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123 Days PF And I Think I know Why (Read 446495 times)
Zahava
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Re: 123 Days PF And I Think I know Why
Reply #700 - Apr 6th, 2012 at 5:40pm
 
Thank you so much. I've been in the hospital 3 times for IV injections etc. & very anxious. My husband found this site & deserves a "merit badge" for care giving. I'm NOT a good patient, but he never gives up (thank God) ! I know he''l go to Cosco etc. & bring home the D3 +++.
Thanks again for your help.
Z Smiley
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Re: 123 Days PF And I Think I know Why
Reply #701 - Apr 7th, 2012 at 6:31am
 
Batch,
I am keen to try this. However, right now might be difficult so if you can advise please do.
I did not have a Cycle in 2011. This year I went into cycle again and how. As an extra present during the peak of cycle I had a pulmonary embolism.
I am now on anti coagulant therapy which is expected to cease in 6 months. I know D3 doesn't effect warfarin but Omega 3 in whatever form does.
My question is will D3 on it's own work?
ET
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #702 - Apr 7th, 2012 at 4:18pm
 
Hey Ellick,

Good question...  The short answer is yes...  Vitamin D3 can work all by itself to help prevent CH...  but you should also supplement with calcium and the cofactors, magnesium, vitamin K, zinc and boron if possible. 

The best course of action is to discuss this regimen with the doctor who prescribed the rat poison (warfarin...   Well...  that's what my mom called it....)  Between the two of you you should be able to come up with a safe and satisfactory regimen to help prevent your CH.

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 #703 - Apr 10th, 2012 at 10:57pm
 
Hello,

First, I would like to say thank you. I was in the middle of the second episode of my life when I stumbled out of the dark wood of CH pain and into the vitamin D regimen. My first episode occurred nearly two years ago, and was a classic case of CH--beginning in my late 20's, bilateral pain amplified and triggered by alcohol, KIP 8's that would wake me from sleep, attacks occurring at the same time of day etc.

This second episode tapered on, rose to a climax in a week, and then I started taking the vitamin regimen three days ago. I've had, in those three days, perhaps 2 KIP 2-3's. They last significantly shorter, and are significantly less severe. I get these at night, but two Advil PM's seem to knock them out quickly.

I take 10,000 iu D3, 2400 mg fish oil, and two combo pills of  calcium (666 mg total), magnesium (266 mg total), and zinc (10 mg) per day, split between breakfast and dinner. I have not had the 25 (OH) D test. I also do not take the Boron or Vitamin K.

I'm a bit surprised, as I live in a sunny place, and I am outside a great deal. I never thought a lack of vitamin D would be the culprit.

My questions are: How strongly do you recommend getting the 25 (OH) D test? And where would I go? Also, since I am episodic, should I test going off of this regimen in a few weeks to see if I've "busted" the cycle? Finally, should I take the Boron and VItamin K?

Thank you, Mr. Batch. You seem like a kind and wise soul. It's a joy to be pain free, and you have helped with that.
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Re: 123 Days PF And I Think I know Why
Reply #704 - Apr 11th, 2012 at 9:35pm
 
I started taking 6000 iu of Vitamin D3 back in January after being on a prednisone taper and cycle was knocked out.  My doctor saw me in March and said I was taking too much Vitamin D.  I had a blood test that confirmed that my levels were OK but I since have read that long exposure to high amounts of Vitamin D is extremely dangerous.  I read that 2000 iu a day is the max that should be taken. 

I went back to taking 2000 a few weeks ago and am now starting a new cycle of clusters.  Not sure what to do.  Undecided
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Re: 123 Days PF And I Think I know Why
Reply #705 - Apr 11th, 2012 at 10:00pm
 
Your doctor merely does not want to be sued.
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Re: 123 Days PF And I Think I know Why
Reply #706 - Apr 12th, 2012 at 12:25am
 
Jillsusan, I agree with what Brew said wholehearedly.  Next time ask your Dr how much training and education he has in nutrition.  I can guarantee you it is even less than he has in Headache unless he has done some extracurricular study in it.

