jasonc Posted June 22, 2011 Share Posted June 22, 2011 Hey everybody, I'm in a pretty tough cycle right now. Seems that I am only getting full blown attacks at night once I fall asleep. Usually 2 hours and my "visitor" shows up. Averaging 3-4 a night. Mainly shadows during the day. Sometimes a full blown attack. Anyway, how many here have multiple hits at night ? And, what is so special about nightime hits ? I've read about our circaidian clocks. Hypothalumus with seasons and time. Just looking for some otheres point of view(s) Jason Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted June 22, 2011 Share Posted June 22, 2011 During my last cycle before I was busting, I found that when aborting the wake up night hits with O2, they would basically come right back within an hour, or during really peak high cycle the O2 might not even abort the attack at all. So I threw my hands up and starting aborting them with 1/2 dose imitrex injections, which would buy me 3-4 hours before the next hit, then I'd try to stick strictly with O2 for the day hits. I may not have been optimizing my O2 use though - maybe I should've stayed on longer after a hit subsided, and I could've made more of an effort to balance my arterial PH (which is something that is likely automatically accomplished via the D3 regimen). As far as circadian/hypothalamus etc. is concerned, I think it's just because the beast likes to come out in the dark!  > I hope this doesn't seem like a *nag*, but if you haven't started on the melatonin before bed yet, that might be worth revisiting. I had tried 9 mg and it actually didn't work for me, but at that time I didn't realize that some people were taking it all the way up to 21 mg before they found relief. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted June 22, 2011 Share Posted June 22, 2011 I've found sleeping sitting up in a chair actually reduces the frequency and intensity of the night hits significantly. I guess something to do with blood pressure making them worse? The lower the head, the more the pain for me. Jeff Quote Link to comment Share on other sites More sharing options...
jasonc Posted June 22, 2011 Author Share Posted June 22, 2011 Thanks "ThatHurts". I was thinking about sleeping like that tonight. Thanks. Oh yeah, nice avatar ! Do I see hawaiian slings in the back ground ?? I will try the melatonin. Your not nagging. Not at all. Thanks for the help my friends. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted June 22, 2011 Share Posted June 22, 2011 I will try the melatonin. Cool. Unfortunately it can take a week to kick in, which admittedly sucks, because a week in high cycle tends to = an eternity. Quote Link to comment Share on other sites More sharing options...
les genser Posted June 23, 2011 Share Posted June 23, 2011 Night or sleep hits are completely mediated by the hypothalamus; this is largely why usually reliable aborting methods fall short and boomerang drugs like triptans do more mischief. Inscribe this on stone for yourself: Nothing that does not directly act to alter the cycle of the hypo has a pissant's chance of relieving your headache when it starts like this, and it truly does not matter whether you do this or that differently, it will come back because you haven't touched the cause. Clusters start two ways, outside in and inside out. Outside in is the progression of "shadows", or fibromyalgia-type pain in peripheral areas (neck, shoulder, jaw, etc) which escalates into a full attack, involving the hypothalamus eventually. These are the ones we can abort, and they commonly occur day/evening. Then there are the inside out variety which originate in the hypothalamus. These can occur during the daytime; the came out of nowhere hits perhaps preceded by a hot flash that kip up to holy shit land in minutes. These are the notorious night hits. They come on schedule like a Satanic Amtrak. Whatever your pattern is, will be reliable. Mine was two hours, almost to the minute. Fight it off, back to sleep.. two hours. And so on. Everyone has there own version of this. My own personal but informed bias is that melatonin is ineffective; it affects sleep patterns but that is not the problem. Altering your pH, ditto. For night hits, alter your hypothalamus. Step one: Don't piss it off; watch the rebound causing drugs. Step two: Busting encourages your hypo to reset itself by rearranging the quality and quantity of its receptors. Licorice root in a different way (it is a SSRI) achieves the same thing. Dynamic equilibrium, balance in the HPA axis, no headache. Especially the inside out hits. Many people have related to me that the licorice root was particularly good at stopping the night hits; I know that was true in my case it totally shut them down and I had lived in fear of them seemingly forever. Use it with the skullcap tincture and you will sleep well. Quote Link to comment Share on other sites More sharing options...
