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123 Days PF And I Think I know Why (Read 446004 times)
AndyC
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Re: 123 Days PF And I Think I know Why
Reply #1525 - Sep 21st, 2013 at 5:14pm
 
Hi Mike,
Thanks for your response.
I really don't mean to hijack this thread so let me know if I should continue this posting in another area.

Prior to finding this site I have sent him some pretty stupid links I found online.  Everything from cranial adjustments to acupuncture. That might have something to do with it.  Also he is possibly the most contrary individual I have every met.(yes I am talking about my youngest son)
Besides that I don't know why he is so reluctant to try things to alleviate his pain.  He is especially reluctant to use O2 even after I showed him the research.
Have any of you run into this?
Andy
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AndyC
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Re: 123 Days PF And I Think I know Why
Reply #1526 - Sep 21st, 2013 at 5:25pm
 
Hi Mike,
Thanks for your response.
I really don't mean to hijack this thread so let me know if I should continue this posting in another area.

Prior to finding this site I have sent him some pretty stupid links I found online.  Everything from cranial adjustments to acupuncture. That might have something to do with it.  Also he is possibly the most contrary individual I have every met.(yes I am talking about my youngest son)
Besides that I don't know why he is so reluctant to try things to alleviate his pain.  He is especially reluctant to use O2 even after I showed him the research.
Have any of you run into this?
Andy
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Re: 123 Days PF And I Think I know Why
Reply #1527 - Sep 21st, 2013 at 6:28pm
 
Maybe he likes being in pain?

As warped as that sounds, there are some people who appreciate the attention it garners.
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Mike NZ
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Re: 123 Days PF And I Think I know Why
Reply #1528 - Sep 22nd, 2013 at 2:40am
 
Hi Andy - creating a new thread in the "Getting to know ya" area might be worth doing as it can focus on you, rather than being a side discussion from "123 days...".

Just about everyone with CH will have had many, many suggestions from people trying to help who just don't really understand anything remotely CH related, there is even a whole thread here somewhere about the responses that can make amusing reading, although that isn't the reaction when someone suggests something when you're in the middle of a CH. What people need to learn is that people are well meaning, it's just that CH isn't too common and it isn't anything remotely like a normal tension headache.

I've previously seen a few supporters give similar comments that their husband / wife / child just will not take interest in anything that might help. Most times it seems that the person has had their resistance just about broken from what CH does to you, coupled with having not had good treatment, etc. You can imagine how people get to a position where all hope is just about lost.

You can do a lot to help, provide good information, backed by evidence, but it still needs the person with CH to make that final step and to do something about it.

Ask anyone here who has used O2 and they will say it is a life changer...
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Re: 123 Days PF And I Think I know Why
Reply #1529 - Sep 22nd, 2013 at 8:36am
 
Andy, after all the failed treatments the poor kid has been through, I can certainly understand his reluctance to get lead down another yellow brick road, only to get his heart broken again because beasty comes roaring back. Undecided Try to get him onto the board, Lord knows no one here will tell him to take an aspirin, or it's just a headache. Wink

Joe
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Re: 123 Days PF And I Think I know Why
Reply #1530 - Sep 23rd, 2013 at 1:36pm
 
Thanks for all your replies,
I have finally found a place that understands.  Both from the supporter view and the 'headacher'(if that is a word) view.
Andy
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Re: 123 Days PF And I Think I know Why
Reply #1531 - Sep 23rd, 2013 at 2:23pm
 
I could not imagine a Cluster Cycle without oxygen.  It is truely the only thing that helps every time.  I remember life before the oxgen....walking and pacing the floors with pain that made tears pour down my face.  I never want to experience those days again.  Oxygen which I found out about on this Clusterheadache.com web site has truely been a lifesaver.  The people on this message board are the best and they know what they are talking about.
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Re: 123 Days PF And I Think I know Why
Reply #1532 - Sep 25th, 2013 at 6:35am
 
Hi

Still on the Anti-Inflammatory Regimen,
but suddenly ,
not good, not good at all, up to 7 episode's  a day,
and have no idia why....

not venting, or complaining, just wondering (aloud ) why....

Started with Nerve block to try and cut the episodes, hope
will give me some relief ...

Michael



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Re: 123 Days PF And I Think I know Why
Reply #1533 - Sep 25th, 2013 at 11:58pm
 
Batch

Thanks for all your advice!

My pH was too low, so I used chlorophyll, food enzymes, nature's Noni, extra Mg and Ca, lots of lemonade, adjust my diet, now my pH is better, and the O2 is working again!