Jerry
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Re: 123 Days PF And I Think I know Why
Reply #707 - Apr 12th, 2012 at 1:43pm
 
Jillsusan,

If you were to go out in the mid-day sun clad in a bathing suit without any sun block, your skin would generate 15,000 IU/vitamin D3 in 20 to 30 minutes...

You might want to check the source of the information saying high doses of vitamin D3 are dangerous...  To my knowledge after reading some of the gold standard studies on vitamin D3 dosing conducted by endocrinologists...  "Even a daily dose of 40,000 IU/day vitamin D3 is unlikely to result in vitamin D3 intoxication."

What was your 25(OH)D serum concentration?  Over 150 CH'ers have posted their results of using this regimen as a CH preventative over the last year...  Most were taking at least 10,000 IU/day vitamin D3 and some were dosing as high as 20,000 IU/day... 

So far, there have been no reports of vitamin D3 intoxication with elevated serum and urine calcium levels.

Regarding what to do...  First, be aware that most neurologists and many primary care physicians are not up to speed on effective dosing levels of vitamin D3 or at therapeutic serum concentrations of 25(OH)D, the serum metabolite of vitamin D3. 

Moreover, the government bureaucrats on the Food and Nutrition Board (FNB) at the Institute of Medicine (IOM) who set the at Dietary Reference Intakes (DRI) values and Tolerable Upper Intake Level (UL) use a convoluted logic to set the UL for vitamin D3 at 4,000 IU/day.  It's interesting to note that the four members of the FNB who set this value are either tenured professors in biochemistry and nutrition, or long time government employees.  None of them are medical doctors and none of them have ever treated patients for a vitamin D3 deficiency.

The 10,000 IU/day vitamin D3 dose is consistent with established treatments with vitamin D3 carried out by physician members of the American Board of Integrative Holistic Medicine, endocrinologists and neurologists treating patients with Relapsing/Remitting Multiple Sclerosis (RRMS). 

It should be noted that the DRI for vitamin D3 was developed based on nutritional needs...  The normal reference range for 25(OH)D was determined by taking a gaussian distribution (bell shaped curve) on the results of a large survey that measured 25(OH)D levels of a largely vitamin D3 deficient population, not for any therapeutic value used in treating conditions like cluster headache.

You may want to read about vitamin D3 at the vitamin D3 Council web site at:

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This is a wonderfully informative web site on vitamin D3.

One of the Jedi Masters of vitamin D3 research, Dr. Robert Heaney, M.D., developed the following chart.  I've modified it with data collected from posts by CH'ers here at CH.com.  It illustrates the relationship between serum 25(OH)D levels and cluster headaches at various doses.

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It's interesting to note that Life Guards in Southern California and Florida who were test for 25(OH)D all averaged 90 ng/mL, (225 nmol/L)...  and none of them were taking oral vitamin D3 supplements...

Armed with this information, you should be able to make an informed decision on an effective vitamin D3 dose.

There are additional studies on this topic so please let me know if you need more information and I'll post links to them again.

Take care and please keep us posted on how you plan to proceed.

V/R, Batch


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« Last Edit: Apr 12th, 2012 at 4:37pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #708 - Apr 12th, 2012 at 10:40pm
 
Thanks Batch,
It was my Endo who said 6000 was too much. I am hypothyroid and had my annual visit with him when notified him that I added VD3 to my list of daily meds.  He sent me for blood work that day.  I didn't get the number...only that it was within normal range.

I discussed oxygen with my GP today and just finished my first SUCCESSFUL O2 abort...it took 11 minutes for full abort... 20 minute treatment (6L) started treatment at the first signs of attack.  I'm going to keep at this.

I have not spoken to my GP about the D3 yet because I saw your post later but I want to increase my vitamin D3 again, based on the fact that my blood tests were normal when I was on 6000 IU.
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Re: 123 Days PF And I Think I know Why
Reply #709 - Apr 13th, 2012 at 1:13am
 
OK . . . I'll be the first.  Congratulations on aborting with 02. . . . but you're not gonna believe how much faster you can abort with the proper flow rate and mask.  If you were able to abort at 6 lpm after 20 min, you won't believe how fast you can abort with 15-25 lpm and a non-rebreather mask, preferably the O2ptimask with the big green 3-litre bag (links on the site).

