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blacklab

Ex Member

6 months on and......
Dec 17^th, 2014 at 4:29am

Hi all, ive had a bit of a break from the forum of late, due to work and other commitments, and this damn beast which is testing my resolve....
basically, been on the regime for 1 1/2 years now, and the reduction of frequency and intensity was noticeable ! however I was still taking verapamil, only a lowish dose from what ive read here, but I always have been extremely responsive to and medication all my life. so may this year with things looking a lot better, I weaned off verapamil.
I was fine until a couple of months later, june, then I went into a full on cycle. the kip level didn't get much past 6 and it lasted for a good 3 weeks, normal cycle time.
So, decided to lift my nmol levels up a tad, spoke a fair bit with batch and my local doctor where I got tested, raised it up to about 240 nmol. thought all was good, but every month since then, the cycle rears its ugly head, 6 months to the day, and im just going into another cycle ! seems to be about once a month, for about 1-2 weeks.
I don't have O2, have the script to get it and have been tempted over the last few months, but, so far, every monthly occurance doesn't seem to get to the level, where I feel its needed.
firstly a week of shadows, then I get the first real hit, but nothing seems to go over a kip 3-4 ( touch wood so far )
the second strange thing, is that on onset of an attack, I skull a cold red bull, take a 50mg imigran pill, suffer for 15 minutes, then its gone. so far its starts between 4.00pm and 6.00 pm, if I don't take an imigran pill, they keep coming every 2 hours, right thru till early hours of the morning, but if I take that imigran pill at the first sign, then I don't get as much as a shadow till the same time the next day ! a couple of nights ago I tested the theory out, after about 4- 40 minute hits, each about kip 3-4, and the clock hitting 2.00 am, I gave up and took an imigran pill and crashed. I know from pre- regime days, only armed with prednisone, then verapamil and imigran pills, a full cycle involved multiple imagran pills daily and some serious kip 8-9 attacks. even though im only experiencing kip 3-4 during this cycle, its still damn draining !
over the journey since june, I think the gods have been getting their revenge as everything from a strained back, a first time severe dose of hay fever and a damn bladder infection have really tested my bodies immune system and bought on an episode of clusters ! but im still here Grin

so with the festive season arriving, a pending trip back to n.z for a week for xmas and six months and counting of the beast returning regularly I weakened and decided to introduce verapamil back into my preventative measures.
didn't want to have to do it, but simply have to try and break this monthly cycle ive been enduring.
ive kept my d3 levels around 240 nmol ( about 100ng) and all the other co factors, with the aim of trying to get back to a level of control I was at before weaning off verapamil in may. Im on day 4 of 180mg of verapamil, so im hoping before I fly out next sunday it might start taking some effect.
appologies for such a long winded post !
guess I really just wanted to vent a little and share the story of "the beast and me" as Ive learnt on here its so different for everyone..
For me, its continuing with Batch's regime, get verapamil into my system, then try to figure out that missing link that's needed for me to get pain free !
So, to all fellow cluster header's, wishing you all a safe and happy festive season, and don't forget to clean out that chimney and leave a wee treat for santa ! Wink

kindest regards
colin

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Bob Johnson

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"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: 6 months on and......
Reply #1 - Dec 17^th, 2014 at 5:06am

If I understand your correctlyl, you are on a one-month cycle pattern.

If so, suggest you stay on Verapamil continously, not breakig betwen the monthly break. If you start it at the first attack of a new cycle, you lose too much time before it can take effect. And there is no harm taking it 100% of the tiem.

Would work with your doc to increase the Veap. dose, also. (print the PDF file, below, and use it to discuss optons with the doc.)

Suggest that you consider the problem of using the D-vit program and imigran/verap at the same time. Two systems at the same time which have the same goal prevents you from know which of them is working (or not).

As an abortive imigran pill is the least effective for Cluster
Nasal is second best, injection best form. AND with any abortive don't delay before taking it at the FIRST sign of an attack; delay is a waste of $ and frustration for you.

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Bob Johnson

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Hoppy

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LAUGHTER IS THE BEST MEDICINE

Posts: 1890
Perth WA
Gender: male

Re: 6 months on and......
Reply #2 - Dec 17^th, 2014 at 4:19pm

G'day Colin,
Sorry to read your doing battle with the beast again. that
was me up until two years ago, every Spring and Autumn
same time morning and in the arvo. I too was on Imigran
tablets, and at the first inkling of an attack would wash
one down with a hot cup of coffee, it would take 10-15
minutes to kick in and by that time my CH had reached
a kip 8or9, and then the beut feeling of it fading away
until next time, but now I'm on the vitamin D3 remedy
not a sign of the beast so maybe shoot Batch a PM to
see if he has any clue to what's going on.

Cheers, Hoppy.

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« Last Edit: Dec 17^th, 2014 at 4:22pm by Hoppy »

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Don B

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Thesaurus ?

