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Ilya K

Nausea with D3 Regimen & Cofactors

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And the Target Bulls Eye? Seems like the remaining one used a peacock. 

Yes, I used to sit and stare at the symbols on Saturday morning waiting for the cartoons to begin! :) 

Here's a bad one. I also remember waiting at night for programming to start! We watched one that panned in thru a keyhole. That was pre Mickey Mouse Club days for sure! It began programming about 6pm I think. And went off about 10pm.

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2 hours ago, CHfather said:

Yes, from here. And he responded by PM to me here.  I wasn't asking him about Ilya K's specific case, but about a good link to the D3 regimen, since the old one wasn't working. I have changed the links in the pinned posts.

(Can't type "Ilya K" without thinking about David McCallum in "The Man from UNCLE." Ilya Kuryakin.  A very old-time TV reference.)

Haha - yeah, I am Russian, so that would be why the names are so similar :)

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Hey Guys,

Typically how long till the Vitamin regimen busts the cycle? I have been on it for almost 10 days (granted at the beginning I did not take as much D3 just to see how my body would react). The pain is a pretty consistent 2 throughout the day, getting to at most maybe a 3 around 11. Is this normal? It's like I'm always aware of the area near my right eye and eyebrow. 

P.S. It doesn't seem like I've ever had clusters at night and sometime they vary time-wise. Also - people describe them as the worst pain humanly possible - I don't think mine have ever gotten to that extent. I'm worried it may be something else, but the symptoms align with clusters. The fact that the headache isn't year-round, is unilateral (95% of the time), and it focused around the right sinus/right eye area. MRI & CT also came back negative.

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the pain will vary from one to another we all tolerate pain different so the fact that you do not think yours are as bad does not mean they are not clusters. Just hope that they never get that bad. After I started busting and got on the D3 my pain levels dropped and the length they last is shorter but they are still clusters and still fun to deal with. 

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Well, constant lower-level pain with occasional increases in pain is often associated with a CH "lookalike" condition called hemicrania continua. You might look into that.  https://www.ninds.nih.gov/disorders/all-disorders/hemicrania-continua-information-page 

You might also be having CH with "shadows."  There is some information in this file about treating shadows (ginger, mostly): https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

As for the D3 regimen, how long it takes to have a strong effect varies greatly (surprise, surprise).  10 days is rarely enough.  It depends on where your D level was when you started, how much you load, and what D level you personally need to hold off CH.

A minor terminology issue.  What you said about "busting the cycle" was completely fine and completely understandable, but the term "busters" in the name of this website refers to the process of treating CH with psychedelics, so we usually reserve the word "busting" for referring to that specific process, which you can read more about at the file I linked you to above and also (same content) in the blue banner for "new users" at the top of the page.

 

 

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53 minutes ago, CHfather said:

Well, constant lower-level pain with occasional increases in pain is often associated with a CH "lookalike" condition called hemicrania continua. You might look into that.  https://www.ninds.nih.gov/disorders/all-disorders/hemicrania-continua-information-page 

You might also be having CH with "shadows."  There is some information in this file about treating shadows (ginger, mostly): https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

As for the D3 regimen, how long it takes to have a strong effect varies greatly (surprise, surprise).  10 days is rarely enough.  It depends on where your D level was when you started, how much you load, and what D level you personally need to hold off CH.

A minor terminology issue.  What you said about "busting the cycle" was completely fine and completely understandable, but the term "busters" in the name of this website refers to the process of treating CH with psychedelics, so we usually reserve the word "busting" for referring to that specific process, which you can read more about at the file I linked you to above and also (same content) in the blue banner for "new users" at the top of the page.

 

 

Wow, what an exorbitant amount of useful information - thanks CHFather! HC sounds very similar to what I'm experiencing, except for the seasonal nature of this beast. Upon further research it seems as though it could indeed be seasonal, I'll call my Neurologists office on Monday and see if they can prescribe some indomethacin. 

Is there any evidence behind the D3 regimen helping with this condition? Also my apologies for using the incorrect terminology.

Also, you say in your post that the pill form of sumatriptan is virtually useless but the one time I did use it, it definitely helped me. Which may be another clue.

The odd thing is caffeine (red bull) absolutely helps as well, along with naproxen at any sign of an upcoming episode. So now I'm stumped again haha.

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We have had enough anecdotal information here for many years now to be confident that it helps most, and is a game-changer for many.  You can trust me that when it was first suggested here that a D3 regimen was helping people, there was a vast amount of skepticism.  Batch has carefully tracked it for many years, and his data drawn from hundreds of users (which I think are presented at the external link I provided) are very persuasive.  

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16 hours ago, CHfather said:

We have had enough anecdotal information here for many years now to be confident that it helps most, and is a game-changer for many.  You can trust me that when it was first suggested here that a D3 regimen was helping people, there was a vast amount of skepticism.  Batch has carefully tracked it for many years, and his data drawn from hundreds of users (which I think are presented at the external link I provided) are very persuasive.  

Perfect, so I have a few more questions about HC and the D3 Regimen:

  1. Do you personally know of post or person with hemicrania continua so that I can ask them if the D3 regimen worked or what alternative treatment worked for them? I was reading that indomethacin is the primary treatment, which is basically a strong NSAID - and after a while those would do a number on my stomach.
  2. Why is the maintenance dose 10k IUs if that supposedly raises your 25 OH D by 1ng/ml?

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I have been on it for at least 5 years now. It has been a huge help!! The 10,000/day keeps me at about 103-105ng/ml year round. I used to drop it down to 5,000 during the gardening months when I was in the sun a lot. Now the sun sets off my head, so I don't get out there in the heat of the day anymore. My blood work will be repeated next month and I don't expect my levels to have changed much. I am not sure about the raising of the blood value. To date, 10,000 has worked out very well for me.

