Saw Dr S for the fourth time in only six months and feel gutted that he seems to think we are already at the end of the road medication wise and that the only thing left to try is some fine tuning with VRT. I feel that I am a million miles away from that and in a worse place than ever during this whole MAV nightmare journey. I’m not sure how he can think he’s done what he can for me.
Quick recap: I’ve had MAV for 3years now and in the past I have tried propranolol, amitriptyline, and nortriptyline to no effect but I had a little success and am still on pizotifen for the rocking. I’ve also done VRT twice before as well but was discharged because I did not have other symptoms under enough control.
Back in November, Dr S was really positive about his success rate. He said that there were still many avenues to try and made me feel there was some hope. He advised me to go on sick leave which he thought would help a great deal as I was overdoing things at work. I first tried gabapentin, but after 4 months it had no effect so we abandoned it. I also didn’t really feel any better being off work. That was when he started saying we didn’t have many choices left and to try Topamax. So I got on with it and up to 100 mg but I’ve seen no improvement at all. I’ve heard of people going above that, even as high as 200mg, so I thought he might suggest going higher or adding something else. So went to this appt thinking he would continue with aggressive action to tackle this further. But no, he seemed satisfied that it’s already doing its job, even though I don’t feel any better. Eh?
I think part of the reason for this is that he insists on basing it all on what he calls exacerbations. I explained that because I’m off work I’m avoiding my major triggers ie laptop, so I’m not having major episodes, yet my baseline is still bad enough that I’m off balance all the time/feeling dreadful and through the day it ramps up with lots of little tiny things. it only takes a glance at a screen, a book, trying to write something, washing up, making a cup of tea etc to feel a small bit worse and by the evening I can hardly stand. There are no dramatic episodes, it’s just chronic, constant, slow and steady. I thought he understood all that. But he took that as being no major exacerbations = medication is working. Why? If you’re over your threshold all the time surely you can get to the point when you can’t be exacerbated that much higher. Does chronic migraine need to be described as episodic in nature? I’m confused.
I left feeling as helpless as ever. I even said, but I don’t feel better, I feel worse, and he said that I shouldn’t have left it so long before I saw him, like it was already too late. He also said that many people are far worse off than me and need a lot more time to heal. So am I expecting too much? I know he has been a great help to many on here and I am not criticising him at all, just disappointed that he hasn’t been able to help me and I really don’t know what to do next.
Any advice please?
When he said “I even said, but I don’t feel better, I feel worse, and he said that I shouldn’t have left it so long before I saw him, like it was already too late. He also said that many people are far worse off than me and need a lot more time to heal”- that is a terrible thing to say to someone like you ignored this problem on purpose or soemthing. that is cruel and not helpful at all and honestly in my opinion probably not true. I don’t get it there are other meds like depakote verapamil atenolol lyrica etc. that you haven’t tried yet, can u ask him if you can try these or why is he hesitant to keep trying if there are more meds? ugh if he really gives up maybe can u get another opinion?
why does it matter how long you have had the problem- how does treatment get more successful when you start “early”??? what evidence is there of this???
Thanks Sarah. You’re right, it’s hardly my fault that it took nearly three years to get to see him after being misdiagnosed and seeing useless ENTs and neurologists. His analogy is that chronic MAV is like a nail being banged in to a wall and it takes so much more time and effort to get it out, my nail is stuck right in now. I don’t know why he doesn’t want to explore other meds. I think because he is choosing to say the Topamax is working as in I am not having any major exacerbations as he calls them. Except that Iam having hundreds of mini ones instead
I have started he VRT but I find it easy. I can shake my head around just fine. But then I’ll go to make a cup of tea or something and feel terrible. I really don’t see the point of continuing with the Topamax though as it has done nothing for me except scramble my thoughts and make my teeth hurt.
There is one more top doc I can see although it will take some travelling. To be honest At the moment I could just tip all the pills down the drain and tell them all to stuff it.
I wouldn’t give up yet. It took 3 years for me to get a diagnosis. And I am still going thru neurologists till I find the right one. After 4 years of severe symptoms I was able to get good results w nadolol. I think you just haven’t found the right medication yet. Maybe the other dr will b able to help you. I would give them a try!
I’m not surprised you feel so disheartened after your visit to Dr S - from all accounts he does not ‘give up’ on his patients and always seems to be able to offer other strategies to help. You can’t enjoy life feeling so chronically ill all the time. Mine has always been chronic, as I’m sure many other forum members also experience their illness. It just needs to be got under control.
Do you really feel the Topamax hasn’t helped you at all? I’m sure you keep a diary - can you compare how you are now to how you were 3 years ago? How long have you been on 100mg? It took me 3 months at 100mg before I really began to notice a difference. Then quite a few more months before adding Lexapro to help visual vertigo.
Can you get to see Dr Silver? I think a couple of other people on the forum have had second opinions. It may be best to stay on the Topamax for the present. There are other meds that you can add on and, as you say, some people have been very successful in pushing the dose up for control.
Don’t give up!
— Begin quote from “Nubs”
I explained that because I’m off work I’m avoiding my major triggers ie laptop, so I’m not having major episodes, yet my baseline is still bad enough that I’m off balance all the time/feeling dreadful and through the day it ramps up with lots of little tiny things. it only takes a glance at a screen, a book, trying to write something, washing up, making a cup of tea etc to feel a small bit worse and by the evening I can hardly stand. There are no dramatic episodes, it’s just chronic, constant, slow and steady.
— End quote
Hello Nicola. I had symptoms like those you describe and was puzzled by them. It took many years before I worked out that they were due to my benzodiazepine meds.
Are you taking any benzos or antidepressants?
Thanks everyone. I think maybe I will stick with Dr S and the Topamax for another 2 months and then onto Dr Silver if I have no results and no joy at my next appt.
Thanks Barb for reminding me that it can take a long time for the meds to kick in. I think I am just being a bit impatient because I have this time off work to try to treat this aggressively now and also having trialled so many drugs before, the only drug that ever did work at all kicked in straight away and all the others that haven’t didn’t do anything as long as I waited. Also Dr S could have just said that instead of telling me it’s already working when it’s not.
Deopham- no I’m not taking anything other than the pizotifen and the Topamax.
I think there is a bigger issue here that’s not just about me but about how specialists understand our experience of chronic migraine. What I was trying to get across was that somebody’s background level of dizziness can be high enough to disabling in itself. That needs to be factored in to treatment and not dismissed as something that we just have to live with while we try to prevent major episodes. Having to deal with the rocking sensation and constant imbalance every minute of every day is far worse for me than having the odd major spin.
I won’t give up. It’s taken me over three years to get this far so I’ll keep on fighting. It shouldn’t have to be like this though.