Hi Helen, I agree since taking the PP after my last silent migraine it definitely keeps them from coming back, the reason I suffer with VM is because I tried coming off PP and got hit with it! I would say I when I doubled the dose in May this year I felt it helped after a month of taking it to lessen the symptomās slightly but no where near what Effexor has done, I was on 180mg of PP and 75mg of Effexor for 3 months and since the beginning of January I reduced the PP to 80mg and doubled the Effexor and feel better so I know its the Effexor working better for me the double dose of PP. x
Thanks for that. I certainly couldnāt increase my PP dose any moreā¦ iām beyond maximum already. Did you find the Effexor kicked in quite quickly. I found PP didnāt do much for me for eight months which is a loong time! Are you in UK? If so, What part of UK are you in I wonder cos out West GPs have no ideas about using Effexor for MAV. Itās PP, Ami (which I cannot take), or Sodium Valproate which I wonāt take! Itās not a question of them thinking outside the box. I donāt think theyāve even found the box yet! Helen
Yes I felt better within a month of taking the Effexor, then when I dropped the PP and increased the Effexor I would say I had a few off weeks just as my body was getting used to withdrawing from the PP and increasing the Effexor. Iām fortunate Iām under Salford Royal hospital under neurology and the person I see is pretty good, heās really open to trying lots of things and doesnāt mind me emailing him to ask questions which is great. My Drs didnāt really have a clue they thought I had an infections, then a heart problem it was only by chance and the 4th visit I saw a doctor who bothered to look at my history and saw it was probably migraine related. I tried Ami it didnāt work for me, just sent me to sleep. I saw a tiny improvement in Topamax but that was all. I like the fact that with PP and Effexor you can take them long term if needed. I wish GPās would do more training on migraines it so frustrating!
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So glad youāve managed to find someone open minded and outside of the Home Counties too. Agreed. Itās so frustrating the lack of knowledge. Stupid when you realise itās such a common condition. Taking a detailed medical history is often what will clinch it. Thatās how, after twelve years of misdiagnosis, the neuro-otologist I saw picked up on it with me. Helen
I agree with you Helen. Mine was intense dizziness to start with, two bouts of vertigo and severe blurred vision. Now to this detached/dreamlike stuff with floaty head and eyes. Me and Amy have wondered if we were to dizzy to notice but now I think the symptoms just change.
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4 posts were split to a new message: Off topic chat
Guys please try to stick to the original Topic. Post requests for personal updates on someoneās diary Topic.
Hi. Iām late to this thread. I tried to read all of it before replying but Iām about to the end of my 20 minutes of computer time so I jumped down here to post. If I mention something already said please just disregard.
I think I know what you mean by the bobble-head feeling - where you feel like you have a fish bowl on your head. I have that too. Mine is constant and has been for years. It started out intermittently but eventually became constant. The intensity varies moment to moment, day to day. This has been the worst symptom to accept. I am so not a big fan of all the related visual issues.
I also have what is known as derealization - the odd sensation of feeling like you are watching your life occur from a distance. Itās like Iāve stepped outside of my body and aware of what I am doing but Iām also mentally removed. This doesnāt happen too often.
Iāve tried many of the meds mentioned but they didnāt help me. Iām quite sensitive to any medicine and most do more damage than help. Right now I am trialing Aimovig, 70mg once a month. It has cut my classic migraines by half so far but has also increased the bobble-head. Iām going to give it some more time to see if the bobble-head eases back down. My fingers are crossed.
Hi Nicola. I understand how dismissive doctors are about MAV. I had on and off symptoms for 6 years before i was correctly diagnosed because my gp kept telling me i had congestion and ear fluid and there was nothing he could do. I got so fed up i saw a different gp who took me seriously and listened properly. I had to suggest to her that it could be mav and she googled it before referring me to a neurologist. I wish i had got a diagnosis 7 years ago when this started, i wouldnāt have been so scared (the symptoms of mav can be really scary). Iāve experienced the derealisation you mentioned and it was terrifying. I felt like a puppet, that someone else was moving my limbs instead of me, my thoughts felt fast and my actual movements slow. Really really horrible. Luckily i have only experienced it when having very very severe symptoms and that isnāt too often. Try not to panic when it happens, it isnāt any danger to you. Which doctor do you see at Salford royal? Iāve seen 2 consultants there and am due to see Dr Zamansky at the headache clinic in April.
