Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Pages: 1 ... 91 92 93 94 95 ... 107
Send Topic Print
123 Days PF And I Think I know Why (Read 532523 times)
slacker032
CH.com Old Timer
****
Offline




Posts: 325
Los Angeles, CA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2300 - Oct 4th, 2015 at 5:03pm
 
Batch:

Forgot to mention that I have been drinking a baking soda tonic 3 times/day.  I'll add one more. 

I am not taking any other medications, nor do I have any other ailments.  My last physical was 3 months ago.

I've got a 25(OH)D test scheduled for Friday. 


This is my current regimen:

D3 20,000 IU - Nature's Bounty

Fish Oil 2400 mg - Kirkland

MgCO3 500 mg  - NOW Foods (was using Kirkland but it seems to be discontinued)

Vitamin C 1000 mg - Kirkland (4 times/day)

Mature Multi Vitamin - Kirkland

Zinc 15 mg - Nature Made Vitamelts

Super K with Advanced K2 Complex - Life Extension

Baking soda tonic - 3 times/day

Benadryl 50 mg


Back on Sept 12, I started taking a loading dose of 200,000 IU D3 (50,000 IU for 2 days & 25,000 IU for 4 days) because I felt some shadows.

Also took B-50 Complex for 90 days from 2/3 through 5/2. 


After that loading dose on 9/12, the shadows were gone.  But then I got hit out of the blue with a KIP 6 on 9/28 and it's been downhill from there.

Not sure I've ever experienced something like this.  It usually ramps up.

Back to top
« Last Edit: Oct 4th, 2015 at 5:15pm by slacker032 »  
 
IP Logged
 
Sean McE
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 143
Seattle, Wa
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2301 - Oct 5th, 2015 at 1:16am
 
Hi Slacker,                                                                                                                                                     Hang in there with that D3 regimen, It took me 3 weeks this last May to get any response from the anti-inflammatory regimen and even then had my ups and downs. Oxygen
and imitrex were life savers this summer but now the only thing I'm taking is the vitamin regimen.   Even when it seemed like it wasn't working, my ch's were actually much milder.

                            Sean
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3708
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2302 - Oct 5th, 2015 at 1:36am
 
Slacker,

Good on you for not slacking off... You're taking everything I've taken so it's likely just a matter of time before you build up a therapeutic level of 25(OH)D.

Do you still have oxygen handy?  My original intent is developing the anti-inflammatory regimen was to improve (shorten) my abort times with oxygen therapy... 

It worked...  I haven't needed oxygen therapy since October 2010... except during burn-down tests of my 25(OH)D where I stop taking vitamin D3 until I get hit... I do this a couple times a year... The average is around a week before the beast jumps ugly...  one or two days when the pollen count is high...

Take care and please keep us posted.

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
blacklab
Ex Member



Re: 123 Days PF And I Think I know Why
Reply #2303 - Oct 5th, 2015 at 4:05am
 
Hi Batch,  Hope you and your family are well !
Well, Spring has sprung and down under the pollen is everywhere, especially round my house !  big time !
So, started to feel a few shadows come a calling, so it was a great time to test out the benedryl. chemists I went to all keep it behind the counter and all but want to know your medical history before they sell it to you. Had a fairly heated argument with a 21 year old newby chemist, who seemed to be an expert on all medical conditions, I recon your getting the picture, my last visit there, they wouldn't fill my imigran prescription without a letter from my doctor ! luckily I rang her there and then and I think the conversation went some way like,  " I diagnose, I write the prescription, you dispense it, He's been getting the same prescription for 2 years now its on your records !!!
I had a wee chuckle while the girl was getting a blast from my doctor on my phone   LOL
Anyway, could only get the liquid variety with diphenhydramine, which said a maximum of 40 ml per day, first day took 10 ml 4 times during the day, It didn't really make a difference, So the next 2 days I just took 30 ml at night before bed and I must say, had my 2 best nights sleep in a long while.
Starting to think that I have always suffered from sinus/ hay fever type inflammation, some nights I would have to get up because my passages were so blocked, it would wake me up from a dead sleep.  Well it sure did open the passageways that's for sure.  I'll keep dosing up at nights while everything Is in flower and see how I go.  I've been off verapamil now for some months, so I'm stand alone on the regime and the only hint of a cluster comes when I'm up all hours watching sport, sleep interruption or deprivation is an immediate trigger for me.
  ( still cant bring myself to try a beer yet)
Anyway, I'll let you know how I go thru spring, but so far, a big thumbs up   Wink

cheers
colin
Back to top
« Last Edit: Oct 5th, 2015 at 4:07am by N/A »  
 
