Appt with Dr Waterston - verdict

Well, it was a long old day - 7.5 hrs of driving for an expensive 20 mins, but well worth it I think.

Firstly not sure what the person that said he had dire social skills was on about - I was quite impressed. Made very good eye contact with me when I was talking - really listened to what I was saying (or faked it VERY well) and gave the aura of being quite empathetic. Loved the fact that he didn’t stare into his computer taking notes while I was talking.

Did the usual tests (walking, walking toe to toe, standing still with eyes closed, all the standard strength and reflex tests, a few nystagmus tests, the old turn your head and drop you back routine). Looked at my CT and MRI and said you have a mild Chiari - 1 malformation - well that was new! However he doesn’t think it’s causing my problems because it would have been an issue long before now, and also my symptom profile doesn’t match. He also said it’s not Menieres - no surprise there but nice to have the confirmation. So he agrees with my first neuro that it’s Vestibular migraine. What I was expecting really but nice to have an expert’s opinion.

Those of you that have read Scott’s top docs and their favourite meds post will not be surprised to hear that he has given me a script for sandomigran (pizotifen) :lol: . He thinks that it will give me some extra improvement and get me closer to the magical 100%. He’s given me a tapered dose so start at 1 tablet (0.5mg) for 2 weeks and go up to 2 if no improvement at that time. He’s of the opinion that if it’s going to help I should notice in a few weeks at the right dose. No need to stop taking the metoprolol. Interestingly he did ask if it impacted on my asthma (my GP never mentioned this as an issue when prescribing it). He also suggested Tai Chi, and the usual manage stress, good sleep habits, regular exercise etc.

Other points in no particular order:

  • he doesn’t have any particular food dos or don’ts - basically eat it unless I can verify that it causes a problem/ is a trigger
  • he thought it was reasonable that there may be a hormonal component for me (Am often worse in the 5-7 days pre period) but isn’t a fan of prescribing hormonal replacement type therapies as he says it’s often more complex than that and it can often make things worse rather than better
  • he did mention that he sees a lot of women around my age (41) that have/develop these symptoms - that doesn’t mean that menopause is around hte corner, nor does it mean I will have them forever.
  • he didn’t raise any eyebrows at my description of “physiological anxiety” - in fact he agreed that it certainly was a co-occurrence with this type of migraine (how refreshing!!) - but that it can sometimes develop into “real” anxiety if it’s allowed to drag on so need to be careful of that. That was a nice validation actually as my husband was with me and I think he hasn’t quite believed me that anxiety is a migraine symptom. As a nice aside he also said that anxiety is certainly a differential diagnosis for my symptoms but he doesn’t believe that is the case for me as I seemed pretty together (or words to that effect :lol: )
  • he said Tompamax is a good med, but 1 in 5 react to it as I do (v depressed, exacerbated symptoms etc)
  • he has no issue with me taking Valium on bad days as a symptom management strategy - although sadly didn’t give me a script and alas Scott and Vic he uses computer printed scripts so no script pads to steal :lol:

Even better he’s happy to manage my meds via phone and send up scripts if I don’t get on with the sandomigran and want to try something else - which is great given how far away I live.

So all in all no real surprises apart from the chiari stuff, but I’m glad I went to the appointment, because I’m settled in myself that I’m doing all the right things and am not missing a major trick, and there’s the opportunity to try meds that might help that my GP wouldn’t be comfortable prescribing. Who knows, I might even try the sandomigran!

I did get in a plug for the forum as the place where I have learned a lot about MAV and found great support- and did leave the details in the history notes I left for him. :smiley:

It was a long old day though - the Hume highway doesn’t’ get any more interesting :lol:

Gabrielle

Hey Gabrielle,

Thanks so much for posting!

Gosh, your symptoms and your visit with Waterson sound like me and my visits with Halmagyi. Other than their ‘med of choice’ these two seem on the same page. Like Waterson, Halmagyi doesn’t put much store in food triggers other than MSG (I haven’t noticed a problem) and red wine (I have noticed a problem). Halmagyi also seems to make the distinction between anxiety as a symptom (the ‘physiological’ kind TM Vic, mvertigo 2010) vs the ‘mental’ anxiety that comes with too much migraine wearing one down. Well, I infer that from him as initially he suggested CBT for me but after our consultation he said not to worry about it (I guess he deemed me ‘sane’ and not in need of it). They also both seem cool with occasional use of Valium (a computer printout Gabrielle? Have you not heard of photocopiers?? :lol: )

I agree with you on the Hume Highway. That is one seriously boring stretch of road.

