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lp3

prednisone therapy and vit m

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So...after 5 months of chronic 3-8 attacks daily I started busting with seeds. Worked great 1st time, about 2 weeks, then a 3 day remission, then none. Started to get suicidal, had no vit m and went to dr. He put me on 20 mg prednisone. Busted my CH in 1/2 day. Now he thinks its a good idea to take 20mg of prednisone every day for the next 5 months. he even gave me a script for it. I don't think this is the correct course of treatment for me. I want to bust again with vit m in about a week. how long should I wait to use vit m after steroids? I was thinking 7 days steroid free and then back to vit m. Thoughts? so glad I did not jump in front of a truck when I wanted 2. Steroids worked but...not for ever.

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You need to stick to a consistent course of action and keep track of results.  No sense going to the doctor accepting a recommendation and then not following through.  You will never know if it works and your physician will be in a position of not knowing compliance played a role in treatment failure (or the alternative treatment may work, you get better and your doctor thinks it was the steroids leaving a false impression of prescription success).

 

If you don't agree with the doc let them know and see if there are alternative treatments that you both can agree on.   Once you choose an alternative path anything traditional can be blamed for contributing to failure whether its accurate or not.  You can't start and stop the steroids to accommodate the bust because physiologic and mood changes can be problematic.  Once you start a reasonable treatment course follow through and if it doesn't work don't do it again.

 

Happy to hear you shook off the self destructive mood, never let the beast win.

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Hi all,

 

New member here--first post. I don't have an answer to your question about how long to wait, but I wanted to say that prednisone therapy worked for me, but I took a really high dose for a few days and then tapered--the whole course lasted 3 weeks. Last year I did the same and it was very effective for a short time, but the headaches came back even before I was finished tapering off. This year, the prednisone more/less broke the cluster, for which I am extremely grateful. I'm not 100% free of pain, but I'm taking meds or hitting the O2 once, maybe twice a week instead of daily. I avoid triggers (alcohol, etc.), get weekly acupuncture treatments, and take lots of magnesium--that plus the prednisone have made the awful intense part of this cluster much shorter than usual, but like I said, last year it didn't work as well. Five months seems long for prednisone, but I'm not a doctor. Prednisone is great at doing what it does, but possible side effects abound. That said, we all know how terrible the pain is, so if your doctor thinks it's safe and you're tolerating it well, maybe it's worth trying. Let us know how it goes--good luck!

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Hey lp3!  I just wanted to let you know that I got myself into BIG trouble with the prednisone.   It worked REALLY well for me!   I am a chronic sufferer as well and have been so for about five years now and was episodic for 8 years before that. The tapered dose would work and stop the headaches almost completely.   The problem was that after I stopped the prednisone within a couple of days I was back to the four a day CH routine.   I found that if I kept if going and took 20-25mg a day it would keep the monsters away. Much like your doc suggested.   I would do this for a week, then take a week off and then back to the prednisone in an effort to reduce the amount of prednisone I was ingesting.   I told myself "damn the side effects" because anything that the prednisone could do to me wasn't as bad as the CH.   I was wrong. - I started experiencing severe sweating episodes, dizziness and blackouts and I was still getting CH's on the off times from the prednisone so I was taking sometimes up to four immitrex injections per day.   After a whole bunch of testing and 10 weeks off work because I couldn't function at all.   The docs figured out that I had adrenal fatigue, the prednisone had suppressed many of my normal hormonal responses and basically shut down large chunks of my endocrine system.  Stopped the prednisone all together, and went to vitamin M - following the busters protocol as closely as I could and I am doing way better.  (only two attacks in a three weeks period, and that is because I delayed the vitamin M dose just to see).  No more sweats, dizziness is reduced and no more black outs.   The doc says it may take months to fully recover.   That was my experience trying prednisone to keep the beast at bay.  On another note, I am not sure what yours looks like but it might help to look at your diet - the low histamine (or Auto Immune Protocol) diet has been a HUGE help for me.   I have run out of the vitamin M for now - but I am looking into alternatives and considering a small terrarium for personal cultivation of fungus to keep the supply close by and controlled.  There is also BOL148 which will hopefully make it into to production before too long - not a lot of money to be made there, but hopefully some one comes up with a way to get that to market.  I know that there are docs in my city that are working on getting it for clinical human trials in the next few months.  Fingers crossed.

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