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Topic: new neuro , renewed hope! (Read 1191 times) |
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mezza
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new neuro , renewed hope!
« on: Mar 28th, 2008, 7:32pm » |
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I have been in cycle since march 2nd or so- I am episodic - my last cycle was 4 years ago. After finding this site this time around, i took the good advice and visited a neurologist. My first visit to him was mixed in terms of hope- he indicated ( wasn't sure he was joking at the time) that women don't get CH and that estrogen was my problem ( even though I have never had difficulties in the past in that area) My first visit to him after having already been on a pred taper by my gp was March 19. Got script for o2 and 240 mg of cardizem and of course imitrex ( was already taking that anyway) Said to come back in two months. Didn't feel so great about the visit but was desparate for some relief. Began questioning how to taper meds if they did work etc.
Needless to say cardizem didn't work - went from 1 hit at night to 3 hits. Went back to same neuro wed ( the 26th) He took me off cardizem and put me on propanolol and seroquel. I questioned this at the time , ever so gently, mentioned verapramil, mentioned even increasing ccb or adding depakote etc. He said no, that there would be no reason to increase and he said anti convulsant wasn't indicated. It became clear he thought i didn't have clusters but migranes. So i fill the scripts thinking well what choice do i have. Seroquel sucks- makes me loopy, dizzy and pretty much pass out. Propanolol- never noticed a difference.
This am I then looked on the ouch website again for a doctor here in NC. The doctors listed were far from where I lived, but I called the closest one anyway. I must have sounded pitiful because they agreeed to see me today.
I am so glad I went. THe doctor was great! He is a little like Fred Rogers, very kind, very deliberate. He gave me verapramil 480 mg, frova and indicated to me that propranolol wouldn't work with clusters, couldn't figure out why i was put on seroquel other than to help me sleep. Had already been on two pred tapers so we didn't try that one. He ordered an MRI, also wanted to see me again in two weeks to make sure we were on the right track here. So just wanted to again express my appreciation to this site and all the support Even if this round of meds doesn't work- at least this guy knows what he's talking about and i have faith that we'll get it figured out!
That other jerk just wanted me out I guess and didn't care If rotted on the other meds.
I feel so much more hopeful! 
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debOUCH
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Re: new neuro , renewed hope!
« Reply #1 on: Mar 28th, 2008, 7:43pm » |
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Some of those damn doctors suck!! they just dont give a rats ass!! i am glad u found a good one, fred rogers........my 23 yr old loved him when he was little,!!a kind compassionate caring person is what we all NEED...............sending some hugs to you in nc, been there many times, and PFDAN ahead.....................
deb
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kevmd
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Re: new neuro , renewed hope!
« Reply #2 on: Mar 28th, 2008, 9:37pm » |
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Glad to hear some confidence and hope. Having a doc who gives a shit can do that to us. I hope you are on the right track to being pain free.
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Batch
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Re: new neuro , renewed hope!
« Reply #3 on: Mar 29th, 2008, 12:41am » |
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Okay... Now how is the oxygen therapy working and what flow rate are you using?
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sandie99
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Re: new neuro , renewed hope!
« Reply #4 on: Mar 29th, 2008, 4:53am » |
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Your new doc sound promising! That's great!
Wishing 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)
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mezza
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Re: new neuro , renewed hope!
« Reply #5 on: Mar 29th, 2008, 7:00am » |
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thanks for the kind words-
batch- o2 it is okay- i think i am too inpatient with it. my regulator only goes to 8 lpm the highest they said they had. My new neuro said he wants me to get a different company to supply me a regulator that goes higher at a minimum 10 lpm. i can tell it helps with shadows but in the midst of my middle of night hit - i get on it for 5-10 minutes, sort of get pissed about the pain and just do the imitrex jab- I am running of trex though so i had made my mind up yesterday that if i got hit again after last night i was going to do 20 minutes on the thing and see-
I just get sick of feeling the pain.............
But i will say that the frova worked for 12 hours for me til i got hit.
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DennisM1045
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Re: new neuro , renewed hope!
« Reply #6 on: Mar 29th, 2008, 7:36am » |
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on Mar 29th, 2008, 7:00am, mezza wrote:| But i will say that the frova worked for 12 hours for me til i got hit. |
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I'm happy you found a Dr to work with you. That's great.
I hope he cautioned you about mixing triptans!?!?!
