Sooo if this isn’t the most random thing to happen , please tell me your thoughts .
I was booked to see dr s end of this month saw him last in January . I wanted to discuss medications as currently I’m med free ! Well yesterday morning at 9am he calls me ! I was very taken back he’s never called me before ! He then asked how I was doing and said if he could avoid me a trip to see him then we can discuss over the phone . I was a bit angry at this because one I figure he’s going to charge me and two I had my questions to ask him and had to start work so was so rushed on the phone ! Had no time to talk properly !
He said the next med he wants me on is venlfaxine , he did say some interesting points. I have started getting full on headache migraine now he said this is a good sign ?! Go figure ! He said he thinks all the meds I’ve taken have helped my brain to heal to the point it’s at now ! The best is he said I’m in the fast category of healing ! so 18 months is fast ? Sorry if that scares anyone I was pretty shocked myself but hey maybe this is to give some of you realistic expectations on how long the mav brain can take to calm down! He told me to remember how I was when I first saw him to now and I said it dosent bear thinking about as I was in the darkest place of my life ! In 18months I’ve gone from 5% functioning to 50% most days . This is considered fast in mav world
Anyways I told him I had a lot of questions so he said I need to call to rearrange another phone call if he actually charges me for this I’m going to give his secretary an ear full! Has he ever done this to anyone here ?
My last questions is people ok venlfaxine ( Effexor ) can you give me your thoughts , side effects ? Prozac gave me insomnia and I’m really worried this will too as I’ve read it can ? He also said start on 37.5 but I’m wondering should I start lower ? God I hope this med fixes me bubble foggy head because what it would feel like to have a clear head even for an hour I would actually cry !
Dr.S theory has some merit. As i got better migraines got worse and dizziness reduced. But it is still a daily struggle and a new normal. I know lots of MAVers got to a stage where it was only migraine and 0 dizziness.
I went up microdosing effexor. Sleep can be an issue but it normalizes. Weight gain is a bitch but should not be for you
Hi Amy, well it’s certainly a different perspective but I’m not convinced, after 3 years of mav I’d say that a blend of time, meds and level of acceptance about the condition contribute to improvement generally. I’m doing very well on venlafaxine. I started low and slow, actually 9mg,i cut the tablet in quarters. I’ve broken out my journey tirating up in my diary.
In terms of the drug itself, I’d recommend extended release and that’s based on my personal experience vs immediate release.
I’m sure others on venlafaxine will jump in here, @Mav and @dizzy3 I know are having success with it too.
Hope the path forward becomes clearer in terms of what to do re venlafaxine. You are quite brave at trying meds tho so leverage that courage in your decision making process. Take care x
I just started Venlafaxine one week ago today. 37.5mg ER. Looks like we’re the new Effexor Forum Representatives for the next few months (at least) .
I’m usually really sensitive to drugs but didn’t have any side effects at all at this dose, so I would follow what your Dr advice (also take it in the morning to avoid insomnia).
Best wishes with it, I’ll keep my fingers crossed for ya. keep us updated with how you get on!
D
Hi Amy. Well there’s a turn up for the books. Now, you will see how cynical I really am. I suspect the world of dizzy patients and specialists in the UK is extremely small. Dr S must know Prof Luxton and I suspect there is a very effective jungle telegraph operating out there. It’s too small a world for them to be treading on one another’s toes. It seemed strange to me that a person of Prof Luxton’s reputation and standing didn’t prescribe for you when you first saw her and that she wanted you to see someone else first. Seemed odd. What happened about that if I may enquire. Did it ever come to fruition, the second opinion? Wheels within wheels I’d say. Consultants don’t go around making unsolicited phone calls to patients in the UK. Not out of the goodness of their hearts. And, no. Don’t pay for that call. Overall, a very interesting experience. Helen
How strange what Dr S said about classic migraines being a good sign. I’ve noticed I haven’t had a single classic migraine in the 11 months I’ve been ill with MAV. Whereas I usually get a few every year. I’ve been wondering about that. As if my brain functions differently at the moment or something.
