Migraine

So I had my much anticipated first appointment with the new neurologist yesterday. I keep replaying parts of it over in my head, trying to process how I feel about the whole experience, and I keep coming to the same conclusion, which is that I have mixed feelings. He seems like a good doctor, not a great one, but a good one. Someone who I can make a part of my team, although not a dream team. Someone I'll give a try at least, and definitely I'm a million times better off than with my horrible last doctor!

I waited FOREVER, but my appointment was really long, at least an hour, and he was very thorough in going over all of my symptoms, which I really liked, even though I felt like he didn't listen very well to me about some other things. For example, I told him about my weird eye-opening-back-up-after-30-seconds thing. He says "Let's take a look", shines a light back and forth *between* my eyes for about seven seconds and proclaims "Looks fine" ...well that's not what I said... I said shining it right in my eye, for 30 seconds... but I figure he can't be perfect.

He didn't like the 200mg of Topamax, felt it was too much for me, which I agree with him on... so he's lowering me to 50mg. He's adding Neurontin (gabapentin in my other post.. and I got the dosage wrong too...) at 900mg eventually, Lexapor 10 mg, Folic acid and Migravent. He also encouraged me to think about going off my BCP, which I guess I'll do, since I've done everything else that's been suggested to me. He seemed uber-confident that this new regiment could help me... he scheduled me three months out, which I really don't like... and he made all these med changes all at once, which I didn't realize until the end, something else I didn't like. He was very thorough about all my symptoms and took his time there, but we didn't really discuss the execution of the meds. He explained all the ones he wanted to do, but I didn't realize he meant right NOW! He just let his nurse explain to me the eight little prescription slips I walked out with! Granted, he was still around if I had a Q, but I would have liked more involvement of him there, and I would also like more regular appointments to regulate such drastic med changes. He did say, "If you're not feeling good in six weeks, call me." So I plan to do just that.

Although he brushed me off when I asked about CSF questions earlier in the appt, he considered them on his own later on... I went over this in another post... and he said another possibility could be a meningeal tear causing a CSF leak. He sent my MRI films over to another doctor to look at for a second opinion... so even though he didn't look himself, at least he's aware that second opinions are good. He also mentioned getting another MRI, although I'm not sure what kind, he mentioned contrast... I don't know what different types of contrast there are??

All in all I feel like he's a doctor I can work with, he'll definitely teach me to be more forceful, because I know he'll do his best to meet my needs if I make them clear. It was really nice.. I got really nervous in my appt after using a few technical terms and he quizzed me on why I knew them... that he would be on guard against me, but he praised the fact that I had done my research and actually told me he appreciated the fact that I was educated. It felt so nice to have a doctor actually LIKE the fact that I knew what I was talking about for a change! It always feels like my education battling their ego, so for my care to be the priority feels so refreshing!

I just wanted to thank everyone on the board... and a special thanks to MJ, you really pushed me a little extra to fire my neuro. I don't know if this one is the final "keeper", but he is a HUGE step up... and I don't know how long I would have stayed with poor care if I hadn't been encouraged to demand better!

Great job, Candace!

My neurologist often schedules me a good ways out for a face-to-face appointment, but she's made it clear from the start that I can call any time, and she will work with me over the phone. Of course, if she feels she needs to see me, she will say so over the phone when I call.

Three months time is typical- my doctor scheduled the same for me the first time I saw him. He sounds like a good doctor, so glad you made the change.

Valerie

...I felt a little uncomfortable with three months, only because of the mass medication changes that are being made. Plus, I feel like even though he may deal with migraine sufferers ever day, I consider my situation important enough to warrant more timely attention than three months. Three months sounds like I'm accepting this as my life now, not an aggressive fight to get my health back.

Yep! Understand what you're saying. Keep in mind though that it takes three months to really know if the meds changes you made are working for you. It's a delicate balance -- going in often enough, but not so often that the appointments aren't productive.

quote:

Originally posted by Candace:
...I felt a little uncomfortable with three months, only because of the mass medication changes that are being made. Plus, I feel like even though he may deal with migraine sufferers ever day, I consider my situation important enough to warrant more timely attention than three months. Three months sounds like I'm accepting this as my life now, not an aggressive fight to get my health back.

Candace, I'm glad to hear that this new guy is much better than your last guy. He is at least a step up. It sounds like it's worth giving him a chance for the time being. And good for you for going in well-prepared!

And you're welcome! I think you know all too well how hard it can be to fire a doc - and you also know I'm there myself. If it wasn't for this board, I think I would have settled for less ideal care, too.

I'm proud of you for being proactive in your health care, even if this guy doesn't turn out to be a keeper.

quote:

I just wanted to thank everyone on the board... and a special thanks to MJ, you really pushed me a little extra to fire my neuro.

