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salena27
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thier coming !
« on: Feb 9th, 2006, 3:38pm » |
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Hi everyone ,
I havent posted before , but by no means a "newbie" , though it's be awhile since I last visited.
quick history; 27, WF, suffered from CH since I was 13.....symtoms are typical and severe!always right side. Got the curse from my Pop.
Ok on with the question; it's been 2 yrs and getting the "shadows" , no pain yet, just right sided throbs......THIER COMING! So , I need advise from ppl who have a clue , seen so many doc's w/o much luck and this time I need to be prepared with info
Last go round , I waited weeks and that was a mistake ! I was given Verapamil and took mass doses...no luck , imitrex done nothing once they began ...as a preventive med ; worked OK but only if was able to determine the next attack.....the only thing that did help was:
Predisone......it helped alot , yay hope! BUT the lower then dose dialy the more I suffered ! Finally the last day ( one pill) my CH was massive, worst ever lasting 2 hrs ! Praying to God to make me sleep and never wake!
So what now ? Is predisone more effective before the CH's peak? Is it common for this to occur, I mean making it worse folling the steriod?
Last question, since imitrex was ok as a preventive, would injections be a good option for me ?
thanks a bunch! Totally grateful!
Salena
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djpaynesr
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Re: thier coming !
« Reply #1 on: Feb 9th, 2006, 3:57pm » |
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I'm so sorry Salena. Hang in there. You will get through this.
Imitrex isn't supposed to work in a preventive capacity but everyone reacts differently to this stuff. I would try the injections, just get a thorough exam before you do. They work GREAT for me. I shoot up, in the right thigh, and in 7 minutes EVERY time they are GONE.
Also, try Maxalt or Amerge. Both work great for me but take considerably longer (40-45 minutes) to work because they are pills.
Have you tried Oxygen? High flow 15 liters per minute (max setting) of 100% oxygen works for me in 15-20 minutes. This also has the benefit of producing the fewest side-effects.
I haven't found anything that prevents my clusters so I can't be much help there.
Wishing you PFDAN.
Dave
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salena27
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Re: thier coming !
« Reply #2 on: Feb 9th, 2006, 4:28pm » |
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Hi Dave !
Such a sweetie for replying
Hoping to get through this, they seem worse as I get older,, or maybe my tolerance is lower .Either way I am scared !
I went to the ER asking for oxyen, but got demerol in stead! It wasn't much help , make me sleepy but that's about it. Do you get a tank for home or how does that work?
I havent ever had much luck w/ doc's, the last told (NEURO) me that CH were just "bad migraines" which I don't agree with. $200+ dollars for nothing. I'm alittle bitter , can ya tell lol?!
***shhh Salena , stop venting *** 
My CH's normally follow a pattern mid-cycle , happening around the same time daily and if I took Imitrex say 30 minutes before said time , I had some luck.
I know , different ppl different effects......gosh why can't it all be simply!?
I had my pen and paper ready and wrote your med suggestions down , and going to be prepared this time ! Crossing my fingers this doc understands .
Thanks for your help and listening to my venting best of luck too you also
SALENA
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jBryan
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Re: thier coming !
« Reply #3 on: Feb 9th, 2006, 6:31pm » |
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I started lecithin supplements (1200mg BID) about 7 years ago, following which I had a really good 5 yr remission. I haven't seen very many others say they've tried this but its OTC, not very expensive, and supposedly has other health benefits, so it may be worth trying. Anyway I started having CHs again last year and started the Kudzu and thankful have been PF for over 2 weeks!!! It just took a few weeks for the Kudzu to kick in, during which time the CHs were lessening in intensity but off the normal schedule. I have found that doctors in general aren't very aware of non prescription treatments but, they have worked for me. Also there may be interaction or over lap with Kudzu and Immatrex but I use it as well; just as an abortive. Injections are super fast for me, like seconds. Good luck.
Bryan
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Guiseppi
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Re: thier coming !
« Reply #4 on: Feb 9th, 2006, 6:39pm » |
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Hey Salena, sorry you have to post here, but glad you've joined us. I get 100% relief from the prednisone also, but they won't let you stay on it very long and when I come off of it I get the very worst of bad head aches!
I'm episodic and have been using lithium for several years when I am on cycle. I'm 46, weigh about 200 pounds, and use 900-1200 mg lithium a day when on cycle. It stops most of my head aches. I use oxygen and cafergot for the headaches that break thru the lithium. Read up on the oxygen link, it's a real life saver for me but it has to be used correctly. If you do try lithium don't tell your friends, they start talking reeeeaaallly soft around you!!! I hope you find help here, wishing you peace and some pain free days.
Guiseppi
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nani
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Re: thier coming !
« Reply #5 on: Feb 9th, 2006, 7:10pm » |
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Hi Salena. Sorry you're hurting. Here's a list of CH medications:
http://www.ouch-us.org/medications/medications.htm
It lists abortive, preventative and transitional meds.
pain free wishes, nani
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salena27
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Re: thier coming !
« Reply #6 on: Feb 9th, 2006, 7:44pm » |
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thank you Dave, Bryan,Guiseppi and Nani ,,, so kind to care enough to offer info and support ! It means alot to me !
Praying for a cure for us all!