Hope venlafaxine works for you, wishing you all the best with your new med trial
Perhaps he meant that the having classic migraine headaches is a good sign that we’re treating the right thing with this protocol (migraine). Just a thought
D
I’ve read sometimes the constant vertigo attacks do revert to Classic Migraine in time. Maybe he’s thinking it’s easier to treat/live with? I noticed it can be a pattern where there are strong hormonal links. Mine went the other way. I remember having sick headaches and what might have been abdominal migraines (remember days holding hot water bottle against my tummy and a flannel on my forehead - couldn’t do much else. Run out of hands!) when I was ten/eleven maybe. All just disappeared at menarche then MAV popped up as debilitating vertigo spells without the headache soon as I hit menopause. Helen
That’s kind of what happened to me. My vertigo attacks eventually disappeared, but I was left with intermittent brain fog and related neurological troubles e.g. scintillating scotoma. This didn’t need medication ultimately, just discipline keeping away from caffeine and too much chocolate! Yes, I agree with Dr. S. I believe this is a good sign. I believe it shows healing.
@Amylouise sadly 18 months is a blip! I’m actually surprised you didn’t get the gist of that from your time on mvertigo. Someone can correct me but I can’t recall anyone who’s med free (let alone recovered!) quicker than 2 years (and that would be going some!)
It certainly would be some going, that. The experts reckon one needs at least six months on meds, most say 12, to get it under control before attempting to quit. MAV doesn’t seem to quit in a hurry. Helen
Hi Amy, glad to hear you’ve had some improvement if only small. I too have had similar experience with Dr S. I swapped from private to NHS at Medway hospital for the 2nd appointment I gave feedback that I’d had little improvement on nort but some improvement. He kept me talking all about 5mins then concluded felt pointless. Then had a letter to doctors saying how great I was doing with big improvement and I was basically a success story ??? WTF ! Couldn’t believe it… by this time December I had declined rapidly like I was 5% darkest place in my life and 15 year mav journey. Couldn’t get an appointment until Feb and it was telephone. Except he never called lol I must of rang his secretary 10 times trying to rearrange there mistake but kept fobbing me off I was fuming Wrote a letter of complaint.
Finally got a call and he didn’t really seem concerned decided to put me on Effexor venlafaxine which has gone pretty well so far around 50% I take 37.5 in morning with breakfast no side effects as of yet. He did say increase to twice a day after 2 weeks but haven’t yet. Hope it helps you improve
Hi Amy
I started extended release Venlafaxine at 12.5mg in middle of March (its a 37.5mg capsule with 3 x 12.5mg pellets inside so I was able to open the capsule and start at a lower dose). I increased by 12.5mg each week and now I am on 75mg daily. I can honestly say that I have experienced zero side effects. I had tried Venlafaxine immediate release tablets before but was unable to get beyond 37.5mg due to side effects so I am delighted to say that the extended release has been a far better experience. It has stopped my constant dizziness and has reduced my head pressure however I am still having trouble outdoors walking and in artificial light but to a lesser extent. I am due to increase again by another 12.5mg next week and so I am hopeful of further improvement. Over the past 2 yrs I have tried and failed with Propanolol, Amitriptyline, immediate release Venlafaxine, Gabapentin and Candesartan. In addition, Ven has worked wonders for the constant anxiety that has come with MAV for me.
Hope this helps
mav
Amy, I did not have much side effects, just insomnia at the beginning. I titrated up to 75mg in 5 days under medical supervision with no trouble. Long term side effect right now is the weight increase because I crave carbs! I al at 150mg. It was at this dose when the carb cravings started. Has helped me with most of symptoms but the rocking which is still there at times.
I would give it a try and you can totally micro dose.
All the medics I’ve read state to only use extended release for that reason. Even my own GP, who is totally ignorant on MAV but uses Venlafaxine for other conditions knew that. I was ever so impressed. (Actually she’s an OK GP and has alot of medical knowledge on other conditions). Helen
Thanks so much for the response I definitely am taking a fuck it approach now with meds as just want to do better . I’m gonna start very slow and go up, can I ask how long it took to feel positive changes x
I will never u understand mav and how it works BUT he said I’m going in the right direction so just gonna hold on to that. I did found out he isn’t charging me for the call and was actually trying to be helpful which I’m quite gobsmacked about !
He’s meant to re arrange a call to discuss and hopefully I’ll be starting the ven soon!
I was very taken back he’s never called me before ! He then asked how I was doing and said if he could avoid me a trip to see him then we can discuss over the phone . I was a bit angry at this because one I figure he’s going to charge me and two I had my questions to ask him and had to start work so was so rushed on the phone ! Had no time to talk properly !
so 18 months is fast ? Sorry if that scares anyone I was pretty shocked myself but hey maybe this is to give some of you realistic expectations on how long the mav brain can take to calm down! He told me to remember how I was when I first saw him to now and I said it dosent bear thinking about as I was in the darkest place of my life ! In 18months I’ve gone from 5% functioning to 50% most days . This is considered fast in mav world 
Wrote a letter of complaint.
