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FrankF

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Not New, But Introducing Myself Again
Jul 27^th, 2013 at 2:42pm

I have been pain free about four years, but I am afraid the monster is coming back. Sad

I got hit four times this week, not bad (only up to Kip 4-5) but that is how the cycle always starts out.

I have been reading about "D3". This is new since I was here. How well does it work and where can I find out more about it? Have relied on O2, verapamil and Imitrex injections in the past.

Also, I have 35 vials of Imitrex expired 09/25/10. I know potency may diminished somewhat, but will it kill me if I use it? Hate to throw it out.

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« Last Edit: Jul 27^th, 2013 at 2:44pm by FrankF »

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Not New, But Introducing Myself Again Reply #1 - Jul 27^th, 2013 at 11:36pm G'day Frank, Welcome back. On your ? about the D3 Regime, you can find all the answers by clicking onto, Medications, Treatments, Therapies, on the main board. Then click onto 123 days PF and i think i know why, (BATCH). Your ? about the imitrex. I would check the use by date before i used it. Hoppy. ,
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FrankF

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Re: Not New, But Introducing Myself Again
Reply #2 - Aug 2^nd, 2013 at 6:13pm

I started with the D3 treatment today and also saw my doctor who gave me O2, verapamil and Imitrex injections.

When I asked him about D3 he agreed it might help and scheduled me for a 25(OH)D check. I also asked about the fish oil part of the treatment which he sort of went off on a rant and said I should not use fish oil cause it can cause prostrate cancer.

I looked it up when I got home and found a lot of articles saying the recent fish oil scare is crap. So I guess I will continue with it until I hear better.

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Guiseppi

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Re: Not New, But Introducing Myself Again
Reply #3 - Aug 2^nd, 2013 at 6:47pm

Batch, one of our resident research gurus, posted a great thesis on the fish oil/prostate cancer link, give it a read it should put your mind at ease:

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

or

D-3 is the BOMB! 3.5 years pain free and counting. Hope it works as well for you.

Joe

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

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RichardN CH.com Hall of Famer Offline Posts: 963 x1\|Crossville\|USA,Tn Gender:	Re: Not New, But Introducing Myself Again Reply #4 - Aug 2^nd, 2013 at 9:15pm Ditto to what Joe said. Now pain free for 19 months after ten years chronic. Be Safe, PFDANs Richard
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FrankF CH.com Alumnus Offline Posts: 397 Simi Valley, CA, USA Gender:	Re: Not New, But Introducing Myself Again Reply #5 - Aug 3^rd, 2013 at 8:03am Thanks all, I will give it a go and let you know how it works. My project for today is getting O2 delivered. My PCP office didn't have a clue how to order an O2 script so I had to give them the number to call Apria.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Not New, But Introducing Myself Again Reply #6 - Aug 3^rd, 2013 at 10:17am Proper Wording for Prescription Oxygen @ flow rate of 12-15 liters/minute with a non-rebreather mask, as required. "AS NEEDED FOR CLUSTER HEADACHES." From the 02 link, this should be all APRIA needs. I used APRIA here in San Diego and they've been great. Joe
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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: Not New, But Introducing Myself Again Reply #7 - Aug 18^th, 2013 at 2:00am Hiya Frank, I remember you from 10 years ago. We shared a head injury in common. Think yours was with a car and 2 palm trees if I recall? Hope the D3 and O2 are working for you. If I can help in anyway, let me know pal -Gregg in Las Vegas
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maz

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Re: Not New, But Introducing Myself Again
Reply #8 - Aug 18^th, 2013 at 3:24am

I know in USA imitrex is expensive, so I would agree it would be a shame to throw it away. The best thing is to ask a pharmacist. If it's just reduced potency then it would be worth using but I don't know if it goes bad. I have used other expired medication for various things and it works fine, but unfortunately my imitrex never gets the chance to expire.

