irritated....my neurologist doesn't seem to be listening?

[Ashelen]

So I went in to see my neurologist and we talked about the pain management I received while I had my kidney stones and he said it was fine and that I could've called for more meds if I had needed to and he would have considered the two problems separate so not conflicting...which sounds great, right? then he says "we're going to try this old treatment called elavil...it's an old anti-depressant that can be used for migraines" and I said "great, let's try it...but wait, can it cause allergic dystonic reactions?" (he knows I have these and as my neurologist I would assume he would be familiar with the drugs that can cause it) and he said, point-blank "No"...and I said "oh good because I"m terrified to have another one."

well I came home and googled it like I do ALL my meds before I fill them and it says in HUGE bold print "may cause dystonic reaction"...what the heck?!??!! I cross-referenced with several reliable sites...all say the same thing...allergic dystonic reaction. I"m so frustrated. he told me NO...and I guess he either got it wrong (unlikely, because he's a neurologist and is the FIRST person that a patient with this problem is referred to) or...he thought I wouldn't look into it and figured the risk was minimal? I won't even take nausea medicine anymore unless I'm in the hospital having it administered with a nurse nearby to treat any potential reactions...so there's no WAY I can take this medicine..my anxiety would prevent it if nothing else.

how am I supposed to feel about this? i was really hopeful for the elavil because not only would it potentially help my headaches but it might potentially help my depression...but I'm too terrified to take it. I don't want to call him out on this, but he matter-of-factly said that no it wasn't a risk, when even the site that manufactures it lists it as a risk!!!...I'm just confused and irritated. Should I try the med and see what happens?

[Ashelen]

You guys are so sweet and wonderful..thank you so much for the support and advice I don't know how I'd survive without it..I don't know how I did before finding this board!

Well I'm gonna give him a call on monday and let the office know...I'm going to do a little research (and call a pharmacist) on amitriptyline-like drugs and see if I can suggest a viable NON-reaction-causing alternative so I don't just seem like I"m nixing yet another trial med....i think he's frustrated because there have been 4 or 5 that I've dismissed out of hand that I refused to try because of past experience or possible reactions...at one point he tried to prescribe darvocet and when I got to the pharmacy and realized what it was I told the pharmacist to take the meds out of the bottle, put them back on the shelf, and burn the script...dramatic, I know, but I REFUSE to take darvocet, it's toxic IMO. ironically the pharmacist said "I actually hear that a lot...what is WITH this drug that no one likes?" and I explained it and she was like "that's really good to know for the future.."

but anyway enough rambling (I'm good at that!) I wil give him a call...and it is VERY frustrating. I told him I wanted to take a break from med-trying but I think he forgot....and I didn't speak up because I'm a wuss.

I wanted to add that next spring I'll be going back to school to complete my pharmacy tech license....I did some classes when I was in college last time but ended up finishing with an English degree, but now I'm going to go find myself a job that I can do when the kids are in kindergarten in a few years; I would go crazy home without any kids to watch, lol. I'm very excited about finishing the certification!

[JadedSweetheart]

I'm sorry you're having to deal with this!  I know it's frustrating.  I have gotten some strange reactions with certain meds and I have to research them for myself as well to make sure they won't interact badly.
I would definetly call the doctor's office and tell them what you've discovered about the Elavil and ask if there's a comparable med that doesn't have the same side effect.  You may also want to ask the Pharmacist if they know of a good med or research whatever class of drug Elavil is and see if there's another without the risk.  
I hope you're doctor is good about it and open to trying another med.  Sometimes they can be difficult about it but it's worth talking to them about.

[designgyrl0112]

Sorry girl, you can't get a break can you. I've been waiting for your update and this definitely was not what I expected. I've taken elevil before and it put me to sleep.  That's all what I remember in it.  I would call your pharmacist and see what they say about it, then call your doctor tomorrow and ask him again.  Tell him what you researched.  You do know that drug companies put down every single thing that can possibly happen when you take a medication, so theres a chance that this would not happen to you.  And find out if you did take it, is there another medication you can take with it to make sure you don't get that side effect.  Please follow up with the doctor.  And good job of researching!

Karen

[namnam46]

Hi Ashelen,

I'm so sorry that you Doctor was incorrect about the medicine!!  Why don't you call the Pharmacist and see what they say about it as they are probably the most knowledgable about ALL of the Medications that we take and THEN call your Doctor's Office and let him know what your Pharmacist - WARNED - you about AND what you found on line and ASK him to PLEASE double check on it as you are VERY frightened about it and would appreciate an alternative to the Elavil.

You should be commended about checking out your meds FIRST and being sure that they won't harm you at all. We have to be our OWN advocates and this includes on our medications that we take also.  :)

I have a feeling that he didin't consider it to be a risk OR just didn't realize that it could do that as you said that it is an OLDER med and he VERY well may not have realized that it had those properties that cause that side-effect.

Congratulations for finding out this info. on your own!!!...Best Wishes......Sherry

[Ashelen]

just to clarify....dystonic reactions aren't life-threatening...it's a neurological reaction that is terrifying and resembles something somewhere between a seizure and tourrettes...it's medication-induced and generally temporary but long-term exposure to a reaction-inducing drug can cause tardive dyskenesia which IS permanent.