  Be Safe,   PFDANs

    Richard
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Re: 123 Days PF And I Think I know Why
Reply #710 - Apr 13th, 2012 at 10:25am
 
It's been a year since I begun my trial and added omega3s to my daily vitamins.

During these 12 months I've been hit only 4 times, 3 during stressful occasions and once when I forgot to take my omega3 tablet on the usual time. But NO CYCLE. This means that I've been cycle-free for the longest time since ch came into my life!

The result is clear: omega3s are here to stay. Smiley

All the best & PF days to everyone,
Sanna
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« Last Edit: Apr 13th, 2012 at 10:26am by sandie99 »  

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Re: 123 Days PF And I Think I know Why
Reply #711 - Apr 13th, 2012 at 12:14pm
 
Jillsusan,

Your endocrinologist made a perfectly understandable call regarding vitamin D3 given your thyroid disorder.  The parathyroid and thyroid play a major role in calcium homeostasis and vitamin D3 metabolism. 

Thyroid and Parathyroid disorders are also among the more common comorbid conditions associated with cluster headache. I'm not a doctor, but I suspect there's room to maneuver regarding the vitamin D3 dose... 

For starters, the term "normal" with respect to 25(OH)D serum concentrations is meaningless if you suffer from cluster headache.  The "normal" reference range for 25(OH)D is 30-100 ng/mL. However, we've had CH'ers with active bouts of CH test as high as 42 ng/mL 

Moreover, from the chart I posted in response to your initial post, you can see that CH'ers who had a favorable response to the anti-inflammatory regimen with 10,000 vitamin D3 and then had the lab test had a serum concentration of 25(OH)D in a range of 60-110 ng/mL.

I suspect your endocrinologist will be willing to work with you to prevent your cluster headache as you increase or titrate your vitamin D3 dose to 10,000 IU/day.  Lab test for calcium, PTH, and 25(OH)D will be essential.

Regarding oxygen therapy...  Richard is spot on.  An oxygen flow rate of 25 liters/minute results in much faster aborts as this flow rate can support hyperventilation. 

Many of us who have mastered oxygen therapy as an effective CH abortive, use flow rates that support hyperventilation.  We spend most of the time at a flow rate of 40 liters/minute to get the fastest aborts possible...

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 #712 - Apr 13th, 2012 at 2:20pm
 
6 weeks in. Taking the D3, Cal+, Omega3, and Magnesium all at once in the evening. Getting the "familiar pain" every day in the late afternoon or early evening, though much, much less severe (upto about a 4) - Thank Batch. I'm thinking of splitting between morning and evening. I see from reading here that some of you take them all at once and some spaced out throughout the day. Has anyone seen a difference in switching when or how these are taken?

-dvb

(sorry if this has been answered already)
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Re: 123 Days PF And I Think I know Why
Reply #713 - Apr 14th, 2012 at 8:23am
 
Just a few quick questions (and I too apologize if these have been answered before).

Should I reduce my D3 intake if I go out in the sun all day?

How will I know when my cycle ends? (I ask this because I've still been avoiding my triggers--a cold beer, for instance, which I really would like after 3+ weeks of CH-induced sobriety). (I also found that I've been pretty much pain free since day three of the regimen, except for a massage-induced KIP 7-8).

Why am I losing so much weight on this regimen without altering my diet? (You'd think that someone would exploit this as a weight-loss regimen...)

Thanks again.


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Re: 123 Days PF And I Think I know Why
Reply #714 - Apr 14th, 2012 at 7:39pm
 
I WISH it did something for my weight!  I don't think I've lost an ounce.

jc
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Re: 123 Days PF And I Think I know Why
Reply #715 - Apr 17th, 2012 at 4:43pm
 
Hi Batch
Radar here, nearly a year since I dropped by, had no reoccurrence on the regimen with 5000iu a day.  All of sudden I have my precursors of an episode, extreme tiredness, tender skull and some shadows.  Have upped the D3 to 10000iu split morning and evening, should I up the mg and ca as well?  Never done the K or Boron,? 

Keeeping fingers crossed that I am not going to be sucking the inside out of thatO2 bottle again.

