Thanks ladies.
I’m really keen to know what his opinion would be on the hearing voices side effect of Topirimate and the fact that I tolerated 50mg of Topirimate well, but 100mg has left me practically unable to function.
It also sounds like he writes a letter so that then the care is handed back to the GP- is that right?
Yes he does a very long letter with all the med options so that your GP can then manage you. He didn’t schedule a follow-up for another 9 months but I guess that is normal on the NHS.
The main reason I switched to Dr S is because I wanted to increase on the nori first and Dr Silver told me to stick at 20mg. I thought it was helping and wanted to see how far I could get on nori alone before adding in loads of other meds. Then I tried his recommendation of the beta blocker and felt awful so I went to see Dr S and I have been seeing continued improvement on nori alone, now at 35mg. I think Dr Surenthiran sees patients every few months at first and he told me he prefers to do one med at a time and only add another when a fair trial has been given to the first one etc. x
Just to add to the confusion Dr S told me that treating Migraine Variant is a different kettle of fish to treating normal standard migraine. I wish I had asked him what he meant and why etc?
This came about because my local doc told me to up my pitz but Dr S told me not to. He said i could have increased the dose if i had a normal standard migraine but not with migraine variant
That is confusing Robert, especially as Dr S has just prescribed Pitz to Tony who has no headache at all. The mind boggles.
Katherine - He prescribed pitz for me and I don’t have a headache. I was referring to the dosage. My doc said i could go higher in my dosage but Dr S said I could if I had a normal migraine but he said the max dose for Migraine variant is 2 mg I think
— Begin quote from “Katherine”
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.
— End quote
I found his letter, whilst informative, to be more terrifying than fascinating when it came to discussing the med options. All the details about the potential side effects such a foetal valproate syndrome, tubal pregnancies, acute angle glaucoma etc. When I showed his letter to my mum she was absolutely horrified and was quite against me taking any of these meds. It has subsequently been very hard for me to discuss this with her because she is not encouraging at all about me taking any medication for my condition.
Ah I see, sorry I misread the original post. I wonder why that is though. I know Dr Silver says that if any med causes fatigue, mood changes, memory or speech problems to stop right away. He says fatigue as a side effect stops the med from being effective. I wonder if higher doses of Pitz cause sedation.
Jem,
I just thought the letter was extremely informative and from the side effects point of view I was more reassured because it said which side effects usually disappear after a while. Yes there is always a tiny risk of serious side effects, they are mentioned on every single medication out there but they are rare. Better to know about these things, especially if you are of child bearing age.
No one wants side effects but no one wants MAV either.
Hope you don’t mind if I chime in here. I’ve read a lot on the site but not posted much. I’m here as my 13-yr old daughter has been diagnosed with MAV - well, at least the doctors (3 of them, pretty much experts) said her symptoms are “most consistent with migrainous vertigo”. My understanding is you don’t really KNOW that’s what you have until a migraine preventive works for you. Anyway, I’m in the U.S. and my daughter is currently taking the 15mg capsules of topimarate. We experienced a similar situation in which the pediatric neurologist kept talking and questioning about her headaches during our visits when we’d told him that dizziness is her main symptom. She does have headaches periodically but there not intense and don’t bother her. She just needs the dizziness, rocking 24/7 to stop. I wasn’t too concerned as I assumed that if you treated the migraine, then it should affect the dizziness. However, it is frustrating because it makes you feel as if the doctor isn’t listening to what you’re telling him, or is just ignoring what you’re saying. We did then find another dr. who specializes in the dizziness aspect (although not to the degree that it sounds as if Dr. S does) because the pediatric neurologist basically said he wasn’t convinced the chronic, constant symptoms were migraine!! His thinking was a little “old school”, I think. My daughter is now 9 weeks into taking the topimarate, increasing by 15mg every 2 weeks, so she’s currently at 75mg which is a dose which can affect symptoms from what I’ve read on here. However, she’s been feeling sick to her stomach since about 60mg to the point where I can see she’s reduced what she’s eating. I’m also trying to figure out if it’s interfering with her sleep, which, as most of you know, doesn’t seem to do her any good anyway! But during the last few weeks, she feels like she’s not sleeping as well, feels more tired and has been waking up more. She’s also been waking up in the morning before I go to get her up, so I wasn’t sure if that was the medicine having a good effect of kind of regulating her sleep, or it it just meant it wasn’t allowing her to sleep. I’ve told the dr. about these things and am waiting to hear… It’s hard when it’s not me whose feeling the side effects to determine when enough is enough. I’ve read on here how many people find topiramate very hard at first but they say you have to push on taking it. I don’t want to stop the med. too soon (it may be the one to help) but I don’t want to put her through too much when she’s already feeling so miserable. She’s doing school at home now because of all her symptoms which are so similar to many of yours, like Jem’s, I’ve noticed. She 24/7 has dizziness, sees with tilted vision when looking across the room, for example, (not when reading or looking up close), feels like she’s going to fall, is fatigued all the time, feels dizzier and worse with physical exercise, has blurry vision in the morning, has to work hard to focus eyes sometimes, muscles twitch and hands tremble sometimes, etc.
