The Vestibular Migraine & Secondary Hydrops Community
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New here ... looking for reassurance


Hi Jo,

It sounds like it’s pretty common, it’s nice to know we heard the same thing - I’m 24 years old so I’m not sure what spurred mine but I guess it can happen whenever. I’m so sorry you have been dealing with this for 4 years and countless drug trials. I can’t imagine - i’ve only had 3 drug trials but am hopeful for something. I’ve recently ended my Topiramate as it made me feel moody and pretty awful and started CBD oil supplements and they are helping me with my anxiety/stress. I’m sure mine will morph again. I really hope you can find relief soon.



Effexor helped with my photosensitivity, depersonalization and dizziness. 100% better is not something I expect to achieve, but I’ll take 80%, which is where I’m at. Think of the visual snow like tinnitus. It’s annoying if you focus on it, but ultimately harmless. You could try verapimil to deal with it. That drug causes rapid weight gain as a side effect. I have other, worse metabolic issues to deal with, so I decided to ignore the visual snow and move on with life.


Hi Amy - couldn’t agree more. That’s the part where I’m struggling the most is that my symptoms are 24-7 and I never thought migraine could be like that. It definitely worsens in intensity and I’ll have episodes where I feel a lot worse (usually after bad sleep, sometimes coffee). I know identifying “triggers” is huge, but I always say how can I do that when it’s constant? Struggling with that.

With regards to derealisation, yes I have that constantly. Again, it increases with intensity and can be so so unbearable I feel like I’m going insane. I feel for you here. I am determined we will find something that works.

I am totally in the same mindset that a magic pill would cure me too. I have also come a long way, I feel like it’s been a decade since these started, but definitely have gotten better at coping. I totally understand your worry about starting a family - I can imagine how that would really take a toll on you and just add another stress to your list. I am 24 years old, but have pretty much been housebound and it constantly limits my ability to be social anymore, so I just wonder if I’ll be able to take up those activities again.

I actually just stopped taking my topiramate. I thought I saw some relief at the lower doses 25 mg so I advocated for myself with my doctor to decrease back down to the lower doses. HOwever, I got some bad side effects with overheating and I value small exercise and being outside so I didn’t want that. I am now trying CBD oil supplements. They have helped with my anxiety the past few days and from what I can tell, definitely have given me more calm and positive outlook on my condition to help me get through work (I work from home - very lucky I can do so and be comfortable when it is bad). I’ll take anything. I still feel out of it and dizzy with my visual eye floaters and the like, but time will tell if it does anything to help that aspect. I am continuing physical therapy as well.

Best xx,


Hi Elizabeth

CBD, cannabis is it. If it is, it’s still illegal in UK. Our parliament is actually debating its intro for certain medical conditions this week I believe. The current case is a 12 year old with severe epilepsy. As they do use some same drugs for epilepsy and MAV it might prove helpful for both. Interesting to see what develops.

Do you find it helps.


Hope you feel better soon Amylouise…you are in good hands with these guys here on this forum. Sometimes i feel like im going insane then you read other peoples posts and think…yes thats me!!!

Think i may ask for Propanolol to be added to my Botox treatment then take advice from Helen hows best to take it as she seems to have it sussed.

Take care of yourself

Jo xxxx


Hi - this website I was just sent by the AMF (American Migraine Foundation) is helpful in explaining the differences between Hemp/Marijuana and the respective levels of THC versus CBD.

CBD is actually derived from hemp, which is made up of the plant seed and fiber and has high levels of CBD and very low, essentially insignificant levels of THC. I believe this is legal in the UK as it is in the US. CBD is extremely low in the psychoactive THC compounds which means you do not experience any intoxication or high associated with marijuana but you still reap the therapeutic benefits.

With regards to physical therapy, I have only just started this week so it’s still TBD on whether or not it will work for me. However, I have neck pain that is a symptom of my migraines (it may be a trigger too) - either way I have a lot of tension and I think that the exercises I am doing in physical therapy will only benefit me in this regard - lots of stretching and tension release. My therapist recommended I use this product to help release cranio/neck tension:

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I will keep you updated on my progress with VRT. At this point, I will do anything and I feel as though it can’t hurt me.



Hi Elizabeth

Yes, you are right. I stand corrected. Apparently CBD Oil is legal here. That did come asa surprise.

Yes, neck ache is synonymous with migraine. I remember suffering from it for years and nothing seemed to relieve it for any length of time and it used to keep me awake. I’d lie in bed unable to get my neck into a comfortable position, the spare bedroom is still full of assorted ‘spare’ pillows of all shapes, sizes and materials. Lying in bed with a neck that felt the length of that of a giraffe! Eventually reached conclusion it’s my balance. That puts everything out of alignment so yr head’s not in the right place and yr neck suffers so it all goes back to the migraine one way or another.