Pain free lives on D3 to everyone Cheesy
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Re: 123 Days PF And I Think I know Why
Reply #716 - Apr 18th, 2012 at 11:45am
 
These boards are a godsend!

I'm going to add to the list of people who have found success with D3.

I'm a 25yo male, smoker, ch sufferer for 7 years now. I've tried everything I can (without insurance) including the following: Relpax (too many side effects and not realistic for the 5 headaches a day I get), Capsaicin nasal pepper spray (it hurts like hell, but is often a good addition to abortive methods), Chilled Saline sprays (feels quite nice, but I haven't seen too much success with it, just figure it can't hurt), regulating sleep/diet, and a plethora of natural remedies, none of which that have proven to work for me. Red Bull always seemed to help though, so I've stuck with that, as even though it doesn't work [i]that[i] well, it gives me the extra energy to fight these things off.

Since I have no insurance, I'm at the mercy of my Pediatrician brother for rx's and he scoffed at O2 saying I was too young and that I would become O2 Dependent. He also said that CH was the same as a migraine, so I guess that shows how much we should be trusting our doctors with this particular ailment. 

My cycle started this year with a vengeance earlier this month and I was devastated (as I am every year when the hopelessness sets in) and I figured I'd jump back on the boards to see if anyone had found a 'cure' for me. I came across this article and was pleased, as I had recently started a D3 regimen of 5,000 IU a day for other reasons.

I upped my daily dose to the recommended 10,000 IU. The first day I saw no change in my cycle which is -

Two Kip 6's at night (one at 3am and the other that wakes me up at 8am every morning)

Two Kip 7's throughout the day, one around 1pm and one at 4pm.

The second day, my daytime headaches dropped off and I only had the ones at night.

The Third day, I had none at all, but woke up with a Kip 2 or 3 on the 4th day, which was easily aborted with Capsaicin Spray and Red Bull

And that's been my sort of 'new' cycle - every other day, I'll get one at night or in the morning.

I have found however that if I take my usual 10,000 IU dose in the morning and then before bed, take another 5,000 IU dose, I am completely PF. I just need to remember to take it. I have no qualms about taking megadoses of D3 as I've taken daily doses up to 25,000 IU without any problems. Full Disclosure: I live in the suburbs of Chicago where we get almost no sunlight, and I work from my bedroom and generally live like a vampire.


Now, here's some information that isn't on the boards about D3, that I think is pertinent, or at least helpful.

First and foremost, D3 is Fat Soluble, so when you take your dose, make sure to eat something with a little bit of fat in it, so the D3 has something to bind with. Without fats, the D3 will mostly just float through you and do no good. I notice a big difference when I accidentally take it on an empty stomach.

I've been using D3 as a daily boost for my immune system, testosterone boost, and have seen incredible results. If I start to get sick at all, I take a 20 - 25,000 IU dose throughout the day and will completely avoid whatever cold or flu I was coming down with. I've seen a few people in the throws of a bad flu (coughing uncontrollably, faucet face, fever, the whole thing), take a megadose of D3 and be at 100% by the next morning. It's really wonderful stuff, and I take a large dose any time I feel anything at all coming on. I was really happy to find that it worked with my CH, and will continue taking it.

I guess I didn't mention before, but I am not currently taking any other supplements with the D3. I wanted to test to see what it could do on it's own, but will probably start supplementing with Omega 3 and a multi vitamin here soon.

Thanks CH! You guys have saved me!




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Re: 123 Days PF And I Think I know Why
Reply #717 - Apr 18th, 2012 at 11:47am
 
Hey Radar,

Welcome back and thanks for the update.  Information like this is important to all of us.  Like I've discussed many times...  the anti-inflammatory regimen with vitamin D3 is not a cure for cluster headache...  Those of us who have found this regimen effective in giving us an existence free of cluster headache pain still suffer from this disorder.

There are times when the cluster headache calendar clock triggering mechanism kicks in with extra strength, like the traditional start date for episodic cycles.  When this happens, and our 25(OH)D reserves are not sufficiently high, we become more susceptible to getting hit even while taking a previously effective maintenance dose of vitamin D3.

