Getting a bit worried

[tpos]

Hey all, so I’m Nearing the 4th week of my cycle, I’m eposodic. The first 2 weeks I was getting hit every 2-3 hours, they came fast and hard. Started the vitamin d regimen about 4 days into my cycle. A week later after no improvement (minus a few pf daytimes after micro dosing with blotters) I started the 12 day 50,000 IU d3 booster. I’m on day 10 of the booster and things this week seemed to be going amazing. I was sleeping more, wasn’t getting hit at all during the day. I was really convinced it was almost over. I was Getting weird dull pains of my left side (I’m a right sider this cycle) and my sinuses seemed to be a little off, but no cluster pain. I slept in today, till about 11. I bartend Thursday-Saturday nights so don’t fall asleep till about 3 am those nights. All the other nights I’m in bed by 11 and up by 9. And of course, I get hit at 11 this morning and a really bad one at 130 that is just fading away now (245pm). 

So, did I re awaken the beast by messing with my sleep schedule? I’ve been taking melatonin every night since I started the booster at 10pm, even if I’m at still at work. 

Also, the beginning of the week was stormy, low pressure (right?) and today is beautiful and sunny (high pressure, right?) does anyone have any experience with this? My sinuses definitely feel swollen and under pressure more when it’s nice out. I live in N.J. btw. 

Finally.. I’m self diagnosed, they started around when I was 19, I’m 28 now, but I haven’t had insurance since 17 so never got a confirmed diagnosis. I know this sounds like a no brainer, but should I be worried about anything else? I have all the symptoms of CH and all the abortives work (usually, lol). 

Thanks for all and any input. Pain free days to all!! 

[tpos]

Something I just thought of... might be looking for a connection too hard but I’ve had neck and shoulder problems (right shoulder, I’m right sided this cycle, maybe just coincidence?) and it seems like on days that I get hit worse or hard with headaches, are the same days my neck and shoulder are flaring up. Hmmmm....

[filacibin]

Hello tpos, your second post sounds like you have AURA! Does your neck feel like it's getting stretched like pulling on a piece of meat? And do you feel your right arm going clumsy and weak! If so it definitely sounds like AURA. I have had that for past 5 years into my 19th year suffering! .give it a quick look up on the net as I could be wrong in your case! As for your first post! All i can say to that is ,Well done with treating yourself without diagnosis! As I see it, I've been given bad drugs that have destroyed my quality of life by doctors in the past 19 years and I discovered the antidote was growing in a field 5 minutes away from me !that was 3 years ago so if I were you, don't get trapped in the medicine mincer!.

Take care and good luck 

Edited October 28, 2017 by filacibin
Spelling mistake

[tpos]

Hmm the only thing I can find when I google is about migraines with aura. Is that what you’re referring to? 

[xxx]

Tpos, All,

Conclusions from the 2008 survey of 1134 CHers by Dr. Todd Rozen, MD FAAN, that clearly apply to this discussion:

Some of the results from the United States Cluster Headache Survey provide new clinical information on the characteristics of CH.
1. Eye color is not predominantly hazel but rather blue or brown
2. Female CH patients do not have CH triggered by alcohol as frequently as men
3. Weather changes trigger CH in more than 35% of CH sufferers
4. Auras occur in about 20% of CH patients (which has been documented) but aura duration is shorter than that seen in migraine and female CH aura is very short at 5 or less minutes
5. Bilateral CH pain occurs in 8% of CCH patients
6. All CH preventives are found to be effective in less than 50% of the United States CH population and 70% plus of CH patients have not tried most of the currently recognized CH preventive treatments
7. In the United States 50% of CH patients are not currently seeing a neurologist

Take care,

V/R, Batch

[MoxieGirl]

Hey tpos,

I'm chronic, so not sure if something like a change in sleep patterns could trigger an episodic attack period or not, but if I mess up my sleep to much, then I'm sure to get an attack. I've learned I can have 1, maybe 2 late nights in a week and be OK, but no more.

Batch - re the survey.

I found a copy of the survey results here: https://ouchuk.org/sites/default/files/downloads/cluster_headache_survey.pdf

I wish the report gave more details, as it's quite vague. And wished there were a more up to date version of the survey.

For example, "Average time to correct diagnosis was usually less than one 1 year (25%) or 10 years plus (22%)".  But 22 + 25 = 47%. I presume the 3rd option was 1 year - 10 years, in which case that would be 53%, which is (the last time I checked) greater than 47%. So it feels like there are details missing. 

But there are also some really interesting things - like only 50% said alcohol was a trigger. I was always lead to believe it was much higher than that, like 90%. 

 

MG

[xxx]

MG,

The link you posted is to the abstract of this survey.  I was posting data from a poster presentation Dr. Rozen made at the American Headache Society annual meeting in 2009.  As one of the unlisted co-authors of this survey's questionnaire, I also have the raw data and took part in its analysis. The figures I posted above are as detailed and accurate as possible.

I understand your comments on "Average time to correct diagnosis" but the percentages in these two responses came from two separate survey questions which account for their totals being different than what you expected.  The rules we used in the analysis were to report directly "As Is" to avoid any post hoc bias, so did not allow us to "interpolate" then report.

Take care,

V/R, Batch

[amon10]

As a fellow episodic I wouldn’t put too much into your sleep schedule starting your cycle. I work swing shift all the time and the only thing certain for me is when I’m in cycle 80-90% of my attacks are coming during sleep. 

[xxx]

Amon10,

There's likely a good reason why 89-90% of CH attacks hit while sleeping if you're an ECHer in cycle or a CCHer...  even if you're working swing or graveyard shifts.   For starters, I've found several studies indicating the CH syndrome is pH sensitive.  More on this later...  Secondly, during sleep, our respiration rate, lung tidal volume and alveolar ventilation drop to their lowest levels while still on the good side of the air-grass barrier...  

