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Well, we're back...cycle not over after all.... (Read 896 times)
MinxKittten
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Las Vegas, NV
Gender: female
Well, we're back...cycle not over after all....
Jun 19th, 2008 at 2:25am
 
Well,  we've been away for a month or so as we thought the cycle was coming to an end.  My hubby thought he had found the right blend of meds, verapimil, tomamax, taurine and we  had several PF days and felt that he was coming to a break in the cycle.

but alas,  it was not to be.   Undecided  the beast crept back up on him.  granted the resurgence is now on the right side and pain levels of 3-6,  versus at its height,  the left side pain levels were 7-10 and off the chart and beyond.

10 months now,  the longest, most severe cycle he's ever had.  i think he feels beaten by the beast.  Cry

the oxygen didn't work for him and he's talking about dumping/tapering off all the meds.

he's still having food issues, with a headache after any and every meal.  even though we've eliminated the obvious food triggers, like msg, processed meats, choc, alcohol, etc.

any suggestions for a new line of attack would be appreciated.
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Ungweliante
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Posts: 169
Helsinki, Finland
Gender: female
Re: Well, we're back...cycle not over after all....
Reply #1 - Jun 19th, 2008 at 12:56pm
 
So sorry to hear that.

I have to say that I was and am inspired by your force of will in battling the beast for your husband, though Smiley

I left you a post in the supporters' corner about the new diet I've been trying out, but basically I can just repeat it here. I haven't followed it -exactly-, but perhaps it could help your husband, considering he gets hit after each and every meal? I do know, though, that I get hit now only once per day instead of twice. But that can be because of a lot of things...stopping Topiramate, adding Verapamil, maintaining a very regular sleeping cycle, etc.

The diet is explained in a free internet book used for battling hardcore acne. It's available at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register At least if nothing else, I found out that it was a very interesting read. Basically it advocates eating only raw organically produced fruit and raw fish.

Could you type out some statistics about the meds your husband used? How long? What doses? How long did he take to get up to those doses? What flow rate of oxygen? And also, do you have a 100% airtight oxygen mask? I ordered mine from Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register and found it a lot better than the one I got from the hospital here.

- Wishing you better times soon,
Rosa
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