Neurologists

I need to see a neurologist. Although I've had migraines for most of my life I've never been to one before. A few years ago I went to see one and it was a complete disaster.

First of all, I'm a medical negligence lawyer. The day before my appointment I was at court and a man got into the lift at another floor looking slightly anxious. I was going to reassure him that everything would be ok, but I thought I should just leave him be.

Next day I turn up for my first appointment lo and behold, my new neurologist was the man from the lift. My first thought was 'was he an expert or a defendant?' Ie, is he being sued for medical negligence? I mentioned that I saw him and he said he recognized me (didn't tell me what he was there for) and that I looked anxious at that time (I was concerned about him as he looked so upset).

So the appointment went on and was a complete disaster. He was old school and refused to answer any questions that I had, including replying with sarcastic commments and eye rolls when I asked questions. He told me to take beta blockers and when I asked what the side effects were he said 'none'. Of course I didn't believe him and then he started berating me about how I was highly strung and he remembers that from our ride in the elevator at court! I couldn't believe it.

He refused to answer any questions, demand I take medication that he wouldn't explain properly and rolled his eyes when I asked if I should have another CAT scan (I haven't had one since I was 3 years old). I paid him $200 for insulting me and left the place feeling really shaken up and almost certain he was a defendant the day before (he was actually a 'gun for hire' style of expert).

Now I really need to see one but I think I'm putting it off. I'm not stupid and I work in an industry where I see medical mishaps and doctors being wrong all the time. I need someone who will work with me. I've booked myself in with another one. Looking at other blogs he's described as being a 'straight talker'. I like this, but not if 'straight talker' is just a euphemism for 'old school tool'. I just don't have the money to throw away on another doctor that will just shove pills down my throat, because I won't take them unless I really understand why.

What experiences has everyone else had with neurologists?

If I had to stereotype neuros, your description would be spot on. Personally, I have better luck with an understanding primary doctor, but I'm at the stage of treatment where I'm more maintenance, and he does send me out to various specialists. Why did you think you should see a neuro? Do you feel your primary doctor is out of ideas, did you think the neuro would have answers? A primary doctor well-versed in migraine or whatever condition/s you have is a good option for many of us. Good neuros seem to be even tougher to find than a good primary doctor. I've been to dozens of doctors due to moving, insurance, new conditions, and just plain personality differences. I have gone to many neuros only once due to situations like you describe. Just be sure to only get meds from one doctor, and shop away! Doctor reviews and referrals from doctors you trust are your friends. I do well seeing my primary doctor 90% of the time (monthly visits at least), and then having any specialists I see send records over so my primary manages my care and prescribes my meds. Best wishes.

Sorry you had such a bad experience. I've had too many appointments like that myself.

The real turning point for me when it came to getting my Migraines under control was when I discovered that neurologists aren't necessarily Migraine specialists, but there are doctors who ARE real Migraine specialists. I also learned the hard way that a doctor declaring him or herself to be a Migraine specialist doesn't mean they really are. Been there, done that too.

One of the best Migraine specialists I know isn't a neurologist.

Again, I'm sorry you had to go through this, and I hope you find a good doctor soon.

Teri

Oh dear, I was hoping it was going to be easy to find a good one. I did a google search for migraine specialists in my area (none of my doctors know of any) and all it came up with were chiropractors, which is kind of annoying.

Do you lovely Americans reckon you could just send some good ones down here? You seem to have a talent for breeding good doctors (or else our good doctors are all going over there because we don't pay them enough - usually the case)

I was going to ask Teri if she has knowledge of the best "headache doctors" in UK?
I have seen 3 neurologists The first one did the usual "tests" and told me "You have migraine."
I never went back.

The second was actually totally dismissive. "We call them all headaches"
"Get off all the medication and they will go away."
I asked, but why do I have them, no one in my family has? "Well someone has to have them."
I asked what could be causing them. "Could be any number of things"
"Go and get off the medication, and see me in 6 months"
You can guess the end I think....


My latest is a nice man and his staff love him. But he is all about drugs really and I am done with the preventatives.
I have low enough life quality without having what's left robbed by drugs, which havent worked.
I was also told that he would be good for me as he will contact his patients by email in between appointments.
That has not been my experience, he has a "secretary" intercepting emails.
I was given an appointment last year by him. He kindly offered to see me in the afternoon, which was nice of him.
For some reason I called first just to confirm as it had been 2 months since he gave me the appointment.
I had doped myself up to make the trip. Good job I called, he was on a cruise....
I was upset because my husband had taken the afternoon off, and I was full of drugs to make the two hour trip there and back...I guess that's why he has the secretary....

