The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

Normal vision?


Thanks Eric it’s reassuring to hear it took time , I think for me the longer something goes on the more the fear sets in, like omg how can it last this long and if it lasts this long when or is it going to go away! Totally irrational thinking but we’ve all been there !


Think that’s a very smart way to do it james , I can’t wait for the day I don’t have to take drugs although I accept for now I need them


Now there you sound just like me! Photophobia is so migraine typical as to be almost diagnostic I understand but we don’t really see it mentioned that much on here so I’ve sometimes wondered how many people do experience photophobia. Fewer I suspect than experience most other symptoms, Visual Vertigo seems far more common. As you say trying to live with photophobia is particularly challenging. So much easier when it goes away. Hope the Ami soon really kicks in for you. It’s one of the ones that seems to work quicker, within a month I’ve read so hopefully you haven’t too much longer to wait now. Helen


I have to admit thats what Venlafaxine has helped me with the most…outdoor visual vertigo.


That’s not surprising because Dr Hain singles it out specifically for Visual Vertigo on his site. And, also, in relation to ‘ladies of a certain age’. I’ll find quotes, and try to post them.

In his page on Visual Dependence, he states

‘Venlafaxine (Effexor) is often a useful medication in this context, as it often reduces sensory hypersensitivity. By allowing people to “focus” it may improve visual vertigo’.

Elsewhere he mentions it’s useful for reducing hot flushes and also states

’ We find it is especially effective in patients whose migraines involve sensory amplification’.

And, from comments we’ve received on here, he certainly seems to be correct. And his website is such a fantastic source for MAV sufferers as well. He’d get my vote any time! Helen


That would be fab Helen👍


Well, I am definitely not at 80-100% but for me, visual disturbances have diminished greatly since beginning Effexor XR. It seems to be quite effective for that. The floatiness/drunk feeling while outside and walking has also diminished. Headaches, body aches, and fatigue are a bigger issue for me nowadays, all part of the migraine system, but Effexor XR has definitely turned down the dial on the more “vestibular” aspects of this condition.

Wishing you safe travels and an enjoyable time away. You deserve a break. (Venice, CA, used to be one of my favourite places to visit.)


Really jo?! I’m gonna ask dr s for it when I see him in December


Thanks so much @lsengara that’s amazing it’s helped with that as this is my worst symtoms ! Il def ask dr s about it when I c him! I wish I wasn’t so scared of flying but praying it goes better than expected :pray:t3:


Yes Amy…i dont feel as disconnected around traffic whilst crossing the road…that sort of visual stuff. Im still off balance and have daily spells of dizziness though…i think these may be last to go. Im getting more Botox 7th Dec that is my silver bullet for Daily Chronic Headache…its saved my sanity.


It’s interesting how doctors seem to have different approaches. My new neurologist, whom I saw yesterday, evidently rarely/never recommends Effexor XR. I asked for it myself from my GP when nortriptyline wasn’t giving me great results. For some symptoms, it seems very helpful.

I need to determine what to do or try for the headache aspect of the migraine, since that is the most difficult for me now. Botox is very expensive in Canada, though I would like to pursue it. Maybe I’ll ask for it for Christmas.


It has gave me massive relief and if i had to save and scrape to pay for it i would. Im just soooo lucky to get it on NHS. Like you im seeing improvements with visual issues on Effexor


Pizotifen? Not sure whether you can take it with Nori though. It’s the only one specifically designed for migraine headache prevention. Just read it should work within four weeks!


I have exactly the same experience.


Please let us know if you do try botox. I’m thinking about it, too.


That’s so amazing jo it really seems Effexor is a magic ballet hopefully dr s adds something in when I c him next untill then il just have to deal with it :grimacing::sob:


Atleast you have one half of the battle down :slight_smile: Botox I’ve heard does wonders but it’s hard to get here too! I wonder why Effexor isn’t given ? So odd


Hi Helen, definitely one of my most challenging symptoms. My Ophthalmologist is the one who enlightened (no pun intended) me to “photophobia and vestibular Migraine”. I didn’t know anything about either from my ENT or primary physician, although they confirmed his finding. If that symptom would ease, life would get a lot better for me! I have high hopes for the Ami… today is Day 7! Hoping and praying!


Providing you can tolerate it to get to a sufficiently high level I’d think you are on a winner because Ami is the drug of choice for photophobia of Kathleen Digre who’s a US specialist on Photophobia, probably World Renown specialist. I’ve researched it considerably. Check her papers on photophobia out on the internet. You’ll see.