Can someone give us a list of what ALL the top Doc’s we can think of and there Favorite MAV preventative to start with? It would be nice to see the comparison between them all!
Dr Halmagyi - Hearing and Balance Clinic at the Royal Prince Alfred Hopsital Sydney - Prothiaden (aka Dothep). Starts at 25mg, going up by 25mg every couple of weeks to 75mg. If required (eg me!) can keep going until 150mg. He’s also very supportive of intermittent use of low doses of Valium. He thinks it is an amazing drug and I quote “should be in the water supply” :lol: .
Halmgyi, Sydney –- Prothiaden (possibly commonly used by Nick Silver, UK)
Waterston, Melbourne – Pizotifen or Sandomigran
Rauch, Massachusetts – Nortriptyline
Baloh, UCLA – Celexa
Hain, Chicago – Effexor
Tusa, Atlanta – Paxil
IF you notice on Dr. Hain’s website, he lists Topamax (and other anticonvulsants) as his first line treatment. However, if you go into each med, he seems to rave about Effexor most of all. He also says that more than one class of meds can be used, but doesn’t want to use Top and Fex together as he says they are the same agent. I don’t understand that.
Seemingly, they all use antidepressants first choice vs. anticonvulsants.
Hi, I saw Dr Silver in December 2010 and he’s put me on Lyrica. I’m building up slowly to 150mg am and pm. He seemed to think that this would work for me.
any luck with the Lyrica so far? What are your main symptoms?
Ron Granot, Bondi Junction, Sydney – Propranolol
For anyone who needs a pediatric neurologist (I know, that’s just us, but you never know who else might read this!), there’s Lauren Plawner in Seattle, WA. We think she’s fabulous.
She likes to start with propranolol. She says it’s effective 75% of the time (at least in her practice), and it’s almost always well tolerated.
Dr Suretheren, The Balance Centre Medway Kent, UK: Lyrica, Amitripyline, Nortriptyline, Pizotifen. Only these; doesn’t use any others.
Just to clarify here, it looks like mist docs prefer using an antidepressant off label as a first try rather than a neurological drug or a calcium channel blocker? At johns hopkins I was girst given topamax and when I had adverse reactions to it, verapamil was prescribed. I wish there was a clear protocol for this… it makes it quite difficult to know ehat is the best way to go! It also seems that tthe docs are not in agreement either! I still have hope though!!!
I think it may be helpful to reference the MARD (migraine anxiety-related dizziness) paper when thinking about how best to tackle this. In that paper, they show the following diagram:
— Begin quote from ____
In our experience, patients with MARD in whom balance symptoms predominate should be treated with a combination of an antidepressant, such as imipramine, and a benzodiazepine, such as clonazepam. Sertraline and diazepam are alternates. For patients in whom vertigo is considered a migraine aura or migraine equivalent, a triptan may be beneficial for acute attacks. Patients with MARD in whom migraine (headache) predominates may also benefit from treatment with an antidepressant. Our preferred medication is imipramine. This type of patient may also benefit from treatment with an anticonvulsant such as topiramate or a calcium channel blocker such as verapamil.
— End quote
In those of us where anxiety is a considerable problem I think it makes sense to tackle an antidepressant and benzo as a start. I don’t know about the triptan as I’ve never heard of this working in MAV personally.
In reference as to what migraine preventative to use, I believe they all have a similar success rate in efficacy. What the docs try to do is tackle some comorbid issues when deciding on which med to use. If you have depression/anxiety, then an AD/benzo combo…if you have high blood pressure, then propranolol…if you are overweight…Topamax…sometimes it depends on what other meds someone might be one too, and what might not work together.
Then it’s just pin the tail on the MAV donkey…figure out which one works with tolerable side effects…
Dee, at Hopkins (John Carey) started with nortrip and diet, and that’s been it.
One piece of cheering news: DC Science Writers Assocn’s proffl development day includes meals, and they offer to accommodate special dietary needs. I told them, MAV–low triptamine, they asked what this means food-wise, and they didn’t blink when I told them!
Thank you so much guys! Your replies are so very helpful and help me to better understand this! As you may or may not remember I was diagnosed with MS first ten years ago at Hopkins but my diagnosis was recently changed to MAV! So I am starting from square one. The wonderful science-backed info on this site has helped me tremendously to start to understand this disease. Thank you
Scott, I know I’ve seen the MARD paper on this site but cannot locate it tonite. Can you let me know where to find It? Thanks in Advance!
Does anyone know what Dr David Buchholz preferred meds are?
It doesn’t really matter what doctor favourites which med. They are all different and even then there’s no guarantee what will work for you regardless of their preference.
The best thing you can do is look at your own personal co-morbidities such as anxiety, depression, high blood pressure (if they exist) and choose a Level 1 migraine medicine with your doctor’s supervision that will tackle these issues as well. See the 2012 Guidelines in the General Discussion forum.
Thanks Scott. I was just wondering and curious!!
Just joined. Any good doctors in Central Florida/Orlando area (the Headache Center is not on my insurance)?
I’m feeling like a doctor orphan since my GP of 20 years just retired:(! I’ve been dealing with this for nine months with mostly dizziness, occasional auras…and crying. I’ve gotten into cc debt going to specialists and doing tests (MRIs, MRA, blood work, estrogen levels, ear tests, etc.); all with negative results. I’m coping with my high-stress job as a high school teacher and some days it seems impossible; today I had a first time symptom that started yesterday of hearing a continuous tunnel-like humming or fullness in my ears that makes sound intolerable (I was asking kids to please lower their normal inside voices, which they did, and it still bothered me). The ENT was the one that directed me towards migraine, but he made clear that he doesn’t treat it and the neurologist just wanted me to take Imitrex daily. When I asked him if there was any alternative or maybe something I could take as needed, he flat out said no. I then asked for further information and they told me I could go online! I’m reading “Heal Your Headache” and working on eliminating trigger foods; mostly I need a doctor to help me along this path. Right now an actual cure would be great, but I’d settle for a helping healing doctor.
I spent an hour reading some great threads on this forum, 'til I felt overwhelmed. Many blessings to you all. What a wonderful caring community:)!
Hi Lisa…so sorry about all the trouble getting the tests and finding a good Dr.! It must be so hard to work…especially when you have to be on your feet and talking and stress all day! I can barely manage walking a block without having to lie down. You are very strong.
I am in the Orlando area, and have had trouble finding the right doctors, too…but luckily just for the last couple months.
Long story short, I did just find a helpful GP who finally listened and is taking action for me. He didn’t know what it was, or anything about MAV, but he got me into a Neurologist that he thought would help the next day, and I think she is going to be great. She knows about MAV, has had “about 5” patients with it, and I really like her knowledge base, attentiveness, and her bed side manner. She specializes in epilespy and migraines, and specifically in women.
Her name is Dr. Denise Taylor in Orlando (off Sand Lake Commons Blvd.). I have only been to her once, and had a phone consultation afterward. After 2 other neurologists who had no idea, and another GP who abandoned me, it was so wonderful to meet with her.
My new GP is Dr. Voirin, in Oviedo. Very caring place. They also said they could get me into Mayo quickly if I need it (I am currently on a 5-6 month waiting list).
Last month I made an appointment with Dr. Kalidas, a migraine Dr. at USF in Tampa…it is coming up 10/8. I am not sure I am going to pursue USF or Mayo now…I may just go with Dr. Taylor. She trained with Dr. Kalidas at USF, so if I do go there, it should be a good complement, and Dr. Taylor said she is happy to work with USF to coordinate my care so I don’t always have to drive to Tampa.
I hope this helps!