If I want to see if it is really working I just need to miss taking it for two days. Then the beast returns!! Normally the vitamins are missed if my house goes crazy or something. I only test drove it once on purpose! :) 

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28 minutes ago, Ilya K said:
  • Do you personally know of post or person with hemicrania continua so that I can ask them if the D3 regimen worked or what alternative treatment worked for them? I was reading that indomethacin is the primary treatment, which is basically a strong NSAID - and after a while those would do a number on my stomach.
  • Why is the maintenance dose 10k IUs if that supposedly raises your 25 OH D by 1ng/ml?

I realize that I might have misread/misanswered your initial question from a few posts ago. The answer from me that you quoted above was related to CH, not HC.  I'm sorry if I unintentionally gave you wrong information because I misunderstood the question.

Regarding the two questions above . . . . 

Question 1. No. That would be a question for Batch, who has been studying the D3 regimen across a range of patients, and may have seen some HC cases.  People who come here and turn out to have HC don't generally stay.  If you put "hemicrania" in the search bar at the top of the page, you'll see what's been said about it.  Regarding alternatives, what we have observed -- which might or might not make it reliable -- is that people with HC might get temporary relief from busting, but it doesn't last.  Beyond that, if you read around on the web you'll see a lot of alternatives mentioned, in part because Indo is indeed hard for some/many to tolerate. There's this, for example: "If people cannot take indomethacin, there are case reports of gabapentin, melatonin, topiramate, verapamil, onabotulinumtoxinA and occipital nerve stimulation for treatment of hemicrania continua." https://americanmigrainefoundation.org/resource-library/understanding-migrainehemicrania-continua/

Question 2. Again, really a question for Batch. I'm not familiar with the data you're referring to.  It's my strong impression that people who take the 1okIU/day gradually raise their D level significantly. There is ultimately some concern about taking too much D3 (particularly if it is taken without all the cofactors), and maybe that is a reason for taking "only" 10kIU/day after the loading period, but I really don't know.

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12 minutes ago, CHfather said:

 

 

I realize that I might have misread/misanswered your initial question from a few posts ago. The answer from me that you quoted above was related to CH, not HC.  I'm sorry if I unintentionally gave you wrong information because I misunderstood the question.

Regarding the two questions above . . . . 

Question 1. No. That would be a question for Batch, who has been studying the D3 regimen across a range of patients, and may have seen some HC cases.  People who come here and turn out to have HC don't generally stay.  If you put "hemicrania" in the search bar at the top of the page, you'll see what's been said about it.  Regarding alternatives, what we have observed -- which might or might not make it reliable -- is that people with HC might get temporary relief from busting, but it doesn't last.  Beyond that, if you read around on the web you'll see a lot of alternatives mentioned, in part because Indo is indeed hard for some/many to tolerate. There's this, for example: "If people cannot take indomethacin, there are case reports of gabapentin, melatonin, topiramate, verapamil, onabotulinumtoxinA and occipital nerve stimulation for treatment of hemicrania continua." https://americanmigrainefoundation.org/resource-library/understanding-migrainehemicrania-continua/

Question 2. Again, really a question for Batch. I'm not familiar with the data you're referring to.  It's my strong impression that people who take the 1okIU/day gradually raise their D level significantly. There is ultimately some concern about taking too much D3 (particularly if it is taken without all the cofactors), and maybe that is a reason for taking "only" 10kIU/day after the loading period, but I really don't know.

Ok, I’ll wait for Batch’s responses. Been feeling better and better every day anyways. Taking melatonin and the on day 11 of Vitamin regimen. 
 

Some people also had luck with CBD oil so we’ll see. Maybe I can try the indomethacin per the doctors orders, just to confirm it is indeed this. I don’t believe it’s the Continua version because I’m only getting them in bouts of about 4-6 weeks. 

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21 hours ago, Ilya K said:

Ok, I’ll wait for Batch’s responses. Been feeling better and better every day anyways. Taking melatonin and the on day 11 of Vitamin regimen. 
 

Some people also had luck with CBD oil so we’ll see. Maybe I can try the indomethacin per the doctors orders, just to confirm it is indeed this. I don’t believe it’s the Continua version because I’m only getting them in bouts of about 4-6 weeks. 

Any word from Batch?

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On 10/18/2019 at 12:49 PM, Brain on fire said:

Fortunate households had all 3 networks & a kid for a 'remote'. Really fortunate one's had another kid to stand with one hand on the rabbit ears. lol

yes! my poor baby brother.

@spinythe peacock was cbs...

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22 hours ago, Ilya K said:

Ok, I’ll wait for Batch’s responses. Been feeling better and better every day anyways. Taking melatonin and the on day 11 of Vitamin regimen. 
 

Some people also had luck with CBD oil so we’ll see. Maybe I can try the indomethacin per the doctors orders, just to confirm it is indeed this. I don’t believe it’s the Continua version because I’m only getting them in bouts of about 4-6 weeks. 

re: CBD...first i've read that medical marijuana, whilst being a migraine-killer, does nothing for CH. i have personally discovered that a Trulieve Florida Med Mar indica named 9-lb hammer works like its name. but before it knocks me out at bedtime it makes any lingering shadows disappear. 

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Way back... stations often split networks. Until folks got UHF (oooo ultra high frequency television) & in 1971 the FCC stepped in to disallow it. I'm not sure when they changed their minds & allowed the split broadcasting to return to local broadcast network television.

Edited by Brain on fire

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7 minutes ago, Brain on fire said:

Way back... stations often split networks. Until folks got UHF (oooo ultra high frequency television) & in 1971 the FCC stepped in to disallow it. I'm not sure when they changed their minds & allowed the split broadcasting to return to local broadcast network television.

polymath

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