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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Well after 5 years they're baaaack GRRRR
        
(Message started by: cuzzykins on Oct 19^th, 2006, 3:49am)

Title: Well after 5 years they're baaaack GRRRR
Post by cuzzykins on Oct 19^th, 2006, 3:49am

Hi all.. sorry to be here again actually.. but so very glad to have this place to come to.. its been 5 years since i had and attack.. and that was my first episode as well.. all was going great so i thought.. then 2 weeks ago on a wed nite at 2am i woke up to the beast.. didnt rate a 10 but was close.. rode it out for the 1/2 hour it lasted then collapsed back to bed.. . next nite.. 3am bang again.. another fight with the monster.. friday.. not thinking duhhhh.. went to friends for dinner .. had a beer.. watched a movie and within an hour i was trying to fight through it w/o letting my friends know what was happening.. thats a toughie not to get up and pace or pound the head.. just breath.. breath.. ill never drink again... just go away please.. dont have a clue what the movie was about lol.. home please.. jumped on here soon as i got home to see what wonderful hints i could get to help me through the week end.. week end.. doctors? right.. got though it on coffee and lots of it.. it really did take it down a notch or 2 when they hit.. monday.. to the docs.. brand new one for me.. moved 2 yrs ago and hadnt needed one.. took all the info i could in with me.. think it helped.. got back on the prednazone.. dosage was too low i think.. only 30mg day.. but they stopped.. 4 days pf.. 5th day.. down to 20.. monster didnt even wait till i went to bed.. 10pm it hit.. took 30mg and drank the coffee.. phew got it.. sat morn .. call the doc office.. get the one lucky to be on call at 8am.. called in scrip for 60mg daily.. on that for 4 days.. today.. down to 30mgs.. 1am.. the 10 hit.. been up now for 1 1/2.. took another 30 mgs.. its gone but drank a redbull so im awake lol.. oh the fun of it all.. guess another call or visit to doc in the morn to see what will be next.. either stronger and longer on the pred or try something else.. thats all ive ever tried and since it worked so well the first time figured it would again..
Stats.. yup im female too for all the others out there that arent suppose to get these.. 50 .. smoker.. tired as hell and gonna try to go back to bed.. just needed to vent.. thanks for listening!!

Title: Re: Well after 5 years they're baaaack GRRRR
Post by bothofus on Oct 19^th, 2006, 4:38am

Hello cuzzykins,
Please be careful with the prednisone. I've read somewhere that it can be hard on your bones with extended use. It does however give ya some relief which is what we are all looking for.
Verapamil helped me tremendously, but please ask your doc first.

PF wishes your way!!!!!!!!!!!!!!!!!!!!!!

Carl

Title: Re: Well after 5 years they're baaaack GRRRR
Post by chewy on Oct 19^th, 2006, 8:08am

More times than not the CH will return at the low doses of pred. unless you are also taking a preventative.

Title: Re: Well after 5 years they're baaaack GRRRR
Post by kcopelin on Oct 19^th, 2006, 8:24am

Sorry the beast is back...pred tapers are a transitional medication-like Chewy said-until the preventative kicks in. Verapamil is probably the #1 choice, but there are others. What about oxygen? You have some reading to do, it looks like-if its been 5 years you missed the kudzu, RC seeds, ect.
Nighttime hits-you could try melatonin 9-12 mg 30 minutes before bed, and if that doesn't do it-thrown in 50mg of benadryl. That combo has worked for some of us.
Again, sorry you had to return to clusterville, but welcome home and and here's wishing you
PFDAN
kathy

Title: Re: Well after 5 years they're baaaack GRRRR
Post by cuzzykins on Oct 19^th, 2006, 8:52am

Thanks all for the great suggestions... the varapamill will be my suggestion to the doc today for sure.. dont really like how im feeling on the pred anyway.. guess it was just wishful thinking that it would be the quick fix .. guess i better print off some more info.. and read alot more cause i dont have a clue what the kudzu and rc seeds are.. i will return with the rest of the story im sure.. tc all and thank you so very much for being here!

Title: Re: Well after 5 years they're baaaack GRRRR
Post by chewy on Oct 19^th, 2006, 9:02am

I use 480 mg of verapamil per day.

Title: Re: Well after 5 years they're baaaack GRRRR
Post by cuzzykins on Oct 19^th, 2006, 9:29am

Hey Chewy.. how long before the verap starts to help do you think? i am wondering if i need to cont on with the pred for a bit or cont to taper off after starting on the verap? Also did you have high bp before the verap?
my bp is a lil high to start with ..

Title: Re: Well after 5 years they're baaaack GRRRR
Post by cuzzykins on Oct 29^th, 2006, 7:23pm

Time for an update i reckon.. going into week 5 now.. Pred taper down to 10mg day 5 days left.. verap 240mg daily.. 5days into that dosage.. malatonin 9mg every nite 1/2 hour before bed.. no hits at nite in 4 nites now ;;D .. now they like to hit after dinner time around 8-10... something im eating could be a trigger? Started the nutrisystem food plan a week ago and eating alot of veggies, salads, fruits, protein and dairy... just the good stuff of course lol... hits havent been really bad or as bad as they could be . .. Imitrex NS has worked once and not so good the 2nd time.. O2 tried last nite with the nose tubes (waiting on clustermasx) helped keep it managable.. feeling shadows all day today.. woke up with wicked bad cough and runny nose due either to the o2 or just bad timing with cold/bronchitis.. wonders what that will do to the HA's ... any suggestions on otc cold meds that wont hurt more then help? nothing needed at this point but another doc visit on tues for follow up on progress.. blood tests came back.. wbc elevated... now what???

Thanks for giving me a place to Vent!!!

Deb

Title: Re: Well after 5 years they're baaaack GRRRR
Post by cak46 on Nov 16^th, 2006, 9:35pm

on 10/29/06 at 19:23:34, cuzzykins wrote:

something im eating could be a trigger?

Deb,

Not sure whether you're checking in, but with my beast the following can trigger a level 10:

Nitrites, nitrates, monosodium glutamate: I avoid all food preservatives during an episode
hard cheeses
processed meats: salami, pepperoni, most pork products including hot dogs, etc.
chocolate
wine, alcohol in general

Hope this helps!

Title: Re: Well after 5 years they're baaaack GRRRR
Post by Richr8 on Nov 16^th, 2006, 9:54pm

on 10/29/06 at 19:23:34, cuzzykins wrote:

any suggestions on otc cold meds that wont hurt more then help?

I've used generic cold and flu medicatins with some success, but that depends entirely on what other medication you may be taking. Pharmacists are pretty good at steering you in the right direction.

Title: Re: Well after 5 years they're baaaack GRRRR
Post by sandie99 on Nov 17^th, 2006, 6:49am

Deb,

I'm so sorry that the beast is back in your life. But I am glad it brought you here. :)

I was about to mention Red Bull, but I can see that you've already found it. :) I hope it helps you to get rid of the pain. It's my aid no 1. ;)

I've been wondering about nutrition a lot. I've been eating magnesium tabs when someone mentioned here that it can help (it did back in my chronic days). I have tested different foods if they will trigger a hit. I eat a healthy diet, lots of fresh veggies and fruits, rye bread, drink a lot of water, use whole wheat pasta and rice and eat mostly lean meat. Snacks with salt (think potato chips, popcorn) are trigger for me, so is alcohol.

Whatever one of us discovers, it can be helpful to others as well. :)

I hope that you will soon find what will help you this time around. You've been PF, so you can be PF again! Keep that in mind when the beast comes to bug you.

I wish you a lots of PF days,
Sanna