les genser Posted June 23, 2011 Share Posted June 23, 2011 An addendum, because once I start thinking about this stuff I can't seem to stop: There is a natural but annoying tendency among people in pain to jump at solutions and drop them just as quickly when they don't yield instant results. The operative question is of course, why don't these things work for me?. Part of the answer is in the actual physical structure of the brain. Psychiatric drugs (antidepressants, SSRI's, etc.) of the type routinely yet stupidly prescribed for cluster patients alter the actual number and character of receptor sites in the hypothalamus and other locations. The organism attempts to compensate for this, which is why removing those drugs is frequently such a problem. Compensatory behavior in the body in response to triptans, verapamil, etc. leads directly to rebound, which is one type of compensation everyone is familiar with. The residual damage done by (particularly) psych meds is a giant shit storm that is soon to break in the popular consciousness; simply doing some casual googling of the subject will frighten you, and thats good. My point is that most people who have been through the medical mill are carrying damaged hard drives that need time to heal and normalize. If you spent 30 years eating McCrap you would not expect to look like an underwear model after a week of dieting. Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 23, 2011 Share Posted June 23, 2011 My own personal but informed bias is that melatonin is ineffective; it affects sleep patterns but that is not the problem. Altering your pH, ditto. Les, do you have an idea of why the D3 regimen, which is aimed at altering pH (or at least tested by way of altered pH), seems to work so well for so many people, for lasting periods? And for that matter why oxygen, which doesn't affect the hypothalamus (does it?), works? Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted June 24, 2011 Share Posted June 24, 2011 If you spent 30 years eating McCrap you would not expect to look like an underwear model after a week of dieting. I love it!!! Hey where's my Big Mac....? Does this Hypothalimus make me look fat? Jeff Quote Link to comment Share on other sites More sharing options...
les genser Posted June 24, 2011 Share Posted June 24, 2011 I cannot render any opinion regarding the vitamin regimen. I can only point out that quantities of any substance in excess of what the body can immediately use (other than sugars which are converted to fat and stored) are excreted, so I don't think the megadose thing is strictly speaking useful. The mechanism by which O2 works is exceedingly simple. High oxygen concentrations act as instant vasoconstrictor, narrowing vessels and restricting peripheral capillary blood flow. Lots of CH pain is caused by swelling tissues (capillary flow) reacting to nerve activity (either hypo induced or triggered). This starts a loop in which blood vessels themselves swell up (edema) in order to push back against swollen tissues to maintain their flow, causing yet more pain. Are we having fun yet? The oxygen shorts out this loop. Thats why it works best when used before the whole carnival starts up. This, by the by, is the theory behind triptans, which are also fundamentally head vessel vasoconstrictors; the difference is that O2 clears your system in about thirty seconds with a relatively low probability of rebound. Triptans are nasty chemicals and the brain does not enjoy them, and they don't work globally (in the body) as oxygen does. My point about the hypothalamus was that no therapy that does not directly affect the hypo is going to stop night hits (from happening), which are directly mediated by the hypo. Aborting is a whole different thing. Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 24, 2011 Share Posted June 24, 2011 I cannot render any opinion regarding the vitamin regimen. I can only point out that quantities of any substance in excess of what the body can immediately use . . . are excreted, so I don't think the megadose thing is strictly speaking useful. Thanks, Les . . . and to be clear, the vitamin D3 regimen does not involve "megadoses," at least as I understand that term. I'm not sure what would constitute a "megadose" exactly, but the Omega3 and calcium citrate levels are well within recommended daily limits, and the D3, while higher than the RDA, is very, very far from a toxic level. The D3 level recommended for ending a cycle is 10,000 international units, and the amount used as a possible preventive is 5,000 IUs, whereas the "toxic" level of D3 is generally (though not universally) agreed to be reached when about 40,000 IUs are taken continuously over a period of several months. 20 minutes of full body exposure to sunlight can produce the equivalent of at least 10,000 IU of vitamin D3 in fair-skinned people, so many people who are active outdoors get considerably more D3 than this regimen calls for. One can buy capsules of 50,000 IU of D3--now, that seems like a megadose! Quote Link to comment Share on other sites More sharing options...
