Well I saw Dr Silver this morning and thought I would fill you in as many people have asked me to let them know how it goes.
One thing I will say for anyone who is thinking of seeing him is be prepared for a long wait as Dr Silver takes quite a long time especially with new appts and I had to wait over 2 hours after my allotted appt time in the waiting area, which was tough considering how I feel. The patient before me was in with him for nearly 1 and a half hours!
My appt took about 40 mins and he basically had a whole load of questions to ask me about my symptoms and my history. I did offer him my pre-typed history but he preferred to ask me the questions directly and he wrote everything down in his notes. Then he did a quick neurological check which was apparently normal. He said it appeared likely that I have Migraine Vertigo - that is how he referred to it. He then dictated a letter to my GP using his notes straight into a dictaphone so I could hear what he said about me. He said a few lifestyle modifications may be appropriate - he is very keen on cutting out all caffeine but as I don’t drink tea, coffee or fizzy drinks then the only thing I need to stop is chocolate. He also said get regular sleep and eat at regular mealtimes, which I do. Because I dream quite frequently during the night he said he would prescribe Gabapentin which should improve the quality of my sleep and he would also prescribe a Beta Blocker (I am not sure which one he said). I am to stay on Nortriptyline but only at my current 20mg per night, as it has helped my neck pain. I am not sure about the doses of the two other drugs he has recommended but I think this will be in the letter to my GP. There was a list of other drugs in order of preference for my GP to try if I had any problems with the Beta Blockers or Gabapentin - I think the first was Topiramate and then possibly Flunarizine and two others. He also requested a blood test with the results to go to him - he said it was to check for iron, iron binding and ferritin. I am also to keep a diary logging progress with the drugs and measuring my symptoms 1-10 each day.
I asked whether VRT would be beneficial. His facial expression suggested probably not but he did add in his letter to my GP that I may wish to get VRT physio and he recommended someone in my area if I did. He mentioned cranial botox as a potential future option if the meds did not prove effective although he implied I would have to pay for that privately as it would not be available to me on the NHS. He scheduled a follow-up appt to take place in 9 months time.
So that is how it went. I did not really have the opportunity to ask him as much as I would have liked about the whys, whats and ifs of all this but I do feel he is very experienced in treating migraine disorders and he clearly knew exactly what he was looking for in diagnosing it. I suppose I must now follow his advice, await his letter and see my GP for the blood test and new medications. I feel really rough today with the upheaval of going to the appt and all.
If anyone has any experience of taking Nortriptyline together with a Beta Blocker and Gabapentin please let me know as any info would be appreciated. I am quite apprehensive about taking 3 medications at once as most people seem to take one or at most two at a time. I feel like I’ll be a walking pharmacy now!
Hope this is useful for anyone thinking of seeing Dr Silver. Any feedback would be great x
HI Jem, sounds like a very detailed thorough appt. It is strange how all the specialists in the UK use different approaches. I am curious to why he did not suggest upping your nor first to a therapeutic level, 20mg is very low. Do you know why he wanted to put you on Gabapentin and beta blockers instead of trying them individually first and adding a second drug if necessary. All 3 drugs can be used on their own to treat classic and vestibular migraine. This is just an opinion of mine. He is the doctor. If you get lots of side effects you won’t know which of the 3 drugs is causing it. what do you think about it?
I feel exactly the same as you. I thought he would have kept me on the nori for longer and suggested upping the dose as I had planned to do. Unfortunately he didn’t really give me a choice on the meds and just dictated the letter to my GP and didn’t really say why he chose those drugs apart from to say don’t be scared of Beta Blockers causing dizziness as they are very effective in migraine prevention and about the Gabapentin he said it should give me a better quality of sleep because I dream quite a lot in the night.
Like you say, I am confused because I won’t know which drugs could be helping or which are giving me side effects if I take 3 at once. I thought perhaps he was covering all bases by putting me on one from each class of migraine preventatives, ie: tricyclic, anticonvulsant and blood pressure meds.
I will have to do what he says though as he is the expert but I am a bit worried. He didn’t say anything about how long I should stay on them but I will be seeing him again in 9 months so I guess at least until then. Does Prof Luxon do her appts quite differently to this? Did she say anything to you about how long to stay on the meds? x
I know Dr S uses Gaba a lot if your worried I would just try the prop first this has really good results and is good for anxiety I wouldnt be happy with three meds at once I know Dr S used two on my friend who saw him.
Its up to you though as you want to get better did he give you any positives regarding success etc? How are you feeling? I upped the ami last night and it seems to have helped Im not back to where I was but seem a little better each day again. You could try amitriptyline if these fail it got me out of a huge relapse Xmas 2010 xx
Thanks Donna, hope you’re ok and your baby is doing well? Glad you are getting back to your usual self.
Good to know Dr S uses this too. I may try adding one at a time just to check I am ok on it. I need to wait for my GP to contact me and issue the prescription so it may take a week or so. I felt rough after the appt yesterday but today has been better. I still feel dizzy and getting quite a few headaches lately but I am better than I was a few weeks ago. Still feel like there is a way to go yet though but fingers crossed for the new meds hey!
It’s good to know there are quite a few options out there if this stuff doesn’t work. He did give a list of other his preferred other options for my GP if I can’t tolerate the two he recommended but I think the next one would be topiramate (which I am scared of). Unfortunately he didn’t really say anything about success rates or recovery at all so in that respect I didn’t come away reassured but he seems to know what he’s doing regarding migraine.