IP Logged
 
Peter510
CH.com Alumnus
***
Offline


Don't give out... But
don't give in.


Posts: 966
Wexford. Ireland
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2304 - Oct 5th, 2015 at 6:32am
 
Hey Colin,

You're right...stay off the beer. I had one small beer last October while in Rome and was up all night dancing with the Beast. I had been doing really well up to that. Not worth the risk.

I get my Diphenhydramine on EBay. You should try there. The brand I get is SANDOZ. I get 2 x 100 capsules x 50mg capsules.  Last for ages. It was the only place I could get it as you just can't buy it in Ireland.

Keep well,

Peter.
Back to top
  

You don't stop laughing because you grow old....You grow old because you stop laughing.
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3708
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2305 - Oct 5th, 2015 at 10:18am
 
Colin,

Thanks for the update and glad to hear you've had a couple PF night's sleep.  It's amazing how much better you feel when that happens.

Have you tried ordering Benadryl (Diphenhydramine) over the Internet as Peter suggested?

Regarding beer...  Alcohol in any form has never been a trigger for me...  That said, once you've taken enough vitamin D3 to elevate your 25(OH)D up around 80 ng/mL, (200 nmol/L) and you've been PF for a month or two...  A beer test is in order... if for no other reason than to build confidence that you're in control and not the beast...

Take care and please keep us posted.

V/R, Batch
Back to top
« Last Edit: Oct 5th, 2015 at 10:19am 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
pete_batcheller  
IP Logged
 
Peter510
CH.com Alumnus
***
Offline


Don't give out... But
don't give in.


Posts: 966
Wexford. Ireland
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2306 - Oct 5th, 2015 at 11:54am
 
Hey Batch,

Not sure about the beer. Going on holiday on 19th. I'll let you know if I give it a try.

Hope you're well.

Peter.
Back to top
  

You don't stop laughing because you grow old....You grow old because you stop laughing.
 
IP Logged
 
slacker032
CH.com Old Timer
****
Offline




Posts: 325
Los Angeles, CA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2307 - Oct 5th, 2015 at 5:03pm
 
Batch -

Yup, I still use oxygen.  Luckily, these hits have been pretty easy to abort with O2 besides a KIP 9 this morning that I just couldn't shake.  Think I caught it too late.


Sean -

Oh, I'm definitely continuing this regimen since I've had great success with it in the past.  Just need to wait for those 25(OH)D results to see if I need another loading dose.
Back to top
« Last Edit: Oct 5th, 2015 at 5:04pm by slacker032 »  
 
IP Logged
 
Adelira
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 7
Michigan
Gender: female
Re: 123 Days PF And I Think I know Why
Reply #2308 - Oct 5th, 2015 at 7:26pm
 
Is chelated magnesium appropriate to use and how long until this should begin preventing ch? Is there an amount of time that is typical?
Back to top
  
