Sorry for posting on multiple subjects but the length of this cycle has me questioning everything.

I've been living overseas the last 10 years and for this cycle I have found a wonderful source of O2 that delivers me a 50L bottle the next day after calling. I go thru this large bottle in about a week with 2 normal 5L bottles as backup.

I've never gone thru a cycle so well supplied with O2 and as a result, I have never run out and my headaches have been kept moderate. Many have been aborted the first 5 minutes, many after 10-12 min, a few after a 15 min break than back for 5-10 min. Only 3 or 4 HA's (scale 7-8) I had to pace off and finish without O2.

My previous cycles (all 16 of them every 18 months) are normally 5-6 weeks max. but on average I remember more severe HA's. 

Today is the end of week 8. Now I had 4 PFDAN's just before xmas, got cocky and shut down the Verap too quickly and had some drinks. I'm assuming I am paying for this via a lengthened/new cycle.

However, I was wondering if the more moderate nature of my headaches over this cycle, due to the quick efficient pouncing on my O2 mask, has somehow caused the cycle itself to lengthen to make up for the difference. As if the beast needs a certain amount of feeding one way or another and eventually gets its due.

I suppose I'm just paranoid but after 8 weeks I'm tired and, like I said, questioning everything.

Anyone else had cycles lengthened?

Hi littlee,
The one thing we have learned about CH is that it changes. Just when you think you have control it will morph and throw you off kilter. It can change from cycle to cycle, and even each individual attack can be different from the last one. It can even change sides.

I used to have regular cycles, but for the last year or so I have had almost permanent shadows and mild ones, but still having cycles of more intense attacks. It may be coincidence but I have had 02 for the last year. That said, I prefer it this way as it's less painful than it used to be and more controllable.

However, prior to my getting 02, some cycles lasted 3 months, some lasted 2 weeks, and sometimes I had (and still do) "one offs" where I think a cycle is coming, but then it doesn't. As I said it changes. Maybe you were just due for a change.

I too am very lucky with my 02 supply and my heart breaks for all those who, for one reason or another, can't get it.  Where in the world are you living, and where are you originally from.

I don't suppose I've really answered your question, but I did see similarities between your CH and mine.
Maz.

Thanks Maz,

It's always nice to hear another opinion. I know I've been relatively blessed with cycles like clockwork every 18 months with only 2 exceptions since 1982 and verapamil doses (up till now) of 160mg being sufficient.

I guess I'll keep adapting (as if I have a choice). I'm on Day 10 of the D3 regimen so I'll keep some hope up for this. Nothing yet but I just got my blood results from this morning and my D levels are only 45.6. So I 'll keep working on getting them elevated >60.

Born in Detroit, Chicago since 1990, living in Sofia, Bulgaria on and off last 12.

By the way, the very first doctor that ever mentioned the word "Cluster Headache" to me was a Bulgarian doctor in 2004 I think it was. Went home in 2004 and searched CH, found this website, went through the symptoms and went HOLY SHIT, that's what I have. I ate so many antibiotics (and antihistamines) the previous 20 years I could cry.

Mark

I don't know what is available in Bulgaria but have you tried sumatriptan injections. May be called imitrex or imigran where you are (as in USA). It comes in pills but they take too long to be absorbed into your system to be much help. There is also a nasal spray which is a little better. But the auto injections are absolutely fantastic and will abort a big one in a few minutes, and I find the relief lasts longer than the 02.

They are very expensive if you have to pay for them, which luckily is not the case for me (good old british NHS), and I know americans often have insurance issues with them. If you can get them, it helps to get a few when you are not in cycle as this spreads the cost a bit, and also keeps you well prepared.

You can only use 2 per day, so I save them for when I'm out and stick to the 02 at home. I swear these two things, and this site have saved my sanity - maybe even my life as I have had some very dark times with this thing we have in our heads.

Keep up with the D3 regime. It works for about 80% of those who try it.Even if you are unlucky enough to be one of the remaining 20% it's still excellent for your health - as long as youkeep up the blood tests to make sure everything is balanced.

