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Posts posted by Jlands

  1. Not sure if anyone else follows hockey here but there's a kid who plays for Philadelphia who is suffering from clusters.


    "Nolan does have a history of migraines, going back to when he was younger — he had some in minor hockey, in junior hockey. There's a family history, as well. I think at this point, he feels relieved to know what it is. It's been periodic migraines and cluster headaches throughout the summer and I think he was concerned and we were concerned. The doctor feels that there's a regimen you can put him on and with medication, we can control the situation and we're hopeful "



  2. 44 minutes ago, Mul23 said:

    Hi Jlands,

    Hope your doing ok, I'm going through the exact same at the moment. Prednisone has work great for me for the last 4 years and now this is the first cycle it hasn't worked and getting multiple headaches every day as opposed to two.


    Thank you for all the great content you post. I started the d3 regimen last week hoping to see some improvements. Also on the benadryl, I live in the UAE and you can't get benadryl here, do you know if there is any other replacements I can get instead that might have the same effect 


    Thank you,





    Day 2 of Benadryl and I've still been getting my regularly scheduled attacks.  Hoping for it to turn around soon.  I will say that I am drowsy as hell all day

  3. 8 minutes ago, Batch said:


    What's your latest 25(OH)D3 serum concentration and what's your vitamin D3 dose?  I've gotten whacked with mine upwards of 140 ng/mL when hit with an allergic reaction to mold spores.

    Take care and let us know how the Benadryl (Diphenhydramine HCL) works.

    V/R, Batch

    Admittedly, I haven’t been getting my levels tested.  I’m currently taking 20,000 ius but perhaps I should reduce it down to 10?



  4. 1 minute ago, Batch said:

    Hey Jlands,

    For starters, you're likely vitamin D3 deficient.  We've plenty of data to verify that statement as indicated in the following normal distribution chart of 313 CHer's 25(OH)D3 lab results prior to starting vitamin D3 therapy.  All of them were experiencing an active bout of CH with an average frequency of 3 CH/day/24 hrs. 


    Second...  you're also likely experiencing an allergic reaction to something in your environment or dietary intake.  A week to 10 day course of Bernadryl (Diphenhydramine HCL) at 25 mg every four hours throughout the day should make a difference if I'm correct about an allergic reaction.

    See the following link for details:



    Take care and please keep us posted.

    V/R, Batch

    Thanks!  I’ve been on the D3 regimen for a few years, so I’m fairly certain it’s not that. I will definitely try the Benadryl.  Much appreciated 

  5. Episodic sufferer here in the middle of a cycle.  Has anyone experienced a period of time where prednisone was no longer working for them?  Prednisone has always worked 100% of the time i've been on it, for every cycle i've ever had.  I took a two week taper at the beginning of my current cycle and it worked gangbusters as usual.  Now i'm on another two week taper which does not seem to be working.  Additionally, I'm getting multiple attacks a day, which is also unusual for me as i've always experienced just one per day.  Thanks

  6. I am episodic and started a new cycle about 5 weeks ago.  Was prescribed the prednisone taper (which always works for me) and Emgality at 3 100mg injections per month as stated above.  After i finished the prednisone (about 3 weeks ago) it was time to see if Emgality was working.  I've had maybe 1-2 clusters that I would rank as above a 5/10 and a few days of just getting the feeling of a headache coming but never materializing.  The rest has been PF.  For reference, during a cycle i typically get 1 per day.  I'm pretty optimistic that the Emgality is helping.

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