Hi - Iām not having a good time at the moment, iām not sure if my body is still adjusting to the increase of Effexor and decrease of propranolol, I felt good on 180mg of pro with the addition of 75mg Effexor but was losing way too much hair and because of the introduction of the Effexor I thought it would be wise to increase to 150mg and reduce the pro to 80mg. I hoping my body is just adjusting I made the switch beginning of Jan.
Iām under Matt Jones, have you seen him? I used to see him at Salford Royal but the past few times its been at Trafford general., I have heard good things about Dr Zamansky he does the Botox. I have to be positive as I have come a long way in two years! x
No I havenāt seen matt jones. I saw Dr Mohammed and Dr Sharaf. I am waiting to be considered for the botox, as nothing else has worked for me. Not found a single thing that gave me any relief in the slightest. Good luck with your journey with this horrendous condition, and i hope you continue to make progress.
Searching through my own archive MAV notes for something else I came across some comments made to my by a psychologist to which you may relate with regard to derealisation/disconnected feelings, Referring to his own personal experiences with MAV and his reactions following trying new VRT exercises he referred to a rather weird and profound anxiety that just came out of his body which gave him a feeling he was stepping into a dark abyss. He said āI would kind of lose touch with my senses and the world around me. This was something I found could not be resolved through any kind of rationalisation but only through feelingā.
I imagine the new exercises were straining his balanceās coping abilities as perhaps your outdoor activities do resulting in these ādisconnectedā feelings. Helen
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Intetesting. I think the brain has a hard time dealing with the dizziness and so shuts down certain things in order to devote energy to the dizziness. I only had derealisation when symptoms were most severe and the world looked distorted, the floor appeared to be breathing and i felt like an astronaut on the moon.
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Interesting you say this , I have had many times the floor appears to be breathing but recently and in the past when I was episodic . However it depends what you mean by bad I would consider myself a lot better dizzy wise but still have the floor breathing at time and feel like Iām in a bubble ? 
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Anyone struggling with derealization recently? This symptom ebbs and flows for me, but when I get down about VM it comes back with a vengeance. I think I used to have visual vertigo and derealization at the same time but the visual vertigo has improved a bit with Ami. Feel like Iām a step back from life all the time, like thereās a fog in front of me and I canāt clear it.
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This was my first symptom of VM. I actually had it months before I started getting vertigo attacks/more migraine-like symptoms.
I believe it is physically due to imbalances between network dynamics in the brain, or anxiety/psychiatric things from a psychological perspective. Itās unfortunately very common with migraine variants, and even epilepsy.
It was my first symptom too. I thought I had literally lost my mind and was in like a week long panic attack (not normal for me). I think of it as kind of a sensory overload issue. I try to brainstorm ways to fix it, but then remember Iām not a neurologist. Do you still have it now?
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I still have it. It was the first to arrive and I suspect it will be the last one to leave, although Iāve grown to not complain about it as much as my symptoms got worse. These days Iām thankful if dissociation is the only thing Iām dealing with lol
I think it just takes time and keeping the attacks under control for a significant duration of time. I think you need a big interval of time inbetween attacks to fully ārecoverā. My suspicion is that this interval may be a month or longer, which I havenāt gotten to yet
I think the interval thing makes sense. I went about a month and relapsed last week. I think it was getting better a little. I guess Iāll have to dig myself out of this one and shoot for the next interval. I also came off half of my lexapro dose (10 mg) which was probably not helpful for the derealization lol. Sorry you still have to deal with it. Good luck!
Thanksā¦I think the most important thing is to stay hopeful and not catastrophize. We are all going to make it 
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