I know of a really good headache neuro here, but I couldnt see him. Too far and out of my area.
But I am not sure it is worth dragging myself to any more appointments until something new comes along.
I have never had any help and I just have to manage the mess myself.

Pen

Hi,

I am in the US, and don't know the situation with neuro's in the UK. Well, I have gathered a few things- 1, they are to find, 2. it is hard to find a good one. So here is the only advice I can give. First, if you have a good primary doctor or a doctor you trust, ask him about specialists. Sometimes they may know who is good, who is around, and who isn't. You could also see if your current dr would be willing to help, or if knows of anything that might help.

I am sorry that you are having troublie finding a good dr. THe only thing I can say is to keep looking. I think I went through at least five neuros before I found a good one the first time. It always takes a while. The best neuros I have had have been the ones who were willing to stick with me, try things, and keep working on it.

I wish I had more advice. If I could send you a good one, I would.

Pain free days,
sailingm

I know there aren't many specialists in the UK, and it can take travel to get there. There are three who have been recommended to my by their patients. It's been my pleasure to meet all three of them. You can find their contact info HERE.

Pen, I do think it's worth seeing a specialist now instead of waiting for something "new" to come along. There was nothing new when I made the decision to travel eight hours each way to see a specialist, and it was the best thing I've ever done for myself. You might find this article helpful - Migraine and Headache Specialists - What's So Special?

Hope this helps!
Teri

Teri,

Thanks for the links. I know I'm going to have to go back at some point and having a recommended doctor to see I think is the way to start. My last was such a disaster that I can't justify ever going back to him - when he's done things to damage your health and you don't trust him, not worth it. I don't think that anyone else in that group is going to be any better either.

Fortunately there is one in WI that is recommended and it's not too far of a drive. Too bad that many of the IL doctors won't take patients outside of IL because I'm close to the border.

Ha!! Teri,

Same page....

Thank you for the listing:

Seen one, but cant see them again because in London and I cant get there.
Or be relied upon to get there. Managed 2 appointments 10 years ago then failed 2....got dumped.
Tried to get advice based on previous customer....nope ,gotta be seen......

Another of them I have never hear of. Not a name I recognise at all.

The other is such a nice person and has migraine in the family so understands.
Met at a migraine day and twas this one that told me so much in a 20 minute conversation.
More than I have gleaned from anyone in the last 10 years.
Also wrote a very good book. Which I do own.
I learned that probably hormones are my only trigger and that there is still a chance that after up to 10 years they will settle and I will perhaps go back to episodic instead of chronic.....Also that I have no indications of MOH despite taking more than advisable....I gained a lot in that 20 minutes. Sadly I am not able to get there either.

See Teri its where it al falls apart isnt it and why we should have telephone consultations.
The worst effected dont get to be seen because hey are....the worst effected.
This is not only unfair it also means that the public and media, not to mention medics dont get the thrust of how chronic, chronic is...as we are closeted away.

Anyway, thank you, and I do still see a "specialist" but it is a waste of his time and mine.

Pen,

Yep, same page! Just a few thoughts...

On phone consultations... I don't know what the law is there, but in the U.S., doctors need to see us in person once a year to be able to legally give us medical advice or prescribe medications. Frustrating as it is, I rather agree with it. In a year's time, many things can change in our health. What we think is happening because of our Migraines could actually mean that something else is going on too. Anyway, I do think anyone treating us or giving us medical advice needs to see us once a year.

On not being able to get to London... Yeah, this is a problem for lots of Migraineurs. Even here in the US, where we have more specialists, many people have to travel long distances. Don't know how far you are from London, but I can sympathize. I've ended up with two specialists on my case. To see them means either an 8-hour (each way) drive to Philadelphia or flying to Dallas. For the first four years of specialist treatment, all of my appointments were in Philadelphia, and I wasn't able to go alone. Someone had to be with me. It wasn't easy making those trips, but I was so desperate, I made it work. Is there nobody who can take you or go with you? No social services there to help you get to appointments?

You said, "...not to mention medics dont get the thrust of how chronic, chronic is...as we are closeted away." By "medics" you mean doctors, right? That may be true for most doctors, but not for all, and certainly not for the three UK specialists we've been discussing. They understand it pretty well.

Wish I knew more to tell you,
Teri

pen wrote:Ha!! Teri,

Same page....

Thank you for the listing:

Seen one, but cant see them again because in London and I cant get there.
Or be relied upon to get there. Managed 2 appointments 10 years ago then failed 2....got dumped.
Tried to get advice based on previous customer....nope ,gotta be seen......

