Doctors in US

I live in NY, and have been to several doctors who diagnosed me with MAV. I spent my longest time with a doctor in Manhattan, who ended up mismanaging my care. He kept on changing my meds, without giving anything a fair trial. I currently am seeing Dr. Buchholtz, author of heal your headache. Although he is quite intelligent, he does not prescribe meds. He writes a report which he wants your primary care physician to follow in which he explains which meds I should try. I am not at all happy with this approach. I want my neurologist to prescribe my meds. I’m currently on the max dose of Verapamil with no success. I had seen a Dr. Priesol at mass eye and ear in the past, and am thinking of returning to him. His drug of choice is Nortriptyline. Has anyone found an excellent doctor in US. If seems like it took some time for me to get diagnosed, and then when I was finally dx I wasn’t managed well with meds. IT is a never ending battle. I just hate everything about this illness.

Dr. Timothy Hain in Chicago is one of the best and used by many here. There is also Dr William Young at Jefferson Headache Center in Philadelphia and Dr. Jason Rosenberg at Johns Hopkins. There is someone else in NYC that Howie goes to and he has had great success with. You should be able to find it by searching using Howie in the search field. There is also someone in North Carolina but I am not sure what his name is. Those are the ones that I know of. I have spoken to Dr. Hain and have seen both Dr. Young and Dr. Rosenberg. I liked them all and feel confident that I will eventually get better with their guidance. Ben

Ben - thank you so much for your inpt. what meds have these doctors recommended to you?

Lisa, I started with Effexor. For me, it didn’t do it and made me very anxious. Next up was either Nortriptyline or Verapamil. I went with Nortriptyline, which I just started last week. They all seemed to view Effexor as a good starting point. They also all view Topamax as a very good option but usually reserve it after trying the others depending on the person’s background and other issues - for me, I am already very thin (due to a bout with salmonella some years ago) and my job could make it difficult to deal with the potential cognitive side effects - so they thought we should try some of the others first; not to say I would definitely loose weight or have cognitive difficulties but due to the side effect profile they thought it should be a try further down the road if needed. Unfortuntely, it really seems like a trial and error with respect to each individual and it can take some time because they want you to try the meds for 2+ months before giving up on it. I belive that Rich almost gave up on topamax but stuck with it and had great success after 3-4 months. It is very difficult being patient, however! Good luck and keep me posted. Ben

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I currently am seeing Dr. Buchholtz, author of heal your headache. Although he is quite intelligent, he does not prescribe meds. He writes a report which he wants your primary care physician to follow in which he explains which meds I should try. I am not at all happy with this approach. I want my neurologist to prescribe my meds.

— End quote

Lisa,

This is actually a common practice amongst specialist doctors, they diagnose, and then send you back to your regular doctor with a treatment plan. This is especially true with the more specialized doctors such as the ones named above. That is what happened to me.

My insurance company wouldn’t pay for the doctor that was recomended, stating in a letter that they sent me that one neuro is as good as any other, and that they wouldn’t pay for the more expensive one. This neuro didn’t have a clue as to the cause of my dizziness/balance problems but treated me for my frequent headaches. He gave me a prescription for Topomax and sent me out the door, with orders to follow up with my regular doctor unless things got worse. The Topomax ended up giving me one big never ending headache, and a very bad temper so I took myself off of it. I ended up going back to him after I took myself off of the Topomax, and he pretty much told me he couldn’t do anything about my dizziness, and since I wouldn’t take the Topomax he could help me with the headaches either. (Funny thing is, he trained under the doctor that eventually did give me the right diagnoses.)

I ended up paying out of my own pocket to go see the neuro I was recomended to. She gave me a diagnoses of MAV and a treatment plan to take back to my regular doc. My regular doct and I played around with the meds as per the neurologists instructions and eventually found the right one for me. I have never seen the neurologist who diagnosed me a second time, and I am doing much better these days.

I guess that part of the reason that specialized specialist doctors do it this way is that they are expensive, and most insurance companies will not pay for a treatment that could be done at a fraction of the cost.

Brian

Ben - thank you so much for your response. lots of luck on the Nortriptyline. I actually saw which doc Howie went to. I actually saw that doctor for many months, and he mismanaged my treatment. An extremely kind doctor, though.

Brian - thanks for the response. what med are you on now? I think for Dr. Buchholtz it’s not a matter of expense. He explained that he doesn’t want to take his time managing meds.

Hi Lisa,

I think you’re the first person I’ve seen who has visited Dr Buccholtz. Did he have much to say to you about migraine and dizziness? He doesn’t mention it much in his book. Maybe he’ll bring out a 2nd edition one of these days and add MAV to the list. You definitely sound like you’re in good hands.