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FrankF CH.com Alumnus Offline Posts: 397 Simi Valley, CA, USA Gender:	Re: Not New, But Introducing Myself Again Reply #9 - Aug 18^th, 2013 at 9:45am Hi Gregg, your memory is pretty good after ten years. It was my wife who has the brain injury, but the car and two palm trees is accurate. I expect the O2 will work fine if I ever get it (having trouble with the prescription this time).
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LasVegas

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Re: Not New, But Introducing Myself Again
Reply #10 - Aug 19^th, 2013 at 12:55am

FrankF wrote on Aug 18^th, 2013 at 9:45am:

Hi Gregg, your memory is pretty good after ten years. It was my wife who has the brain injury, but the car and two palm trees is accurate.

I expect the O2 will work fine if I ever get it (having trouble with the prescription this time).

Hi Frank,
Some things I remember pretty good, but quite alot I don't as I was in a coma 7 years ago that seriously game me a case of amnesia. Strange how I would remember the car and 2 palm trees though.

Sorry to read your back after a long remission. I had a 6 yr remission myself and my last cycle the beast made up for lost time.

As for the o2, might consider welders o2 until you get your script straightened out and the D3 regimen is working for many who are diligently following protocol. Redbulls have proven to be helpful as a quick pinch. Not happy to read you are here in pain, but am glad to see you still around after all these years. PF Wishes Wink

-Gregg in Las Vegas

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FrankF

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Re: Not New, But Introducing Myself Again
Reply #11 - Sep 5^th, 2013 at 11:00pm

Sorry, just ranting. Verapamil isn't working (appointment to see the neuro again is in 10 days). D3 isn't working despite 20,000 IU per day and loading dose 50,000 IU per week... been doing it for two weeks (10,000 IU D3 for two weeks before that) . I keep getting hit every night around dinner, and again after I fall asleep. My O2 ran out last night... but received more today (but that didn't help me last night). My son's 22 Y-O birthday is today and I had to leave the party early because I got hit before the T-bone steak & baked potato dinner was ready. This really sucks!

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« Last Edit: Sep 5^th, 2013 at 11:15pm by FrankF »

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LasVegas

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Re: Not New, But Introducing Myself Again
Reply #12 - Sep 6^th, 2013 at 12:48am

FrankF wrote on Sep 5^th, 2013 at 11:00pm:

Sorry, just ranting. Verapamil isn't working (appointment to see the neuro again is in 10 days). D3 isn't working despite 20,000 IU per day and loading dose 50,000 IU per week... been doing it for two weeks (10,000 IU D3 for two weeks before that) . I keep getting hit every night around dinner, and again after I fall asleep. My O2 ran out last night... but received more today (but that didn't help me last night). My son's 22 Y-O birthday is today and I had to leave the party early because I got hit before the T-bone steak & baked potato dinner was ready. This really sucks!

Hi Frank,
That does suck! I advise calling your doctors office and asking if they can call in a Verapamil increase for you. Immediate release form is noted by many as more effective opposed to the sustained release form of Verapamil. Maybe start a Prednisone taper while the Verapamil is titrating blood levels?

Don't give up with the D3 at 20,000 iu/daily with weekly loading dose of 50,000 iu...as your D3 levels are most likely very deficient/low. Make an appointment to get your D3 tested yet?

The anti inflammatory regimen takes a while sometimes and sometimes your D3 levels are in the "green zone" but you are lacking the necessary cofactors. So don;t forget to diligently take all of this with your largest meal of the day for best absorption. Cofactors include Omega 3 fish oil, Calcium Citrate, Magnesium citrate.

No o2? Got Imitrex injections or nasal sprays? If not, have your doctor's office call that in to the pharmacy also. It could be along weekend without all that. You hopefully are able to pick up o2 tomorrow (Friday) before the weekend starts and everybody is closed until Monday.

Remember Redbulls or Rockstars, Monster energy drinks, etc are also very helpful when slammed fast at onset of attack.