 
IP Logged
 
blacklab
Ex Member



Re: 123 Days PF And I Think I know Why
Reply #2309 - Oct 5th, 2015 at 10:37pm
 
Hi Peter And Batch,   thanks for the advice I'll check it out on the internet for the pill version.  Took another 30 ml last nite and same result, great nights sleep, no morning shadow.  I'm experiencing a good relative pain free time at the minute, I'm due to get another blood test soon, but I'm expecting to be the same, between 200-220 nmol.
I sit here at the moment, 35 deg celcius out side, 40 mph winds and my nose is running, eyes are itchy as hell, I'm figuring its the pollen in the air. I'll continue for a week or so with my Benadryl as it seems to be working well.
I'm pretty happy with things at the minute, I've had a great run over the last 4-5 months, with nothing more than a few shadows when I don't get my sleep right !
I can live with things as they are, with no issues   Smiley
As far as the beer goes Batch, I'm with Peter on this one !!!
I understand why you do the occasional burn down of the regime,  but for me, the pure fear of a reaction stops me from trying, the more things improve and the longer I go pain free,  seems to make me more inclined to leave the stuff alone   Grin
Thanks for the advice about the Benadryl online, I'll go have a wee look now....
cheers guys
colin
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3708
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2310 - Oct 5th, 2015 at 11:46pm
 
Adelira,

Chelated magnesium will work just fine.  Regarding response times to this regimen... they basically depend on the starting serum concentration of 25(OH)D.  Have you seen your PCP for this lab test?

The following chart is based on data from the online survey of 156 CH'ers taking this regimen to prevent their CH.  As you can see, the majority of CH'ers start responding in the first 10 days...

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

Take care and please keep us posted.

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
slacker032
CH.com Old Timer
****
Offline




Posts: 325
Los Angeles, CA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2311 - Oct 5th, 2015 at 11:59pm
 
Batch -

Quick question about the O2 technique you taught me awhile back via email:

You instructed me to do 10 cycles of inhale/exhale of room air for 30 seconds then a big inhale of pure O2 which I should hold for 30 seconds.

Firstly, is this still the best method?

Secondly, when you said to repeat until the pain is gone, did you mean the whole sequence (including the room air part) or just the holding pure O2 for 30 seconds part? 
Back to top
« Last Edit: Oct 6th, 2015 at 12:00am by slacker032 »  
 
IP Logged
 
Peter510
CH.com Alumnus
***
Offline


Don't give out... But
don't give in.


Posts: 966
Wexford. Ireland
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2312 - Oct 6th, 2015 at 4:45am
 
Colin,
Here is a pic of the brand I get:

Back to top
  

You don't stop laughing because you grow old....You grow old because you stop laughing.
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3708
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2313 - Oct 6th, 2015 at 2:12pm
 
Slacker,

This is still the fastest and most efficient method of oxygen therapy as an abortive for CH.

You need to complete the entire sequence with 30 seconds of hyperventilation with room air (10 complete respiratory cycles) at forced vital capacity tidal volumes followed by inhaling a lungful of 100% oxygen and holding it for 30 seconds.  Keep repeating this entire 1-minute sequence until the pain is completely gone.

The respiratory physiology that makes this method of aborting CH so effective is based on lowering the arterial partial pressure of CO2 (PACO2) and elevating the arterial partial pressure of oxygen (PAO2). 

Intentionally hyperventilating at forced vital capacity tidal volumes casts off CO2 faster than your body generates it through normal metabolism.  As CO2 becomes carbonic acid when dissolved in blood serum, removing CO2 makes the blood less acid and more alkaline.  Accordingly, lowering the PACO2 elevates arterial pH making it more alkaline hence the term respiratory alkalosis.

As soon as the PACO2 levels drop below normal and arterial pH rises above normal, chemical sensors in the large arteries and brain stem, signal the body's homeostatic mechanisms that control arterial pH, to slow the flow of blood to the lungs in order to build PACO2 back up to normal levels...

These control mechanisms do this by trying to slow the respiration rate, (but you're intentionally hyperventilating so that doesn't happen).  They also signal the heart to beat more slowly and most importantly, they signal the arteries throughout the body and brain to constrict...  We want this to happen as this is part of the CH abort mechanism.

The other part of the mechanism of action involves blood hemoglobin.  As arterial pH rises, hemoglobin's affinity for oxygen increases so it carries more oxygen from the lungs than normal.  The elevated pH also lowers hemoglobin's affinity for CO2.  Accordingly an elevated arterial pH triggers hemoglobin to dump more CO2 and upload more O2 as it passes through the lungs.

All this happens while hyperventilating with room air at forced vital capacity tidal volumes...

