nd, 2014 at 1:52pm
Already took a 50K IU loading dose and upped my daily D3 intake to 20,000 IU. In a few days I believe I'll take a new test  and will soon know where I stand. It's reasonable to think my D3 dropped because I've been a bit sick lately.

Anyhow, I'm not as lucky with the regimen as others - didn't get PF in a few days and not even when I got to 70-75ng/ml. So I aim to 85 this time.

Title: Re: It's working: no nocturnal attacks
Post by Batch on Aug 22nd, 2014 at 3:42pm
Shooky,

Good plan...  Don't be afraid to shoot for an even higher serum concentration of 25(OH)D if needed.  We've several chronic CH'ers maintaining their 25(OH)D above 100 ng/mL under a physician's supervision with no problems noted.

Take care and please keep us posted,

V/R, Batch

Title: Re: It's working: no nocturnal attacks
Post by shooky on Aug 22nd, 2014 at 8:13pm
Thank you Batch. Sure I will.

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