Two nights I could sleep for longer than 30min at a time, 5 hours! But I did something that I don't know if it is okay, but it worked, after the CH was aborted I set my alarm for an hour and kept the O2 on at 4lpm and put it off after the hour, then I was passed that 30min barrier and slept for 4 more hours. Last night I did not do it again but still had a 2 hour and 3 hour stretch of sleep!!!

It is such a relief after no sleep longer than 30min the last two months!!!!

Thanks again!

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Re: 123 Days PF And I Think I know Why
Reply #1534 - Sep 26th, 2013 at 1:00am
 
hell-jee wrote on Sep 25th, 2013 at 11:58pm:
But I did something that I don't know if it is okay, but it worked, after the CH was aborted I set my alarm for an hour and kept the O2 on at 4lpm and put it off after the hour, then I was passed that 30min barrier and slept for 4 more hours. Last night I did not do it again but still had a 2 hour and 3 hour stretch of sleep!!!


Be very, very careful about doing this with a non-rebreather mask. If you run out of oxygen and the mask is fastened to your face then you could suffocate.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1535 - Sep 26th, 2013 at 12:53pm
 
Hell-Jee,

Thanks for the feedback...

I'm probably one of the few around who thinks a low pH is a problem for CH'ers...  It doesn't take much of a drop in pH (increased acidity) to trigger an increase in vasodilation.  When that happens, none of the cluster headache preventatives or abortives work very well.

Our arterial/systemic pH is controlled by one of the most powerful homeostatic functions in our body...  Chemoreceptors in carotid arteries and in the brain stem detect a shift to a lower pH and interpret this condition as too much CO2. 

In response, pH homeostatic mechanisms in the autonomic nervous system trigger the arteries and capillaries to dilate, the lungs are signaled to increase respiration rate and the heart is signaled to beat faster... All this happens to speed the flow of blood to the lungs to cast off the perceived excess of CO2.   

This vascular dilation makes the cluster headache triggering mechanisms more effective so we get hit harder and more frequently. The same thing happens during sleep where our respiration rate drops.  When this happens, arterial oxygen content drops and CO2 content increases...  a perfect storm for CH'ers.

An alkaline forming diet likes GOMBS, (Greens, Onions, Mushrooms, Beans-Berries and Seeds including nuts) and the methods you used are some of the best defenses against an arterial/systemic pH at the low end of the normal range (7.35 to 7.45).

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1536 - Sep 27th, 2013 at 12:41pm
 
Hi Batch and all;
With much work, I received my 25(OH)D results today.
86 nmol/L (not bad)

Just started the regimen Batch, but here's the kicker tho.
  I need your advise.

I've been battling CH since June, with much push and work I was able to see Neuro (Sitwell) on Fri Sept 20th. To abort my CH's he prescribed me prednisone 100mg/day for 7 days. (I had never had this drug before). Yes, its kicked the hits, but I'm scared how to draper off of it.
Started Prednisone Script Sunday:

-Sun thru Tues @ 100mg/day(feel human again).
-Wed & Thur @ 50mg/day. 
-Thurs (yesterday) i originally took only 25mg in morning, but woke up at 10pm last night with 2/3kip, obviously I still need the taper down... so I took another 25mg at 10pm last night.
Fri - I'll take 50mg's today,
I'm guessing?


-Also taking 3 x 80.5mg Verapamil daily.
***With your Pregnisone experiences, please advise me how the best way to taper down Pregnisone, with knowledge his script was written for a 7day fix @100mg/day.

I just want to say… Thank you to Batch and Clusterheadaches.com all the folks here
Batch, you are so highly respected.
I'm thinking:
Sat Sun Mon - 25mg/Prednisone... ?? Your thoughts...

Hopefully the CH's will not come back with vengence Sad
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Re: 123 Days PF And I Think I know Why
Reply #1537 - Sep 27th, 2013 at 2:34pm
 
Hey Sue,

Thanks for the kind words and good question...

There are two schools of thought on the best method of treating cluster headaches with prednisone.

One uses a 10 to 15 day taper... The other uses a short burst without taper.  Ultimately, both methods work for a while to prevent your cluster headaches, but when they end... the beast comes back... if you're chronic or episodic and still in cycle.

Claims that prednisone "broke" a cycle among episodic sufferers are frequently clouded by end of cycle...  In many cases, the CH cycle was ending anyway and that makes attributing a cessation of attacks to prednisone an iffy claim...