les genser Posted June 24, 2011 Share Posted June 24, 2011 Now you know why I can't render an opinion. My expertise with vitamins ends with the one in powdered toast. I am very curious as to the nature of the mechanisms involved in that D3 regimen, though. Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 25, 2011 Share Posted June 25, 2011 Les, you wrote: >>>I am very curious as to the nature of the mechanisms involved in that D3 regimen, though.<<< A diligent read-through the D3 thread at ch.com offers some glimpses of Batch's theory about why it works. I'm going to paste a copy of one message from Batch here. It's not completely lucid to me, but it gives hints (that raising arterial pH promotes vasoconstriction) and interesting evidence. There are other discussions within the thread, which begins here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0 By the way, Les, Batch is, like you, extremely generous with his time and non-dogmatic about what he is learning. He's very open to being contacted by email or by Skype, and I think you two might enjoy communicating. Selfishly, I'd love to benefit from the interaction of your mind and his. Batch's post is below. Unfortunately, his chart, which is pretty interesting, doesn't show up. You can see it here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/100 >>>>>>In an attempt to characterize the role of arterial pH in the pathophysiology of cluster headache triggering and abort mechanisms, I conducted a small test by measuring the pH of my saliva before a cluster headache and five minutes after an abort with oxygen therapy at flow rates that support hyperventilation. I also did this over a two-week period to see if there were any trends without any overt change in diet. I started by collecting saliva pH measurements three times a day as an analog of arterial pH in order to generate a daily average. I then measured my saliva pH after awakening with a cluster headache and again following the abort with this method of oxygen therapy plus 5 minutes to allow for the saliva pH to equalize with arterial pH. The results of this two-week test are illustrated in the graphic below. [see graphic here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/100] The green line is my daily average saliva pH computed from measurements taken in the morning prior to breakfast, mid-day prior to lunch, and in the evening prior to going to bed. I rinsed my mouth with water and waited 5 minutes prior to each of these pH measurements to ensure I minimized the effect of any contaminants that could skew the results in one direction or another. For example if you take a swig of Coke or Pepsi then take a saliva measurement it will read very acidic with a low pH. The red dots and lines in the above graphic represent my saliva pH measurements taken as soon as I awoke with a cluster headache and the blue dots and lines represent the saliva pH measurement taken 5 minutes after the abort with oxygen therapy. All the cluster headaches occurred while sleeping and were between pain level 3 and 4 on the 10-Point headache (Kip) pain scale. I aborted all of them with oxygen therapy at flow rates that support hyperventilation (35-40 liters/minute) in 3 to 4 minutes to a pain free state. I also added pulse oximetry readings starting on Day-7 taking readings at the same time as the saliva pH measurements. The results are what I expected. I suspect if I would have had use of a capnometer, I would have seen significantly higher ETCO2 readings than normal upon awakening with a cluster headache. I also expect these ETCO2 reading would be clearly higher than after the abort with oxygen therapy at flow rates that support hyperventilation. The reason for the low ETCO2 readings following an abort with this method of oxygen therapy is simple.  This method of oxygen therapy casts of CO2 faster than the body generates it through normal metabolism. Days 5,10, and 11 I had no CH. During the evening of Day 14 I had three CH. This coincided with the day where my daily average saliva pH was lowest. As you can see from all of the nights where I had a cluster headache this method of oxygen was able to elevate the pH of my saliva on every attempt. Granted this data is clearly anecdotal with me being the only study subject. Having said that, the data and results were consistent with what we expected. Influencing systemic pH with diet and calcium citrate supplements is a horse of a different color as this process is largely metabolic in nature so it occurs at a much slower pace taking several hours where elevating arterial pH with hyperventilation takes only a few minutes. There's enough medical evidence from a few studies to suggest calcium citrate and citric acid from lemonade or limeade acts as a buffer on the stomach's gastric juices and contents to raise their pH from 2.0 up to a pH of 4.9. There are also a sufficient number of papers claiming a diet of alkaline forming foods can raise systemic pH. See the following link: http://www.naturalhealthschool.com/acid-alkaline.html Ultimately, anything that can raise systemic pH to the high end of the normal pH of 7.35 to 7.45 or above should stimulate vasoconstriction and that should help lessen the frequency and intensity of cluster headache. Take care, V/R, Batch <<<<< Quote Link to comment Share on other sites More sharing options...