Scott 8)

Scott - He doesn’t use the term vestibular migraine or migraine associated vertigo. He said that it is still a migraine, and he just says migraine. He does have a section in his book about vestibular symptoms, but it’s not that long. He said that he sees at least 2 new pts a week with our symptoms. I am very disappointed actually because I am not comfortable w/ his approach of not prescribing my meds. so, even though he is very knowledgeable I really want my neurologist to be my prescriber and person I speak to in between appts

Hey Lisa,

Interesting that he didn’t label it as MAV. But then he doesn’t believe in tension headaches either. He thinks it’s all migraine (I agree). I didn’t know some specialists worked that way myself in terms of having someone else writing the script … I guess it’s more an American thing to reduce costs as Brian pointed out.

Scott 8)

Hi Lisa:

Sorry you had a bad experience with Dr Newman… I am back to 95% or so with Zoloft and Verapamil… He is caring…Runs a support group once a m onth and lets you eamil him with nay questions. He gets back to you by the end of the day. I am a little surprised. The one thing that I find interesting is every doctor on his staff suffers from migraines including himself…

Howie

We have a similar system here in the UK. The neurologist writes a report to your GP with all the instructions and the GP writes all the prescriptions you need. You then see the neurologist twice a year (at most) for updates. They are however available for advice if you need it in the interim.

Both the neurologist t I saw were willing to write the prescriptions for medications. I find it odd that some will not I would definitely want the doctor that thought I needed this to be the one to “follow my care” from start to finish.

I have an appointment with another neurologist simply because I did not feel comfortable with either of the others I saw it was basically write the meds and see ya in four to six months. I need more than that to help me like feeling like they are really listening to me when other symptoms come up and being able to explain it to me in layman’s terms so that I have some idea what is going on.

I am so med sensitive and have told all my doctors this and they have started me o very high dosages of medications which I know my body cannot tolerate. Very frustrating cycle finding the right doctor…no doubt.

Howie - thank you for getting back to me. I liked Newman very much, as is extremely kind. However, he quickly switched my meds if I had any side effects w/o getting me to a therapeutic dose. Eventually, he hospitalized me for 1 week to “break the migraine cycle” which did not help. I am just wondering - did you first take Verapamil alone. if so, how were you feeling on just verapamil? what dose? did you need the addition of the SSRI to make you feel better? I actually went to one of his support groups, but I was the only person who went that day.

I just got back from my PCP, who was very nice but wasn’t at all comfortable prescribing meds for a dx that he is not familiar with, even with Dr./ Buchhotlz’s report. It wasn’t a financial thing in the states for the reason Dr. B wanted to do it this way. He explained that he didn’t want to take time out of this day to manage meds. He also refuses to help with disability. I already have it from a prior doctor, but currently no one is following up with disability. this is all so frustrating. just want my life back and to return to a job I loved

I was already on Zoloft for anxiety and depression as I was never diagnosed before Dr. Newman. He added Verapamil and now I am on 240 mg’s. He is very sympathetic as far as side effects. So if the patients complain he will try to find a medication without a bad side effect profile. I have not gone ikn a while but have been to support groups with as many as 15 to as little as 5.

I had a great experience with newman. He actually helps me manage my doage over email so I do not even need to see him… I personally would reccomend him… Maybe give the medications a shot again with him and try to stick out the side effects… Like I said I am 95% on medication…Only time I ever had a relapse was coming off medication to see if I can cope without it.

Howie - so glad you are doing so well. thanks for the response. THat is exactly what happened. HE was so sympathetic about side effects that he quickly changed each med without giving them full trials. HE is extremely kind

I will let u know when the next support group is and I will go. The lady that is running this now is trained in biofeedback which can help as well

Howie - I actually met the lady when I went. She was very understanding. However, since I’m no longer a pt of Dr.Newman I don’t believe I can attend the support group. thank you, though.

Yes you can…You can bring guests. Plus because Dr Newman and his Headache Institute are really one of the only reputable ones in our area. A lot of other dr’s sent patients to the group…CT, NJ etc…If you want to go I will say I am going with a guest…I’ll wait till they schedule more people… Joanne helped me with my anxiety a lot…I still talk to her

Good luck with Dr Hain…I think most of the doctors use the same protocol it is a matter of what medications are right for the individual patient. Also doctors may use the medication they have had more success with… Such as Verapamil in that class… So many SSRI’s

Thanks, Howie. Sure - let me know.