Prednisone also slows vitamin D3 metabolism so knowing your lab results for 25(OH)D is important.  As your lab results came back at at 86 nmol/L, (34.4 ng/mL)...  Not bad... but not high enough for any lasting relief from CH...  You need to get your 25(OH)D serum concentration up between 150 and 250 nmol/L.

Several CH'ers, episodic and chronic, have used an accelerated vitamin D3 dosing schedule of 25,000 IU/day with a 50,000 IU loading dose once a week on top of the daily dose.

A month on this schedule should elevate your 25(OH)D in a range between 150 and 250 nmol/L...  and that should result in a pain free response... but you'll need to see your PCP for another 25(OH)D lab test at that point so you can adjust your vitamin D3 intake accordingly. 

If the results of this lab test come back around 212 nmol/L, you're in the sweet spot... At that point you can drop back to a maintenance dose of 10,000 IU day vitamin D3 and test again in 3 months...

Hope this helps.

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1538 - Sep 27th, 2013 at 3:54pm
 
oh thank you so much Batch...
I'm episodic & yes I'm still in a cycle.
I will continue as planned to taper off prednisone by breaking the 100's tabs in half, then quarters. (I don't like this drug!) nor any.
I will accelerate the Vit D3 as you say... Yes I will continue to get my lab results, I'm arranging the GP to give me a few requisitions for the 25(OH)D test.
I will keep in touch, definetely! I can't thank you enough. I really appreciate your support.  Smiley  Smiley
 
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Re: 123 Days PF And I Think I know Why
Reply #1539 - Sep 27th, 2013 at 4:17pm
 
AndyC wrote on Sep 21st, 2013 at 5:25pm:
Hi  He is especially reluctant to use O2 even after I showed him the research.
Have any of you run into this?
Andy


Yes, sort of, but different. My now former general doctor refused to prescribe O2, saying he didn't have any other cluster headache patients who used it, and referrred me to a neurologist (forgetting he is the SAME DOCTOR who prescribed it for me 4 years ago, which is the reason I went back to him). So bottom line he was afraid to prescribe it.

I think people are reluctant to try things, because they don't understand the benefits... like kids who won't eat vegetables.  Smiley Oxygen is what we all breath everyday, only 100% oxygen is about 10X more concentrated than regular air... no big deal. It won't make him high, it doesn't lead to dependence, it doesn't have bad side effects, and he won't turn into Freddy or Jason. The only side effect I have after using O2 is feeling relaxed, I sometimes fall asleep with the O2 still on and waste the rest of the O2 tank.
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Re: 123 Days PF And I Think I know Why
Reply #1540 - Sep 28th, 2013 at 1:16pm
 
Hey Batch,
To recap: I did what you said, I've increased my D3 intake to 25,000mgs starting yesterday.
Just wanted you to know how I'm tapering off prednisone.  Because my script is in a 100mg tab form,prescriped for only for 7 days, this is all I can do.

100mg/day for 3 days
50mg/day for 3 days (on the last 2 days of the 3, I split the tab took 25 in morning then 25 in afternoon.) dunno!
25mg/day for 3 days (today is the first day, shall be interesting tonight)

I'm following your recipe, but shortening my intake of Calcium at the moment. Due to the Verapamil I'm currently taking.
*please note
:
correction above:
I am taking 120 verapamil 3 X per day.  (80 & 1/2 pill) = 120mgs ea day.

Stay tuned to this Crazy Canuck's saga... tx Batch.
p.s. couldn't do this without your support bud! Wink





Batch wrote on Sep 27th, 2013 at 2:34pm:
Hey Sue,

Thanks for the kind words and good question...

There are two schools of thought on the best method of treating cluster headaches with prednisone.

One uses a 10 to 15 day taper... The other uses a short burst without taper.  Ultimately, both methods work for a while to prevent your cluster headaches, but when they end... the beast comes back... if you're chronic or episodic and still in cycle.

Claims that prednisone "broke" a cycle among episodic sufferers are frequently clouded by end of cycle...  In many cases, the CH cycle was ending anyway and that makes attributing a cessation of attacks to prednisone an iffy claim...

Prednisone also slows vitamin D3 metabolism so knowing your lab results for 25(OH)D is important.  As your lab results came back at at 86 nmol/L, (34.4 ng/mL)...  Not bad... but not high enough for any lasting relief from CH...  You need to get your 25(OH)D serum concentration up between 150 and 250 nmol/L.

