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Posts posted by BKP

  1. On 9/6/2019 at 9:30 PM, Pebblesthecorgi said:

    Even if O2 only works for 50% of cluster sufferers it is irrational not to try it.  Its safe, cheap and effective.  The cost burden is less than any other intervention.  I will never understand the thinking of someone in medicine when they deny trying a treatment because it does not work for everyone.  There are very few one size fits all conditions in medicine and many medical interventions and treatments have less than 50% efficacy.  We do not hesitate to "try anything" for a cancer patient even if there is a less than 10% chance of efficacy.  Lives are interrupted, rendered nonproductive  or ended because of inadequate treatment of cluster headaches.  There is a special place in hell for those who deny the opportunity to try O2 or deny reimbursement for O2.

    Yeah, that's the problem. Some doctors just do not want to prescribe oxygen for these. And I know people make their own oxygen tanks but its so expensive (for me anyway). Luckily for me, the D3 regimen works pretty well for me along with some jumping jacks if one really comes strong.

  2. 51 minutes ago, Dallas Denny said:


    Exactly why I never use the term "headache" outside the confines of these online support forums or in the company of another clusterhead!

    I have a neurological disorder called Trigeminal autonomic cephalalgia which causes extremely painful head and facial pain.

    And, I also use the brain freeze analogy when describing the pain to a non clusterhead!


    I'm going to start using that too. Trigeminal autonomic cephalalgia.....if I can remember all of that in the moment, lol.

    • Like 3
  3. On 8/29/2019 at 9:41 AM, FunTimes said:

    I would not think your cycle is ending I think the Verapamil may be kicking in. It can take up to a week for you to start feeling the effects from that. Most times your doctor will give you a Prednisone taper to hold you over until the Verap starts to work. You are better off without the prednisone, that can do some harm to your joints.. 

    MRI is good to rule out any other things that may be going on and like Freud said you will want to look into getting oxygen to abort your attacks. I also will down a 5hr energy drink at the start of a cluster to help the oxygen kick in faster for a quick abort or to help some of the stubborn ones go away. 

    Tuns of information on this site and everyone is here to help so read as much as you can and ask questions.. 

    I've heard of the energy drinks working for people. For me, they make it feel 10 times worse. Sigh....

  4. 32 minutes ago, Dallas Denny said:


    LoL, that's awesome. I'm afraid if I wear it, I'm going to get a million questions like "What's the beast"? Then when you tell them cluster headaches, they've never heard of them, then you have to explain it again and again.  Anymore, my quick answer to them as far as the pain is, imagine a brain freeze that lasts for 15 min up to 3 hours. Then they're horrified, lol.

  5. On 8/20/2019 at 12:43 PM, CHfather said:

    BKP -- Maybe a triptan nasal spray will work for you.  Or would you feel better without the self-injector, if you were just injecting yourself with a syringe? That can be arranged.  

    Hey CHfather, I think you may be right. Because the first shot did seem to break the cycle. I still had some headaches for a few days after that, but I stayed on the Vitamin D regimen and they were gone. I was headache free for the past 3 years until the last couple weeks, they finally came back. And I know part of my mistake is I stopped the regimen when the headaches stopped. And since I didn't get one for 3 years, I thought they were gone. I should have stayed on the regimen and this time I definitely will. Luckily now I also have a different job than I had before where I have a lot more freedom go just get up and go outside and deal with the pain in case one comes on while I'm at work. Man, Vitamin's are so expensive but its worth it to be pain free. But man, anywhere from 15-30 bucks for each bottle of pills/vitamins is killer.

  6. Did he give you Prednisone? I've been on it before because I have asthma but I went to the dr. back in 2015 and thats what he prescribed me along with 2 Imitrex self injection shots which I can NOT do. I don't see how people do this especially with diabetes and stuff. Funny story. I was able to get the first shot off because I didn't know what to expect as far as the pain and the sharpness of it. But it IMMEDIATELY took my headache away. When I went to do the second one, I couldn't bring myself to do it because I knew what to expect, lol. Never took the 2nd shot. 

    But yeah it doesn't seem like you're having full blown headaches so the D3 might be working more than you think. It doesn't always take them away but lessens the impact and duration for some people. Until you're basically writhing around in pain, holding your head, praying for it go away, its not full blown I don't think. When I describe the pain to some people, the best way to describe it to me is like a brain freeze that lasts from 15 min to up to 3 hours(rarely do mine last 3 hours, usually 15-30 minutes.

    How long have you been on the D3?


    • Like 1
  7. I've also never heard of one being triggered by exercise but I can definitely attest to exercise taking them away. I recently started having CH's again after not having them since 2015. I haven't had them all my life, but I started getting them in 2015 and I knew they were crazy. I found this D3 regimen way back then and followed it until they went away. But jumping jacks ALWAYS help take mine away. I do about 6-7 sets of 20 or so basically resting in between sets until I can gradually feel it going away. Now I have my own place so its a lot easier to get up and just do some jumping jacks without disturbing anyone else or looking crazy. Also running helps me also. Running in place doesn't really help but if I just run around in a circle, (if I can't run outside at the time) works also. But I prefer the jumping jacks.

    • Like 1
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