I haven’t been on groups for a while so please excuse my absence just has to take a break for my own mental head space .
However I have a question, I have been on venlafaxine for around 10 weeks now . I recently swapped to the extended release and went up to 75mg been around 12 days now.
I would say some of my symptoms have lessened and my threshold feels higher. For example I can do a lot more like go to a restaurant then a long drive and not get worse like before . So I assume this is the med .
However I still have surreal vision, things look warped and just off especially outside and I still feel like I’m walking around in a dream . It is better inside but I kinda feel like I have something stuffed in my head almost like cotton wool. This is for me the most debilitating symptoms as you know . I just wondered for those on this med , would you say I’m on the right track and that given more time and maybe going up more these symptoms will go away? I feel a bit deflated as figured this may have disappeared by now. I am due to speak to dr s Wednesday so will Ofcourse ask.
Just been feeling very down recently and like I am the only one that just isn’t getting better especially as it will be almost two years with this in October any help and hope welcome xxx
I am not on venlafaxine, I am on Nori and Gabapentin, but I have the exact same issue as you. Despite the fact that the dizziness has been reduced significantly I still have the brain fog, eyes feel fuzzy and general sense of imbalance.
I think this may be one of the last symptoms to go, as the medications seem to reduce the acute symptoms first. For me personally, it has not eliminated the migraines entirely but has instead dulled them to the point I can treat them with ibuprofen. I suspect the same is happening with the dizziness. It is still there, but it is muted now
I’ve discussed my symptom progression with my neuro, but not specifically the out of it feeling. He did tell me that the last thing to go is the dizziness or floating sensation while walking. This is because walking requires a lot of multi-sensory input so it is hard for our brains to compensate to movement.
For me by far the most annoying part is the eyes feeling like cotton. It tends to get worse while I’m working at a computer and yes my symptoms absolutely get worse outside and in busy places
Hi Amy Louise
The floaty drunk cotton wool head was my worst symptom. I too am on Venlafaxine ER - I started it in March at 12.5mg and increased by 12.5mg each week. When I got to 75mg that weird feeling started to improve and with each increase it has gotten better and better. I am currently at 125mg and while I am not completely better (I still have a lot of head pressure) the walking around in a dream state is way way better.
Keep going
Mav
Makes sense Interesting comment. Bipeds walking mechanism is so complex it isn’t at all understood. That’s why robots aren’t good at it.
In addition to the above very valid point, With MAV I think the entire vestibular system struggles so much there isn’t enough power/energy to go around and as almost everybody has their own Achilles heel somewhere - some bit of them that probably never has functioned 100% for some minor reason - everybody experiences that extra bit of a problem in relation to that which may account for the wide variation in symptoms and apparent intensity of same. Helen
. A different take I picked up on here recently posted by somebody else was that the individual symptoms aren’t so much ‘caused by’ something as they are the result of the brain’s inability to stop us experiencing all the sensations it is normally able to block out. Whichever way you look at it it’s all linked to ongoing sensory hypersensitivity.
Hi @Mav
Thanks so much for the reply !
So does it sound like I’m on the right track ? It’s just hard to tell if it’s helping because I rate everything by this floaty spaced out feeling and vision. However the other symptoms have gone down so I assume this must be the ven.
I just hope going up resolves the other symptoms .
Would you so it’s a slow progression? Really glad to hear ur doing well! Have you managed to have any normal days on 125?
A
That makes total sense thanks Helen. I had this symptoms for seconds as a kid always in busy places so it would make sense I guess what i battle with is why it has been 247 for so long it’s truly such a horrible feeling
I’ve had MAV for almost 6 years now. It is very frustrating as I haven’t gotten to the point where I am well enough to actually relapse. Of course I’ve improved a lot in that time frame, but I still have daily 24/7 dizziness, cotton eyes and general crappy feeling. Doom and gloom aside I am miles ahead of where I was when this first started and I am thankful for that
I have a feeling that a MAVer is someone who has a compromised vestibular system where there is a significant fluctuation in system response that is not linked to normal vestibular stimuli.
The brain struggles to perform all its ongoing correlations and you end up with sensations and neurological fallout that lie in the brain topping out its learning algorithm. It’s trying desperately to understand the relationship between the incoming information with outcomes but failing because whatever is affecting the vestibular system response is basically noise in the system. This noise is frustrating and corrupting the process of correlation.