Several CH'ers, episodic and chronic, have used an accelerated vitamin D3 dosing schedule of 25,000 IU/day with a 50,000 IU loading dose once a week on top of the daily dose.

A month on this schedule should elevate your 25(OH)D in a range between 150 and 250 nmol/L...  and that should result in a pain free response... but you'll need to see your PCP for another 25(OH)D lab test at that point so you can adjust your vitamin D3 intake accordingly. 

If the results of this lab test come back around 212 nmol/L, you're in the sweet spot... At that point you can drop back to a maintenance dose of 10,000 IU day vitamin D3 and test again in 3 months...

Hope this helps.

Take care and please keep us posted.

V/R, Batch

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Re: 123 Days PF And I Think I know Why
Reply #1541 - Sep 28th, 2013 at 4:51pm
 
Thank you, Batch!


SIX weeks pain free today and my annual “summer peak” of CH attacks was avoided this year and I think Batch knows why!

Since summer 2000 I suffer from chronic CH, diagnosis was in July 2005. Since then I take verapamil daily between 120-480mg/day. This usually works quite well but every year during the summer the CH gets that bad that the verapamil does not seem to work anymore. This year in June I started the “Anti-inflammatory regimen”, in addition to the verapamil, with a very good result.

My Vitamin D3 (25-OH) values were as follows:

May 17, 2013: 20.2 ng/ml 

August 21, 2013: 67.7 ng/ml 

Starting from June 18, 2013 I took Vitamin D3 = 10,000 IU + Omega-3 = 2,400 mg (EPA 360 mg, DHA 240 mg) + Vitamin A = 800 mcg (2,667 IU) daily.

Twice I started the calcium + magnesium supplementation but discontinued this after a couple of days because of an increasing number of attacks. I took the calcium + magnesium supplementation hours after taking the daily verapamil, but this may still have a negative effect on the efficacy of the verapamil? After the discontinuation of the calcium + magnesium supplementation the number of attacks was reduced again from the following day.

Side effects from the Vitamin D3 + Vitamin A + Omega 3: I feel less tired during the day than I felt tired during the day earlier this year! – No adverse events, no negative side effects at all.

Since yesterday I reduced the daily verapamil dose from 480mg to 360mg and if everything goes well, I will continue to reduce my daily verapamil intake during the next months.

Please find attached a graph with my attacks per month from the beginning of 2011 until now. Sorry that the text in the graph is in German (and that I’m too lazy to translate) but I’m sure you’ll understand what I mean!

Again,
Thank you VERY much, Batch!



Pf wishes,
Friedrich


Edit: Replaced diagram by english language version.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1542 - Sep 28th, 2013 at 5:51pm
 
Friedrich,

Mein freund, das ist hervorragend!  Vielen dank für dieses wunderbare daten...

Take care and thanks again,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1543 - Sep 28th, 2013 at 6:15pm
 
Sue,

I'm tuned in...  I live in Washington State a few hours South of British Columbia so Crazy Canucks are my kind of people... 

I also spent a few days in Watertown, NY a few years back working with Forward Observers from the 10th Mountain Division at Ft Drum, so was only a few miles South of you...

I'm confident you're going to like the results of taking this regimen...

Take care...

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1544 - Sep 29th, 2013 at 11:53am
 
Hey Batch and others,
So far feeling great and still very overwhelmed with this particular cycle, & not only that! How you & the others have supported me towards freedom.
To recap: Prednisone taper
- Last night was my first day at yet again a lower dose of 25mg. I must say, I was a bit concerned about going to sleep last night...afraid of waking up to CH.
I MADE IT! wooo! I'm feeling good, I'm making my way thru this storm; (not without your help batch) I'm staying focused.
Monday Sept 30th last day @ 25mg of Prednisone, then I will be entering a new step once more
(with a little anxiosity attached to it)
.
If all is good at this point... this is where I will need your advise.
When & how to reduce the Verapamil.

My thoughts are: prehaps have another 25(OH)D test again at 3 weeks from last test result. Then I will be able to determine how much to reduce the Verapamil?
Appreciate your thoughts...
p.s. I probably shouldn't be looking that far a head yet.  Grin

Thank you as always  Smiley
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Re: 123 Days PF And I Think I know Why
Reply #1545 - Sep 30th, 2013 at 1:28pm
 
Thank you for this post Batch, I found this very interesting Smiley 
So what you are saying, its best to keep our diet to more a higher alkaline type. 
Also, I'd like to ask.  I'm a sensitive kind of person... (sounds silly) but I'm assuming these foods play with our stress levels and how we deal with anxiety?
I know at the moment, I seem to have more anxiety with my day to day life... don't know why, maybe its a personality trait.
thanks for listening..

