I sympathize completely and I can tell you are suffering. I know we all have to just go through our days and do the best we can, but I sometimes (often?) feel like it would be easier to do that if I got some validation that yes, this condition is cruel and unfair, and that having to change the expectations for oneās life so dramatically when Iām still pretty young is heartbreaking and humiliating. The goal after a big loss is acceptance, but how do I get to acceptance when I feel so much grief and despair about what has been lost, and feel so desperately sad about the life that could have been? And yet I try to go through the days presenting a positive face to the world and hiding my embarrassment and not complaining too much about how I feel. This sounds terribly self-pitying, but those difficult feelings canāt just be tamped down and ignored, or magically transformed into positivity. I only hope that it is some help to know that you are understood and that your feelings are valid. And that there are more treatment options available, as exhausting as it is to have to be cycling through them. Wishing you a good dayā
Isengara, You describe the pain of grieving with MAV so well. Our loved ones may love us loads but they canāt know how hard a condition this is to live with. My marriage broke down six months into it. My husband even suggested I could be the one to move out. At that point I realised that he really had no idea how every day the things I manage to do are a battle, commitment, a feat of perseverence for meā¦ he saw me as lazy and depressed. Iāve given up trying to explain it to him. I needed to protect myself from how he saw me, and his criticism. My recovery will be done alone, as a single mum, no matter how hard that is ā at least I can respect myself and see how much effort I put in, at least I can give myself the encouragement, admiration and support that I would have hoped a partner would have given me.
We can be so proud of what we achieve on a daily basis. Getting up, out and about with MAV, day in day out, month in and month outā¦ itās huge! We may feel like weāre half the person we used to be (sometimes I feel like a living dead), BUT we are still alive and doing things.
Amy Louise I can do empathise with you. Itās ok to feel frustrated beyond words with this illness. Acceptance canāt be forced. Itās ok to feel what you feel. And keep looking for treatment, hang in there:-)
I so admire your resolve. I am so glad you seem to have found your own path to acceptance . It will make your path forwards so much easier and You have alot of inner strength to see you through. I hope you will continue to stay strong and thrive. Helen
Your attitude is very much to be admired. Thank you for sharing your thoughts. I hope I can find a fraction of your strength!
Word !
Thanks so much for the kind words @lsengara
I think whatās most frustrating is yes I have improved but I am still so limited in my life also feeling like you have a numbs hea and your not present in ur life isnso hard to deal with day in day out. Itās so hard to see the light at the end of tunnel when everyday feels the same . I do hope my second opinion can helps sometimes I really question if a pill is actually going to fix all this. I am not accepting this life at only 30! How r u feeling anyways lovely ? R u still on Effexor ?
Lucy I actually cried reading this , my heart literally goes out to you . You are so much stronger than you think , and your child is lucky to have a mum like you ! My partner didnāt get this at first now he really is so good but if ur other half canāt be there for you in your time of need he really isnāt worth ur thoughts. I know both us will eventually come out of this and will live a much fuller life because of it !
I know in the grand scheme of things of my life it isnāt a lot just feeling like ur not present or in a room makes life pretty hard . But I know I have to just take it day by day and get on with it . However I do think Iām going to stop pitz itās making me feel so tired and hungry and not offering a huge amount of relief so god knows what il try next 
Iāve read Pizotifien isnāt widely used mainly because of its side effects, weight gain being notorious it seems. I know all drugs seem to have alot of side effects but that comment struck me as being odd for that very reason. At least you are one of the luckier ones Amy. You donāt seem particularly drug sensitive and not anxious about changing drugs all of which go in your favour. I suspect you might end up on one of the anticonvulsants. They are very powerful and will most probably sort your āstubborn brainā as consultant called it out once and for all. I do hope so. Might just all work out for the best because Iāve wondered how youād manage getting Pizotifen in the US. Iāve no idea how their system works but Pizotifen was withdrawn there, from what Iāve read, several years back although in your circumstances Iād imagine thereās probably a way around it somehow. Helen
Hi Amylouise, I had this my head would feel so heavy like a fog, I noticed a real change when I started venaflaxine iām now on 150mg and 80mg of propranolol both ER, Iām two year in, and am probably about 90% most of the time. I also do the diet, have supplements and exercise but Iāve had to adapt exercise. Hope you find some release.
