Ilya K
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Posts posted by Ilya K
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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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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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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:
- 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?
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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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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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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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6 minutes ago, spiny said:
Sounds like a good plan you have.
I have had and read of people having a reaction to the fillers in some meds. Like a name brand will have Y fillers and the generic will have X fillers. So, some people can take one and not the other. So, you might consider a different multi. Just a thought if changing the fish oil does not solve the issue.
Are you taking the Benadryl?
Batch is indeed not getting PM's at this point. Not sure why. But, he is very devoted to helping all and will show up when he is available. He never has let anyone down who PMed him to my knowledge. But at the moment that is not an available route to follow. We will wait to see if CHF's mail got to Batch.
Appreciate the quick feedback. Are all multivitamins created equal? Meaning if I buy a different brand or a gummy will it have everything necessary that the Kirkland one does?
Any regarding the Benadryl - do you think it's necessary if I'm not having any of my allergy symptoms? I've been on the allergy shots for over a year so I don't know if that's contributing or not.
Also is it normal to feel a sensation in my nostril sometimes throughout the day? Like it feels tingly or just abnormal. Is that still part of the trigeminal nerve maybe?
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20 minutes ago, spiny said:
Ilya the vitamins will be a big help. As you know, your D is in the trash and really needs to come up!
And I share the Equinox date with you! Many start a cycle at that time of year. Sucks, but at least you have an idea of when it is coming and can prepare to battle if needed!
Let us know how breaking them up worked for you! Oh, are you using 'burpless' fish oil? I could not stand the other one. Going 'burpless' helped me a lot.
I'll see if I can reach Batch too.
Thank you Spiny, and no I am not using the ‘burpless’ one. I think I may actually be getting nauseous from the multivitamin, so it’s going to be a little bit of trial and error to figure that out. Today, I took 10000IUs of the D3, Magnesium and the multivitamin with breakfast and only had about 10 mins of nausea. Going to take the rest with dinner and see if the fish oil is the culprit.
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10 hours ago, kat_92 said:
I split the vitamins up into 3 in the morning and 3 at night. Always take them with a meal. I was instantly vomiting after taking them all on an empty stomach which Wasn’t smart on my part. Good luck!
Awesome - thanks for the tip. I'll try it today.
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28 minutes ago, CHfather said:
Send him a PM. Click on the envelope icon at the top right of any page, and type Batch into the To line. If he doesn't respond here, he will surely get back to you.
The pinned post is outdated, and now even the link to more recent information is out of date. This will get you to Batch's discussion of the protocol (scroll down the page), but I'm not sure how much it will help you with your specific question. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people
Just tried sending him a PM to the error message "Batch can not receive messages".
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Where is the pinned post?
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31 minutes ago, Pebblesthecorgi said:
Personally I found the fish oil to generate nausea. The volume of pills may be contributing to the nausea as well rather than the specific substance. Try dividing the doses instead of taking all at once to see what you might be sensitive to. I would defer to Batch for final suggestions as this is his baby.
Good to know, I may give that a shot. What did you do to mitigate the nausea with the fish oil?
Also I should mention I have allergies, but have been doing the immunotherapy shots for over a year so I don’t know if those are a factor. I’ve read Batch’s responses about taking Benadryl to prevent the histamine reaction. Does he need to be tagged or something to respond?
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Hey Everyone,
I'm pretty new to the community - started getting clusters last year, early September. And as all of you, thought they were sinus-related or something else so I had an MRI and CT scan, and everything came back normal. Last year my cycle started and ended earlier.
This year it came back around September 22nd. So I started off by seeing my PC doctor. I happened to get my 25 (OH) D tested and it was 23.6 ng/ml. After that I went to see a few neurologists, some thought it was a migraine but most thought it was cluster headaches due to the cyclical nature of the headaches, the location of the pain, and the fact that it was unilateral 95% of the time.
I did further research and started reading about the side-effects of CGRPS, Verapamil and other preventative measures and realized those were not for me. I was also placed on a 5 day steroid course which reduced the severity of the attacks and the frequency, but nonetheless they are still happening.
My research further lead me to try the D3 loading regimen, with the approval of a few doctors of course. And this is what I have done so far:
10/8/19 - 10/14/19: I did 10k IUs of the D3 along with all the cofactors
10/15/19: I did 20k IUs of the D3 along with all the cofactors
10/16/19: 50k IUs along with all the cofactors
10/17/19: 20k IUs along with all the cofactors
I know that this isn't exactly how the loading schedule should be done, but I was scared of taking everything at once so fast. Lately I have been doing the 20k IUs/day and I have been feeling a bit nauseated and dehydrated, so my questions are:
- How can I reduce this nauseating and dehydrated feeling?
- Why are the cofactors all necessary even during maintenance periods? Has anyone tried going off of them to any success? Are they purely for absorption?
- If someone could get Batch involved, he has been a lifesaver thus far and his input would be invaluable.
Vitamins taken are: Kirkland Multimitamin, Pure D3 (5000 IU), Magnesium Calcium & Zinc from Walgreen, and a fish oil supplement from Trader Joes
Best,
Ilya
Nausea with D3 Regimen & Cofactors
in General Board
Posted
Yes. Still getting the error message when I try to DM him of "Batch can not receive messages".