Did you sort anything out about seeing Dr S or speaking via telephone consultation? x
I tried propanolol for migraine years ago. It did nothing for me. It doesn’t target serotonin or noradrenaline which is what the tricyclics do and that has worked for me. In hindsight maybe you could have asked what he thought about upping the noritryptyline. Dr S uses nori all the time aswell. He uses it instead of amitriptyline as is pretty much same thing but with less side effects.
Prof Luxon will only prescribe propanolol, amitriptyline or pizotifen and never combines drugs. If none of these work she refers you to a migraine clinic with neurologists who specialise in general migraine not MAV. She also wants u to come off the meds after 6/9 months. I think it is old school.
I know he did not want me to up the nori because he said in his letter to the GP that I should not increase it and stay at 20mg. Sometimes doctors can get a bit arsey if you question their decisions I have found. I have looked at what he has prescribed others on here and it seems to be Lyrica. I don’t think nori or ami are his drugs of choice. I suppose if the beta blocker doesn’t agree with me then I could ask my GP to increase the nori but I will try his stuff first because I think everyone responds differently to these drugs.
I just found this article which suggests the latest thinking is to treat migraine with a beta blocker and a seizure drug so maybe that is why he has prescribed both and just kept me on the nori because I said it helped my neck pain:
What about pitzo Jem was that on his list? I know a few got pretty much cured from pitz.
Topo is a good drug if you can tolerate it aswell. I would add one drug first then add the other but I think you could get better off just one if its the right one. I agree with Becks in regard to the trycilics I think they are the best to be honest.
I would not be happy to go off meds after nine months either Becks eeek! Ive taken mine for two years now she would not be happy with that x
No I don’t think pizo was on his list. I remember topiramate and flunarizine but there were two others I had never heard of!
Well I guess I will just give them a go, if worst comes to worst I can just stick with the nori because I know my GP can prescribe that one. Some of the others I am not sure she would have prescribed without his saying so. I will let you know how it goes anyway x
It would be interesting to know what those two other meds are? When is your appointment with the GP. Do you think you could get a copy of the list of meds from your GP and let us know. I am sure it will include the titration schedule of the meds as well.
Hi Nabeel, yes I should be getting a copy of the letter to my GP sent direct to me so I will post here what the meds are and what doses if it tells me that. I will be able to say what doses I am on for the ones I am getting prescribed for sure. I hope it helps x
Hi Jem,
I’m new here but just wanted to let you know that I saw Dr Silver in July. You should get a copy of the letter that he dictated to your GP. He suggested Metoprolol (a betablocker) for me. In the letter he explains how to increase your dosage. I’ve just started on Nortriptyline (2nd on my list) as I reacted to the top two doses he prescribed. I made an appointment with my GP for 2 weeks after seeing Dr Silver and the letter arrived a few days before this. he also sent me a copy of his talk and a years worth of forms to fill in to grade my haedaches and dizziness. Hope you get sorted with your prescriptions soon.
Hi Mags and thanks for posting. I wondered what your symptoms are and how long you have had this? That’s helpful to know that Dr Silver sends all the info out. It is hard to take in everything at the time cos it all went so quickly at the appt. That may well be the beta blocker he has prescribed for me. Did you find it helped you before you came off it Mags? I am currently on nori and it has been ok so far, just dry mouth and sometimes a racing heart & feeling a bit out breath when i started but it went away after a while. I hope it works for you Mags - are you just on one med at a time? x
Did Dr Silver give you or your GP a list of all other medications to try? Could you type out that list here with their titration schedule that he recommends?
Jem
If you could do the same when you get to see yours.
Hi Jem,
I’ve had this for years, some worse than others. I had my first migraine headache 33 years ago and first dizzy spell 24 years ago. It then came in phases of an odd dizzy spell and then dizzy for a few weeks. About 12 years ago it got pretty bad, 10 years ago I couldn’t function normally I was so dizzy and tired. I’ve always had headaches but never connected the two until I finally saw an ENT surgeon this year. He suggested MAV, which I’d never heard of. I researched and found Dr Silver and was diagnosed in July. I’d gone into chronic migraine by that time. I’ve had a headache everyday for months now.
I started on Metoprolol 50mg, then upped it by 50mg every 2 weeks. The headches and dizziness improved, but were still there. Two days after I started on 200mg I had blurry vision so decreased down to 150mg. Then the breathlessness started. I had spirometry tests done which proved it wasn’t asthma. I saw my GP again who said to come off it slowly and started me on Nortriptyline 10mg.
I’m now on 100mg Metoprolol and just increased to 20mg Nortriptyline. My GP said to play about with the doses to suit me. I know a lot of people have good results from taking a betablocker and nortriptyline.
I’ve had a not very good couple of weeks but I’m hoping that they will start taking effect soon.
It is really helpful having the letter to refer to. Its impossible to take all that information in during the consultation. Hope yours arrives soon.
Hi Nabeel,
Dr Silver recommended:
Metoprolol,
Nortriptyline,
Topiramate,
Sodium Valporate (Epilim).
Judging by Jem’s post he must have a list of favoured drugs that he recommends based on the person. My list is different to Jem’s. He also recommended Domperidome for nausea.