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Cycle Change (Read 1878 times)
Drew_Va
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Cycle Change
Jan 13th, 2011 at 11:20am
 
i've had these headaches a long time. 34 years at least. Almost always in the spring but this may be the third time I have had them in cold weather. 6-8 weeks is the norm with multiple headaches per day. They started in early November and stopped a few days before Christmas. Every other time I've had these when they stopped they were done for a couple of years.
They started again last week. 1-2 headaches a day. Not as severe as usual and they also do not seem to develop as quickly. It's more like a nagging pain that gradually increases until they get bad enough to take a shot. 2-3 hour duration of nagging pain and then they reach the "got to do something" point. I sent my O2 back last week (the day before the HA's started again). It wasn't working this time anyway.

Anyone else seen this type of change in their cycles before?
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Bob Johnson
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Re: Cycle Change
Reply #1 - Jan 13th, 2011 at 11:32am
 
Drew, I think we have been too deeply led to believe that CH are experienced in a quite fixed schedule. The literature says this is a defining characteristic but I seldom see a recognition that variation is also common.

There some emerging literature commenting on the role of hormones affecting CH and that, with age, the changes we normally experience may account for some changes, even, as we have long recognized, the cessation of attacks around age 60-70.

Short of a dramatic increase in pain, learning to live with the flow is not a bad state of mind....
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wimsey1
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Re: Cycle Change
Reply #2 - Jan 14th, 2011 at 7:34am
 
I think Bob has answered your question quite well. If you just need some supporting or corroborating evidence, then yes, I experienced this. At first, my cycles were pretty much confined to the summers. Then they morphed to the spring. Then they morphed to the winter and whenever. Then I went chronic. Now I'm chronic but relatively pain free because I can abort even the smallest shadow with Monster and O2 and am on a pretty effective (for me) cocktail of meds. It's frustrating, I know. Still, you can beat it or at least make it go to its own corner when the bell rings. Keep searching and trying, you'll find what works for you. Blessings. lance
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Guiseppi
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Re: Cycle Change
Reply #3 - Jan 14th, 2011 at 8:40am
 
What they said, really spotty and hard to figure in my teens, by my 20's they were like clockwork, 2 cycles a year spring and fall 8-12 weeks long 2 hits a day....hit my mid 40's they went all over the freaking board.

As Lance put it, enjoy the pain free time, ALWAYS  be ready to do battle. Smiley

Joe
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Samiam
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Re: Cycle Change
Reply #4 - Jan 20th, 2011 at 9:56pm
 
I too at the age of 17 would have them every May-Sept 1 hit a day.  As I got older and meds were introduced into the mix my cycles changed.  They would jump from Spring/Summer to Winter then Fall.

My cycle has now since having children changed again and I can go years without a hit but when I do get them I get multi hits a day were as before I would only get one a day but the cycle are longer.

Trying to figure this out will drive you nuts.  Coming to terms with it is the only way to get through the cycle. 

Blessings,
Sami


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Drew_Va
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Re: Cycle Change
Reply #5 - Jan 21st, 2011 at 8:03am
 
Interestingly enough, I experienced my first side shift last night. Always been a right sider but last night I had a left sider. Bizarre.

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Samiam
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Re: Cycle Change
Reply #6 - Jan 21st, 2011 at 1:05pm
 
That has also happen to me about 15 yrs ago.  During my cycle I got a right side hit (always on my left).  It happened only once and so far never again. 

What I am finding is I am having on top of my clusters I am also having secondary headaches which is driving me nuts.  I know it has something to do with the weather.

Sami
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Drew_Va
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Re: Cycle Change
Reply #7 - Jan 24th, 2011 at 8:32am
 
Samiam wrote on Jan 21st, 2011 at 1:05pm:
That has also happen to me about 15 yrs ago.  During my cycle I got a right side hit (always on my left).  It happened only once and so far never again. 

What I am finding is I am having on top of my clusters I am also having secondary headaches which is driving me nuts.  I know it has something to do with the weather.

