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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Prednisone issue
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Message started by Goretex101 on Mar 30th, 2020 at 4:55pm

Title: Prednisone issue
Post by Goretex101 on Mar 30th, 2020 at 4:55pm
So the only preventive that has ever worked has been a few weeks of prednisone , 20mg a day. I have one episode per year and usually takes 3-5 weeks to break the cycle . My headache doctor told me she cant give me anymore Prednisone because she is being restricted because of the coronavirus , Being it weakens immune systems. First i don't believe she is being restricted. Maybe being cautious .. My question is what are your thoughts on this .
Every drug this woman has every prescribed gave me more things then it ever got rid of .. Triptans make me feel like im having a heart attack.. I do have the oxygen so that helps but with no abortive all I have is the steroid to help the frequency.

Title: Re: Prednisone issue
Post by AussieBrian on Mar 30th, 2020 at 6:31pm
Extended use of prednisone comes with all its own problems, too, but have you looked at the Vitamin D regimen that was pretty much developed right here?

Many, many ClusterHeads are seeing terrific results using it as a preventive while it's very cheap and the only real side-effect seems to be good health.

Title: Re: Prednisone issue
Post by Rob A NJ on May 18th, 2020 at 2:39pm
Hi Goretex101.  I have had cluster headaches for 20+ years.  In the early years I was given prednisone to stop the headache cycle.  Then taper off.  It would take 60 or 80 mg to get them to slow down.  The trouble is that prednisone has a nasty habit of cutting off the blood circulation to joints, more specifically the hip joints.  At 50 I needed both hip fully replaced.  All good now, but no prednisone. 

I have tried just about everything over 20 years.  I guess you need to find what works for you.  A doctor in NYC put me on Gabapentin.  I ramp um when they start, going up as high as 4200 mg per day divided.  It normally takes a couple of months, but they then stop. 

When I had another cycle last year, a local neurologist felt that the Gabapentin was not the most effective treatment.  We tried the new Emgality for three months, Aimovig for another three, Tegretol (horrible dizziness), and finally after a year and a half of 2 to 4 clusters a day, we went back to Gabapentin.  In 6 weeks, the headaches are now gone.  Since I was so desperate to get rid of my headaches, I also went on the vitamin D3 regimen they suggest here on the site.  So I might think about trying that as well.

By the way, sumatriptan injections **always** cures the headaches within 10 minutes.  I found out that I could cut the dosage to half and it still worked perfectly.  Helpful when the insurance company limits what you can get.  Plus, you get less of an impact on the side effects.  For me, that was really never a problem. 

Good luck!

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