Adam has a neuro appmt. on April 3rd.  It has taken awhile to get this but I am hopeful he will be helpful.  He is with the University of SC Neuro dept of the School of Medicine.  His staff "says" he is very familiar with ch.

My question is, does anyone have any suggestions on what to say to this doc?  Adam needs more than o2.  He is so chronic, it is hard to tell day from night anymore.  In the last month he has had 1 PF night. He has found that tylox is the 1 pain med that actually works and does not cause rebound.  However, his means for obtaining this Rx might be questionable.  Don't know how much to tell the doc.

Any help anyone has to share would be greatly appreciated.  We are so excited about this apmt., but I am really trying to keep our hopes at bay.  I know how disappointment can take over after excitement, in so many situations.

Anyway, if anyone has any helpful suggestions, please send them on.

Thanks,
Louise

Take a list of everything he's tried for prevents and aborts and let the doc know... ask questions and talk to him like you do us..

Zonagran is working pretty well for me right now (doc put me on it and took me off topamax - it's about the same as topamax without the side effects).

Has Adam tried the Vit D regimen of Batch's? Might be worth looking into and trying.

We're all looking for the magic bullet.. hope Adam finds his.

:-*

PS How about Melatonin at night for those night hits? Works great for me.. I very seldom have a night hit .. Gives me the rest I need to get thru the days..

I've a neuro appointment on Monday, so what I'm doing is writing down everything I want to talk about, all the questions and anything related.

During the appointment I tick off things as they are discussed so I know that I've covered everything I could think of.

Mike and Barb are right. Write down everything in some detail. It's important and make him sit still for your questions. Also know that neurological tests are pretty boring events and not at all invasive, in my experience. I see one for my epilepsy as often as my regular sawbones.

Good luck and let us know how things turn out.

Charlie

Dittos all the above. And, yes, you should disclose to your doc all Adam is taking...and I mean all. Even if his means of acquisition are "questionable." It could be that what he is taking would be contraindicative to what the neuro wants to prescribe. There is a doc/patient confidentiality. Adam might get a lecture but nothing worse, I should think. Let us know how the visit goes. Blessings. lance

Thanks, everyone.  I really appreciate the help.  And, Barb, no, he has not tried the Vit D or melatonin, yet.  However, we just had a discussion about that last night.  He has an appointment with his new GP next Thursday and I am taking a list of possibilities that we would like to try.  He doesn't want to jump in without some MD knowing what he wants to try in connection with what he is already doing.

So, some of the things we are going to discuss are:  Vit D, melatonin & benadryl, Zomig spray and Frova, and Amerge.

We are wide open to any other suggestions.

Thanks for being there for those who suffer.

Love to all
Louise

Quote:

He has found that tylox is the 1 pain med that actually works and does not cause rebound.  However, his means for obtaining this Rx might be questionable.  Don't know how much to tell the doc.

I notice after having asked this question, you didn't include it in your list of things to speak about with the doc. Oxycodone can be very addictive, and it can mask symptoms that might be helpful to your doctor. I wouldn't ignore your son's actions in this, especially when you hint he is obtaining the drug without a Rx. Just some thoughts on being a careful mom. Blessings. lance

I fully intend to tell both the GP and the Neuro EVERYTHING.  I am too afraid of bad reactions and interactions. 

I love everyone here.  Thank you so much for everything.  Hope, one day soon, I will have a suggestion for something that helps.  I can't wait to share with everyone.

Love to all
Louise