Sami


As a followup, the side shift HA was the last I've had. Perhaps the cycle is finally over but if so it picked an odd way to end, not that I am complaining mind you.
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Guiseppi
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Re: Cycle Change
Reply #8 - Jan 24th, 2011 at 9:22am
 
Crossing my fingers for ya! Hoping it's done this go round, would strongly encourage you to continue your education so you're even better prepared next go round! Enjoy the remission. Smiley

Joe
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Samiam
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Re: Cycle Change
Reply #9 - Jan 24th, 2011 at 8:38pm
 
I pray you go into remission and are finally pain free.  We all long for that time.  Remember when your PF live your life to the fullest.

Blessings,
Sami
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Ant
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Re: Cycle Change
Reply #10 - Jan 25th, 2011 at 8:43am
 
Yes, I first started getting the HA's in my 20's in the Spring/Fall time as well like clockwork. They have since shifted and have become more sporadic. I am just getting over a cycle but Im not sure why they came so late in the winter months this time. The drastic weather changes could be a trigger but Im still not sure. I am still getting shadows but I have been on a large diet of Moutain Dew and that seems to help so far. I dread waking up in the middle of the night with a headache but its been 5 days with no dances with the Demon! I do have a question though, I have been extremely tired since the HA's have stopped , has anyone had this issue as well?
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Drew_Va
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Re: Cycle Change
Reply #11 - Jan 25th, 2011 at 2:27pm
 
Ant wrote on Jan 25th, 2011 at 8:43am:
Yes, I first started getting the HA's in my 20's in the Spring/Fall time as well like clockwork. They have since shifted and have become more sporadic. I am just getting over a cycle but Im not sure why they came so late in the winter months this time. The drastic weather changes could be a trigger but Im still not sure. I am still getting shadows but I have been on a large diet of Moutain Dew and that seems to help so far. I dread waking up in the middle of the night with a headache but its been 5 days with no dances with the Demon! I do have a question though, I have been extremely tired since the HA's have stopped , has anyone had this issue as well?


Can't say I am tired after the headaches are over. During the cycle for sure as I get hit almost exclusively at night and therefore lose a lot of sleep during a cycle. Once I am over the cycle and have had a few good nights sleep I usually find myself invigorated, probably because I am well rested but also because I am happy to be rid of the pain cycle again for awhile.
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Samiam
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Re: Cycle Change
Reply #12 - Jan 25th, 2011 at 8:29pm
 
When they say that "You can sleep when your dead" has never gone through a Cluster cycle.  I crave for the night I can go to sleep without the fear of jumping out of bed to run for the O2 and meds.

Many don't understand.  If you choice not to sleep because you want to party or stay up is one thing.  When you don't have a choice because when you fall asleep you are startle awake do to the beast is another.

Yes feeling like you just got run over by a Mac truck is common.  Your body has been in a fight and it's lasted for weeks.  Get some rest and your body should feel better.

Blessings,
Sami
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Ant
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Re: Cycle Change
Reply #13 - Jan 26th, 2011 at 2:48pm
 
Yes thanks! The past 2 days I have been dead tired but I have went to bed early the past few nights. Today I actually feel a whole lot better. I actually woke up happy and not half dead. Its good to be back to some sense of normalcy, until next time!
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bostondawn
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Re: Cycle Change
Reply #14 - Feb 1st, 2011 at 7:48pm
 
Sami, I can so identify with your posts -- you sound like me only much better -- I am cranky, tired and miserable right now but reading your posts remind me that I am not crazy!!  Thank you!  Thank God for all of you as no-one understands about this whole thing................

I started this epi back in mid-November and still getting hit pretty bad every night -- at least 2 if not 3 -- on top of sinus issues from the 02 and all day long just headache after headache.............I counted and it was 12 weeks last weekend -- I usually go for a season from the 1st day of the season to the last day of that season -- never knew what season though as it skipped around -- then went chronic for 7 years --- have no idea how I got through that but now I am 52 and went into remission 3 years ago until 11/10 -- thought and prayed they were gone....so sad they are back.

