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an unfriendly return from the beast (Read 2472 times)
blacklab
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an unfriendly return from the beast
Dec 13th, 2015 at 4:25am
 
Hi all,
         Well as the title states, Ive been going thru my first real cycle in probably 13-14 months.
Started feeling like crap in October and quickly jumped on the Benadryl band wagon after realising that pollen was most likely the contributor. It worked a treat, but some sneak thru hits appeared, especially at that 2.00 am time and wake up ones, nothing over a kip 3.
So, back for another week of Benadryl, and a trip to the doctors for a D level test mid November, came in at 250 nmol, which was expected as I'd been titrating up for a week or so, my calcium levels came back normal.
then things ramped up, for a week, 4.00 pm, 7.00pm and then 10.00pm, Wow, its been so long since anything resembled a regular cycle. Then December 4th, 2.00 pm at work, a kip 5-6 (  forgot what it felt like )  and its basically been coming in groups of 3-4 at no pattern, but all kip 5-6.
I've tried just about all of the remedy alternatives, as I kept notes from when Batch was helping me from the start, but alas, all have failed.   I pulled out an old bottle of prednisolone today, enough in it for a weeks tapered course. Didn't think I'de ever have to resort back to them, but getting some relief is the only thing on my mind at the minute. even though I rate them as only kip 5-6, down on my kip levels pryor to the regime,  Boy, I forgot how those things hurt !   Been off verapamil since Febuary, and I've never had O2,  didn't know about O2 for the first year I got clusters.
I resorted to popping an imigran just before bed time and it hasn't failed to at least give me a full nights sleep.
Something has to have changed for this break thru cycle to appear. Pryor to this one, my cycles, every 3-4 months or so, have been easily deflected by titrating up on D3, some ice cold red bulls, an imigran before bed and a good strong coffee first thing in the morning and they have basically been of nuisance value only, nothing over a kip 2 and super easy to abort.
Normally my cycle lasts for 3 odd weeks, so 10 days into it is not worth getting the script and organising the O2 and the mask as it will probably be over by the time I set up.  The verapamil did funny things to me, I was only on 180 to 240mg anyway, I was on it for near 2 years, and don't really want to go back there " yet".
The Regime, which I have consistently taken, seems to react violently down stairs with me since the cycle started, so since I was at 250nmol, I thought I'd take a week off, dropping back down to 200nmol, where I normally am and have been pain free.
Sorry for the epic war and peace novel   Grin
Just so damn frustrating after a long period of being able to manage it successfully.
I sit here looking at the prednisolone tablets, reluctantly !
but have run out of ideas at the minute  ????
anyway, my rant over !  Wink
Hope everyone else is having more joy.

regards
colin
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helliknowpain
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Re: an unfriendly return from the beast
Reply #1 - Dec 13th, 2015 at 7:09am
 
I think we all hope we're done with it when we're in a remission. You get used to not worrying or thinking about it...It's damn surreal when it comes, and when it mutates, it's scary as hell. Remember, one day at a time.

I feel for ya man!
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Peter510
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Re: an unfriendly return from the beast
Reply #2 - Dec 13th, 2015 at 9:44am
 
Hey Colin,

Really sorry to read your post. I sincerely hope the episode passes quickly, or better, you find the reason it occurred in the first place.

Keep the faith,

Peter.
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Mike NZ
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Re: an unfriendly return from the beast
Reply #3 - Dec 13th, 2015 at 1:57pm
 
Hi Colin

Echoing the previous responses, hoping you get on top of this episode quickly.