Basic respiratory physiology tells us that under these conditions, our blood chemistry changes as follows:  The arterial partial presser of carbon dioxide (PaCO2) elevates significantly and at the same time our arterial partial pressure of oxygen (PaO2) drops significantly.  This combination represents a perfect storm for CHers. 

The high PaCO2, termed hypercapnea, translates to a drop in arterial blood pH below the normal range (7.32 to 7.42), making it more acidic in the chemical reaction where carbon dioxide, the byproduct of normal metabolism, combines chemically with water in the blood essentially creating carbonic acid as illustrated in the following chemical equation, CO2 + H20 <-> HCO3 + H.  Blood gas chemoreceptors in the medulla oblongata (brain stem) sense the elevated PaCO2 content and lower arterial pH then signal control centers in the medulla and pons to adjust the respiration rate, increasing it slightly, the heart beat to increase slightly and vasculature to dilate in order to increase the loss of CO2 from the lungs.  These are some of the basic and more rapid homeostatic mechanisms the body uses to maintain pH in the normal range.

The following chart illustrates the four phases/stages of sleep we go through on a cyclic bases during a typical eight hours of sleep.

While we're awake in a resting state, we have an average minute volume of lung ventilation with inspired air of 7.66 liters/minute.  During steady state Non-Rapid Eye Movement (NREM) sleep, our breathing is regular, both in amplitude and frequency.  Steady NREM sleep has the lowest indices of variability of all sleep stages.  The minute volume of lung ventilation decreases by 13% in steady stage II sleep and by 15% in steady slow wave sleep (Stage III and Stage IV sleep).  At Stages III and IV, the average minute volume of lung ventilation of inspired air drops to 7.18 liters/minute.  That's enough drop in the minute volume to increase PaCO2 by 3-7mmHg, shift PaO2 lower by 3-9mmHg and SaO2 drops by ≤ 2%.  The increase in PaCO2 translates to a drop in arterial pH to 7.32 and lower.  While that may not seem like much, it translates to a much lower pH in tissues throughout the periphery and in particular the nervous system.  That spells trouble for CHers with a hypersensitive trigeminovascular system as it sets the stage for the CH beast to jump ugly at the slightest provocation.

Where CHers get into more trouble is during REM sleep. This is where respiration rates become Irregular, breathing with sudden changes in both amplitude and frequency at times interrupted by apneas (stopped breathing) lasting 10–30 seconds.  The overall net affect is a drop in the minute volume of lung ventilation to an average of 6.46 liters/minute, 15% lower than the 7.66 liters/minute of air inspired while awake in a resting state.  This drives arterial pH even lower below 7.32 increasing blood acidity to the point it can easily trigger the CH beast to jump ugly.

Getting back to CH being sensitive to pH...   Several studies have found a lower than normal pH triggers the release of vasoactive intestinal peptide (VIP) from the gut and the release of calcitonin gene-related peptide (CGRP) from the dorsal ganglia.  Under normal conditions, for otherwise healthy people, this results in vasodilation to help increase the flow of CO2 to the lungs.  For ECHers in cycle and CCHers, it's a different story.  This is where VIP and CGRP trigger neruogenic inflammation and the CH beast to jump ugly giving us pain we know as cluster headache.  If you look at the sleep stage chart, you'll see this happens between an hour and two hours after falling asleep.  This same sleep stage pattern occurs three more times during the remainder of an 8 hour sleep cycle... Sound familiar?

That was a long-winded explanation why and when we get hit during sleep...  One of the better solutions to this problem for an ECHer in cycle and all CCHers, is to sleep in a recliner chair when the CH frequency is high, so the head is elevated 8-10 inches above the heart.  This causes the heart to work harder pumping blood up to the brain.  The increased work load translates to a slightly higher respiration rate keeping the PaCO2 and arterial pH closer to normal.  This lowers the potential for the CH beast to jump ugly while sleeping. 

When you do get hit, jump on oxygen therapy at flow rates that support hyperventilation, i.e., an oxygen flow rate of 15 to 25 liters/minute.  An oxygen flow rate of 40 liters/minute results in even faster aborts.  Alternatively, you can try the latest oxygen therapy procedure where you hyperventilate with room air for 30 seconds at forced vital capacity tidal volumes then inhale a lung full of 100% oxygen and hold it for 30 seconds.  Four to seven cycles like this are usually sufficient to abort a CH.  This procedure also consumes a lot less oxygen from 280 liters at a flow rate of 40 liters/minute down to 28 liters...

If you think about it... this method of oxygen therapy triggers the reverse in blood gas chemistry of what occurs during sleep.  Intentionally hyperventilating blows off CO2 from the lungs faster than it's generated through normal metabolism.  This causes PaCO2 to drop elevating arterial pH to 7.42 and above making it more alkaline.  The elevated pH causes blood hemoglobin to have a greater affinity for oxygen which elevates PaO2 even further and in the process, super-oxygenates the flow of blood to the brain.  This results in vasoconstriction and rapid oxidation of CGRP, the wonderful combination that aborts CH more rapidly and reliably than sucking oxygen from a non-rebreathing oxygen mask at 7 to 12 liters/minute.

An even better solution is to start the anti-inflammatory regimen CH preventative treatment protocol.  You can download a copy at the following VitaminDWiki link:

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

To date, readers of this VitaminDWiki website have downloaded 3,939 copies of this treatment protocol since 21 January of this year.

Take care and please keep us posted.

V/R, Batch