Vic

Great write up Gabrielle and glad you have been vindicated in so many ways. Actually, this is the first time I’ve heard a guru acknowledge the physiological anxiety. Nice to know THEY know. And now your hubby knows that you’re not completely a loose canon. :lol:

Waterston’s observation about physiological anxiety turning into the more psychological stuff is also right on the mark. That’s what happened to me. If only I had acted on it sooner in 2003 and hadn’t done the “I’ll tough it out with brute force willpower”. I often wonder if I have done my nervous system more damage by allowing anxiety pathways to become more entrenched back then. Had I dove straight into the valium and an SSRI I think I would have recovered 10x faster and actually enjoyed the summer that year and might not be so easily revved up now.

So no script pad? Bugger. You should have stolen the computer. :lol:

Scott

— Begin quote from “scott”

Actually, this is the first time I’ve heard a guru acknowledge the physiological anxiety. Nice to know THEY know.

— End quote

Yes -I have to say it was unexpected that he was so matter-of-fact about it. I wasn’t looking for the validation per se, but having had it, it was nice :lol:

My husband did come right out and ask (in a half cheeky way) " so she’s not crazy then", and Waterston said - no, she’s not crazy. :lol: you heard it here first folks.

It’s certainly reasonable to suppose that your nervous system go over-revved and the anxiety pathways are more entrenched - but you know even if you’d hit the Vs and an SSRI you might be in the same place now anyway … I guess try not to beat yourself up over it " if ifs and ands were pots and pans etc" :smiley:

Gabrielle –

I’m into day 3 of a nasty head cold and I can tell you – no question – my anxiety levels have hit the stratosphere. Everything is freaking me out and there’s very little room to keep my act together. That’s how it feels anyway. Emotions are totally exaggerated. Lately I’ve been going a bit hard on valium so not happy about having to take more of it right now but think I’ll have to. Visual vertigo is totally ramped up just typing. I know when I’m in the sh*t when my eyes darting across the key board starts to freak me out. Do you relate to any of the above stuff? How about when you get whacked with a cold?

S

Scott that sounds dire…I think you suffer a lot more with anxiety that I do as a symptom - but when it does get v bad I find I have to get up and move around - walk around or get into the garden and do something physical. Just sitting makes it so much worse and I get super fidgety and restless. Probably not an option if you have to be at work. Actually it’s the same when the visual stuff gets bad - I find that moving counteracts the movement in my head in some way and gives me more ‘balance’ [Waterstone nodded when I said that so seems that isn’t out to left field either]

I do seem to be stupidly healthy otherwise though as I haven’t had a cold for a few years at least (nope, not exaggerating) and definitely not since all this MAV fun started so I’m not sure what impact that would have on my symptoms. The fact that I work form home and don’t get out much probably helps reduce my germ exposure :lol:

Hey Scott,
I didn’t take Klonopin for 5 days as I was in bed with a bad cold/flu thing. However, now that I m up and about, I have had to take it twice daily to shake out the cobwebs…more dizzy than usual…I’m sure the pressure in my ears etc is not helping matters. Seems I get sicker more often these days…what used to be a 2 day thing, now takes me almost 10 days to get over. I still believe there’s some viral stuff going on…my p-doc does, too.
It will pass…use the V for now…that’s what it’s for…crutch!!
Kelley

Gabrielle - that’s great news and confirmation on your doctor’s visit. Always good for our spouses to know that we are NOT crazy or just a !@!@# nervous wreck. I got confirmation this week from two sources on previously mentioned topics on this thread: my neuro confirmed that anxiety with migraine/MAV, etc. is pretty much automatic and also causes the psychological bookend form of anxiety as well - how could it not?? Your brain has run amok. I got my first prescription for klonopin/clonazepam to intersperse with the topamax which I have finally raised to 75mg. Also, I began VRT this past week with my physical therapist and apparently it is imperative that you move around A LOT with these conditions to constantly challenge the brain to recalibrate and compensate. More activity actually is supposed to eventually lessen symptoms (not exactly as the activity is going on, but later on). Personally, I’m more inclined to curl up in a fetal position when I’m drastically dizzy and usually do because when it gets to a certain point because I have other nasty migraine symptoms and no exercise or activity is going to happen : )
Gail

Thanks Gail - interesting re moving around a lot - certainly my anecdotal experience is that when I’m moving eg in the garden or out and about or at the gym I’m much less impacted by symptoms than if I just sit still - ditto for driving. IIR the reason Waterston recommends tai chi is it’s a gentle but moving exercise that helps people improve vestibular functioning / balance

