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jh

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  1. Anyone have experience using the new approved cluster drug called Emgality?
  2. Thanks Batch. I hope you are correct on the diagnosis. I am seeing a retina doc today. It is a bitch to get old. But better than the alternative.
  3. Hi everyone, i recently ended 6 weeks of cluster misery about 2 weeks ago. That’s the good news. I started the D3 regimen and no More clusters. My question today is related to floaters in the same eye that my clusters HAs were in. I have had clusters for over 40 years. Episodic. I have never had floaters in any eye. Has there ever been a link between floaters and cluster HAs? I am thinking it is unrelated. But you never know since the CH has a mind of it’s own. Any help on this would be much appreciated. I hope everyone out there is feeling OK today. Love you guys JH.
  4. I wonder what this means: I am in my 6th week of a cycle and have used O2 every day multiple times a day and night. The last 2 days and through the nights all I have had is a fairly constant shadow. Maybe a 3-4 kip. No need to take O2. But it persists. I have had clusters for over 40 years and never have I experienced this shadow thing Has anyone experienced this? JH.
  5. jh

    Shadows

    Thanks everyone for your responses. I am hoping the shadows mean that my cycle is perhaps coming to an end. Would be nice. JH
  6. jh

    Shadows

    I wonder what this means: I am in my 6th week of a cycle and have used O2 every day multiple times a day and night. The last 2 days and through the nights all I have had is a fairly constant shadow. Maybe a 3-4 kip. No need to take O2. But it persists. I have had clusters for over 40 years and never have I experienced this shadow thing Has anyone experienced this? JH.
  7. jh

    Hi Batch,

    As you suggested, I will be starting the D3 regimen tomorrow.  I did notice that one of the supplements had folic acid.  I take and have been taking 1 milligram folic acid tabs daily for quite a while since my bladder was removed due to cancer.  Would I be taking too much folic acid with the amount in the supplement.Thank You

    JH. 

    1. Batch

      Batch

      Hey JH,

      Thanks for the headzup you're starting the anti-inflammatory regimen. You've made a wise decision...

      Regarding the folate, the Tolerable Upper Intake Level (UL) for Folic Acid is 1000 μg/day (1 mg/day).  That said, taking even higher doses of folate should not pose a problem.

      We're almost in the same boat... I lost my left kidney to cancer last year...  This form of cancer was likely due to a 18 month long course of an experimental monoclonal antibody called daclizumab.  I was taking it back in 2000 as a participant in a clinical trial at the National Eye Institute, NIH Bethesda, MD to control an autoimmune eye disorder called uveitis.  My retina were trying to reject me...  The daclizumab was destroying my immune system resulting in all kinds of infections including colds, flu, pneumonia, pancreatitis, eosinophilic meningitis and squamous cell skin cancer... all in the course of this study.

      Regarding my left-hand assisted nephrectomy, my urologist was amazed how fast I recovered from the laparoscopy and that my labs looked so good with the exception of my 25(OH)D which I keep up around 150 ng/mL.  When I explained why I kept it that high to prevent my CH, he got a smile on his face and said... "OK... as long as your serum calcium remains in the normal reference rage with your 25(OH)D this high... I've no problem with you doing this..."  My serum calcium has always remained within its normal reference range.

      The only problem I've noticed with one kidney... I can only get half as pissed off as I used to...

      Take care and please keep me posted.

      Peter

  8. CHfather, my supplement (BC/BS plan F) does not cover O2 either. They follow the guidelines of Medicare. I was told that today on the telephone. What a joke. JH
  9. Hello DBMAX, IT SEEMS THAT WAY FOR ME. EVERY 2 hours once I fall asleep.
  10. jh

    CH triggers

    I have read that chocolate can be a trigger for a CH. Has anyone noticed this? The only for sure one is alcohol that I am aware of. JH
  11. Thank you for your detailed information on oxygen use at higher flow rates to abort CHs. You went the extra mile for sure. JH
  12. Thank you for the response to my questions about O2. You made me feel much better this morning after a night of 6 CHs about every 1.5 hours. Does anyone out there have insurance pay for the O2. I am on Medicare and have a very good BC/BS supplement? This website and the people on it are truly awesome. JH
  13. Hello Friends, I would appreciate your feedback on the following 2 questions: 1) By using O2 to abort a CH, does that have any effect on the duration of the entire cycle? Does it make it go longer? 2) I understand what rebounds are. But I was wondering if a rebound can occur after every O2 use. I have been getting 4-5 CHs a day and I zap them with O2 which works great. Generally, 4 of these come right after the other about one or two hours apart during my sleep time. Could some of these be rebounds due to O2 use? I am wondering if I left a CH go for the duration without O2 would that stop my rebounds. I rather not do that because my CHs are very severe. Just wondering!
  14. jh

    any success stories of being CH free for good?

    I started clusters 40+ years ago. I am 29 days into a bad ass cycle and my last cycle was 7 years ago. Sorry for the bad news.
  15. It has been a while since I visited the Clusterbuster site.  Actually, about 7 years since my last episode. I am 29 days into it again.  Pretty nasty this go around.  Thank God for O2.  

    I am very impressed with the information this site provides for everyone.  Thank you.  

    1. Show previous comments  1 more
    2. jh

      jh

      Remission.  

      It appears to be pay back time.  4-5 headaches a day. Mostly in evening once the day is over they begin.  Then through the night every couple of hours they wake me.  I am very lucky that O2 works for me.  I go through 2-3 E tanks every couple of days. 

    3. Freud

      Freud

      Can you not get M tanks, my O2 supplier has given me 3 Mtanks and 1 E tank to try out. Unfortunately I need the higher flows 20-25lpm and the E tank I have only goes to 15. I could get a regulator on line but the O2 usually doesn’t work for my day attack’s and I only use the E tank in the car. That was the plan at least. 

    4. jh

      jh

      I haven’t really checked into the M tank yet.  I guess I could get one.  The E tanks as you know are much mote portable around the house.  

      Does your insurance pay for your O2?

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