Are you getting hay fever or similar since it's late spring / early summer?
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blacklab
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Re: an unfriendly return from the beast
Reply #4 - Dec 13th, 2015 at 4:54pm
 
Thanks guys,  Yep, it sure is a nuisance when it comes back in such a way, especially with the regime holding it at bay and keeping the cycles to more of a whimper for the past year and a bit.
Hi Mike,  I have an English type garden at the back of our place, with every known hi pollen flower, beautiful as it is, it did play havoc with me when it all bloomed in late October. So as mentioned, with Batch talking about his experience, I put two and two together and got on to the Benadryl and it got rid of my shadows and really helped the sinuses/ hay fever. I don't think I've really ever had a problem with hay fever before this, or should I say, haven't put the connection there before. Its very hard to get the original brand here, they keep it behind the counter, so after the first initial bottle I got here and along with the Spanish inquisition involved I ordered the pill version on line from the U.S. 
I Suppose that its possible that the pollen count could still be effecting me, but I have no noticeable physical signs.
There will be a link or something That I haven't connected yet that is the cause, just got to figure it out I suppose.
So as mentioned, my D3 levels are high, so I'm going thru a process of elimination, my stomach seems to have an intolerance to all and sundry at the moment, something that I've always tended to be prone too all of my life and something that's been looked at several times over the years to no avail,  just a sensitive gut I suppose   Grin
So I may try taking the Benadryl again, on its own and see if that improves things, I'm figuring a week off the regime cant hurt as my levels are higher than normal.  Woke this morning without the normal AM hit, so I'll hold off with taking the prednisolone at the minute, I don't really want to go there anyway.
  Oh the joys of the beast !
just another curve ball along the journey I suppose   Grin

kindest regards
colin
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Hoppy
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Re: an unfriendly return from the beast
Reply #5 - Dec 13th, 2015 at 5:08pm
 
Hi Colin,
Sorry to read the beast is back, maybe try a three month course of vitamin B that Batch talks about could help.

Dr Hoppy.
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blacklab
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Re: an unfriendly return from the beast
Reply #6 - Dec 13th, 2015 at 5:30pm
 
Hi Hoppy, hope all is well
I've already done the Vit b course a while back, but thanks for the suggestion.
I hope you found my join request on your f/b page, I found it last nite and clicked the request button

colin
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Peter510
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Re: an unfriendly return from the beast
Reply #7 - Dec 13th, 2015 at 5:38pm
 
Colin,

Have you tried a good probiotic for the digestive problems?

Peter.
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blacklab
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Re: an unfriendly return from the beast
Reply #8 - Dec 13th, 2015 at 5:57pm
 
Hi Peter,
           Yes I have in the past and its improved issues, I'm actually going to do another course as we speak, then do a process of elimination to see if I can find what I'm reacting too !  Maybe it has nothing to do with my current return of the cycle I'm in, but its a nuisance !
Hope its not the magnesium in the regime   Shocked
Batch has given me some ideas for me to try, so I'll just go through the process.....
And how have things been with you Peter ?????

colin
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Peter510
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Don't give out... But
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Wexford. Ireland
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Re: an unfriendly return from the beast
Reply #9 - Dec 13th, 2015 at 6:17pm
 
Not dissimilar to yourself. Since October (Autumn here)  I've had an increase in activity. Although I never really managed to get fully clear of the beast, the D3 has made the last year very manageable.

The last two months have been a bit rougher, as I say, but still nothing to panic about. I do the Benadryl, Probiotics and  Melatonin at night to get me through.

I retired in September and everyone was suggesting that the reduction in driving time would surely benefit me. No such luck.

Anyway, things are far better than in the past and with a Brother who is recovering from Surgery following Liver Cancer, what have I to complain about?

Hope you have a pain free Christmas.

Peter.

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helliknowpain
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Re: an unfriendly return from the beast
Reply #10 - Dec 13th, 2015 at 9:04pm
 
Quote:
Hi Peter,
           Yes I have in the past and its improved issues, I'm actually going to do another course as we speak, then do a process of elimination to see if I can find what I'm reacting too !  Maybe it has nothing to do with my current return of the cycle I'm in, but its a nuisance !
Hope its not the magnesium in the regime   Shocked
Batch has given me some ideas for me to try, so I'll just go through the process.....
And how have things been with you Peter ?????

colin


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