Neurology appointment Tomorrow, shorter attacks now

Specific Illnesses & Conditions VM/MAV
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Hi everyone.

I have a Neurology appointment tomorrow. Last time the neurologist wasn’t as helpful as previously and basically told me that the four medications approved for migraine were Sodium Valproate, (no thanks) Amitriptyline, (couldn’t tolerate) Propranolol (made me slow and fatigued) and Topiramate (gave me ear trouble)! Despite the fact that she did allow me to try Zonisamide (gave me ear trouble) before.

Anyway, because of this very unextensive (is that even a word) choice I decided to try Topiramate again, but I have still only managed to get up to 12.5mg daily, at which she will probably laugh. I also take 20mg a day of Citalopram and 5mg of Diazepam.

My GP has been far more helpful. I told him I had done some research and wanted to try lamotrigine which he was willing to let me try, however then I said the other one I had been looking at was duloxetine, at which he said he would be happier to give me that. So he prescribed me duloxetine (Cymbalta) but I haven’t had the nerve to stop the Citalopram and try it yet. He agreed that lamotrigine could be a second line treatment.

However, now faced with the neurology appointment I am unsure what approach to use. She previously dismissed Venlafaxine as something that wouldn’t help (when I told her about my failed trial) and she said lamotrigine wouldn’t help either. What do you think? Do I just fob her off and say I will try to get higher on the topiramate and continue to work with my GP or present her with my research on lamotrigine? My concern is that she might write to him and tell him not to give it to me.

Sorry about this post, I am frustrated that 1) I haven’t had the courage to stop the Citalopram so I could try the duloxetine and 2) that my neurologist seems very unaware of all of the different medications that are actually being used for this condition.

The thing is I am having a lot of problems with dizziness and lightheadedness at the moment, so I clearly do need some help. But also anxiety which is a newer thing for me. In fact some days the agitation is so bad I just don’t know what to do with my self, and other days I can barely stay awake. This is not going down well at work.

My neurologist (who at first I thought was wonderful) seems to see things as so black and white, i.e. antidepressants are for the anxiety, something else is for the dizziness etc but doesn’t see that there is an overlap in what treats what.

Does anyone have anything to say? :slight_smile: If not, thanks for listening.

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Hello Sarah I am afraid I know very little about the drugs you mention but what strikes me the most on reading your post is the fact that you have a very good relationship with your GP. Do you know if he truly understands VM and all of its convolutions? If he does and you have faith in his ability to help you do you need the input of a neurologist in whom you have so little faith? Just my observation :blush:

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Agree with Margaret. Stick with GP. Also consider changing Neurologist if that’s possible.

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@Revolving Hi Margaret. Thanks for replying. It is interesting to see what someone else picks out from a post.

You are right, I have struck gold with him, he is really good. I should be grateful that I have someone I can talk to and who is sensitive towards me. [quote=“Revolving, post:2, topic:14194”]
Do you know if he truly understands VM and all of its convolutions?
[/quote]

I don’t think so. But what he does do is listen to me, show me respect and allow me to have some control over my treatment, e.g if I have done some research on a certain drug he will listen and if it makes sense to him he will let me try it. He is quite open to suggestions rather than having the “I’m the doctor and what I say goes” attitude.

I think he may have done some research of his own during the time I have been seeing him but I am not sure.[quote=“Revolving, post:2, topic:14194”]
If he does and you have faith in his ability to help you do you need the input of a neurologist in whom you have so little faith? Just my observation :blush:
[/quote]

It was a good one. Maybe the neurologist was having a bad day last time I saw her but I am going to try not to let her upset me tomorrow, because as you say, I have a good relationship with my GP anyway and he is willing to help me.

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@turnitaround Hi James. Thanks for replying.

I already have changed neurologists once. The original man I saw twice took so long to respond to letters from other health professionals (2 doctors, a physiotherapist and the occupatinal health consultant) that my GP made a phonecall and got me in with this one who could see me within about 3 weeks, she is a locum, brought in to help with the backlog of patients I believe. I have only seen her twice too. She will probably go eventually when the backlog is cleared (if that ever happens!). Like I said to Margaret, maybe she was having a bad day last time (or maybe I was) so I will see how tomorrow goes, but if that is the total of the drug options she will give me it will be a quick appointment. Last time she suggested botox or neurostimulation but I don’t want either and I don’t believe the drug treatments have been exhausted yet.

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I can’t see why she wouldn’t want you to try something. She might learn something too! Can you take along any testimonials of people who’ve had success with those drugs?