Another of them I have never hear of. Not a name I recognise at all.

The other is such a nice person and has migraine in the family so understands.
Met at a migraine day and twas this one that told me so much in a 20 minute conversation.
More than I have gleaned from anyone in the last 10 years.
Also wrote a very good book. Which I do own.
I learned that probably hormones are my only trigger and that there is still a chance that after up to 10 years they will settle and I will perhaps go back to episodic instead of chronic.....Also that I have no indications of MOH despite taking more than advisable....I gained a lot in that 20 minutes. Sadly I am not able to get there either.

See Teri its where it al falls apart isnt it and why we should have telephone consultations.
The worst effected dont get to be seen because hey are....the worst effected.
This is not only unfair it also means that the public and media, not to mention medics dont get the thrust of how chronic, chronic is...as we are closeted away.

Anyway, thank you, and I do still see a "specialist" but it is a waste of his time and mine.

You're welcome. Wish I could help more. Is it Dr. Purath you're going to see? I've heard wonderful things from her patients. I haven't met her in person, but have emailed with her and talked with her on the phone. Looks like I'll get to meet her at a conference in November.

Teri

HeelerLady wrote:Teri,

Thanks for the links. I know I'm going to have to go back at some point and having a recommended doctor to see I think is the way to start. My last was such a disaster that I can't justify ever going back to him - when he's done things to damage your health and you don't trust him, not worth it. I don't think that anyone else in that group is going to be any better either.

Fortunately there is one in WI that is recommended and it's not too far of a drive. Too bad that many of the IL doctors won't take patients outside of IL because I'm close to the border.

My best doctor so far for my migraines has not been a neurologist or a headache doctor. He is a pain specialist.

I find most neuro's, like almost all medical specialists, to have know-it-all- god complexes. Having said that, it's just a matter of learning how to deal with that element and then it's often ok.

I totally agree that neuro's are not often very well versed in headaches or migraines and most tend to give up after all your preventatives have failed. I also noted that they tend to be very tough to get any type of pain relief from.

I personally would find a very good GP/primary and ask to be referred to a Physiatrist or pain specialist.

Teri,

That would be the direction I think I'd head in. I haven't done anything other than just find her name. I'm just giving myself a chance to clear out and return to normal before trying again. I'm a bit gun shy at the moment as my last one was highly recommended by current patients. Obviously they were easier cases that fit their "protocol" whereas I didn't.

I understand being gun shy. Been there myself. Definitely, I think seeing Dr. Purath is worth a shot. She's also very good at working "outside the box."

Teri

HeelerLady wrote:Teri,

That would be the direction I think I'd head in. I haven't done anything other than just find her name. I'm just giving myself a chance to clear out and return to normal before trying again. I'm a bit gun shy at the moment as my last one was highly recommended by current patients. Obviously they were easier cases that fit their "protocol" whereas I didn't.

I think very highly of some neuros/migraine specialists who have treated Anna. They definitely believed in pain management, along with trials of preventatives. I have the highest respect for them. Funny thing, it wasn't all that hard to "find them." The nice thing is how they bonded to us and how committed they were to helping Anna. It was not hard to gain their trust. Maybe it was because of the one or two very weary parents who often sat in on the appointments...we can relate to Teri's tales of driving long distances to see doctors who do their best to treat complex brain pain...

Cheryl

I have had horrible experiences with neurologists. I have never been impressed by a single one. Having a PhD in Pharmacology does not help it would seem, because god forbid I suggest a medication to try me on - be it an SSRI, anti-seizure or whatever. The fact that I suggested it instead of them makes them instantly write me off. It pisses me off to no end. I read every single new article that gets published on migraine and have the scientific capacity and training to understand good vs. shitty research but I'm not ever allowed to be an active participant in my own treatment.

Despite my migraines being HORRENDOUS and chronic lately, I just can't bring myself to deal with more neurologists and I'd rather just tough it out with OTCs and ice packs, which is becoming increasingly difficult. I am actually starting up with acupuncture again this Thursday and am hoping like hell that it will break my current spell.

For what it's worth, the best doctor I have ever been to and who helped my migraines more than anyone was a psychiatrist. I wish I could go back to him, but he's 13 hours away and I just can't work that into my schedule. You might want to try a psychiatrist, though. Neurology M.D.s are actually joint M.D.s awarded in both the study of psychiatry and neurology, so they have the knowledge to help you and generally are better at listening to patients and treating them like human beings (at least in my experience).