Don't bother to waste time and money on anti histamines and pain killers as nothing will help a CH, the only exception being that sometimes I'm left with a residual headache of the "ordinary" kind, probably due to the stress and lack of sleep, which a couple of "over the counter" headache pills will take care of.

Hope this helps. Keep coming back to let us know how you are doing, or just to rant if you need to. We're always here.

You'll probably get more satisfaction asking who will win the next Presidential eledction!

In my years of reading medical literatured I've never found information on your questioln which was worth saving. It's a world of speculastion.

I suspect that you might be helped by staying on the preventive (Veapamil, etc.) for seveal weeks after your last attack and/or, if you rapidly cycle (short internals between cycles) staying on the preventive 100% of the time. This is an approach which was common many years ago and there is no disadvantage, save $.

my neuro who is very into ch and on ouch uk good guy list reckoned too much 02 during cycle can extend the cycle ,
dont know if true

tangerinearmy wrote on Jan 20^th, 2015 at 8:43am:

my neuro who is very into ch and on ouch uk good guy list reckoned too much 02 during cycle can extend the cycle , dont know if true

BS! :-X

-Gregg in Las Vegas

tangerinearmy wrote on Jan 20^th, 2015 at 8:43am:

my neuro who is very into ch and on ouch uk good guy list reckoned too much 02 during cycle can extend the cycle , dont know if true

I gave away using all CH medications many years ago for exactly that reason. I'm not recommending it to others, but it sure worked for me.

Aussie Brian wrote, I gave away using all CH medications many years ago for exactly that reason. I'm not recommending it to others, but it sure worked for me.

Maybe your one of the lucky ones in a long term remission, and getting older in the tooth playing a major part in
keeping the  [smiley=evil.gif] at bay.

Hoppy.

Mark,

Stick with the anti-inflammatory regimen and the accelerated vitamin D3 loading schedule.  With a 25(OH)D serum concentration of 45 ng/mL, you're going to need another 350,000 IU of vitamin D3 to get your 25(OH)D serum concentration up to the target of 80 ng/mL.

As long as you're taking at least 400 to 600 mg/day magnesium and the rest of the vitamin D3 cofactors, you should be able to take 20,000 IU/day of vitamin D3 over the next three weeks or 25,000 IU/day of vitamin D3 over the next two weeks without any risk of vitamin D3 intoxication.  Just make sure you see your PCP or neurologist for a lab test of your serum 25(OH)D and total calcium at the end of the loading schedule.

There are several studies where youths and adults with a vitamin D3 deficiency were given a single oral dose of 400,000 IU, 500,000 IU, or 600,000 IU vitamin D3.  In every case, there were no indications of vitamin D3 toxicity indicated by a serum calcium concentration above the normal reference range and PTH concentrations dropped.

See attached file for details of the study where 35 youths were given a single oral dose of 600,000 IU of vitamin D3 elevating their serum 25(OH)D by an average of 60 ng/mL with no adverse reactions.

Loading Dose Guidance:
• Loading = repletion = quick replacement (previously known as Stoss)

• Loading doses range in size from 100,000 IU to 1,000,000 IU of Vitamin D3

• The size of the loading dose is a function of body weight

• Unfortunately some doctors persist in using Vitamin D2 instead of D3, which has been shown to have many problems

• Loading may be done as quickly as a single day, to as slowly as 3 months.

• It appears that spreading the loading dose over 4-20 days is a good compromise - not too fast, not too slow.

• Loading is typically oral, but sometimes by injection (I.M,)

• The loading dose persists in the body for about 3 months

• The loading dose should be followed up with continuing maintenance - typically 4,000 to 10,000 IU daily average

• Unfortunately many doctors fail to follow-up with the maintenance dosing.