Anyway I'll keep reading it does lift my spirits!!  take care.
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Batch
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Re: Cycle Change
Reply #15 - Feb 2nd, 2011 at 3:02am
 
Drew,

Changes in CH cycles are quite common for both ECH and CCH sufferers.  A high cycle is characterized by an increase in the frequency, intensity, and duration of CH.  This can also make oxygen therapy less effective with longer abort times.  Why this happens was something that caught my attention so I've done a lot of research in an attempt to determine the cause or causes.

BTW, I think you just sent back the very best abortive available for cluster headache when you returned your oxygen therapy kit… 

The most frequent reasons why oxygen therapy fails to work properly is the flow rate was either too low or if it was high enough to support hyperventilation, folks were not following the right procedures for use and were breathing oxygen too slowly.

Were I in your shoes, I'd call the supplier and order up some more oxygen, this time with a regulator good for 25 liters/minute.  If they won't send you a regulator with that high a flow rate or don't have any in stock, buy one from outlets on the Internet or from eBay. 

A good CGA-540 regulator that fits the larger M-size oxygen cylinders with a 0-25 liter/minute selectable flow rate and DISS fitting for a demand valve will run $90 to $130.  Flotec Inc. makes two excellent CGA-540 regulators that feature 0-60 liter/minute selectable flow rates with barb and DISS fittings for $140 and $190.  They make these regulators to order and are the only manufacturer I've found that makes 0-60 liter/minute medical oxygen regulators. I have two of their InGage™ series 0-60 liter/minute regulators, one for my home oxygen therapy kit, and the other for my roadie M60.

I don’t get any kickback from Flotec and I've yet to hear any complaints about their 0-60 liter/minute regulators from folks who've followed my suggestion and purchased one.  I've posted photos of both below.

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I was averaging three attacks a day so kept three of the M-size oxygen cylinders on hand as a one-month supply.  The tally sticky on the cylinder indicated I got 30 aborts from one of these big hummers.  I also use either the O2PTIMASK™ kit or the Carnét oxygen demand valve to abort my CH.  Both methods work equally well and each has it's advantages.

This is the same regulator and oxygen demand valve that Dr. Rozen is using in his study of the demand valve method of oxygen therapy.

As far as oxygen therapy procedures go, a flow rate of 25 liters/minute is essential to support hyperventilation and higher flow rates will work even more effectively with shorter abort times.   You'll need flow rates this high in order to push your system into respiratory alkalosis.  Most folks know when they've reached that point because they start feeling the symptoms of paresthesia during oxygen therapy.  These symptoms include a slight tingling or prickling of the fingertips, lips, or back of the neck.  Some folks also experience a slight dizziness. 

These are all good indications the user is hyperventilating correctly and long enough to push their system into respiratory alkalosis.  Again, the minimum oxygen flow rate that supports hyperventilation is 25 liters/minute.  I use 40 liters/minute until the abort after an initial jump start flow rate of 60 liters/minute for up to a minute to push my system into respiratory alkalosis as fast as possible.

If you didn't experience any of these symptoms using oxygen therapy, your flow rate was too low or you were not breathing fast and deeply enough during oxygen therapy.  Exhaling completely with an abdominal crunch is important.  This is called forced vital capacity breathing and it will expel CO2 from your lungs as fast as possible.  I tell the folks I coach to "Squeeze till you wheeze" when they do the abdominal crunch when using this breathing technique.

This forced vital capacity breathing technique is simple and easy to do.  You can practice it now with room air.  Exhale forcibly with your mouth open and jaw dropped like saying the word "Haw" and when it feels like your lungs are empty, they're not, so do the abdominal crunch and hold the tummy/chest squeeze for three to four seconds until you hear a wheezing sound coming from your lungs for two to three seconds. 

This breathing technique will squeeze out a half to as much as a liter of additional breath from the lungs and this last volume of exhaled breath is highest in CO2 concentration because it's been in the lungs the longest.