— Begin quote from “lorcalon”

Scott that sounds dire…I think you suffer a lot more with anxiety that I do as a symptom - **but when it does get v bad I find I have to get up and move around - walk around or get into the garden and do something physical. Just sitting makes it so much worse and I get super fidgety and restless. Probably not an option if you have to be at work. **:

— End quote

I am exactly the same. When I’m in that state I feel like I want to crawl out of my own skin I’m so restless and agitated. When sitting still and particularly when at work trying to read something and concentrate on it (understand it, analyse it etc) I will feel like my skull is shrinking and my brain is expanding - again, like I’m desperate to get out of my own body. If I get up and walk around I notice it a lot less. Yes, very difficult to function at work in that state.

— Begin quote from “scott”

Gabrielle –

I’m into day 3 of a nasty head cold and I can tell you – no question – my anxiety levels have hit the stratosphere. Everything is freaking me out and there’s very little room to keep my act together. That’s how it feels anyway. Emotions are totally exaggerated. Lately I’ve been going a bit hard on valium so not happy about having to take more of it right now but think I’ll have to. Visual vertigo is totally ramped up just typing. I know when I’m in the sh*t when my eyes darting across the key board starts to freak me out. Do you relate to any of the above stuff? How about when you get whacked with a cold?

S

— End quote

I’m into Day 4 of one, and I hope it’s valid for me to remind you that the scary stuff does dissipate as the bod beats back the virus. I don’t remember ever having a cold as an adult in which I simply couldn’t breathe through my nose for an extended period, however much strong saline I snorted/sucked in (or tried to). I’m real glad that didn’t freak me out; it would have, in the past.

I know it helped to have my sweetheart taking care of me; if something happened that was bad enough to require an ER visit, she’d be faster to decide that than I would be. I wish you had something/someone like that to reassure/comfort you.

David

— Begin quote from “david shapiro”

I know it helped to have my sweetheart taking care of me; if something happened that was bad enough to require an ER visit, she’d be faster to decide that than I would be. I wish you had something/someone like that to reassure/comfort you.

David

— End quote

I wish I had a sweetheart taking care of me too!! I think Scott should start a lonely hearts page on here…

[size=150]‘MAV Sufferer seeks likeminded MAV Sufferer to share long debilitating moments with’ …[/size]

God - you’ve gotta laugh (that or I’m destined to remain in a perpetual state of dissolving into tears!).

:lol:

:lol: @ Muppo - nice one

One of the least expected lessons I learned from my husband’s cancer ordeal was this: they’re onto something with that there germ theory.

I haven’t had a cold in the two years since his cancer diagnosis because I turned into an obsessive-compulsive handwasher who will not touch my face AT ALL after I’ve touched a surface of any kind. I know droplets in the air are another source of cold germs, but apparently that’s not the biggie, because I now swear by this handwashing/avoiding touching my face thing!

My husband’s health depended upon it, so I was able to train myself to wash my hands obsessively and to avoid touching my face (that’s a realy hard habit to break), and I’ve just kept it up.

We’ve had a couple of GI bugs, but I suspect someone preparing the food that we ate didn’t practice good hygiene (ewww!).

It may be worth it for some MAV’ers to consider trying these (admittedly extreme) cold avoidance practices as it truly reduces the chances of catching a cold - not a good thing for dizzy people to have.

— Begin quote from “maryalice”

I haven’t had a cold in the two years since his cancer diagnosis because I turned into an obsessive-compulsive handwasher who will not touch my face AT ALL after I’ve touched a surface of any kind … I was able to train myself to wash my hands obsessively and to avoid touching my face (that’s a realy hard habit to break), and I’ve just kept it up.

— End quote

You’re spot on. This was something I posted back in November (which got me banned from another forum when I said it was not megadoising on vit C that would protect against colds but it was about keeping your hands off your face! :lol: )

S

Scott said: “Waterston’s observation about physiological anxiety turning into the more psychological stuff is also right on the mark. That’s what happened to me. If only I had acted on it sooner in 2003 and hadn’t done the “I’ll tough it out with brute force willpower”. I often wonder if I have done my nervous system more damage by allowing anxiety pathways to become more entrenched back then. Had I dove straight into the valium and an SSRI I think I would have recovered 10x faster and actually enjoyed the summer that year and might not be so easily revved up now.”