If you run down for another lab test for 25(OH)D you'll have a good idea where the tipping point is for your target level of 25(OH)D that you need to keep higher than to avoid any return of the beast.

The simple solution you've already started is to add another 5,000 IU/day to the existing daily dose vitamin D3 and continue it for a month or so...  then get another lab test for 25(OH)D.  That should be your target therapeutic level.

Splitting the vitamin D3 dose may help.  The overall process of metabolizing vitamin D3, cholecalciferol, into 25(OH)D then on to the active form of vitamin D3, 1,25-dihydroxycholecalciferol, is like a bucket brigade as it passes from the stomach through the liver and kidneys...

1,25-dihydroxycholecalciferol has a half life of only a few hours where 25(OH)D has a half life of several weeks, and the vitamin D3 has a half-life in the serum of only a few days. 

Keeping 25(OH)D level high also results in it being stored in body fat and other organs that serve as  reservoirs.  It's these reservoirs that keep us going if vitamin D3 intake drops as they release 25(OH)D back into the serum.

Assuming there's enough of the cofactors, increasing the intake of vitamin D3 results in an increase of all its metabolites...  and hopefully, a stronger therapeutic effect on CH.

Haste25, although there are no gold standard studies indicating a clear causal relationship between increased vitamin D3 and weight loss, there's plenty of circumstantial evidence. 

There are enough surveys around to say that nearly all overweight people are vitamin D3 deficient, i.e., 25(OH)D < 30 ng/mL and people with ideal body mas tend to have much higher 25(OH)D levels.

I don't think there's any question that vitamin D3 makes our bodies function better and that also includes a higher basic metabolism that can lead to increased physical activity with an attendant weight loss. 

In short, if you feel more energetic because of the vitamin D3, there's every reason to expect your weight set point will drop.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #718 - Apr 18th, 2012 at 3:20pm
 
Dexter wrote on Apr 18th, 2012 at 11:45am:
Since I have no insurance, I'm at the mercy of my Pediatrician brother for rx's and he scoffed at O2 saying I was too young and that I would become O2 Dependent. He also said that CH was the same as a migraine, so I guess that shows how much we should be trusting our doctors with this particular ailment. 


I think your brother should be aware that we're all oxygen dependent! As for that being a reason for not letting someone have access to it for CH is simply not credible. But that seems to go with the lumping of CH and migraine together. I get both and there is simply no comparison between the two.

For oxygen, have you explored using welding oxygen? It's just as pure as medical oxygen as otherwise welds would fail and lots of people here use it too.
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Re: 123 Days PF And I Think I know Why
Reply #719 - Apr 20th, 2012 at 1:39pm
 
Dexter,

Your brother's response to your request for oxygen therapy is out to lunch on one count and understandable on the other... 

Mike already hit the nail square on the head with his comments...  pointing out we're all dependent on oxygen...  I suspect your brother is confusing supplemental oxygen with oxygen therapy as a cluster headache abortive... 

Had your brother checked the standards of care for guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias at the following link: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register, he would have seen that oxygen therapy at a flow rate of 15 liters/minute is the first abortive of choice in the acute treatment of CH.

Pediatricians also get a special indoctrination on the use of supplemental oxygen therapy during residency that tends to make them averse to oxygen therapy... 

There was a dramatic increase in the number of premature babies following the end of WWII.  Many of these premature infants were so fragile, they were placed in incubators with high oxygen content... 

That saved the lives of thousands of these premature babies, but there was also a high incidence of these babies going blind and the effect of 100% oxygen on the premature retina was deemed the culprit.  This condition is called retinopathy of prematurity, or ROP. 

This problem was amerilorated slightly when physicians discovered that a lower concentration of supplemental oxygen was just as effective in saving the lives of these premature infants. This lower oxygen concentration also appeared to lower the incidence of ROP. 

More recent studies have shown  ROP is likely already present at birth and that it can actually be treated and controlled.  Moreover, recent research suggested that controlled amounts of supplemental oxygen might actually keep ROP from progressing from moderate to severe.