But absolutely this would make it much more susceptible, aka sensitive, to complex situations which a healthy set-up would handle with aplomb, e.g. walking through a mall crowd with multiple flashing light sources.
I think a MAVer is someone who is actually witnessing the limits of what the brain is able to manage. It reveals us all to be miraculous machines, but ones which unfortunately can’t solve every problem of balance given extreme circumstances when the system is compromised too much and working at the edge of its practical envelope.
The solution is surely finding where the compromised element(s) is/are and fixing them.
Oh wow 6 years that is a long time ! In all that time have you ever had any normal days ? Did you ever have episodes or always chronic ? I feel mav is so different for so many of us . The whole illness truly confuses me .
I have not had a fully normal day in that time. It is maddeningly frustrating. It has always been chronic since it started. It is very confusing to me as well, but I know I am improving slowly over time so I am still hopeful!
I definitely get normal hours, and those hours are becoming more frequent which is nice. The problem is I work a high stress job sitting at a computer all day so I tend to be wiped by the end of the day
I haven’t stopped doing anything since this all started. I try and get to the gym or walk as much as possible. Recently I’ve been able to run on a treadmill for short periods. I do agree, the marshmallow floor sensation while walking is super annoying
No point in having any preconceived ideas with MAV. None at all. As I said above we each have our own Achilles heel. If you had that particular symptom as a child, that’s yours. I guess the longer you’ve had it the longer it may take.
Because it just is. Mine was occasional and episodic for well over a decade then, after one particular attack which seemed no different from its predecessors, well, not until the accompanying 24/7 dizziness just forgot to go away when the rest of the symptoms left, mine became chronic. In less than four months that day, the day Helen’s MAV went chronic, will be five years ago. MAV seems to run to its own set of rules. This year I’ve had probably four week- long periods when I’ve been fine, symptom free. I remember one three day period last ?September too, that was the first. They are great, those symptoms free days. But so far some symptoms soon return.
Oh don’t kid yourself. Course you don’t. Like all of us you want a full recovery. Perfectly natural but pretty difficult to achieve. I groan and curse every time my symptoms return. It wouldn’t be human not to. We all just want to be shot of it all. And the longer it drags on the worse it seems. Helen
Hi there
Yes it sounds like you are on the right track…it wasn’t a slow progression for me - I had failed so many meds I was determined to give this one a fair shot so I just kept increasing each week. As I got to the higher doses 82.5mg and above I would have a few days feeling worse and almost titrated down but stuck with it - I would say to myself if I am still feeling worse after 7 days I will drop down but thankfully it passed each time and I didn’t need to go down. In terms of having normal days at 125mg I will put it like this - when I am at home all day and dont do much I feel almost normal. When I increase my activity, go to shopping centers or spend too long in artificial light (like this morning I had a doc appt downtown and went into shopping center afterward - the lighting in Tesco set off the dizzy/floaty head) I start to feel floaty - it’s not as intense as before Ven and it dissipates quicker once I remove myself from that environment and close my eyes and sit for a while. I have tried to drive a few times but I still can’t do it - after a few mins I start to get floaty so my brain is still not able to coordinate all that is needed to be able to drive. Looking up is still a prob for me, just now I had to Hoover some bugs off the ceiling and each time I looked up and back my balance felt off. However I am on the right track with this med - I am way better than I was before I started this med in March. I remember every time I would go for a walk outdoors I would start to feel floatier after 8 mins (I timed it!), I would suddenly become very aware of the slopes in the path and I would have to watch my step - like when you are drunk and have to walk carefully. I would suddenly feel detached from my surroundings like I was in a parallel universe - this extra floatiness would only disappear after getting home and sitting with my eyes closed for about 15 mins. I rarely get this now when walking outdoors.
As mentioned before I still have constant head pressure - not sure if Ven will address this for me so perhaps I will need an additional med
Best of luck
Mav
Happy for you. Smashing detailed description there. I recognise a lot of that. Most particularly the slope reference. Comes as a surprise ‘discovering’ a ‘new’ slope on a path you’ve been walking for years! You’ll be able to add that in to your PD when you get that far. . Future comers will find it so helpful. Helen
just has to take a break for my own mental head space .
any help and hope welcome xxx
Is yours worse outside In busy places ?