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chewy
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Prednisone will not likely have any lasting effect unless taken in conjunction with a preventative.
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_Lee_
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Re: thier coming !
« Reply #8 on: Feb 10th, 2006, 12:15am » |
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Trade your Prednisone in for Lithobid and Verapamil, even dickheads claim that this combo works, throw in a few shrooms a year and you can beat the beast, at least I have.
Lee
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| « Last Edit: Feb 10th, 2006, 3:16pm by _Lee_ » |
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sandie99
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Re: thier coming !
« Reply #9 on: Feb 10th, 2006, 11:17am » |
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Salena,
I'm so sorry that you're hurting. 
I'm glad that you've found ch.com and decided to post. Remember, venting is always allowed in here! We understand.
I hope that you'll find meds/treatment which work for you. Verpamil and maxalt rabitab helped me.
Wishing you lots of PF days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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djpaynesr
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Re: thier coming !
« Reply #10 on: Feb 10th, 2006, 1:56pm » |
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Hiya Salena,
Just checkin in.
How are you doing?
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Dragnlance
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Re: thier coming !
« Reply #11 on: Feb 10th, 2006, 9:54pm » |
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Hi Salena
Like the others, I am sorry to see you here, but Welcome you at the same time.
Finding a good H.A. (headache) doctor can be as painful as a full blown CH. In Montana, we seldom get anyone that knows a thing.
I started on the Kudzu this week, and have seen some results that (for me as a chronic) are totally amazing.
I advise against the Pred'zone as it has very nasty long term side effects.
O2 is great as there is no side effects. You need a script from the doc to get it, then set up service with a medical supply outfit. Read the info on the left on O2, as I can tell you from experience that done incorrectly, it does not do much.
Some things that have helped me, are Red Bull slammed at the first hint of the monster, sometimes aborts. The water treatment sometimes works. A hot shower.
I was asked bout the Atomic Fireballs. (a hot candy)
I havent tried it, but jalapinos may do the same thing. The thought is to try to stir some endorphins, which will help endure and sometimes abort an attack. It doesnt always work, but worth a try.
I quit the drugs nearly 3 years ago because they were so ineffective in preventing the pain, or helping with the pain, and some of them knocked my IQ down to less than that of my keyboard, (can anyone say Topomax???)
Wishing you PF days soon!!
Dragnlance
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JohnM
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Re: thier coming !
« Reply #12 on: Feb 11th, 2006, 5:50am » |
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Hi Salena
I have had quite a bit of personal experience with the Prednisone and tapers over the years. It always seems to provide good relief at first which the stops after about 5 or 6 days for me. I have tried bigger doses for longer with slower tapers but always the Ch seems to come back with a vengeance after less than a week.
This has previously been coined as the "Prednisone holiday on this board. It may help as a precursor to other prevents according to some here.
I have found that my cycles lasted much longer when I used Pred. I reckon the cycle length increases by at least the number of PF days.
It has never broken my cycle in the 15 years I used Pred. I doubt I will ever use it again, it was not worth it for me.
Imitrex/Imigran injs work so quickly for me that if I jab as soon as I start a CH it goes to PF in 5-10 mins. The only bother is being woken up in the night, but I can usually get back to sleep soon after. I also find that I get usually at least 12 hours PF after the inj. I wouldn't bother trying to use it as a preventative. Trex pills might work as a prevent but they take up to an hour to have any affect for me and by that time it's too late.
I have used only 1/2 shots ("see button on the left" in my last few cycles to save these expensive meds.
Other forms of Trex - pills, nasal sprays, maxalt etc did nothing for me expcept drain my wallet with wasted meds
Hope this helps
John
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Richr8
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Still looking...
« Reply #13 on: Feb 11th, 2006, 11:01am » |
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...for the right answer because I do not like the side effect of Prednisone, but it does break my cycle very effectively. The time I spend now recovering from psychological and physiological issues caused by the prednisone is time I would have spent in pain prior to it's use. This has been my experience for my last three cycles since I started using the pred taper.
Feel free to PM me if you would like additional details.
Rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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FramCire
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Re: thier coming !
« Reply #14 on: Feb 11th, 2006, 5:09pm » |
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Maxalt also comes in a dissolvable form that is much quicker to work than the pill. Not quite as quick as the Imitrex injectable, but quicker than any triptan pill I have used.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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JohnM
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Re: thier coming !
« Reply #15 on: Feb 12th, 2006, 4:02am » |
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On one occasion I went to visit my GP for a renewal script for imitrex inj at the start of a cycle (I still had some left over from my previous cycle) and a full blown CH started in his waiting room so he saw for the first time the full effect of it - red eye, tears streaming , droopy eyelid and the state I was in. He gave me free samples of the Maxalt which I took in his office. He also gave me a script for 6 maxalt melts and 6 injections
I tried the maxalt MLT which you melt on your tongue. an hour later I was still in so much pain with a Kip 10 I gave in and gave myself an imigran injection and went to PF in 5 mins. I tried the maxalts for the next few CH events but they did nothing.
PS I read here some time ago that the meltng version was developed for some people who could not bear to take pills and that it was not any quicker acting than the pill. Migrainers (and some CH'ers) often vomit during an attack making the pill a waste of time 
John
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