Well, that’s enough from me - wanted to let you know about the 15mg pills here. By the way, I grew up in Gravesend, Kent and my family still live there, although it’s been 5 years since we visited. Were planning to go back last summer but didn’t think it wise to travel with my daughter then as we didn’t know what the problem was. Not sure if it’s smart to do it this year even… I’ve been in the U.S. for 30 years now.
Hi Anne,
My boyfriend grew up in Gravesend. His family still live there too. It’s a small world! Whereabouts in the US are you now?
It seems that the neuros seem to either fall into the school of emphasizing either the headache or the dizziness but ultimately, if you’re treating migraine, you’d expect both to alleviate as they are both symptoms of migraine. Though it is a little frustrating when the dizzy-focused doctor doesn’t seem to want to treat the daily pain. Just as the first neuro I saw wasn’t too interested in the daily dizzies! What a palarva.
It would be great to find a doctor who had suffered this condition themselves.
I found relief on 50mg of Topirimate for a long time, but can’t hack the side effects at 100mg. I think you’ll know when the side effects are too much- it seems to become quite obvious. You have to weigh up the side effects against the benefit of the medication. For instance, how sick is she feeling? If she’s only reduced eating by a little bit, I’d put up with that for a bit- she may find the nausea settles down after a few weeks. Obviously if she’s actually vomitting it’s a different story and the side effect outweighs the potential of the drug working. I really would stick out the annoying side effects for a few weeks, in the hope that they settle down and the drug starts to work. But it’s when the side effects are becoming as much of a problem as MAV itself that I think it’s time to move on to the next drug.
X
Kath, I agree the letter is informative and it is probably best to be clued up about side effects but it’s just usually you get that info from the pharmacy or med leaflet and the fact that he put it all in the letter made it sound more like a warning and was a bit off-putting to say the least. It actually made me more keen to increase the nortriptyline on its own as that does not seem to have as many potent side effects as some of the meds. Anyway, having seen both Dr Silver and Dr Surenthiran, that is just my take on it. As long as we all find meds that help that’s the main thing I guess!
Anne, really sorry your daughter who is so young is going through this. Finding a good doctor who knows about this condition is tough. Maybe your daughter can only tolerate a lower dose of topamax, after all I think smaller people often need lower doses of meds. Maybe she should hold out at 60mg or so and see if things settle before going up again. No point in feeling a lot worse on a med. It’s interesting you are originally from Kent. That is where Dr Surenthiran is based. Maybe if do come over here your daughter could schedule a private appt with him to get his opinion on things. He is very experienced in this condition. I wish you and your daughter well 
I think someone else on this thread already said what I’m about to note. I’m in the US, so my doctor, whose name doesn’t have a single “s” in it , isn’t associated with the guru’s that seem to be the one’s to see in the UK (sort-of wish I were there sometimes). But I am very happy with my doctor, and have been impressed when reading some of these posts to note that my guy seems to either read a lot of what the specialists that you see are writing and reading too, or he is just really well versed on his own. Bottom line–I actually asked my doctor why he never seemed to pay much attention to me when I kept insisting on talking about my dizziness and disequilibrium (he too spends about 30-40 minutes per appointment with me). I had gotten frustrated and felt like he wasn’t really listening to my real issues. He was funny because he chuckled and said he KNEW I was dizzy–I told him that first thing every time I came into the room and he was well aware of that symptom. But it was his job to dig for the symptoms that I might not be as aware of to be sure that he was providing the best treatment possible. He explained that patients always come into the office complaining about the most prominent symptoms, but that it was often the less bothersome ones that were the most telling. For me, the fact that I sometimes see bright lights in my peripheral vision, and sparkles was a clear sign that this was migraine related–but until he pushed me to relay that information I wasn’t a forthcoming about that because I was so worried about the dizziness, which could have been diagnosed as something else.