Batch wrote on Sep 26th, 2013 at 12:53pm:
Hell-Jee,

Thanks for the feedback...

I'm probably one of the few around who thinks a low pH is a problem for CH'ers...  It doesn't take much of a drop in pH (increased acidity) to trigger an increase in vasodilation.  When that happens, none of the cluster headache preventatives or abortives work very well.

Our arterial/systemic pH is controlled by one of the most powerful homeostatic functions in our body...  Chemoreceptors in carotid arteries and in the brain stem detect a shift to a lower pH and interpret this condition as too much CO2. 

In response, pH homeostatic mechanisms in the autonomic nervous system trigger the arteries and capillaries to dilate, the lungs are signaled to increase respiration rate and the heart is signaled to beat faster... All this happens to speed the flow of blood to the lungs to cast off the perceived excess of CO2.   

This vascular dilation makes the cluster headache triggering mechanisms more effective so we get hit harder and more frequently. The same thing happens during sleep where our respiration rate drops.  When this happens, arterial oxygen content drops and CO2 content increases...  a perfect storm for CH'ers.

An alkaline forming diet likes GOMBS, (Greens, Onions, Mushrooms, Beans-Berries and Seeds including nuts) and the methods you used are some of the best defenses against an arterial/systemic pH at the low end of the normal range (7.35 to 7.45).

Take care and please keep us posted.

V/R, Batch

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Re: 123 Days PF And I Think I know Why
Reply #1546 - Sep 30th, 2013 at 6:23pm
 
Sue,

Keeping our arterial/systemic pH on the alkaline side of neutral helps nearly every function in the body... It also helps the nutraceuticals we take in the anti-inflammatory regimen function more effectively.

One of the beneficial side effects of this regimen is better sleep...  With a good 8 hours of sleep... we all function far better with a lot less self-induced stress.

Kicking our arterial/systemic pH to the alkaline side of neutral isn't all that difficult to do.  The GOMBS diet is a great starter...

The following article deals with cold remedies but the underlying principle in several of these remedies is elevating pH to the alkaline side of neutral.

Hope this helps.

Take care,

V/R, Batch


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10 easy, natural remedies for conquering the common cold

Originally published September 26 2013, by Jonathan Benson, staff writer (NaturalNews)

Persistent coughing, runny nose, stuffed up sinuses, headaches -- these are among the many symptoms that can drag you down and leave you feeling helpless to make it through your day and fulfill your responsibilities when you catch a cold virus. But rather than reach for those chemical-laden cough syrups and mind-numbing antihistamines, why not instead try one or more of these 10 natural remedies for conquering the common cold?

1) Vitamin D. Vitamin D is perhaps the most overlooked, and yet arguably one of the most effective, remedies for treating the common cold. Although it works better as a preventive regimen, taking higher than normal doses of vitamin D3 daily -- some experts recommend taking 10,000 international units (IU) or more of vitamin D3 every day -- can help reduce cold and flu symptoms and get you back to normal health much more quickly than without them. (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register)

2) Apple cider vinegar. Cold viruses tend to put the body into an overly acidic state, which makes it that much more difficult for the immune system to fight disease. But taking apple cider vinegar, a powerful alkalizing food, will help not only kill a cold but also squash its miserable symptoms. Mixing a few tablespoons of apple cider vinegar with warm water, honey, and lemon, and drinking the concoction several times a day will have you back to health in no time. (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register)

3) Vitamin C. A powerful immune booster, vitamin C is a go-to remedy for both preventing and treating colds. Some experts recommend taking up to 2,000 milligrams (mg) or more of non-genetically-modified (non-GMO) ascorbic acid or sodium ascorbate every two hours while suffering cold symptoms. Other vitamin C options include camu camu and acerola cherry powders, as well as "liposomal" vitamin C preparations. (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register)

4) Honey. A powerful soothing and healing agent, raw honey from untainted bees can go a long way in boosting immunity and treating cold symptoms. Its diverse array of antioxidant, antiviral, and antibacterial nutrients make honey an excellent cold medicine that mixes well with other cold remedies such as apple cider vinegar and lemon. (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register)