Thanks so much your words have been really kind and really helpful . I agree I am suffering with anxiety not so much in terms of I’m having panic attacks but I am worrying daily about how I feel and that’s not helping . I was going to ask my doctor for a very small dose of an anxiety medication. As maybe it will help however he said proprannol is used for anxiety but I don’t know if it’s been effective for me in this way yet .
I do agree tho it can’t be helping me , I am struggling to accept things mostly because your right it’s put a pause on my life and I can’t help but have this fear I’ll be stuck this way forever I know that’s irrational but I’ve never been unwell for such a long period of time .

I am doing mostly everything and anything to try to help though . In terms of the dose it all seems like a waiting game but I am trying to follow what I’m told . I know dr S is very good I found him from fellow dizzies so I know I’m lucky in that sense . One things for sure il never moan about much after all this !:grimacing::pray:t3:

Never in a million years would I think it possible to feel all these symptoms but yes relief is definatley something to look forward to . Interestingly enough dr S wasn’t a fan on proprananol but I have seen loads get success from it . I tolerate it pretty well so think I’ll aim to go higher on that as apparently 60mg isn’t overly high :grimacing: thank you for all your reassurance it’s reslly nice to speak to people who get it :heart:


I guess everyone react differently but lucky for them ay! :grimacing:

As for snow I even had that when I had episodic Vm and it went away inbetween . It kind of looks like things are shimmering . And if I look outside in the distance it looks like I’m looking through a gas fire if that makes sense .

My neuro actually said this confirms migraine as it’s a typical migraine symptoms lol go figure it’s my worst symptoms atm I think shimmering or sparkling is actually a better description . :grimacing:


Hey Elizabeth I’m so sorry your also suffering I had a flare up at 24 too although not chronic but still happened I do think it could be a change of hormones gotta love being a woman. I’ve also tried other meds with no relief and I know how it feels . I’m so sorry topirmate didn’t work , out of interest what are you trying next? Xx


Honestly when I could t move for 2 months with this I thought I was dying it sounds extreme but I really felt that bad . I then found this group and searched through and there wasn’t one symptoms I had that I couldn’t find here .

I still battle believing a migraine is 247 but hearing everyone else makes it easier to believe . I also hope you find some relief it isn’t an easy condition xx


Been there. Although, whilst I didn’t think I was dying, I was having a lot of suicidal thoughts … horrible time!! Anxiety at 11, stomach churning the whole time, complete mess. Going on medication really saved me.


I never even thought of that ! I get neck pain because I’m trying to balance makes a lot of sense and had it as a kid too! I lose track of all my wierd symptoms today I’ve had ghosting vision while reading on my computer and tingling all down my arms . I remember dr s said don’t panic about your symptoms definatley easier said then done :grimacing:


Good to know it isn’t just me i truly don’t think I would of made it through without my partner he’s been my rock through all of this


Mine didn’t know what to think … because nothing is visible. Hard for everyone.


Sorry didn’t see this post :grimacing: I also work from home so I am lucky in that respect too. Funny you mention eye floraters I get them all the time that and shimmering vision or sparkly it’s beyond bizarre.

I am exactly like you with the derealisation it goes up and down when I started nort I swore it made it lessen then it went back again it makes you feel like your going mad ! At one point when I got derealisation it felt like my arms weren’t connected to me and my face didn’t feel like mine it truly was the scariest thing that’s ever happened to me luckily that did pass . I heard s girl say she had similar to me and I asked dr s and he wasn’t even suprised .

I have heard topirmate is hard to tolerate but also that it can take a while to work it is so hard to tell what to stick out and what not . The thing is what I have realised is patience is needed with this and that where I have seen a therapist she has helped me accept this a lot it has helped me cope a lot more .

As for cbd are you in America ? I don’t think the stuff over here is great quality atleast I haven’t found one yet but my bf is American and he actually said he can get me some stuff from over there so if you have any recommdations I’d love to try some . I’ve avtuslly heard people getting relief from this with mav which would be great .


I think I’ve seen true colours from a lot of friend during this time that’s for sure my boyfriend didn’t really get it untill he saw how ill I was and then started researching now he knows more than me sometimes lol


Very true!


Im with you there Amylouise…i couldnt have coped without my partner either. Its hard enough for us MAVers to get our own heads around having migraine 24/7 never mind anyone else but he has educated himself about it as ive struggled almost 4 years with this.

Jo xxx


Thanks for the reply , so you also get the snow too? I agree your right it is annoying it’s just very ramped up when I’m outside if I look far away everything looks like it’s shimmering so it can be pretty u bearable . If I had something to take Away the derealisation tho I think I could cope with the snow . So Effexor helped this for you? I have heard good things about Effexor but my neuro said it’s. A hard drug to wean off so he wouldn’t put me on it :confused: