Good visit with new neuro

After getting advice from you wonderful peeps I found a new neurologist who is also certified in pain management. I couldn't be more pleased with my visit today.

He spent over an hour and half with hubby and I going over my migraine history. It was hard to remember how they first manifested when i was a teenager, but we went through my history decade by decade, what worked, what didn't.

Given my horrible experience with Topamax, he wants me to stay miles away from Zonegran, which my old neuro and GP wanted me try. In fact he got a little PO'd when I told him my GP said it was my "last option". He wants me to avoid ALL anti-convulsants since I react so badly to them.

We're going to go back to old-school Doxepin, a tri-cyclic anti-depressant. I had some success with Elavil years ago and the Doxepin has fewer side effects. I'm not excited about the weight gain side effect, but at this point, I just don't care. Most importantly to me, it doesn't have any cognitive side effects other than drowsiness which should lessen over time. It's also used as a sleep-aid, so it would be nice to finally get a good nights sleep.

My research show it's also used for IBS so this could be a two-fer for me (for those of you with fibro, it's also used for that and chronic pain management).

I did have to sign a pain contract, but I had brought up all my reports from my Back Dr. and he took that in consideration and prescribed enough vicoprofen to take care of both the headaches and the back.

He was somewhat surprised that dilaudid and oxycodone don't work for me, but he said that happens with some people, that they just react differently to different drugs. (He said "you do know that dilaudid is five times stronger than morphine? Yup, I know. That's why I was so happy when I got it, and so disappointed when it did nothing for me).

He continued with the Toradol injections and the Zofran.

He wants me to try the triptan Axert, but not until we see what happens with the Doxepin. He doesn't want to throw to many things at me at once so we can see what works and what doesn't. I liked that approach.

He also wants me stay on my Hormone Replacement Therapy. That rather surprised me, but he said since I use a patch I'm not having fluctuations of hormones, and that the M's could very well get worse if I go off. I know my mother's M's got worse after she went through menopause. I seem to remember there are several on this site who experienced that also.

All-in-all I walked out of there very hopeful and I haven't felt that way for quite awhile. He was a very nice, personable man, as well as a pretty snazzy dresser. When I was setting up my next appt. the nurse who I've been talking with on the phone asked me how I liked him. I told her I did very much. She said "I knew you would just love him". It's nice that his staff thinks that highly of him also.

I'm so happy you had such a good appointment. Everything seemed to work out really well.

Great news!

lol

all that Zonegran stress for nada.

Well good to know he IS treating the individual, and just b/c he rx'd that for me, he did NOT feel that was the answer for you.

Glad you liked him. He's definitely unique. Can't type much. I'm exhausted. I'll catch up soon tho. Just wanted to say sooo glad it went well =)

Jess

That's just great Char! a positive 'medical' experience for a change!
A snazzy dresser to boot, you say? oh, what did he wore?

Risa

It was his shoes I mainly noticed, black pointy toed with silver buckles. He had on a very well cut suit, blue shirt, and a very distinctive knot in his tie. I had heard he was a fashionista, so I wore my fancy bib necklace, and yes, he commented that he liked it.

I am glad your appointment with your new neurologist went so well. Appointments with neurologists are so nervewracking b/c so much is at stake. I have one tomorrow and I want so much for things to improve for me. I am not sure if my neurologist will increase my zonegran (topomax stopped working for me) or add a muscle relaxant. I want results now, so I would like him to do both. Later down the line, if need be, if something starts to work we can rule out which one it is. I just think that these doctors do not understand the burden of living with CDH/migraines. The negative impact it has on our lives; the stress/the toll. I have been waiting for this appointment for so long and then whatever we do try to do there is more wait to see if it works. Seems like there is so much waiting.

So happy for you Charlotte!

I'm so glad you found a doctor who was willing to take the time to listen to you and try things that would work for you. I hope the new round of meds to work for you and are able to give you some more relief.

I'm going back to see mine tomorrow...but that might be the subject for another post.

Becky

Whoa he sounds like a good man, I do hope the new regime works for you. Thinking of emigrating so I can see him

Liz

I have tears rolling down my face, I am sooooo happy for you!

Perhaps it was three years ago that I was reading a PTC/IH forum, and a post caught my attention. It was written by a pregnant woman who was telling the story of how her neuro was getting her through the pregnancy when she could not take Diamox. I knew from reading her story that her neuro was very unique. I wrote her a message, we talked on the phone, and that is when I first learned of him. She assured me he was well versed in Chiari/PTC. Just what we personally needed greatly!

Mishkyn (here) was the first to see him. He truly saved her life from the horrid despair she felt from not having a good doctor when she moved back to her home state to care for her elderly mother. I knew from hearing about her appointment that we needed to see him. So we went next. And since then...others here.

We have only seen him twice, but it is because we have been so involved with surgeries and neurosurgeon appointments.

He referred us to a particular neurosurgeon in 2008. That neurosurgeon did a re-do decompression on Anna that September. I have to say, yesterday we received the films from Anna's latest brain MRI. Her Chiari site looks so good. No herniation--good CSF flow. The last brain decompression is "holding." At least we know that much at this point in time, and it is a comfort.

I should quit babbling. But your post made me so happy, Joan, and I sure use that today.

Cheryl

I'm so glad it went well.. A doctor who really listens is worth his weight in diamonds!

That's such fabulous news! I'm so glad, and I hope the new meds work out for you. Yay!!