I am off to see Dr. Silver this evening. My first appointment. I am rather nervous!!
I am a ‘newbie’ here. Quick recap, after being dizzy for 5/6 weeks constantly and an initial diagnosis of labrynthitis i was then diagnosed with MAV by an ent specialist. That was approx 2/3 weeks ago. Found out about Dr Silver on here and thought like he sounded like the best person to see in my area.
The Ent specialist did not really help much if I’m honest, sent me to start vrt. However, after chatting online here I figured it may not be the right thing to do so instead I am off to Dr. Silver. I asked my own gp to prescribe me propranalol. Have been on it 2 weeks now and my anxiety has lessened. I have good days and bad days with regards to dizziness. A lot of rocking sensations still going on!
I know we are all different but if i hear of any tips which may be of some help I will be sure to post them
Just returned from my appointment. Wow, he knows his stuff! Seriously impressed! He spent about 30/40 minutes asking me questions, some I found quite difficult to answer! Some of the questions you wouldn’t have thought related to migraine. I then had a physical exam which was normal.
I was then given the opportunity to ask questions, to be honest he’d pretty much answered them anyway. He has doubled my dose to 160mg propranalol and if we don’t see an improvement his next choice of drug would be topiramate. He said vrt may not be necessary but could recommend somebody if needs be.
Tips: quite honestly you will all know these but here goes!
He stressed the importance of cutting out caffeine, including green tea, fizzy drinks etc.
Going to bed and getting up at the same time each day.
To drink at least 3 litres of liquid a day.
I am feeling very happy to be in the hands of somebody who clearly knows all there is to know about this condition. He appeared to be very positive about the prognosis. He made me feel much more positive too He talked about other treatment possibilities too e.g botox, and another strange thing (sorry didnt catch the name of it) something that you place on the neck??? Sorry, very vague there! I go back in 3 months, i will find out the name of the funny contraption!
So all in all a positive experience. He made me feel like it’s possible to have my life back… May take a while but I’m more prepared now I think!
Kathy, great to hear a positive story! We often wait a long time to see a specialist & have high expectations - these are often shattered! Shows the importance of doing the research and finding a specialist who knows his stuff.
Barb
Barb, I believe it was you who pointed me in his direction! Thank you so much
Funnily enough when I returned last night, I was lying in bed and I felt very dizzy indeed. I have had a few days where it was much more manageable so was rather disappointed.
Dr Silver didn’t seem particularly interested in the dizziness which is my main symptom. He asked a lot about how frequently I feel head pressure/pain/derealization etc. He was very keen to clarify how many crystal clear days I had in a month. I found that very difficult to answer as I haven’t felt ‘crystal clear’ since this dizziness/rocking started! However, he was referring to how much fullness/pressure/head related pain I felt. As my dizziness is the most bothersome symptom to me I found it really difficult to answer. I do get waves of pain/stabbing like pain in temples/a general headachey feel but they don’t bother me, not like a ‘normal’ migraine headache would.
Anyway, this morning I have woken up worrying whether or not I answered the questions to the best of my ability in order for him to make the correct diagnosis!!! I am so silly, I’m such a worrier and know I am being completely neurotic! Even worse since this all started! My diagnosis is probable MAV. Of course, me being me, I am not enjoying the word ‘probable!!!’ What the hell else could it be?!! Aaaaahh, I hate the anxiety that comes with this!! Sorry for sounding like a loon… my mind works overtime sometimes!!! I have every faith on Dr Silver, just doubt myself at the moment!
Kathy
The worry, anxiety, doubt, etc all comes with the weird and unfamiliar symptoms of VM - you will find plenty of examples of that on the forum! Which is why it’s so great - you can ask what you like & someone is sure to have had similar questions to you! Dr Silver has seen hundreds, probably thousands, of patients & knows what info he needs to diagnose so try & relax - hopefully the propanalol will help the anxiety.
Barb
Thanks for the write up Kathy. Always interesting to hear what a guru like Silver has to say.
It’s interesting that he is so anti-caffiene. I don’t doubt that for many here and myself included but for some it seems to have no effect in small doses.
Anyway you’re in very good hands now. Sit back and relax if you can and follow his recommendations. I’ve no doubt you’ll be sorted soon enough.
Dr Silver didn’t seem particularly interested in the dizziness which is my main symptom. He asked a lot about how frequently I feel head pressure/pain/derealization etc. He was very keen to clarify how many crystal clear days I had in a month. I found that very difficult to answer as I haven’t felt ‘crystal clear’ since this dizziness/rocking started! However, he was referring to how much fullness/pressure/head related pain I felt. As my dizziness is the most bothersome symptom to me I found it really difficult to answer. I do get waves of pain/stabbing like pain in temples/a general headachey feel but they don’t bother me, not like a ‘normal’ migraine headache would.