Scott, can you explain this a little more, please? So are you, or the docs saying basically that the MAV is triggering anxiety in us that then manifests into true psychological anxiety if not treated with some sort of med? I have been wondering about this for a while - meaning, are people here finding that MAV as a whole has caused them anxiety issues that they never had before it hit, or at the very least, made it much worse if they had minor issues prior? I think I am having this problem now (since MAV hit) and while I “may” have had a predisposition to some anxiety, I think the MAV is making it worse. Only problem is that since I am already on Klonopin, I can’t take a similar drug like Valium (already tried one, xanax I think?, and it caused interaction problems since it was the same type of drug.) Doc suggested I could go on an SSRI, but I really don’t want to go on a long-term anti-anxiety/depression med. Only other thing I COULD do is take more of the Klonopin (the level I am at now does nothing for anxiety - is only for balance), but I am hesitant to do that because I don’t want to get into a habit of it since I already happen to like it! :slight_smile:

Cheers, Bonnie

Hi Bonnie
I don’t know how Scott would explain it, but my neuro says that due to the extreme hyper-excitability of the migraine brain, anxiety comes with the condition kinda like a 2-for-1 special! After a period of time, we realize how physically/physiologically ramped up we are and we realize that we are helpless to stop it. So, our minds realize we are anxious, and then we become distressed or further anxious about it. It is at this point that it becomes a cognitive/emotional/psychological issue. It’s basically a feedback loop: body alerts the mind and the mind alerts the emotions. [In the psych world we so often see the process reversed, so that may be why you are confused: often the mind alerts the emotions who, in turn, alert the body that it is anxious, depressed, etc.] It is incredibly common for medical conditions to cause emotional and psychological conditions.
Gail

Hi Gail,

That certainly makes sense and I do understand that aspect of it. In fact, I have read a number of posts here by people who describe it somewhat in the way that you have - that we become distressed/anxious because we are finding that we are anxious! LOL. I guess my real question here is do people find that anxiety as a whole has hit them with the MAV - not manifesting itself because they are becoming anxious due to realizing they cannot stop any of the MAV symptoms or the feeling of hyper-excitability in the brain, but do people find that anxiety on its own is now common with the MAV, as in before they had MAV, they didn’t have anxiety issues? Hope I am explaining this well. I know medical conditions can cause emotional/psychological conditions, but if one were to sit down and say ok, without myself causing or manifesting the anxiety (meaning I am freaking over the fact that I have MAV, etc), do I now notice that I have anxiety in and of itself now that I have MAV? I think from what I have read here that the answer is yes, but I’d like more feedback. Also, is that anxiety generalized or specific, as in do you have anxiety attacks or feel overly anxious from time to time or to specific events or only when thinking about your condition? If the latter, than that is different from what I am trying to confirm; my point is that MAV’ers brains/systems are causing anxiety as a whole.

Best, Bonnie

— Begin quote from “bcrelief”

I guess my real question here is do people find that anxiety as a whole has hit them with the MAV - not manifesting itself because they are becoming anxious due to realising they cannot stop any of the MAV symptoms or the feeling of hyper-excitability in the brain, but do people find that anxiety on its own is now common with the MAV, as in before they had MAV, they didn’t have anxiety issues?

— End quote

HI Bonnie,

This is absolutely true for me. I’m not an anxious person and have never had anxiety issues - but along with MAV came what Vic termed “physiological anxiety” - so all the physical symptoms of anxiety (stomach in knots, tight chest, restlessness etc) I get, but my mind isn’t anxious about anything. When I said to Dr Waterston he agreed that this is a common co-occurrence with this kind of migraine, but you have to be careful that it doens’t then go on to develop into full blown anxiety because you worry about the symptoms, and the condition etc - I interpreted this to mean, take the drugs/manage the condition to make sure the anxiety doesn’t run away with you and become an issue in it’s own right (although of course still bound up with the condition because that’s what causes you to be anxious) - and to be aware that the anxiety is part of the migraine complex.

Not easy though as your body is telling your mind pretty clearly that you’re anxious - so it depends on who wins the internal argument :lol:

speaking from my own experience, I never had any anxiety before this whole thing started. Now anxiety is one of my, if not my biggest issue. I keep it grounded with Cymbalta and Klonopin, but it was really hard to tame that beast. I would have the physical symptoms of acute anxiety all of the time, even with nothing on my mind. My psychiatrist did say it’s better to prevent it from getting worse as it can become a bigger beast if you try to hold out on it and just handle it…so bizzare…
Kelley