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@turnitaround [quote=“turnitaround, post:6, topic:14194”]
I can’t see why she wouldn’t want you to try something.
[/quote]

I wasn’t expecting her to be like that because the first time I saw her she was sympathetic and let me try zonisamide (after checking with the BNF) that is was used in patients refractory to topiramate. However she dismissed lamotrigine right back then, as she did venlafaxine yet I thought that was one of the well known ones for this condition. Last time I saw her she seemed quite rigid in her approach to drugs and was trying to get me to consider non drug alternatives altogether. But that isn’t what I want.

Here’s hoping!! :slight_smile:

Yes, I do have quotes from a couple of studies and a couple of quotes from people who have had success with lamotrigine. Whether that will be enough to sway her if it isn’t actually licensed for this is another matter. But she did prescribe zonisamide off label so I guess there is no harm in asking again with some written back up. If she says no at least I tried. And if I can’t take the duloxetine my GP did say he would give it to me.

The reason I want to try this drug is because although it is an anti-convulsant it is chemically different from topiramate and zonisamide, both of which have affected my ears. Zonisamide I had to stop and topiramate I can’t get the dose very high. It also has more of an effect on vertigo than on headaches which is what I want. Plus it isn’t known to cause hyperacusis which some of the others do. For most people this probably wouldn’t be a problem but I seem very prone to this SE.

I don’t need to explain the duloxetine to her as I already have that and she probably wouldn’t believe it can help MAV anyway.

Does anyone have success stories for MAV with lamotrigine/Lamictal?

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Hello Sarah. How did the appointment go with the neurologist go dare I ask!?

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@Revolving[quote=“Revolving, post:8, topic:14194”]
How did the appointment go with the neurologist go dare I ask!?
[/quote]

Hi Margaret. It actually went really well. She was like the person I met at my first appointment again. I told her that I had only been able to get up to 12.5mg on the topiramate, but that there was something else that I would really like to try. I had four pages on lamotrigine to show her, which were basically quotes from studies on it (inc for MAV) and two quotes from testimonials to its efficacy. She looked at one page (study quote) and said “I am open to this”. She then asked me if I wanted to carry on with the topiramate as well as I was back on it now, or stop it gradually. I wasn’t sure at the time, I had thought perhaps stopping it first might be best to see what side effects the lamotrigine caused but she said I might get dizziness while getting used to the lamotrigine if I did it that way. Anyway, she said I could make that choice for myself and do it whichever way I wanted i.e. stop it first, gradually stop it or just stay on it.

So I came out of that appointment very happy with the way it had gone. Except that she told me her locum contract was coming to an end and it might not be her I see next time. And now I really want her again!! Typical :slight_smile:

I have decided that although I can’t wait to get started on the lamotrigine I had better wait a couple of weeks, because one of the side effects can be a rash which needs to be checked out at A + E in case it is serious, and I am going to Ibitha in just over a week. So reluctantly I have decided to wait until I get back just in case I need to go to A + E or have any problems with it that require medical attention.

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Well done Sarah. Your assertiveness and preparation clearly paid off!

Enjoy Ibiza, that’s great you are going for some R&R. And btw, a spell at Ibiza improved another board member’s symptoms so let’s hope it has the same positive effect on you. Go easy on dancing near the speakers though :smiley:

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That all sounds very positive Sarah, well done. Have fun, don’t stress and onwards and upwards from here on in!:grin:

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@turnitaround[quote=“turnitaround, post:10, topic:14194”]
Well done Sarah. Your assertiveness and preparation clearly paid off!
[/quote]

Actually it was something you said that prompted me to try, I had some of the stuff printed but was debating whether it was even worth bothering trying to convince her after last time. I am glad I did now. Thank you.

Lol. I am going with my mum who is 70. We will probably be several miles from any speakers :slight_smile: We are not going to the party bit. But yes, I am looking forward to getting away and having a rest. I don’t fly well though :frowning: The last time I flew we hit a bit of turbulence and I left my breakfast behind in a bag!! Fortunately it is a short flight.

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@Revolving[quote=“Revolving, post:11, topic:14194”]
That all sounds very positive Sarah, well done. Have fun, don’t stress and onwards and upwards from here on in!:grin:
[/quote]

Thanks Margaret. I will try not to stress, but easier said than done. Things are looking up though. At work I have been allowed to do shorter shifts which could turn into a permanent thing (which would be good) and I have new medication to try when I get back so at least steps are being taken in the right direction. I hope you are well (and you haven’t exhausted your dog ha ha).

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Great to see that you are on a positive path, Sarah!! I do believe that being in control, by whatever means of your situation is a big step forward with this beast!! Hope you have a wonderful holiday and come back ready to move even further forward!!

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@mazzy Thanks for your reply. Yes it definitely makes a difference when you are allowed to have a say in your treatment. [quote=“mazzy, post:14, topic:14194”]
Hope you have a wonderful holiday and come back ready to move even further forward!!
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Thank you. I hope you are well too.