• As about 1 in 300 people have some form of mild allergic reaction to vitamin D supplements, it appears prudent to test with a small amount of the exact form of vitamin D before giving a loading dose
   
Causes for a mild allergic reaction appear to be: (in order of occurrence)
    1) lack of magnesium - which can be easily added
    2) allergy to capsule contents - oil (powder does not appear to cause any reaction)
    3) allergy to the tiny amount of D3 itself (allergy to wool) (alternative: D3 made from plants )

See the following link for more details on vitamin D3 loading strategies and the studies involved:

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If you brows around this website, you’ll find that Henry Lahore has created a compendium of all things vitamin D.  It’s loaded excerpts and links to hundreds of RCTs including the most recent and many located behind the “pay to read” door most of us can’t access… 

There’s a column on the left of each page at Vitamin D Wiki that lists a growing number of medical conditions either prevented by taking vitamin D3 or treated with it to a high degree of efficacy…  In short this is where you can look up what ails you and how much vitamin D3 or better yet, the serum concentration of 25(OH)D and vitamin D3 cofactors you need to treat it.

Regarding changes in frequency of CH after starting oxygen therapy…  We conducted a pilot study of the demand valve method of oxygen therapy in 2008 with six men, one women, six chronic CH'ers and one episodic CH'er.

Each CH'er recorded the abort time and pain level at start of therapy for every CH attack over an eight-week period.  In all, they logged data on 366 aborts. 4 participants used demand valves and the other three used 0-60 liter/minute oxygen regulators and clusterO2 kits with an average oxygen flow rate of 40 liters/minute.  As both methods involved hyperventilating with 100% oxygen, it was no surprise that the average abort times at each pain level were the same with either method.

The following chart illustrates the benefits of oxygen therapy at flow rates that support hyperventilation with greater efficacy and lower abort times than a flow rate of 15 liters/minute.

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There are two things you can takeaway from this chart.  The first is oxygen therapy at flow rates that support hyperventilation result in higher efficacy and shorter abort times than a flow rate of 15 liters/minute.

The second is the higher the pain level at start of therapy, the longer it will take to abort the CH.  In other words, if you have oxygen therapy available, get on it ASAP at the first indication of an approaching CH.

We observed an interesting phenomenon where the frequency of CH attacks increased after start of this method of oxygen therapy.  This increase in frequency lasted to the fourth week then dropped rapidly.  By the eighth week, the frequency of CH attacks had dropped to less than at start of therapy.  All seven pilot study participants experienced this same pattern. 

The following chart illustrates this change in CH frequency as experienced by a male chronic CH'er participant.

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It's also interesting to note that the average weekly pain level at start of therapy and average time to abort dropped continuously throughout the 8 weeks of this pilot study.

With only one episodic CH'er in this pilot study, there wasn't enough data to establish any trends regarding a relationship between oxygen therapy and cycle length.  However, based on data reported by CH’ers using the anti-inflammatory regimen to prevent their CH, it appears there are several factors that can affect the time to respond to this regimen.  By inference, it’s also possible these same factors are responsible for the variability or unpredictable nature of CH.

For example, viral and bacterial infections as well as allergic reactions are associated with longer response times to this regimen.  Trauma and surgery have also been associated with longer response times.  All of these factors stimulate the body’s defense mechanisms with inflammation followed by an immune response. 

There are also several studies indicating the immune system is a major consumer of 25(OH)D,  and 1,25(OH)2D3, the active hormonal form of  vitamin D3,  as well as the enzymes needed to metabolize them.  Vitamin D3 deficiencies are also very common among people with autoimmune disorders. 

Simply stated, colds, flu, bacterial infections, allergies, trauma and surgery could easily be responsible for the unpredictable nature of CH including cycle length.

Hope this helps answer the mail.

Take care and please keep us posted.

V/R, Batch

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LasVegas wrote on Jan 20^th, 2015 at 10:31am:

tangerinearmy wrote on Jan 20th, 2015 at 8:43am: my neuro who is very into ch and on ouch uk good guy list reckoned too much 02 during cycle can extend the cycle , dont know if true BS! :-X -Gregg in Las Vegas

yes it MAY well be,there again for some it MAY not.we know not staying on 02 for long enough after stopping an attack can cause rebounds so who knows.
me i use 02

here is a recent report by someone who doesnt rate 02

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