It is always interesting when you meet a new neurologist when you have had chronic migraines for a long time. Way back, in the beginning, you have this optimism that they know a vast amount about migraines and that the medication they recommend has a great deal of potential to do something. After time you realize both of those are flawed assumptions. Generally, neuros seem to know the migraine basics but some know more and some are vastly better than others.
You sort of just hope you win the lottery there.
When you don’t it is a horrible disappointment.
You can sort of tell immediately that their knowledge base is not that broad. That they do not answer your questions with a great deal of experience. And their recommendations for treatment are simplistic and flawed. And while you have to simply take what you can get at the time it takes a very long time to see a neuro where I am… so a very long wait to see if the next one is any better. A very long time for stagnant treatment options and just enduring pain with absolutely no progress. And yet I am very aware that medications are equally flawed. That they do not provide great results often. It is like winning the lottery to get any sort of positive result and even that may not last. Few medications even have great ratings for potential positive results. And you run through all the good ones fairly quickly. And then some of the cruddy ones. And then combos. So good neuro or not, medications are not an end-all solution. But a good neuro will help with a treatment plan. Will understand migraines are quite a bit more than just pain… although, yes, pain is quite up there on the list of major problems.
The point is, at this point, I have rather low expectations for a neuro. I have had one very good neuro in the past and I was rather left hopeless when he ran out of ideas. Not that he just left me hanging… he did refer me on to somewhere else… although I think that referral disappeared when my doc at the time referred me for a ‘second opinion’ to another neuro who I was not very fond of. I got rather pissed off with that doctor, just one too many times his disinterest led to more issues and I got around the massive doctor shortage around here by going to my spouse’s doctor who is beyond awesome. Nevertheless, I was left without a good neuro. So my new doc referred me on and I was left wondering if this one would be good or not. If he would have general knowledge of migraines or more. If I could work with him or just tolerate him. It was my doctor’s opinion by the way that because I had run through all those preventatives with no results that a neuro might not be the way to go so she referred me to a pain clinic with the belief that fibromyalgia complicated the situation and treating both might be best. I asked to be referred to a neuro as well simply because migraines are more than pain… and vertigo and persistent migraine auras are an issue. I thought having a neuro might be helpful in a basic sense as well if they could recommend preventatives geared towards that.
I go meet the new neuro and you know the fellow is quite nice. Younger than most I have encountered and perhaps that is why he was more personable. I certainly know they are not known for their bedside manners but this one was quite friendly. No arrogance or ego to be found. I have liked most of my neuros even if sometimes I disagreed with them or found them lacking in knowledge or they were a bit dismissive about something I thought was pretty important. Personality wise most of them were fine people, except one. This one though was quite nice and Approachable I suppose. How rare.
Now beyond that he also was knowledgeable. We had a conversation that made sense. I know some of the research he was talking about and he referenced research which I appreciate… I like to know why he thinks something is important… and telling of a study helps me validate it a bit. It says to me he thinks this because he read up on it. He has looked into this. The fact he knew the new way migraines work… means he has looked at the recent research. I quite like that he is knowledgeable in this. Everything I asked he answered with a clear understanding. That sounds like a good one for me.
What he said for me though sort of sucks. He said for chronic migraines the best researched effective treatments are Topamax and Botox. Personally, I disagree of the Botox from the studies I have read, but then maybe with chronic is does have better potential results. Either way a no-go for me when I tried it. I am on Topamax and it isn’t doing anything. He said I am pretty much unresponsive to treatment. That there isn’t really much there for me really.
So what to do…
First: He wants me to quit smoking. I have the increased stroke risk with my migraines with aura. And then with smoking. He said I really should stop smoking.
Second: Exercise. I need to exercise. He references a study you can see in my previous post. But he knows fibromyalgia compromises me in this area and to help with this the clinic he works at has a team of doctors, including a physical rehabilitation worker, and psychologist all geared to help me attain that goal. And I said sure that sounds like a plan there.
Third: Since the vertigo inhibits my ability to exercise he will start me on Sibelium. I should mention I mentioned this myself based on research I have done, but he said why not?
“Why it is prescribed (Indications) :
This medication is a calcium channel blocker, prescribed for migraine occlusive peripheral vascular disease, vertigo of central and peripheral origin and as an adjuvant in the therapy of epilepsy.
When it is not to be taken (Contraindications):
Contraindicated in patients with history of depression or pre-existing extra pyramidal disorders and hypersensitivity.”
I don’t mind this med. I have in fact taken it before. I want to try it for vertigo specifically.
So I will be on this for four months. See how it goes. If it goes well then I may be going to their pain management section for the exercise goal.
Now I just have to get a plan of action on the quitting smoking business, which is not an easy feat by any means for me. It has been on my mind for months but pain being as it is, just have not yet done anything about it.
On a side note, this neuro does not believe my nerve damage in my hands was due to the migraines at all for the same reasons I do. The one neuro who said it was a stroke…well he really was dismissive and didn’t listen that well… the nerve damage is my entire right hand, but also part of the left… that doesn’t sound like a stroke. This neuro agrees. As to my original neuro who speculated it was because I always have persistent migraines and then that status migraine such that it caused nerve damage? I never heard of that happening… certainly not in peripheral nerves. And this neuro agreed. He literally said all the things I thought. So since it was never looked into I have no idea what caused the damage, which means it could be idiopathic or something else. Hard to say. In all likelihood, it is comorbid with the fibromyalgia and has nothing to do with the migraines at all.