5) Ginger. Another powerful, soothing agent, ginger root is a powerful healer with amazing anti-inflammatory properties. Because it targets stomach upset, those suffering from cold symptoms that involve digestion can experience dramatic relief from taking ginger. Ginger also helps warm the body, which is highly effective at promoting perspiration and the expelling of toxins and other harmful invaders. (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register)

6) Zinc. Often sold in syrup or lozenge form for such purposes, zinc has been scientifically shown to help combat the sniffling, sneezing, and coughing symptoms typically associated with colds. Zinc is also a powerful immune-boosting trace element that facilitates the proper function of more than 3,000 proteins in the body, as well as the promotion of healthy digestive function, which is where the bulk of immunity lies. (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register)

7) Echinacea. A 2007 study out of the University of Connecticut found that supplementing with echinacea herb not only reduces your chances of developing a cold by more than 50 percent, but can also shorten the duration of cold symptoms by several days. Because it stimulates the immune system and promotes the activation of T-cells, echinacea is an excellent cold remedy, especially when combined with many of the other remedies listed in this report. (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register)

8) Neti pot. If stuffed-up sinuses are one of your primary ailments, using a neti pot to clear them out is an easy, natural way to help you get back on your feet. Just fill a sanitized neti pot with warm water and about one teaspoon of sea salt, and gently pour it down your sinuses. Besides clearing out your nasal passages, the cleansing salts will also help eliminate bacteria and other harmful pathogens. (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register)

9) Oil of oregano. Rich in four specific groups of chemicals that synergistically promote healing and strong immunity, essential oil of oregano is unparalleled in its ability to both prevent harmful viruses from taking hold, and eradicating existing viruses such as the common cold. The natural terpene chemicals found in oil or oregano exhibit powerful antiviral and anti-inflammatory activity, while carvacrol, the primary active ingredient in oil of oregano, fight off harmful pathogens. (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register)

10) Coconut oil. This elixir from the coconut palm is one of the most powerful, natural antiviral compounds known to man. Coconut oil has an amazing ability to target virtually any virus, including cold viruses. Rich in medium-chain fatty acids (MCFAs), coconut oil absorbs directly into viral cells where it breaks apart and disintegrates the protective coating of the virus, effectively killing it. Take a tablespoon or two daily of extra virgin coconut oil, particularly at the onset of cold symptoms, can effectively thwart the virus from taking hold and running its course. (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register)
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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
pete_batcheller  
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sue_g
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Re: 123 Days PF And I Think I know Why
Reply #1547 - Oct 2nd, 2013 at 6:53am
 
Thanks again Batch! Awesome information.... as usual!
Hi Batch & all,
I’d appreciate your thoughts on how to taper off Verapamil.
I've already started the D3 regimen, but here's the kicker tho. Where I need your advise.
As you are aware, I've been battling CH since June & on Fri Sept 20th my Neuro prescribed me prednisone 100mg/day for 7 days. (I had never had this drug before). Yes, its kicked the hits and I've safely made it thru without any issues. Done, finished the Prednisone without CH relapse.
(Chills of joy  Shocked
yay
)

-Continuing still with 3 x 120mg Verapamil/day or 360mg daily.
-September 25th My 25(OH)D (nmol/L) test result = 86.
-Have increased D3 to 25,000 daily as of Sept 28th, (THANKS BATCH) to get to the range of 200-250nmol/L or same as 80-100ng/mL.
I feel pretty well back to norm, without knowing of course if the CH’s are playing in the background.  I feel that they may have gone, (not sure tho).

Looking for your opinion &/or suggestions:

I’d like to start a plan to reduce the Verapamil.
Shall I wait until I get another 25(OH)D test done, perhaps in another two weeks. Or, shall I reduce the Verapamil slightly now to see what happens.
I know that’s a huge question… hoping you’ve experienced this when you started the D3 regimen.

I just want to say… Thank you again Batch & all of you for supporting me thru this. (I think the scary part is over, for now). You guys are the best and truly are so highly respected.  Smiley
Sue

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Re: 123 Days PF And I Think I know Why
Reply #1548 - Oct 2nd, 2013 at 8:54am
 
Sue,

I don't see any need to rush... Talk with your neurologist about your experience with vitamin D3 and the results you've experienced then discuss a plan to come off the verapamil...

Take care and please keep us posted.

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
pete_batcheller  
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Re: 123 Days PF And I Think I know Why
Reply #1549 - Oct 2nd, 2013 at 9:25am
 
Yes, you are right, Ya... totally get it. I will take baby steps with it Batch.
Thanks Bud, tty all later Smiley
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