Ophthalmologists on the other hand, are usually up to speed on the use of oxygen therapy as a CH abortive.  My Navy ophthalmologist thought nothing of writing my last Rx for oxygen therapy at a flow rate of 25 liters/minute.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #720 - Apr 21st, 2012 at 12:01pm
 
Hey Batch

You are truly god like in many people's eyes.  To be able to take pain away from so many must be fantastic.  It appears that the increase in D3 has done it.  Have not gone for the 25OD test as the signs of pain have been alleviated.  In the last year I have spread the word as much as I can, I had a lengthy discussion with the consultant in charge of the local neurology dept, he was aware of the regimen but not really aware of its efficacy, so I gave him the link to this blog.

Kind regards

Radar
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Re: 123 Days PF And I Think I know Why
Reply #721 - Apr 22nd, 2012 at 5:10pm
 
Hi
In the Danish CH forum*, I just came across a "John Doe-theory" on CH that makes more sense to me than anything else I've read along the lines.

Simply put: CH stems from a a chronic or episodic local inflammation somewhere in the head - on the same side where the pain occurs.
The inflammation may for instance originate in the ear, or in a sebaceous gland and spread - causing blood vessels to dilate and perhaps also directly affect the trigeminal nerve. Stress, lack of sleep, compromised  immune system  may trigger the inflammation.

According to the theory: The reason O2 works is that it spontanously reduce the amount of Nitrogen Oxide (NO). Again according to the theory up to 1000 times of normal amounts of NO may be present in the area during inflammation.  The reason Prednisolon usually works is the same: Anti-inflammatory effect.

"Hauge" - the nick behind the idea - claims CH more often occurs during night beacuse the inflammation "works harder" when resting, than when physically active. He also says he found a sebaceous gland that was slightly raised, but appeared to be inward-oriented and therefore hard to find.  When removed, the CH disappeared.

Now - I'm sure there are numerous rational objections to this idea, but I like its simplicity. It is a 100% scientific theory as it is falsible. It is also 100% compatible with the D3 regimen Smiley  and may explain many of the strange features/characteristics of CH. However - it does not immediately explain why clusterbusting or Imitrex have effect.

Anyway - our aim should not be only to linger the CH pain, but to understand its origins. The mere fact that the The Anti-Inflammatory Regimen (TAIR) works for so many, may be a key finding.  I strongly believe scientific investigation of the effects of TAIR would shed light on the pathophysiology of CH.

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Plakatboy
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Re: 123 Days PF And I Think I know Why
Reply #722 - Apr 22nd, 2012 at 9:33pm
 
This is a great article. It definitely makes a lot of sense to me. I always thought that during A bout, something is badly inflamed and the body tries to heal it only to have it flare up again, thus the recurring headache.

I noticed that my last few bout were triggered by strong fumes ie new car or exposure to industrial cleaner. I thought once the part of the head is inflame due to the triggers, it takes weeks before the inflammation is resolved. I also notice that during a bout, the side of my head with the pain will have acne sores on the scalp. Most times the acne occurs near or at the part of head where it's most painful.
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Re: 123 Days PF And I Think I know Why
Reply #723 - Apr 23rd, 2012 at 10:58am
 
Interesting theory there.

Update: saw the Neuro last week. He also suggested splitting the D3+  (now taking half in the morning and half evening). Have been PF since (keeping fingers crossed)...although I did get clobbered last Sunday, so could be end of cycle Smiley

Keep up the good work here, all of you.

-Thanks, -dvb-
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« Last Edit: Apr 23rd, 2012 at 11:44am by -dvb- »  
 
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Callico
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Re: 123 Days PF And I Think I know Why
Reply #724 - Apr 23rd, 2012 at 10:49pm
 
Some hopeful changes.  I upped my D3 to 20,000 four days ago, about the same time as I went off an anti-inflammatory I was taking for a ruptured cyst.  That is important because it tends to bind Magnesium and Calcium.  Anyway, they are not gone, but I've not had anything above a K3 in four days.  Here is hoping!  I've not been able to get another blood draw, so I'm flying blind.  My wife is in fear I'll go toxic, but I keep trying to tell her I know what I'm doing, thanks to Pete. 

Keep up the good work!  I'll keep you posted as things progress.

Jerry
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