jasonc Posted June 25, 2011 Author Share Posted June 25, 2011 good morning all !!! And yes, it is a good morning ! Just an update. I started D3 a few days ago. Thursday night, I was awoken one time. Real mild HA. A little O2, a presto gone. Was able to get 6 hours of sleep. Last night, same thing. Awoke with a little HA. Got a little O2 & some redbull. Gone in a short time. Went back to bed. So, something is working. I want to thank the people here from the bottom of my heart with the information and guidance they have shared with me oveer the course of week.THANK YOU. Hopefully we can go a third night tonight. Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 25, 2011 Share Posted June 25, 2011 Great news, Jason. Here's to a third good night, a fourth good night, a fifth good night, and many, many, many more. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted June 25, 2011 Share Posted June 25, 2011 Man that is FANTASTIC news!!! [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] Yes yes yes YES!! [smiley=smiley.gif] Quote Link to comment Share on other sites More sharing options...
dereksgirl Posted June 28, 2011 Share Posted June 28, 2011 no therapy that does not directly affect the hypo is going to stop night hits (from happening), which are directly mediated by the hypo. Aborting is a whole different thing. I am very curious as to the nature of the mechanisms involved in that D3 regimen, though. I am too Les! I thought I'd share my non CH experience with VD3, its been making me wonder... A couple months ago after recognizing my 4yr deficient, we started giving him the liquid form from costco. He loved it and and would drink as much as we would allow him, so he had some very high doses. Nothing. Then about 6 weeks ago I started to feel an extreme fatigue return that I had experienced after my last pregnancy. (15 months ago)I had had my blood checked and was VERY low on VD3, my level was 23. I would literally drop to the floor in tears, not sure I could even crawl to my bed or the couch. (1st time I had ever had that checked or thought about it-lucky for me I was seeing midwives instead of docts or I probably would have been told it was my iron levels ;D) Anyways - so I knew the feeling and started taking the VD3 I had bought per Batches regimen for Derek (who has ECH). I also started to give it to my 4yr old, surprisingly he had no problem swallowing the pills and likes taking them (he is reading this right now and has reminded me that I don't have a 4yr old - he turned 5 this month ;D ;D ;D) What I expected was for our "tiredness" to go away (and Josiah's "hurting scalp" that I didn't know until reading one of Batches posts is a sign of VD3 deficiency). What I didn't expect was for both of our sleeping patterns to be completely corrected. Josiah has ALWAYS had a hard time staying asleep. Since he was 2 and out of the crib he would get up and rock in his chair or go down and rock on the couch. (before then he would sit in his crib and bang his head. He broke 2 baby swings with his excessive banging. If we had him in the play pen he would bang so hard it would move across the room. He always had a knot on the back of his head. We have had him checked for autism-he really is perfectly normal besides this one weird trait) He always bangs his head back and forth when he is tired. He also would always be awake by 5am or sometimes earlier. Needless to say he was exhausted and jittery through out the day. Since being on VD3 he is sleeping in till about 7 am every morning - has not complained of his scalp hurting and we have not found him in his chair or on the couch... It has had the opposite effect on me. I have ALWAYS had a very hard getting up in the mornings (we home school so can start our days later) It has always bothered me (and my hubby-I can be REALLY hard to wake up :-/) but who can change when they wake up? Thought I was just a night owl. But since being on high doses (3-6000mg/day) My "clock" has reset all on its own. I have waken up at 5:30-6:00 every single day for the last 3 wks. I remember this happening 15 months ago when I doses on the VD3, but chocked it up to "more energy" as I had not found this sight and was not aware of the link it might have with the hypothalamus...but this time I wonder if the VD3 is doing more than just affecting the blood vessels, it seems to be having a direct affect on our internal clock... PF wishes to all, -DG Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted June 28, 2011 Share Posted June 28, 2011 Very interesting DG, thanks - good to hear that D3 is helping the whole family! Do you find that you're getting enough sleep, or are your 5:30 - 6:30 wake up calls actually earlier than planned/hoped for? Quote Link to comment Share on other sites More sharing options...
