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Hello Again! (Read 2187 times)
Ed Ardzinski
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Hello Again!
Jan 21st, 2014 at 6:50pm
 
I used to be a member of the old board (I think) about a decade ago (I was Edski_1 I think)...

Well, a new "super-cycle" for me seems to be here.  From my past experiences it seems my cycle runs approximately like this:

1) A few years of on/off CH's with active and remission periods on the order of 3-4 months.

2) A few years of sporadic CH episodes that are not nearly as brutal as the initial phase

3) A few years of almost complete remission.

The last "super-cycle" started in late 2003.  I kept some detailed logs for a couple of the early CH periods, and all it seemed to do was allow me to create some scary graphs showing how the frequency and intensity peaked.  Essentially I could not find any consistent triggers, although it does seem at least at the outset of my super-cycle alcohol is a definite trigger...

I remember when I started my new job in early 2006 I was concerned that the CH's would be an issue, but I only had a mild episode later that year, where the HA's shifted to almost exclusively nocturnal.  About 2 years later I recall having a minor episode around the time of the baseball playoffs, and another minor episode in the summer of 2010 (again baseball is my milepost - I remember watching Matt Garza of the Tampa Bay Rays throw a no-hitter while battling a CH through inning 4 through 8.  Just had to keep watching...).

And then my few years of almost complete remission.  Few shadows here and there, maybe a day with what I call a "low grade" cluster (more like a minor migraine) here and there, but nothing like the pain I've had the last week and a half...

Tried Topomax abut a decade ago, but while it was effective stopping the headaches, it also removed my intellect.  And if I missed a dose I'd become psychologically "unstable".  I had to stop - those side effects were unacceptable.  I'd rely on using an occasional triptan, and eventually just an ice pack...my view on triptans is what is the use of having 6 pills a month when these things are coming at you every 15 hours?

In the time I've been gone from here 2 nephews have come down with CH's (one is blood related, the other via marriage), and both have had success with verapamil.  I go see my doctor Thursday morning to discuss this, and I think I will demand to start trying that medicine.

I do have essential hypertension, and I wonder why the neuro I saw 10 years ago chose dopeymax over vera, especially given my BP history.  Of course, that was not too long (a couple years) after I finally made a good faith effort to find a combination of meds to control my BP.  That was not a pleasant journey, and maybe the concern was not to upset the combination that worked for me with no side effects.  What I've heard now is that vera probably won't hurt my current BP regime.  I suppose I'll ask about that in another part of the forum instead of here.

Anyway, I think I see a couple familiar handles despite the long time away.  I guess it's "welcome back".  Wink
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Bob Johnson
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Re: Hello Again!
Reply #1 - Jan 21st, 2014 at 9:34pm
 
Need to catch up on current theapies. Prin the PDF file, below, and use it to discuss uptions with the doc.
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

Bob Johnson
 
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Ed Ardzinski
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Re: Hello Again!
Reply #2 - Jan 21st, 2014 at 10:46pm
 
Thanks Bob!

You are one of the names I remember.
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Guiseppi
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Re: Hello Again!
Reply #3 - Jan 22nd, 2014 at 9:42pm
 
Check out the newest and greatest around here, follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days


Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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wimsey1
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Re: Hello Again!
Reply #4 - Jan 23rd, 2014 at 8:27am
 
What Bob and Joe said! You need to ditch those pills (you have if I read correctly) and trade them in for high flow O2, energy drinks, and injectables. The abortives are necessary for those times when our prevents aren't working, or we're getting used to them. blessings. lance
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Ed Ardzinski
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Re: Hello Again!
Reply #5 - Jan 23rd, 2014 at 2:52pm
 
Well, I do need to control my BP.  Without meds it'll go to the 180/100 range  Shocked  This was true when I weighed 30 pounds less and was working out A LOT.  I still exercise regularly, and have lost 30 pounds in the last year...today my BP was 110/70.

We're switched one of my BP meds to Verapamil.  This vitamin regime looks exciting.  Since it is new to me, and of course I did not look at it before my appointment, I don't have lab orders that are suggested...but it seems rather harmless.

Also seems if the vera works well with the other med I take there's no harm, especially if it provides extra prophy for the CH beast...

Yeah, starting to feel like I should have never left here.  Cheesy
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Batch
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Re: Hello Again!
Reply #6 - Jan 23rd, 2014 at 9:29pm
 
Hey Ed,

I think you'll find the links on the following VitaminDWiki web page interesting if not outright compelling with respect to taking vitamin D3 and the vitamin D3 cofactors as a safe and healthy method of controlling hypertension.

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The anti-inflammatory regimen of nutrients is better than 80% effective in preventing CH... One of it's many healthy side effects is improved cardiovascular health...

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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Ed Ardzinski
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Re: Hello Again!
Reply #7 - Jan 24th, 2014 at 8:13am
 
It would seem that since I take a calcium channel blocker for BP I'm contra-indicated for taking a Ca supplement.  But I'm going to try taking D3 and fish oil.  Seems like it can't do any harm.

I did switch the norvasc for vera yesterday, and started a methyl prednisone taper. My head feels "different" today - a vague lightheadedness, and a few little stabs of pain, but nothing like even the last couple days, which were far better than the previous few, but still had distinct shadows.

I suppose I won't be able to help the D3 regiment survey the way I jumped into it.  Sorry...  Embarrassed
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Batch
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Control The Beast With
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Re: Hello Again!
Reply #8 - Jan 24th, 2014 at 10:02am
 
Hey Ed,

Thanks for the update and glad to hear there's been an improvement in your CH... Good move on skipping the calcium supplement to give verapamil a chance to work.

At this point, the survey is the last thing to worry about... Make sure you're taking at least 400 mg/day magnesium.  It is one of the most important vitamin D3 cofactors as it takes part in the enzymatic reactions that metabolize vitamin D3 to 25(OH)D and on to 1,25(OH)2D3, the active hormonal form of vitamin D3.  Zinc and a little vitamin A (retinol) also play key roles in this regimen.

Take care and thanks again for the update.

V/R, Batch
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« Last Edit: Jan 24th, 2014 at 10:03am 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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