When you inhale the lungful of 100% oxygen and hold it for 30 seconds, blood hemoglobin loads even more oxygen making it super-oxygenated.  When this super-oxygenated blood reaches the arteries, arterioles and capillaries in and around the trigeminal ganglia, it triggers them to constrict even more and this aids in affecting a very rapid CH abort.

It's very important to avoid holding the lungful of oxygen for more than 30 seconds...  As soon as you start holding your breath, PACO2 levels start rising.  Holding your breath for more than 30 seconds will allow your PACO2 to rise above normal and this will have the opposite affect on the arterioles and capillaries in and around the trigeminal ganglia causing them to dilate... This will halt or stop the CH abort mechanism.

For most of us, if started before the CH pain reaches 8 to 9 on the 10-Point headache pain scale, we can abort a CH with this method of oxygen therapy in 4 to 8 complete cycles, (4 to 8 minutes).

The following chart comes from the pilot study we conducted in 2008 where 7 CH'ers used the same method of forced hyperventilation except with an oxygen demand valve or a 0 to 60 liter/minute regulator at a flow rate of 40 liters/minute equipped with a ClusterO2 kit without a mask.  In other words, instead of hyperventilating with room air, they hyperventilated with 100% oxygen.

This chart also illustrates the time to abort is directly associated with the pain level at start of therapy.  The higher the pain level, the longer it takes to abort a CH.

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

There are a couple other things that happen during this method of oxygen therapy.  You'll experience mild paresthesia - a very slight tingling, prickling or crawling sensation around your face, lips and fingertips.  You may also experience a slight dizziness.  Lean against a wall if you feel dizzy and if you feel too dizzy, sit erect in a chair.

Both of these sensations are indications you've pushed your system into respiratory alkalosis and this is the best indication you're going to abort your CH as fast as possible. 

I realize that's a long convoluted answer to your question...  However, if you understand how and why this method of oxygen therapy is so efficient in aborting CH, you'll learn how to use it more effectively.

For those of you who are unfamiliar with this method of oxygen therapy, you can find the step by step procedures at the following link:

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

Take care and please keep us posted.

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
Peter510
CH.com Alumnus
***
Offline


Don't give out... But
don't give in.


Posts: 966
Wexford. Ireland
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2314 - Oct 6th, 2015 at 4:09pm
 
Hey Batch,
Thanks for that, it is very informative.
I was diagnosed with Emphysema and Pulmonary Fibrosis  12 weeks ago, albeit it early stage. Nonetheless, I fear the time will come when I will not be as efficient as I am now at absorbing O2 and will need to know how to get the best value out of the tank.
I will start practicing your hyperventilation method straight away.
Thanks again,
Peter.
Back to top
  

You don't stop laughing because you grow old....You grow old because you stop laughing.
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3708
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2315 - Oct 6th, 2015 at 5:24pm
 
Peter,

If used on a routine (daily) bases, the hyperventilation technique used in this method of oxygen therapy strengthens the diaphragm and intercostal muscles so actually improves lung functions and capacity.  The anti-inflammatory regimen should help with the pulmonary fibrosis as vitamin D3 promotes a healthy immune system and normal cell growth.

Take care,

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
Peter510
CH.com Alumnus
***
Offline


Don't give out... But
don't give in.


Posts: 966
Wexford. Ireland
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2316 - Oct 6th, 2015 at 5:31pm
 
Thanks Batch.

Will start straight away.

Peter.
Back to top
  

You don't stop laughing because you grow old....You grow old because you stop laughing.
 