This guy is TOTALLY a step up. I trusted my PCP to refer me to someone worthwhile... and he definitely sent me to someone in the same class of doctor (...I've gone to 5:15 appts for my PCP and not left his office until 7:45.. and that was for a sinus infection...) so I definitely feel a sense of hope about him, even though I have some hesitations. I admit I tend to see the glass half empty.

Teri, I hear you... I just don't know where the line is. I found out today that I actually won't see the doctor tomorrow for my EEG, although it's in his office, it's administered by a nurse, so I won't get to ask my Qs. I did explain my concern about so many med changes all at once, and not being able to perceive side effects from each other to the nurse... and she was a bit ambigous, but it sounded like I might get a call back from the doctor. No one called me back at all... but we'll see what happens tomorrow.

I think for the time being, I'll leave the three months be... see how I feel in six weeks, as he suggested... if I'm not feeling good/great, it will be a test of his good-doctorness how he responds to my phone call at that point. I do so much doctor visiting.. I'd really like the bulk of it to be with the one guy that should be working on the one thing I'd really like fixed! I see the people at my allergy center every three months... and I barely consider my allergies a concern... we're just keeping tabs on symtoms and treatment... seems odd for this to go in the same category.

Candace,

I'm so glad your PCP found this new neurologist for you. He sounds like a keeper. Your PCP sounds like a gem too!

I have two doctors to help me with my migraines. I have a local neuro who is a "back up" to my out of town specialist. Luckily, my local neuro was willing to stick by my side while I opted to see a specialist. They work well together

Wow Laura, that really gives me something to think about! It had never occured to me before that I could keep a local neuro and see an out of an area specialist... and get the two to work together! I'm defintitely going to think about this if this new round of medications doesn't work well for me. Thanks for sharing!!

Candace, in another thread you referred to "push from this board." Everyone on this forum wants the best for you, and we definitely don't want you accepting second-rate health care. If you start telling us that's happening, as you were previously, yes, we will be pushing. But you are the one who lives in your body and works with your doctors, and you are the one who must decide what doctor is best for you to work with. When push comes to shove, you will find our forum members pretty non-judgmental about your medical choices, as long as you honestly believe you are getting the best health care available to you, and there's no immediate risk to your health or safety.

Any doctor will have to go through a process of trial and error to find the right preventive regimen for you. The process will take a lot of patience and courage from you, and flexibility from your doctor. If you are not making progress, or especially if your doctor tells you he's out of ideas, or nothing more can be done, it's time to move on. Many of our forum members have done the best under the care of a migraine specialist, and the arrangement Laura describes is definitely one to consider.

I really hope the new meds work for you. That would be so great!

You're more than welcome, Candace. It took me a long time to even get to the point where I am right now. I've had migraines since I was 15 and I'm now 38. I didn't even know migraine specialists were out there until I started coming to this forum.

It was a personal choice for me because I really like my local neuro but we were at a stand still in my treatment so I opted to keep him and look for a specialist too. Like Nut said, it's a personal choice but one I'm so glad I made.

I hope your new medications work too!!

quote:

Originally posted by Candace:
Wow Laura, that really gives me something to think about! It had never occured to me before that I could keep a local neuro and see an out of an area specialist... and get the two to work together! I'm defintitely going to think about this if this new round of medications doesn't work well for me. Thanks for sharing!!

Candace -

So glad to hear you've found someone better for your care. Like others have said, I have to say 3 months seems pretty typical, and it's typical to not see the dr. for an EEG - but be proactive with your questions, including questions like "Who will call me back? when can I expect a call back?" It sounds like it's important to you not only to find out if starting all these meds at once is likely to be a problem, but also strategies for coping with them, just in case.

Good luck! I hope it gets better and better.

- Megs

I definitely appreciate the push... otherwise I talk myself into staying. Sometime in between appointments I convince myself it's "not that bad" or that I'm "overeacting" and I should get over it. Plus, until I'm actually getting some relief, I don't feel like I am getting the best treatment I can. I know things take time, but I always want to be doing everything I can.

I think my current plan will be to try out the new med regimine this doctor is suggesting and call at 6 weeks if I'm feeling the same, since that's what he told me to do. From there I'll either make an earlier appointment or keep my 3 month one.. and we'll see how many ideas he comes up with, and how much I like them. I'm definitely liking the idea of combining a headache specialist and a local neuro. I think it's been my hesiation, honestly... I didn't like the idea of travelling out of area to someone who either I'd have to travel out of area really often to see.. or just wouldn't see very often, since I really like to communicate often with my doctors.

I've also been talking a lot in some other threads and via email with Nancy and I'm going to be pushing for a lumbar punch. I asked this doctor about it and he wasn't keen on it... but I'm planning on being pretty insistent. Even he came up with the idea of a possible CSF leak problem, although he suggested another MRI. I just don't want to bother with anything else that won't be definitive. I'd like to figure that one out once and for all. I plan to ask my PCP about it and see if I can get anywhere on that front.

Thank you so much everyone.. for helping me sort all of these things out... I'd be such a mess without it!!