Forgive me if this is redundant info for you. Frova is a triptan just like Imitrex. While there have been some studies about mixing them, it's usually Imitrex followed two hours later by a preventative dose of a longer acting triptan like Naratriptan.
The goal is to prevent reattack. I've not heard of Frova followed by Sumatriptan 12 hours later. Frova has a half life of 26 hours in your system.
If you are going to use Frova as a kind of prevent it is more important to get your O2 regulator replaced with one that'll give you 15lpm.
If your Neuro is on board with this strategy, great! If not, please clear it with him first. I don't want to see you blazing trails in triptan use only to wind up hurting worse than you are now.
Good luck...
-Dennis-
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mezza
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Re: new neuro , renewed hope!
« Reply #7 on: Mar 29th, 2008, 7:42am » |
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hey dennis- thanks for the heads upnand looking out for me here-.
My doctor said only one imitrex when i take a frova in the same day-
Your right - gonna call around about that regulator today- Again just being too inpatient and want immediate relief- seems sort of selfish doesn't it? 
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Guiseppi
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Re: new neuro , renewed hope!
« Reply #8 on: Mar 29th, 2008, 11:52am » |
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Then I'm as selfish as you are! I want relief and I want it NOW!!!! If you get the high flow regulator I think you'll be pleasantly suprised at how fast it drives the demon out!!! Hang in there, we're with you on this!!
Guiseppi
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sandie99
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Re: new neuro , renewed hope!
« Reply #9 on: Mar 29th, 2008, 11:57am » |
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When I'm on pain, I want relief ASAP! And no matter what it takes, no doubt about it.
Lots of PF days your way,
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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DennisM1045
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Re: new neuro , renewed hope!
« Reply #10 on: Mar 30th, 2008, 1:06pm » |
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on Mar 29th, 2008, 7:42am, mezza wrote:| seems sort of selfish doesn't it? |
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Are you kidding? Wanting relief from this kind of pain makes you a normal sane person. I've said this before; I'd drink rat piss if I thought is would take the pain away 
Sounds like you have an aggressive Dr. I hope the strategy works for you. Please keep us posted on how it goes.
Hey Linda, can we get this poor guy a decent regulator?
-Dennis-
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mezza
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Re: new neuro , renewed hope!
« Reply #11 on: Mar 30th, 2008, 8:45pm » |
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Dennis- i need to add the gender thing to my profile- I am a female-
As for the o2 regulator i have to call around- i haven't been very aggressive in locating one- i could also check ebay too.
Definitely a good neuro finally- no major hits since friday when i started the verap and frova. Haven't had a trex since friday either. I think either my cycle is winding down - its been a month( the longest ever) or the verap is working- I actually cleaned the house today and went grocery shopping- my kids are happy!
Head finally feels clear too since no more prednisone- don't feel evil anymore and can actually laugh at joke vs wanting to make fun of the person for making a joke-
Thanks for all the advice and assistance. I am going to hang around and see if i can help others too - this is an awesome site and if it weren't for all the folks on this site there is no way i would be feeling as decent as i do right now-
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DennisM1045
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Re: new neuro , renewed hope!
« Reply #12 on: Mar 30th, 2008, 9:10pm » |
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Damn mezza! I'm sorry. I knew I had a 50-50 shot at it. I'll blow that one every time  Sorry hun...
-Dennis-
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Linda_Howell
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Re: new neuro , renewed hope!
« Reply #13 on: Mar 31st, 2008, 3:10pm » |
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Sorry I missed this thread.
Mezza, If you cannot find a reg. that goes to 15 lpm...please pm me your full name and address and I will send you one.
Thanks for the heads-up on this one Dennis.  I try to be everywhere, but once and awhile I have to sleep or eat or such nonsense like that.
Linda
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KatzPurr
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,Re: new neuro, renewed hope!
« Reply #14 on: Mar 31st, 2008, 3:26pm » |
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Oh mezza dear, I guess we are all selfish then, because I doubt there is a clusterhead here who doesn't want instant gratification on this one. I would wager that we are probably most vigorous pursuers of PAIN RELIEF in existence and so be it! What ever it takes to feel better by all means you do it!
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mezza
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Re: new neuro , renewed hope!
« Reply #15 on: Mar 31st, 2008, 7:07pm » |
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Thanks linda- I will look on ebay tonight and may take you up on your offer if I'm not successful in the next couple of days! thanks again
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