After two to three seconds of wheezing, inhale as fully and as rapidly as possible then do the forced exhalation technique again and keep repeating.  If you're doing this correctly, you should start experiencing the symptoms of paresthesia in three to four breaths.

The other two most common reasons why oxygen therapy doesn't work as effectively as it should are a low arterial pH (too much acid) and some form of allergy that results in neurogenic inflammation, or a combination of the two. 

Both the low pH and neurogenic inflammation conditions result in, or are characterized by, vasodilation so make the cluster headache triggering mechanism (what ever that is) more effective and that leads to an increase in the frequency, intensity and duration of the CH as well as increased time to abort with oxygen therapy.  There are occasions where the increased time to abort is so long it appears oxygen therapy isn't working at all.

As I indicated earlier, I've done a lot of research and testing on myself on this topic and the simple solution that works best for me when I go into a high cycle is to take a combined buffering and anti-inflammatory regimen of minerals and vitamins. 

Thia regimen consists of two calcium citrate tablets that also contain vitamin D3, magnesium and zinc. I also take two Omega 3 Fish Oil softgel capsules (1000mg. to 1200mg. each) and 10,000I.U. vitamin D3 softgels.

Diet can also play a role in low metabolic arterial pH so when I go into a high cycle, I also eat less red meat and instead load up on cold water fish like salmon and cod, chicken or pork along with lots of green veggies.  I top my salads with lemon juice and olive oil, cut out the bread and lay off the sweets.

You can get all of the above mineral and vitamin supplements at Costco, Walmart or Sam's.  They carry similar brands with the same formula.  These supplements and vitamins are also available at most food stores.

I've been on the anti-inflammatory regimen since the 4th of October 2010 and have been pain free ever since...  My two oxygen therapy kits are in the corner gathering dust on the zip lock bags that hold the mask and oxygen demand valve.

As a side note, I'm not claiming vitamin D3 is the silver bullet that stopped my CH, but having said that, there are a growing number of studies on vitamin D3 deficiency and safe dosing limits well worth reading. 

Our skin generates vitamin D3 for free when exposed to direct sunlight and it can make as much as 10,000I.U. to 20,000I.U. of vitamin D3 with as little as 30 minutes exposure to direct sunlight on arms and legs.

However, the skin cancer folks have us smearing SPS 30 sun block all over exposed skin and although this practice has cut the incidence of skin cancer, it's had the unintended consequence of causing a vitamin D3 deficiency for many of us.

See the first following link (refers to researchers at the University Hospital Zurich who claim 10,000 IU vitamin D3/d is safe).

If you think you have a vitamin D3 deficiency, ask your doctor for lab tests that measure your blood concentrations of 25(OH)D, which is the circulating Vitamin D metabolite that serves as the most frequently measured indicator of Vitamin D status.  Most of these tests will indicate a normal range for this metabolite at 50 to 70 nmol/L, but some researchers are saying this is too low a normal range and that to be therapeutic, an even higher level is needed.

I've a good friend and fellow CH'er who also suffers from migraines and hemicrania continua.  He lives in Florida and finds that direct sunlight acts as a trigger for his HC so his neurologist prescribed a therapeutic dose of 50,000I.U. vitamin D3 a week in a single tablet.  He tolerates this dosage with no side effects and feels great.

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Also see the following link that cites a study saying 10,000 I.U. vitamin D3 is very safe.  Here researchers tested subjects with 10,000 IU vitamin D3/d resulting in a mean serum 25(OH)D of 215 to 220 nmol/L.  This study's results concluded this level of vitamin D3 dosing was also very safe.

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The following link takes you to an excellent article that discusses vitamin D3 safe dosage limits and how a dose of 10,000I.U./d vitamin D3 can be safe for some but become toxic for others if they are also routinely exposed to direct sunlight on arms and legs.

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As always, discuss mineral and vitamin supplements with your PCP or neurologist.

Take care,

V/R, Batch
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« Last Edit: Feb 2nd, 2011 at 3:53am by Batch »  

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