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Topic: What should I do...? (Read 338 times) |
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sandie99
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Wish it, dream it, do it - inspite the pain!
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What should I do...?
« on: Oct 30th, 2003, 5:33am » |
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Hi guys! 
I need some brilliant advice here.
My predisolon treatment failed and ch is back haunting me daily, three attacks yesterday alone. Noooot nice! 
What is worse, my painkiller (relert), which has been wonderful in the past (pain was gone in 10 minutes!), decide to stop working, too.
So: lots of ch attacks, no painkiller!!! 
I am planning to see a neurologist soon, but it takes a while before it's possible. I am thinking about going to see another neuro, as this one doesn't seem to get it right. I know it takes time, but we are talking about a guy who insisted me using a med which made me faint... 
So, what next? What should I do? What meds to ask?
I know there are lots of things to choose from and I have read a lot about different treatments, but here and now it seems, well, too much.
Anyways,
best wishes & PFdays to you all!
sandie99
p.s. I am determined not to let this get me down!!!!
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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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LasVegas
New Board Veteran
Episodic CH since 11 yrs old, now 39.
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Posts: 206
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Re: What should I do...?
« Reply #1 on: Oct 30th, 2003, 9:05am » |
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Sandie,
Plenty of variables when determining what tretment is appropriate. For starters, get rid of any doctor who is not willing to work with you as a team. Ideally, get a doc who is familiar with CH's. Meds that work for some, don't work for others. Dosages that work for some are too high or too low for others. Consider a few other things, your overall health, blood pressure, heart, cardio exercise routine, diet, weight, stress, sleep, work schedule, etc. Some drugs make you very drowsy, do you drive around all day as a sales rep? If so, a med that makes you drowsy could be dangerous. Do you have low blood pressure already? If so, a med that causes blood pressure to lower more than normal could be of concern. How is your heart? Do you get at least 30 minutes of cardio exercise daily? Your blood circulation will have alot to do with how you react to many of the preventative meds. I'd look at past archives in this section, Medications/Treatments and Therapies and review, perhaps print some ideas for your doctor. Don't let your doc dictate to you something that will make you faint or not be appropriate to prevent the attacks, dictate to your doc. See a thread I posted two weeks ago under General Posts titled "Educating the neurologist." You may find this of interest, as I was in a similar situation. Have you tried Prednisone or Verapamil? Good luck.
Gregg in Las Vegas
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Wishing all a Pain Free 2008!
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LasVegas
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Episodic CH since 11 yrs old, now 39.
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Re: What should I do...?
« Reply #2 on: Oct 30th, 2003, 9:10am » |
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Oh yeah, regarding abortives, you mention painkillers. Painkillers are not commonly used by people on this site, as we have found there are not ony potential addiction/withdrawel problems-something you don't need in addition to CH's, but most pain pills are ineffective and many cause rebounds HA's. I highly recommend Imitrex injections or nasal spray, oxygen really helps too. Print some info off for your doc and give him/her a copy. Start with the medical info area on the left side of this screen. Also, a great resource is the OUCH website. Good luck.
Gregg in Las Vegas
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Wishing all a Pain Free 2008!
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jflynn
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I love YaBB 1G - SP1!
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Re: What should I do...?
« Reply #3 on: Oct 30th, 2003, 10:00am » |
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Prednisone never worked for me.
I've done 3 nights of melatonin and believe it is starting to work. Either that or my current episode has spontaneously ended itself. Regardless, no CH last night.
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Cooked Brain
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a.k.a. Max Payne, YOUCH this hurts...
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Re: What should I do...?
« Reply #4 on: Oct 30th, 2003, 2:34pm » |
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well said Gregg!
Sandie: If you are already at the prednison stage I assume verapamil hasn't worked for you either?
if you can tolerate it try ergotamine (methysergide), it s quite heavy, try a low dose and dont use it too long, worked very well for me in the beginning, even BEFORE verapamil.
Hang in there sis, it WILL get better !
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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Unsolved
CH.com Alumnus
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Re: What should I do...?
« Reply #5 on: Oct 30th, 2003, 2:43pm » |
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Find a knowledgable neuro who will see you SOON and not make you wait for weeks or months.
There are actually TONS of meds for CH...mos of us have not tried them all i'm sure (theres just too many)...start the 'trial by error' approach (which can suck at times too)
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I need a fully automatic Imitrex injector
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sandie99
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Re: What should I do...?
« Reply #6 on: Oct 31st, 2003, 6:09am » |
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Thanks for the good advices!
My neurologist is one of the best in Finland what comes to ch. Bit worrying, right? Luckily I study in UK, in London, so I'll be able to find somebody else here.
LasVegas: I am going to ask for oxygen, I've heard that it's the best. Nasal spray (zomig) I tried before did nothing to the pain but made me vomit.
Prednisone treatment failed me now and verpamil was the first I tried.
Cooked Brain: Verpamil was the first preventing med I tried - 3 weeks pain-free, then ch came back worse than ever and I begun to faint as well. Not nice!
Thanks for the ergotamine tip, I've been thinking about that one.
Best wishes &PFdays,
sandie99
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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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Cooked Brain
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a.k.a. Max Payne, YOUCH this hurts...
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Re: What should I do...?
« Reply #7 on: Oct 31st, 2003, 8:27am » |
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before the ergotamine you might want to try a verapamil/lithium coctail, do some reading on that combo?
Hope you will do better soon Sandie, wish you all the best!
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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Unsolved
CH.com Alumnus
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Re: What should I do...?
« Reply #8 on: Oct 31st, 2003, 8:55am » |
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Just out of curiousity ... How much Prednisone were/are you taking ? (High doses always help me but I just don't wanna stay on it for long) ???
I'm also a believer in Imitrex injections ... Wouldn't be here without it !  TGFI
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I need a fully automatic Imitrex injector
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sandie99
New Board Hall of Famer
Wish it, dream it, do it - inspite the pain!
Gender:
Posts: 10429
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Re: What should I do...?
« Reply #9 on: Oct 31st, 2003, 9:52am » |
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Unsolved: the prednisone treatment I had (well, I still have to finish it...) was for four weeks.
Week 1: 2 40mg tablets
week 2: 1,5 40mg tablets
week 3: 1 40 tablet
week 4: 0,5 40 mg tablet
My doc said that this is the dose that should work for me. There were lots of side effects since day one, but already during week 2 I could tell that it's not working as chs came back.
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IP Logged |
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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Cooked Brain
New Board Old Timer
a.k.a. Max Payne, YOUCH this hurts...
Gender:
Posts: 411
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Re: What should I do...?
« Reply #10 on: Oct 31st, 2003, 11:19am » |
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on Oct 31st, 2003, 8:55am, Unsolved wrote:
I'm also a believer in Imitrex injections ... Wouldn't be here without it ! TGFI
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Relpax and Imigran nasal 
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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