dereksgirl Posted June 28, 2011 Share Posted June 28, 2011 Hey Jeebs, Does a pregnant 40yr. old home schooling mother of 6 ever get enough sleep? ;D ;D ;D I am glad for the earlier wake up time. I get so much more accomplished in the day. I still seem to be a "night owl" so it doesn't matter if I go to sleep late (11 or 12, 1am) I am still wide awake between 5:30-6:30. I feel sleepy in the mid afternoon. I am going to start adding melatonin at night and see if that balances out the other end of it for me... I am curious to see if what I thought was "just the way I am" has really been a system imbalance all my life... Quote Link to comment Share on other sites More sharing options...
jasonc Posted June 29, 2011 Author Share Posted June 29, 2011 Just an update about my condition. I started D3 last week. Headaches went away one (1) day after started regime. Went three days PF ! Well, the SOB came back on Sunday. All night time hits.3 a night again. Currently I am taking 15000IU of D3. This morning, I dropped it down to 10000IU. My scalp is so sensitive right now. Telling me from past history, I'm still in cycle. URGH ! Going to stick at at it. Waiting for my "busting material" to show up. Man I dislike the slow postal service. Trying to keep spirits up. We will see what happens today/tonight. Work right now is VERY stressful. Trying to cope with that. Anyway, just an update. Everybody have a PF day ! Jase Quote Link to comment Share on other sites More sharing options...
jasonc Posted June 29, 2011 Author Share Posted June 29, 2011 and to top it all off, I puulled my back out here at work on Sunday !! When it rains it pours. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted June 29, 2011 Share Posted June 29, 2011 Does a pregnant 40yr. old home schooling mother of 6 ever get enough sleep? No. A mother of SIX can't possibly! Whoa I missed or forgot that part of your profile! I hope this D3 thing continues to provide energy because you can undoubtedly use it! Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted June 29, 2011 Share Posted June 29, 2011 the SOB came back on Sunday I puulled my back out here at work on Sunday !! When it rains it pours Yep if the beast is in town, when it rains it pours and when it pains it ROARS. > Stoopid jinx - almost every time someone dares to report a PF break, boy that just perks Mr. McBeasty's ears right up and he comes lunging back in. > :( :'( I'm trying to remember Jason whether you're taking the other components of the D3 regimen (of which I'm not really sure just how mandatory they are) - the calcium and oil and stuff? Quote Link to comment Share on other sites More sharing options...
jasonc Posted June 30, 2011 Author Share Posted June 30, 2011 Morning. Yup, taking 3000mg fish oil/omega 3. 250mg of magniesum. And calcium citrate. Maybe I just need some time for everything to get "settled" I dont know....Still at it though. I did however pick up my guitar last night for the first time in weeks. Felt good Quote Link to comment Share on other sites More sharing options...
Guiseppi Posted June 30, 2011 Share Posted June 30, 2011 Oh for heavens sake don't let the beasty take your guitar time away, that's just wrong! Joe Quote Link to comment Share on other sites More sharing options...
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