^^^^ I have been working with a pain management doctor who is an anesthesiologist. He has been great. We talk and collaborate, he takes my suggestions and considers them, and generally gives me the go ahead to do my own research and discuss options with him. It is a great relief, as i spent almost four years with a neurologist who i was scared to talk to about anything.

Thanks for all the suggestions guys. I finally woke up headache free today after a week of horrendous migraines. See how long that lasts but I'll enjoy it while I can! Well as much as you can on a freezing, rainy day.

I should have mentioned before, but I'm not in the UK, I'm in Sydney, Australia. I truly believe all the good specialists in our area have gone overseas.

I actually found a neuro with a reputation for being good with younger people and who apparently is great to talk to. Of course, he hasn't been taking patients for the last 6 months. So now I'm trying to find someone with a contact who can try and get me in.

I has sussed you are in Oz. Have you tried asking Migraine Action here?
They do seem to keep up with who is good where.
Pity you lost Goadsby, but he cant be the only one.

Hope the one day becomes two...

I have seen 10 neurologists (including the pediatric neurologist who diagnosed me -- since she also saw adults, and my mom was one of them, she added me into her schedule without requiring a referral), so although I haven't seen as many as Teri has met with, I do consider myself somewhat of an expert. Oh, and I also saw a GP who is a headache specialist and does primary research on migraines as well as treats patients. Despite his not being a neurologist, he is in charge of all headache treatment for Southern California Kaiser.

Out of the 11 doctors, only two had a god-complex. My sleep doctor, who treats my restless leg synrome and insomnia due to the migraines, doesn't have a great bedside manner, but he is willing to listen, and especially if I have a family member with me for moral support, I can deal with him o.k.

So 8 out of the 11 have genuinely tried to do their best to help me. I was actually the first patient that one of my former neurologists tried botox on for headaches. She had been giving botox for other conditions, so she wasn't brand-new to the treatment, just for migraines. And we confirmed that the reason botox didn't work the first time was not her inexperience, since I got it again under the treatment of one of the leading doctors studying botox as a migraine treatment, so I got counted in his clinical trial.

The good doctors have never been afraid to say they didn't know anything else to do for me and have passed me on to others who they thought might have better success.

I highly recommend getting a headache specialist, whether neurologist or not, because it did make a difference for me. My current doctor is always on top of all the new treatments and tells me about the research that is up and coming. And she is always happy to see anything I take to her that I pulled off the web or from a book. She has even precribed medicines for me that I came across and hadn't tried!

Of course, not everyone can have my beloved doctor. I'm thrilled that she is quite young, so she'll be around for a long time hopefully. One thought I had is that if you live near a medical school, you might be able to find someone who specializes in headaches there, if they're not too busy with their teaching and research. Something else neat about my doctor is that she was cited in Time magazine a few years ago. She has the article in a frame in her examining room.

But even if you can't find a headache specialist, I'd definitely suggest seeing a neurologist at least. While they are the GP of neurological issues, as Teri put it, that covers a much narrower range of things they have to be up on compared to true GPs. At one point, after having a bad experience with the first of these mega-god doctors, I did have my PCP take over my migraine treatment. He was really great about it too, telling me to do my own research on what treatments others were trying, and he'd prescribe it for me, as long as it seemed reasonable to him. That worked for a time, but when I finally got through the waiting list to see the headache specialist, it made a difference. He was much more aggressive in my treatment, and he actually put me on the long-acting narcotics that no one else would touch with a 10-foot pole!

But part of the reason I bring this up is because when he saw my list of medications that I have tried, he was impressed. He said that my former neurologist, who is a sleep specialist, not a headache specialist, had done a very thorough job of treating me. He had even tried things that were on the cutting edge, showing that he was doing his research to help me. So I believe that a neurologist is your second best choice, and based upon my own personal scale of good doctors vs. bad, you have a 75% chance of getting a decent doctor. (I gave my current sleep neurologist 5 points because he does clearly know what he's doing and tries to help me with my migraine situation, but he also makes me cry every time I see him because he's brusque.

It's also really valuable to create a list of every medicine you've taken and at what dose and store it on the computer, so you can just add each new medicine to the list and don't end up duplicating a treatment you've already had. I also add alternative or non-drug treatments I've had, such as acupuncture, biofeedback, occipital nerve stimulator, etc. And I wrote out a list of things I'm sensitive to (I can't really call them triggers because the headache is always there; they just mae it worse) and a history of the trajectory of my migraines, such as when they began and for how long and when I had each of my MRIs, CT Scans, and LPs. All but the doctor who thought I should kill myself before going to the ER have appreciated that list. It has saved a lot of time during my appointments, so we can spend the time on other issues.