I think it takes a good 4 to 6 weeks to get into your system fully. You need to give it more time. Iām feeling good! Iām now on 180mg of verapamil, in about 2 more weeks Iām going to go down to 25mg of nortriptyline from the 75mg Iām on now and hopefully continue to feel good!! At 25mg this weight will come off!! Keep me posted on how youāre doing.
Thatās amazing Lisa Iām so happy youāve found an alternative !!! 
brilliant news !! Yes I think some say it can take 4 weeks to feel any change I am hoping this is true !
Hi Lisa just wondered how your doing did you come off nort ? Dr S put me on pitz , within a week all my light sensitivity went down thatās all so far but Iām praying itās a good sign only been on the meds 2 weeks so hoping soon it will fully kick in
Amy, I was wondering how you are doing on pizotifen. My recollection is your symptom pattern is similar to mine. Nortriptyline is bringing me only mixed results and Iāve been on it 4 1/2 months. For a while it was quite effective for lessening headaches, and some progress on the woozy head/drunk feeling/focal dysfunction too. I had a stretch of quite good days but then things regressed on both fronts. I feel like I know more than my GP about the various drug protocols for VM at this point. Not sure I what I should do nextāincrease nort or try some other drug (or no drugs?). I am considering travelling to see one of the expert neuro-otologists because I would just like to discuss this with someone who has heard it before. My next neuro appt is 6 weeks from now and it will be like starting from scratch; just feeling frustrated about so little progress. Not keen to start switching drugs b/c the stopping and starting seems brutal, but also donāt want to stay in this state if something else might work better.
Hi @lsengara I totally know where your coming from this was how I felt on nort yes it helped some but not enough to get me where I needed to be be . Just to put your mind at rest dr S is one of the best and he said to me itās very trial and error with meds. He said sometimes things can also stop working and we can plateau I had already come off nort as per advice of my gp. Then was on dosulepin and dr S isnāt a big fan of this so he told me to come off and start pitz however I reckon if I was still on nort he probably would have just added something . Iām not a doctor but just my thoughts . Like you Iāve become far more knowledgeable than most gps when it comes to Vm because I have too . I guess we have to advocate for ourselves . Itās worth travelling to see a good neuro otologist just for peace of mine and reassurance also he can give you a solid plan of what to do next . Canāt remeber where your based is it the us ? Who are you going to see ? If itās any reassurance in 2 weeks on pitz I now have almost zero photophobia thatās all itās helped With since come off dosulepin the rocking is back I am hoping this all evens out this mav rubbish doesnāt seem like an easy fix thatās for sure .
X
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Thanks so much Amy. I think all day long about whether or not Iām on the right drug/dosage, what I should try next. Iām in Canada, where we have a good healthcare system (though I have no insurance for meds), but I donāt like feeling that Iām the one making the decisions about treating this serious condition. I am fine with being my own advocate but making treatment/medication decisions about a complex neurological disorder is kind of out of my leagueā¦yet I feel like thatās what Iām doing. Maybe Iāll see if my GP can get me a neuro-otologist referral (if there are even any in Toronto). Hoping things are going ok for you and upward trendingā¦
Hi Amy,
Yes I am down to 25mg of Nort and still at 180 of verapamil and Iām feeling great!! The weight is slowly coming down so Iām feeling better all around!! What drug are you on now thatās helping? Are you able to do more life normally? Thank you for thinking of me!
Lisa
I totally understand , I definitely think ask your gp and maybe if you can afford it pay to see a neuro as a one off thatās what I did for dr S as the weight was very long and I needed help . Cannot put a price on your health sometimes Xx
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This is wonderful to hear Lisa Iām so happy for you ! I have started pitzotifen ( sandomigran ) only 2 weeks in so maybe too soon to tell . Dr S said to give it 6/8 weeks so I really hope it works . I get a bit confused With how long a med should take as some people on this board are 80% within weeks so when I donāt experience the same it makes me want to change meds but this one is low in side effects so I am going to stick it out . just hope it gets rid of the spaced out drunk feeling
Great idea to see neuro-otologist. If you hv a choice find one who specialises and is prepared to follow it through and stick with you. Maybe unlikely. I say this because the one I saw was brilliant, introduced me to MAV (at that point Iād never heard of it and you cannot research something youāve no heard of), gave me probable diagnosis but there his interest ended. He advised preventatives and told me he could do nothing further to help me much as he regretted not being able to take more of my money. At least he was honest. I guess he expected my GP to know about it. Unfortunately she has no clue, so Iāve had to run it myself right through. I did later see a migraine specialist neurologist but from a practical/management viewpoint I now know I know far more about MAV than her. They only stop answering emails when they no longer have an answer! When you are footing the bill!
Itās certainly not ideal, but, believe me, it isnāt. Really, it isnāt and one as advantage of DIY is your case has your own 100% attention. You really can be The Expert on You.! In fact I suspect any MAV sufferer who spent 6-8 hours researching it on sensible accedited websites and read a few medical papers on it would be streaks ahead of any GP and not far behind some consultants. First you need the specialists and tests etc to obtain a diagnosis of course. Iām not suggesting self-diagnosis.
If you cannot get one that will offer continuing support (which is where UKās Dr S scores I guess) just get the diagnosis, and their preferred list of preventatives to try in priority order, and you will find you can do it yourself quite easily with the help and support from this forum. Helen
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I wonder if this is still a viable option?
I think the biggest blocker to this idea is the lack of returnees coming to tell us how they are getting on.
I think once someone gets to āclose to recoveredā they lose touch with the website.
It also may be true (and this is so in my experience), total recovery is either impossible or simply takes so long you never get to the point where you can say Iām 100% again, even though you are 99% there!
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It was typed rather tongue in cheek Iām afraid but I agree entirely. The million dollar question came recently from Kirsty @MNEK18 when she wrote is this as good as it gets?
Strange timing though more or less simultaneously with my post @Blondie posted in another thread :
just to update I had a three month relapse and just to let you all know I started back on my old meds and they seem to be working.
So grateful that I feel much better thanks for the support guys hope Iām not back too soon
Kind of proves your point, Helen
Sadly i fit into this. So if theres a place for us I will add my name to that list
Jox
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I think this is the case for most cases of MAV. It comes down to controlling it by medication and trigger avoidance with possibly other lifestyle changes together with adopting life management techniques which makes it easier to live with rather than it going away completely and permanently. It seems many on here achieve 90%+ control over time with a combination of the above and manage to get on with their lives. I think that Gold List would be incredibly short. Helen
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I also think that Gold List would do more harm than good. Itās a nearly unobtainable thing that gives false hope, or worse, a sense that if you donāt manage a complete recovery itās somehow your own fault. If you can control (mostly, a lot of the time) an incurable vestibular/neurological disability to 90% and get on with your life, thatās a medical miracle. Nobodyās expecting that of MS or Parkinsonās. Just living with MAV and maintaining optimism should be at least a Silver.
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I agree with every word you say Emily
Jo x
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Donāt they do a Silver Plus or Silver with Honours and an Endurance Silver for Long Service.
Pretty Please. Plain Silver is a bit on the mean side though I agree Gold is pretty much unattainable. Helen
Lovely. Even bigger and better than I had in mind. Thx. I was just reading somewhere else @mav was saying her neuroās very keen on people being in the right mind set as itās so important with MAV. So a silver medal that size should have done me more good than a whole packet of Propranolol. I feel better already, I was having a sub-Bronze Day before you understand. Helen
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