Thank you so much for your reply ! I am so happy to hear this has eased for you . Did u kind of feel like ur head was numb and filled with cotton? Itās my worst symptoms . Do you have normal days now ? Sorry for all the questions I think Effexor may be my next drug tbh so happy to hear some positives 
could I also ask how long it took to kick in x
Amy, Iām so sorry that the pitzotifen hasnāt seemed to provide much help. You have given it a good try and it may take longer still to be effective, but I think you are right to be proactive in seeking new treatment options.
Venlafaxine (Effexor) has provided relief from the symptoms you describe as your worst for quite a few people on this board, myself included. Iām up to 75 mg/dayāa somewhat high dose (for migraine, though low for depression. If your doctors arenāt certain about what to suggest next, perhaps this is one you can discuss with them.
Hoping you are having an ok day and managing. By the way, venlafaxine started working pretty quickly for me, within a week Iād say.
Hi Amy, Yes I had that feeling you describe, very heavy head like I was hung over and filled with cotton wool. Yes I have lots of normal days now I track my days every day I can go up to a month clear then I will have odd days here and there but its not continual. I started Effexor on 25 September at 75mg and was also taking 160mg of propranolol I would say I saw am improvement a few months in by far the biggest improvement from any med Iāve tried, which have been Topamax and ami I was always in propranolol 80mg because on silent migraine and thyroid issues. I did a lot of research on the combination of Effexor and propranolol and it seems a good combination, I then asked my neuro to double the dose of Effexor and decrease the dose of propranolol which he agreed to so I started on 150mg 3 January and decreased to 80mg Propranolol so far so good, I have seen a change really the last week as my body was withdrawing form propranolol and hiking u the Effexor so I think my level are evening out now. xx
Hi Amy, I want to say my symptoms have changed in the last 1.5 years of having this chronically- From having a rocking boat drunk sensation to a more weird derealisation sensation- on and off, and thatās with taking topamaxā¦ And I have to say this feeling is better than the imbalance drunk feeling i had before. So I believe the symptoms do slowly change. hang in thereā¦ and i will too lol
Thanks so much @lsengara really appreciate your kind words. Iāve done 5 months on pitz and Iām over it now I feel this is long enough. I see a new specialist in Feb 13 and Iām just going to ask to try Effexor I feel if I can get rid of this drunk disconnected feeling I can deal with the rest of it ! Iām glad to hear ur still seeing improvement and hopefully more so now youāve gone up x
Thanks @123isall I wondered how you were ? What dose are you on now ? I still get the rocking but for me the main thing bothering me is the 247 disconnected feeling . Even if I could just get a break from it Iād be happy but Iām sure I will get there just takes time
Hi Nicola thanks so much for the reply . Itās so helpful to hear someone else has had this symptoms as some days I feel I am truly losing it !
I only got to 50 mg on nort and it didnāt do much pitz itās now been 5 months at 3mg and still not much so I see a new doctor in a few weeks I think Iām going to start on Effexor and pray to go itās the one for me!
Iām so glad to hear itās helped you and u have lots of normal days . I tried prop got to 160 and didnāt feel much did this initially help you without Effexor? It really does seem so many do well on Effexor especially with this particular symptoms so I think Iām going to just go for it and hope for the best 
I think you may have hit on something here. I know MAV morphs but Iāve noticed being on meds once the 24/7 dizziness ceased, other symptoms appeared. At first I thought maybe theyād been there all along And I hadnāt noticed them but now I wonder whether whatever was causing the 24/7ās just had to come out somewhere else. System not yet ready to be ānormal/pre/MAV but better than it was when 24/7 dizzy. Still struggling but not as much. Helen
Hi Amy, I would say 160mg helped but when I added the Effexor I noticed my symptoms subside a lot more thatās why I reduced back down to 80mg of the propranolol plus I was losing hair at the 160mg dose, its not enough that we have to have this awful illness but losing hair as well it nearly tipped me over the edge! 
I eventually want to get off the propranolol but every time I have tried I get a migraine but I have never had another medication to combat migraines that I was taking as well as the propranolol so Iām hopeful that with the Effexor I can get off the propranolol and be down to just one med. I think with this illness you just have to go for it in the hope it works and then onto the next if it doesnāt. Good Luck let me know how you get on! xx
Could I ask, and I appreciate how difficult it must be to pinpoint, what you felt the Effexor helped with more than the Propranolol. I ask because I take PP myself and am beginning to think itās struggling to cope on its own. Itās certainly keeps full on attacks at bay. Iāve gone over three years since my last full on attack but it broke through three weeks back although thankfully not as severe as previously. Helen