My visit with dr Adkins at Duke

Yesterday my husband and I met for over two hours with Dr Adkins at Duke University. My medical history is long and complicated with a ten year MS diagnosis from Johns Hopkins recently amended to a MAV diagnosis complicated by neurological Lyme disease which was treated with a six month daily IV infusion of Rocephin. I must have 15 MRIs and a medical history of tests, drs appts and treatments that reads like “war and Peace”. Lol

Despite the long history, Dr Adkins asked me to give her an oral history, reviewed certain studies and several MRIs. I have many paraventricular white matter lesions on my scans which complicate the diagnosis as they can be interpreted differently. She asked many questions and listened very carefully to my answers. She mentioned that I had been “tested to death” and would not be repeating any tests…thank goodness

She said that she was very confident that my issue was MAV. As a matter of fact, she said that my presentation was one of the most classic (yet complicated) that she had seen. She did say that the lesions were a bit larger and more numerous than others she had seen…but not unheard of.

So…after several hours of discussion the following was discussed
To my present mix of
1 mg klonopin am and pm
50 mg zoloft pm
Neurontin 100 mg as needed
Verapamil 80 mg in the pm

Dr Adkins asked me to discontinue the neurontin and add Topamax to the mix. There was some discussion as I had tried Topamax before, but it was the generic and I developed a small itchy patch on my stomach. I decided to discontinue it even though the rash didn’t go away immediately and wasn’t red or “hivey”… She has prescribed the non generic Topamax and felt that what I experienced was probably not a reaction to the med. We shall see…

So…as many of us are…I am afraid to start the Topamax…I am to start at 25 and increase 25 every other week. I am to see her in 8 weeks and if Im doing well she will add another med to the mix.

She was very confident that MAV can be controlled but said that each person is of course different and that I may be on some combo of meds for the rest f my life. If this can help the constant dysequilibrium, brain fog and debilitating headaches, I will be truly grateful. All in all it was a great trip to Duke.

If any of you have experience…good or bad with Topamax and a combo of drugs similar to what I am taking I would love to hear from you. Thanks for all the support! It is much appreciated!!

I’m sorry you are having a tough time. I really understand. I am also a patient of Dr. Adkins and I must say I think very highly of her. She put me on a similar drug plan- Verap upped to 360 from 240 (I had to go back down to 240, BP was dropping out at 360) Zoloft and Diomox. I emailed her this week and told her I was not doing any better on the meds so she ordered a lumbar puncture to make sure I don’t have a CSF problem. If I don’t then I’m not sure what her next step will be. I found her to be very through and compassionate. Although she looks so young she is HIGHLY respected in the Duke Network.
As for the topamax- my previous neuro- who I did not like, put me on Topamax. I’ll be honest it was the worst drug I’ve ever taken. It just wiped me out even at pediatric doses and when I was on it I couldn’t even find my words. I gave it about 2 weeks that was all I could stand and then I threw it in the trash. However, don’t let my experience scare you as you know everyone reacts differently to different meds.
Good luck!

Hi Elisha and thanks for your reply… Dip ax is the drug that she wants me to trial next after Topamax… I couldn’t remember the name! I know people have very different experiences on Topamax… I’m trying to get a masters degree too…so I certainly can’t afford to have issues with thinking…oh well… We shall see! Keep in touch and I hope you are feeling better soon!!

My younger sister who is 5’3 and weighs about 100 lbs takes it just for migraines at a super high dose and is fine on it. She said it doesn’t effect her cognition at all!

I am on 100mg of generica Topamax, 50mg am and 50mg pm, as well as 10mg Lexapro. Most days I am at 95-100% and I attribute this to the Topamax, as I’ve taken SSRIs alone before and never had this much relief from the dizziness and brain fog before.

Start slow and low and give it a good time to settle in your system. It may not be the drug for you, but what if it is and you don’t give it the time it needs?

I started with my first 25mg dose at night and it made me very sleepy so I slept very well. I did experience increased dizziness for about the first 7-10 days and then that went away. I went up slowly but also aggressively I suppose to get to 100mg within 5 weeks time. I’ve been on it since June.

Lingering side effects are sometimes tingling in my fingers and toes and I can’t drink carbonated beverages at all. Sometimes I have trouble finding words, but it is not significant enough to impact my life or work.

Good luck!!

Obviously I meant diomax in the previous post…lol. Predictive text drives me nuts!!

Thanks Anne!! I plan to titrate up slowly… Glad it’s working for you and your sister!!

Elisha…it’s your sister that’s doing well on Topamax… Sorry Anne! Haven’t even started it and I’m already confused!! Lol :smiley:

Hi Dee,

Sounds like you had a really good appointment, and I hope you soon work out the perfect medication combination for you.

There’s quite a few people on here who have found topiramate really great for MAV, so I hope it will be the same for you :slight_smile:

Thanks very much for sharing that. It is refreshing to have such a positive appointment. I wish you all the best. I hope so very much that this is the med that helps you. Any idea what she considers a therapeutic dose for Topamax? Does she work with Dr. Kylie who does the CFS work. I’m assuming she might be the neurologist to whom Dr. Kaylie refers people?

Yes, Lisa she does work with dr Kylie … She wants me to start 25mg Topamax tonight (gulp) I hate new meds!!! I am then to increase by 25 mg every week or every other week… My max will be 100 mg. We shall see…fingers crossed!!! :roll:

I am on topamax and i like it. I started low though, i think i cut it in half and upped it every 7-10 days. my only side effect was numbness like my feet would fall asleep all the time! now that i’m at 100mg, i don’t get it anymore but i do have a hard time recalling words and names of things. but, i also have not had an mav attack which i wouldn’t trade for the world. (just wish i could get rid of this other 24/7 rockiness)