IP Logged
 
blacklab
Ex Member



Re: 123 Days PF And I Think I know Why
Reply #2317 - Oct 7th, 2015 at 12:00am
 
Hi Peter,
            I actually went on ebay last night, found some Benadryl with the active ingredient, they were 25 mg. so that should give me the option of just taking 25 mg or doubling up at night. All of the product was only available ex U.S.A, nothing from here in Australia.  Speaking of pollen in the air, only today here, there was talk on local radio about airbourne pollen at the minute. We have a lot of plane trees in Melbourne, and while we were in drought for 10 odd years, they didn't produce much pollen, but now our rain levels have increased, so has the pollen concentrate. Everyone on local radio has been complaining about burning throats, sore itchy eyes and extreme hay fever type symptoms. I experienced it 4 years ago in Barcelona, they have there streets lined with the same type of trees, it was a horrible experience.
So Batch is well on target with the Benadryl remedy, I took 15 ml yesterday morning and followed up with 20 ml before bed and the results are amazing !!!!!  I cant remember when I haven't been clogged up through the night,anything seemed to set it off, dust, perfume any thing like that would always clog me up, maybe its more a sinus issue, I don't know, but the Benadryl completely opens up my passage ways and I sleep so much better. I've been using a mouth piece for a couple of years now to stop snoring, it works for the most part, but was concerned about a sleep disorder which some have referenced it on here, but my wife has commented that while I have taken the Benadryl for the last few days, my snoring has been negligible ! I even feel refreshed in the morning ?  go figure ! the shadows which started a week or so ago have completely disappeared.  all very interesting.....
cheers
colin
Back to top
  
 
IP Logged
 
Peter510
CH.com Alumnus
***
Offline


Don't give out... But
don't give in.


Posts: 966
Wexford. Ireland
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2318 - Oct 7th, 2015 at 1:11am
 
Great news Colin.

Long may it last.

Peter.
Back to top
  

You don't stop laughing because you grow old....You grow old because you stop laughing.
 
IP Logged
 
slacker032
CH.com Old Timer
****
Offline




Posts: 325
Los Angeles, CA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2319 - Oct 7th, 2015 at 1:27pm
 
Batch - Thanks for the clarification.
Back to top
  
 
IP Logged
 
slacker032
CH.com Old Timer
****
Offline




Posts: 325
Los Angeles, CA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2320 - Oct 7th, 2015 at 1:29pm
 
Colin - Great news!


Out of curiosity, do any of you guys take both Benadryl and melatonin?

I'm wondering if I should stop taking melatonin and try just Benadryl on its own.
Back to top
  
 
IP Logged
 
Peter510
CH.com Alumnus
***
Offline


Don't give out... But
don't give in.


Posts: 966
Wexford. Ireland
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2321 - Oct 7th, 2015 at 3:47pm
 
Slacker,

I take 20mg Melatonin and 50mg Benadryl most nights in the autumn and spring and have been sleeping really well since I started. Up to that my nights were sleepless and awful.

Best wishes,

Peter.
Back to top
  

You don't stop laughing because you grow old....You grow old because you stop laughing.
 
IP Logged
 
slacker032
CH.com Old Timer
****
Offline




Posts: 325
Los Angeles, CA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2322 - Oct 7th, 2015 at 3:57pm
 
Peter510 wrote on Oct 7th, 2015 at 3:47pm:
Slacker,

I take 20mg Melatonin and 50mg Benadryl most nights in the autumn and spring and have been sleeping really well since I started. Up to that my nights were sleepless and awful.

Best wishes,

Peter.


Do you take them all at the same time?  Right when you go to bed?  An hour before?
Back to top
  
 
IP Logged
 
Peter510
CH.com Alumnus
***
Offline


Don't give out... But
don't give in.


Posts: 966
Wexford. Ireland
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2323 - Oct 7th, 2015 at 4:34pm
 
Slacker,

Yes, I take them together around 10:00 p.m. Which is usually about one and half hours before going to bed. Benadryl takes about 2 hours in the system to reach its full effectiveness and is pretty much gone after 6 hours.

Likewise the Melatonin  would be out of your system after about 6 hours, so you wake feeling refreshed, not drowsey.

Peter.
Back to top
  

You don't stop laughing because you grow old....You grow old because you stop laughing.
 
IP Logged
 
slacker032
CH.com Old Timer
****
Offline




Posts: 325
Los Angeles, CA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2324 - Oct 7th, 2015 at 4:41pm
 
Gotcha...thanks Peter.
Back to top
  
 
IP Logged
 
Pages: 1 ... 91 92 93 94 95 ... 107
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!