Ilya K

Yes. Still getting the error message when I try to DM him of "Batch can not receive messages".

Any word from Batch?

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.

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?

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.

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.

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

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?

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.

Awesome - thanks for the tip. I'll try it today.

Just tried sending him a PM to the error message "Batch can not receive messages".

Where is the pinned post?

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?

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