He also noted that I never “complained” about headaches, but that I do have actual one sided head pain regularly. HOwever, my pain threshold is high, and my headaches are not severe so I passed them off as nuisances and never considered them part of my problem–HE on the other hand, DID see them as part of the problem.
So, while I may think I’m pretty smart, I suppose Dr. Tiexido (my guy–with no “S”), is pretty SMARTER 
Once being diagnosed with migraine does it really matter what your symptoms are. It’s not like they give you meds depending on the symptoms? They give you meds to stop the migraine which will then stop the symptoms. It’s not like they say oh your sensitive to light I will give you Nortytpyine for that.
I know Dr Silver treats restless legs separately but I don’t think the docs care about the symptoms that much as VM can cause so many different symptoms.
I could be wrong what are your thoughts? 
— Begin quote from ____
but until he pushed me to relay that information I wasn’t a forthcoming about that because I was so worried about the dizziness, which could have been diagnosed as something else.
— End quote
That was sort of my point though. In making sure that it was migraine and not something else–the doctor had to get past the “I’m really dizzy” to the “I also have headaches on the right side of my head a lot–especially after the shooting stars fly by” :o Go figure.
Yes Rob, not sure really…doesn’t Dr S say he prescribes Lyrica first if you have anxiety? I think someone maybe Richy said that. The doctors do seem to have their own order of preference. I think Dr S prefers the less potent meds in general and I haven’t heard of him prescribing some of the meds Dr Silver prescribes such as valproate, flunarizine, zonisamide. Dr S seems to prescribe Lyrica or Nori as a first line. Dr Silver seems to go for a beta blocker then topiramate. Maybe like you said this is because Dr Surenthiran sees migraine variant as a different beast or maybe those are his tried and tested favourites, not sure…
Yeah good point jem but then again it did nothing for my anxiety my local doc was confused when i asked him about it lyrcia helping anxiety
I know that Dr Silver won’t prescribe a tricyclic anti depressant for someone who gets restless legs as they can make the restless leg symptoms worse. Restless legs can cause something called ‘periodic limb movement’ during sleep which can lead to poor quality sleep. Since poor sleep is a migraine trigger it makes sense to keep the restless legs under control. So in this case specific symptoms do affect which preventative is prescribed but apart from that I think it’s anything goes.
Lyrica is prescribed for nerve pain, migraine and generalised anxiety disorder. Therefore if a patient presents with migraine and anxiety maybe this drug is more favourable as a first line med. Having said that, beta blockers are also prescribed for anxiety too.
— Begin quote from “robertgreen99”
Once being diagnosed with migraine does it really matter what your symptoms are. It’s not like they give you meds depending on the symptoms?
— End quote
Hi Robert – when choosing a medicine to trial a doctor does look at what they call the comorbidities of the migraine disease in the individual. So if you present with heavy anxiety and depression, it makes sense to go after it with either a TCA, SSRI or SNRI. If you have high blood pressure, Verapamil might be the first choice made. If a person’s sleep is suffering (a major migraine trigger of course) then something like pizotifen might be considered as a first line treatment over the others.
Scott 8)
What does pizotifen do for sleep?
It has strong antihistamine properties and will knock you out.