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Hi Kathy
Glad you had a good appt. Your description above is exactly what I felt after seeing him so that is why I went to see Dr Surenthiran as well because he is used to dealing with dizzy people all the time. I then swapped so I am now under Dr Surenthiran on the NHS. Dr Silver does know lots about migraine I just felt he wasn’t that concerned with the dizziness which, like you, is my main symptom. Will you continue to see him privately? It looks like the main difference between the private appts and the NHS ones is that you had chance to ask questions whereas I didn’t really and your follow-up is in 3 months but mine would have been in 9 months. I did have a list of 5 meds to try in that time though. My first was a beta blocker and second topiramate so just like you!
I am back in 3 months so I will ask what he thinks about exercise. As I mentioned earlier with regard to VRT he seemed to be holding off on that at the moment. I presume he made that decision as he wanted to get the migraine under control first. I would imagine that you shouldn’t over do it to begin with. He didn’t mention exercise as part of my initial treatment so I presume it’s not something he thinks would be effective at this stage. However, please note, that is only my interpretation of what he said. He just didnt mention it, wish I’d thought of that question!’
I will continue to see him privately for the time being. I need to get this under control!! It may be as things improve i will switch to the nhs. I’m just not sure at the moment. I remember you saying that it was 9 months till your next appointment, that’s a long time!!
I think the reason he was so interested in the head pain etc was to ensure that the dizziness was related to migraine. You were right, he had very clear criteria as to what he was looking for. I presume he didn’t need to ask much about the dizziness as it’s part and parcel of this annoying migraine disorder. I am guessing what he has advised me to do will help with the dizziness??!!! I thought he was the expert in all types of migraine?!!!
X xx
He also, very kindly, wrote a letter of support to be given to my workplace stating the reasons why I am off. He dictated it in to his dictaphone there and then!
I have just noticed your response to my ‘neurotic’ post!! Thank you :)) It is all so frightening. I have a few days where I feel ok (ish) and then BAM, back to as bad as I was, which of course triggers off my anxiety and I start worrying about everything and everything!
Starting 160mg propranalol today. Hopefully that will chill me out good and proper!!!
Thanks for being so supportive everyone. Big hugs x x x
Kathy, yes no doubt he knows a lot about migraine and all its symptoms…I just think the fact that my dizziness isn’t accompanied by headache or head pain a lot of the time may not have fitted his expectation of how migraine works. He was sort of implying in his questions that the dizziness would always be accompanied by fuzziness in the head at least, if not headache or neck pain and seemed surprised that the dizziness has been with me constantly for over 3 years. For me I can have dizziness without necessarily having any of those other things. That’s why for me I wanted to see Dr Surenthiran who is a neuro-otologist so he is an expert in vestibular disorders and sees dizzy people every day. I think Dr Silver is more used to seeing migraine headache patients as opposed to those who have vestibular dizziness (even though it is all caused by migraine).
I did manage to ask him about VRT and he looked slightly sceptical about it but did say if I wanted to do it I could pay privately to see someone and told me her name.
When I saw Dr Silver I felt he accepted that vertigo/dizziness is a common migraine symptom but he wanted to ensure there were other symptoms that indicated migraine as it would be unlikely to get these additional symptoms with a vestibular disorder. By other symptoms I mean restless legs, ibs, sensitivity to sound, light, smell etc. Obviously some symptoms overlap with vestibular disorders such as dizziness, motion sickness, anxiety etc. He is looking for the hallmarks of migraine and once he has established that he really doesn’t care what your symptoms of migraine are once he has a diagnosis because migraine is treated the same regardless of whether you only have headaches, only have vertigo, have both etc.
It’s interesting because I received his letter and diary sheets last week and since filling them in it does highlight how so far I have had head pressure every day and yet like Kathy I tend to focus on the dizziness rather than any head pain because I find the dizziness hard to cope with. I did say I never really felt like I had crystal clear days but I wasn’t too sure because it’s not something I tend to monitor. Now I can see that I am having head pressure a lot so feel I answered his questions correctly. It is hard though when the questions come at you thick and fast, you do hope you’ve answered correctly because you don’t have a lot of time to think about it.
Keep on 20mg nori
Add 300mg gabapentin for sleep improvement
Then add one of the following migraine preventatives (in this order):
Metoprolol
Topiramate
Sodium Valproate
Sibelium
Zonisamide
You are already on nori, a beta blocker and topiramate so that is pretty much his first line of attack. He may suggest higher doses of topiramate and propranolol though. As you can see there are some other meds further down the list that I am not sure if Dr Surenthiran uses so may be worth seeing him if you wanted to try one of those. Also he seems to have a good understanding of the’ Alice in Wonderland’ features of migraine which you may want to discuss with him. He consults from Liverpool and Warrington both privately and NHS x
Dr Silver also gives scope for going to much higher doses of preventatives than Dr S does. I found his letter fascinating when talking about each preventative. For example, with Topiramate, he says if side effects occur at even low doses (25mg) then an alternative preparation of 15mg paediatric sprinkle capsule exists and can be used. I’ve never read of this online anywhere. It’s just one example of many in the letter.
