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   Caught between the S and the S
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   Author  Topic: Caught between the S and the S  (Read 398 times)
SophiaK
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Caught between the S and the S
« on: Mar 26th, 2006, 10:34am »
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So, after being treated by a Dr. that totally ignored my allergy to sulfa drug and proscribing topamax twice (different doses) having bad reactions both times.  Then he gave me a presciption for Zonogran telling me that it is the same as Topomax (that's when I finally woke up) he put me on Pred at 60m a day indefinatley, Depakote,  360mg Verapamil, imitrex, long story short, I finally saw a real doctor yesterday, who found that I have irregular heart beat and possible fibrillation, also limited range of motion in the cervical area, now I need to get a EKG, and a MRI of the cervical area.  We will need to know how much nerve damage may be causing some of my HA, He is tapering me off of pred and advised me strongly against taking imitrex I'm too open to stroke and heart attack. Also informed me that at my age to come down with 'CH is uncommon. He was articulate and gave me a 'real' examination.  Why am I talking about this, I'm angry at the fact that some Drs are so damn irresponsible and know we have to monitor them for our own health.
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Karla
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Re: Caught between the S and the S
« Reply #1 on: Mar 26th, 2006, 1:31pm »
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So sorry your going through this trial right now.  I sometimes think Guinee pigs is all we are to drs.  I hope you find some relief for your headaches soon and also that your heart is ok.  That must be real scarry.  I know when I took 960mg of verapamil it caused me to have an irregular heartbeat and freqed me out.  As soon as i went off the medicine my heart was fine again.  I hope that is your case and it is nothing permanent.
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Karla
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BarbaraD
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Re: Caught between the S and the S
« Reply #2 on: Mar 26th, 2006, 5:50pm »
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Sorry you're going thru this. It's stories like this that make me realize how lucky I am (even with these damn headaches). I have two great docs (neuro and a GP) who actually "listen" to me and try their best to "help" me. They've both seen what I go thru (had hits in front of both of them).  
 
When I hear of something new, I call them and they either write a script or give me "reasons" why not. I would wish everyone could find this in their docs. I'm still chronic, but at least I feel better about it....
 
Hugs BD
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Re: Caught between the S and the S
« Reply #3 on: Mar 26th, 2006, 5:55pm »
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It's a little scary when you realize your headache future is almost entirely in your hands. Hoping it all turns out to be nothing and you get relief.
 
Guiseppi
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Re: Caught between the S and the S
« Reply #4 on: Mar 26th, 2006, 7:25pm »
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Sophia,
Sorry to hear the trouble you're going through.  What is your age, that the doctor whould say it is unusual?  CH can hit anyone from 4 years old to 70.  Hope they can fix your neck and that is the casue of your headaches.  Certainly hope your heart is okay.  
Best wishes for PFDAN,
Kathy
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Re: Caught between the S and the S
« Reply #5 on: Mar 28th, 2006, 11:27am »
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OK, I just turned 71, I look at that number and find it difficult to know that's me.  
Unfortuantley, Imitrex is out as I showed up with Atrial Fib on a ekg and will be getting further testing next week. Getting old is a bitch.
I will be getting a MRI to see what damage is in the cerivcal area and work from there.  
Meantime, I can't wait until I'm off of predisone.
 Funny (?) I am taking Verapamil for CH and find out that I would probably be put on it for other things anyhow.  
Thanks for the support at a very difficult time in my life.  This is not what I envisioned at this late time in  my life.
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E-Double
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Re: Caught between the S and the S
« Reply #6 on: Mar 28th, 2006, 2:24pm »
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OXYGEN!!!!!!!!!!!!!!!!!
 
And give zyprexa another try Kiss
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Re: Caught between the S and the S
« Reply #7 on: Mar 31st, 2006, 11:13am »
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God. Tell me about it. The medical "profession" in the U.K. has NO IDEA. All the quacks I've seen treat you like a prima donna with an attack of the vapours. You know - "there, there, take two asprin and don't bother to call again.
I have no faith in them at all.
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