Don't forget trying Melatonin before bed to help reduce the night time attacks. Pain Free wishes to you Frank Wink

-Gregg in Las Vegas

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BarbaraD

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Hugs to ya

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Re: Not New, But Introducing Myself Again
Reply #13 - Sep 6^th, 2013 at 7:16am

And the Melatonin (I take 10 mg at night before bed but have been up to 20mg when I'm getting hit big time). It takes a while to get in your system to keep it up for a couple of weeks before you say it's not working. It DOES get you thru the REM sleep where the CH hits.

Hope you get some PF time soon. And listen to Batch on the D3. He's done lots of research on it and knows from where he speaks.. Kiss

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What don't kill ya, Makes ya stronger!

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FrankF

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Re: Not New, But Introducing Myself Again
Reply #14 - Sep 6^th, 2013 at 8:19pm

I am feeling a little better today since getting the O2 supply replenished, and will PM Batch to see what I can do to help the D3 work better. Also will get a bottle of melatonin tomorrrow.

I am trying to not use the Imitrex injections if I don't have to because I feel they are causing rebound headaches. The rebound headaches are different though... the pain is in the upper part of my nose and and right temple... but is different from the really bad cluster pain which is in and behind my right eye.

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« Last Edit: Sep 6^th, 2013 at 8:24pm by FrankF »

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FrankF CH.com Alumnus Offline Posts: 397 Simi Valley, CA, USA Gender:	Re: Not New, But Introducing Myself Again Reply #15 - Sep 15^th, 2013 at 12:40pm One day pain free... yippee! Not a big deal, but not having to resort to O2 or injections for a whole 24 hours... I just had to tell somebody.
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metrolamar CH.com Junior Offline This will get better Posts: 47 Georgia Gender:	Re: Not New, But Introducing Myself Again Reply #16 - Sep 15^th, 2013 at 1:28pm That's a huge deal Frank....Congrats!!! I cant wait until I can make a poste like this. I hope the beast stays away forever. Good for you
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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: Not New, But Introducing Myself Again Reply #17 - Sep 15^th, 2013 at 2:51pm FrankF wrote on Sep 15^th, 2013 at 12:40pm: One day pain free... yippee! Not a big deal, but not having to resort to O2 or injections for a whole 24 hours... I just had to tell somebody. Wow! That IS a BIG deal Enjoy your PF time -Gregg in Las Vegas
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Not New, But Introducing Myself Again Reply #18 - Sep 15^th, 2013 at 6:04pm Pain free days are a beautiful thing...SHOUT IT FROM THE ROOFTOPS!! Joe
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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Not New, But Introducing Myself Again Reply #19 - Sep 16^th, 2013 at 2:18am And hoping that tomorrow you're shouting out "two days pain free"!
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theAnthonyCarter

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Got Imitrex?

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Victoria, Virginia
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Re: Not New, But Introducing Myself Again
Reply #20 - Oct 15^th, 2013 at 7:24am

FrankF wrote on Jul 27^th, 2013 at 2:42pm:

Also, I have 35 vials of Imitrex expired 09/25/10. I know potency may diminished somewhat, but will it kill me if I use it? Hate to throw it out.

My cluster cycles skip years between, so I go up to 3 years pf. In many cases, I have some Imitrex shots leftover from the abrupt end to the previous cycle. Now, I'm not a doctor, obviously. However, from the research I did on the subject of Imitrex expiration, I found that the stuff supposedly only loses it's "potency," and thus has the expiration date. That, and so the manufacturer can make some more money, I have little doubt.

With that being said, and given how my cycles leave me with leftovers often, I can say that, yes, I have used my fair share of "out-of-date" Imitrex without issue. And, surprisingly or not-so-surprisingly, it still did the job quite well. Like you, I simply didn't want to waste that stuff as it is literally worth its weight in gold.

Pf wishes, bud.

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Not New, But Introducing Myself Again Reply #21 - Oct 15^th, 2013 at 7:46am Mike NZ wrote. And hoping that tomorrow you're shouting out "two days pain free"! Ditto to that.
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FrankF CH.com Alumnus Offline Posts: 397 Simi Valley, CA, USA Gender:	Re: Not New, But Introducing Myself Again Reply #22 - Oct 20^th, 2013 at 8:12am Yay! I had another day PF.
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