Posts: 104
Meriden, Ct.
Gender: male

Re: 6 months on and......
Reply #3 - Dec 17^th, 2014 at 6:25pm

Hey Hop....
you mention the "beaut feeling of the pain fading" I have suffered for years and as all here know UNBEARABLE. The last cycle seemed to be the worst. I found relief with oxygen, verapamil early in the cycle and D3 has done me very well. pf for almost 2 months now. thanks to all on the site for the support and a special thanks to Batch. This time around more than any other, I was at wits end emotionally and physically. all that said, because the pain was so extreme, I know it may sound crazy, but I miss that magic moment when the pain subsided so quickly, I could breathe freely and although exhausted from the bout, the relief was just as amazing. I know it sounds a bit crazy, but find myself wondering if anyone else felt this way

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: 6 months on and...... Reply #4 - Dec 17^th, 2014 at 10:31pm Don B wrote on Dec 17^th, 2014 at 6:25pm: ...I know it may sound crazy, but I miss that magic moment when the pain subsided so quickly...the relief was just as amazing.. I know that feeling exactly and had the perfect word to describe it, but when I used it Giuseppi threatened to bar me.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

blacklab

Ex Member

Re: 6 months on and......
Reply #5 - Dec 17^th, 2014 at 11:32pm

thanks for the replies guys.
Bob, thanks for your imput.
The problem I have, is the first neurologist I saw, put me on fast release verapamil, not a high dose, but after a month, my blood pressure was so low when I visited the doctors, they held me there for a few hours it was so low.
The current nuerologist, ( the old one refused to take me off fast release, said slow release didn't work ) put me straight on slow release verapamil and we played with the strength until I got to 270mg and I was back to square one ! we worked out that 240mg was as much as I could tolerate before my blood pressure plummeted. unfortunately, I still got my 3-4 monthly break through cycles, but admit that it slightly reduced their pain level and intensity. I stayed on 240 mg verapamil and started the vit d regime and while still getting break through cycles, they were every 6 months and on the scale would rarely go above kip 4-5. then I had a 4-6 month period with no cycles, just intense shadows every so often. that was when I decided to wean off verapamil completely in may, but less than 2 months after I did, bang ! then monthly cycles since then. there not full on kip 7-9 cycles, they only get to kip 3-4, but its just the consistant regularity and the strange change in my cycles that's happening since stopping verapamil.
my decision was to, as you said, go back on verapamil, currently 5 days of 180 mg, hold there and see if the pattern changes, but still knowing I can tolerate going up to 240 mg of verapomil and still function properly. The theory behind this and my local doctor is onside with my plan, is that it seems that both the vit d3 regime and verapamil seem to work together well in getting me to a reasonable level of pain free status. I know verapamil on its own doesn't do the job.
Im hearing you about the injectable and the nasal imitrex is faster acting, and ive asked the question to both my doctor and the local pharmacy and they've both said there not readily available here, im pretty sure if I pushed the issue I could get either, but, to be honest, the pills if taken at the first inkling of an onset of an attack, only take 10-15 minutes to kick in and because there only kip 3-4, its not to bad. so the vit regime is definitely lowering the intensity, I no longer get kip 8-9 cycles ( thank god !)
Batch has been brilliant, always there for advice and alternative things to try and ive even had a couple of Skype conversations with him ( thankyou batch) guess im just one of the unlucky ones it doesn't completely give me a pain free state !
and speaking of the devil ! its 3.00 pm here now, and as im typing, the damn beast is planning another surprise visit Angry

I just skulled an ice cold redbull and took an imigran pill.........
well, that took less than 5-6 minutes and killed it off ! maybe the verapamil is starting to help a bit. As mentioned, if I took nothing, they get to kip 3-4 and return every two hours right thru to the small hours, but now I should be pain free till the same time tomorrow, not a bad situation I suppose !
Hoppy, Hi, I know exactly what you mean of that moment when the imigran kicks in and the immense relief that follows, mind you I suppose that's the case for everyone with what ever method they use.
so hopefully, as the verapamil levels get fully into my system, I might get a change in the current cycle and hopefully break that monthly thing that's been happening for the last 6 months......

regards
colin

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blacklab

Ex Member

Re: 6 months on and......
Reply #6 - Dec 17^th, 2014 at 11:36pm

AussieBrian wrote on Dec 17^th, 2014 at 10:31pm:

Don B wrote on Dec 17^th, 2014 at 6:25pm:

...I know it may sound crazy, but I miss that magic moment when the pain subsided so quickly...the relief was just as amazing..

I know that feeling exactly and had the perfect word to describe it, but when I used it Giuseppi threatened to bar me.

LOL

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Batch

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Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: 6 months on and......
Reply #7 - Dec 18^th, 2014 at 12:52am

Don,

There's a good reason why you and many other CH'ers get that wonderful feeling when the CH pain finally drains away... It's caused by a cocktail of endorphins with a followup shooter of dopamine...

Endorphins are family of natural morphine derivatives produced by the central nervous system (CNS) and pituitary gland. They're the body's reaction to pain. Runners experience the same feeling and call it the "runners high."

Dopamine is a hormone and neurotransmitter. It's also produced by nerve cells. Dopamine is the body's "feel good" chemical that drug abusers experience in response to cocaine and other drugs... CH'ers experience the dopamine "feel good" sensations in response to endorphins...

I've watched a member of our forum battle a nasty hit with oxygen therapy. When the abort came and the pain drained away, she started giggling like she was getting tipsy then promptly fell asleep within a couple minutes.

Take care.

V/R, Batch

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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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Don B CH.com Veteran Offline What's another word for Thesaurus ? Posts: 104 Meriden, Ct. Gender:	Re: 6 months on and...... Reply #8 - Dec 18^th, 2014 at 5:39am thanks Batch I knew I could count on you for a clinical explaination. Also, good to know that it is not because I enjoy pain. The cycle consumed me and truly made me into someone I didn't recognize. While I don't recall giggling once the pain abated, I can certainly understand it. the relief was euphoric
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: 6 months on and...... Reply #9 - Dec 18^th, 2014 at 5:24pm G'day Batch, I used to wonder about the falling asleep bit after an attack. I remember when I was on the road and the beast would pay me his afternoon visit, I would pull over to the side of the road take a migral, then when the pain started to subside, at times I would wake up about an hour later. Hoppy.
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