So a few days ago I started on 75mgs of Topamax. 25 in the morning, 50 at night. I haven’t really had any bad side effects, but no positive ones yet.I also feel like the Blue Field Entoptic Phenomenon has increased the last few weeks, and I am not sure if it is because I am going up on my Topamax, or if it is because I am focusing on it so much more. It is getting harder and harder to watch anything bright on TV, like a cartoon or commercials with white backgrounds, as I see sparks shooting out everywhere. I understand that the proper dose for Migraines is 100mgs, and even then I might need to stick with that dose for a good 3 months or so, but I was really hoping to at least see some improvement by now. It is still hard to walk outside and not feel uncomfortable in sunlight and see sparks and snow shooting all over the place on bright surfaces. I just wish I would start seeing some improvements by now. I still plan to stick with the Topamax, but it is so damn hard to stay positive. I don’t want to knock on anyone else’s symptoms, but I wish I was just dealing with dizziness, or at least intermittent problems, and not these daily visual which are complete torture. On top of that, migraines is just the best guess for my problems, as no one truly knows what my problem is.
Awalker,
Hang in there! I know exactly how you are feeling and at 75 mg I actually called my doctor and said I’m done, I want off this medication, it’s not working. I felt awful at that dose, it wasnt doing shit for me and all I did was lay around and watch lifetime movies and cry. I hated my life and seriously no one could understand what was going on. I couldnt understand why this medication wasnt working just a little bit and why I had to wait so freaking long to get my life back. But I had not choice, I had to wait it out. So I cried some more, and watched some more lifetime tv network lol… but I’m telling you from the bottom of my heart, that once I got to 100 mg, I noticed a difference. I still am not 100%. But, I am so much better than what I was three months ago. I can work, I can drivem play with my son, enjoy life. I too suffer from visual symptoms. I have horrible light sensitivity. At 75 mg, I saw no improvement at all for the visuals. Right now, I just increased my dose to 150 mg. I am on my way to 200 mg. Fingers crossed to that! My visual symptoms suck and they still kinda suck now, but without the dizziness and headaches being so bad, its easier to deal with. However, as I increase my dosages, I always notice improvements with the computer usage, which has always been a nightmare for me. Hang in there… we are alll in this together… its going to take some time remember… it may take three months from the time you get to 100 mg to work. I know it sucks … but dont give up, youve come so far!!!
All the best,
Lisa
I’m not giving up, it just seems like the odds are stacked against me. It seems like most people with these problems never get any relief. If I just had the light sensitivity, it would be one thing, but all these other problems just seem so real and long term it’s hard to believe they will get better. Also, I really like my Neuro, but it’s not like he is a migraine specialist or really understands my visuals, as most doctors do not. He is simply prescribing the Topamax because that is the go-to drug for migraines and that is the only answer for what I have. On the other hand, I probably would have tried this drug anyway. he told me to call him when I get up to 100mgs, but I figure I need to stay there for at least 3 months or so before I even try to go up any more. I just wish there were more successful reports out there for people in my situation…but, I also think most people give up on Topamax, or most drugs in general, after only a few days or weeks who have this condition. Either way I am sticking with it, just getting very depressed. I cannot just “ignore” these problems…
Aaron plz do not get depressed. There r plenty of anticonvulsants out there u can try if the topamax fails. There r a no. Of ppl in the VS group on Facebook who have had some success with keppra.then u have valproate, lamictal, lyrica, gabapentin, neurontin etc. But considering u have MAV along with your BFP THE first line treatment is in fact topamax. So u r going on right path. Personally I think 2 months on 100mg is enough to give u some idea and u shud bump up if u don’t see any improvement by then. U have room to go much higher so why not? It’s good that u r not facing any side effects. I for one could not tolerate it for more than 9 days and quit. Keep your spirits up my friend.
I am in this for the long haul, but it is depressing living through it, plus I always worry about coming off drugs. All my visuals started when I came off of Nortriptyline, so I was worried to even start a new one. I have no idea if the Nort in fact started these problems, but it will always be in the back of my mind. I again wish there was a specialist out there who really knew this stuff rather than guessing, but at least I am trying something other than waiting around.
I am on day 5 of 75mgs of Topamax. My visuals still feels worse, and overall I feel like shit. I understand now why some people with these visual problems freak out and say their visuals get worse on certain drugs. I understand that some things can get worse before they get better, but my fear is that these problems will only get worse and not improve. I am scared to make anything worse. Damn I feel like shit.
I think it’s easy to say that dizziness would be easier to handle, if you’ve never experienced it, but I promise it’s not!!! I’ve lost everything due to my migraines… Head pain, vertigo with nauseau, disorientation, muscle tension from shoulders up… And it took my job, social life, everything. I can’t do crap but hope and wish for a cure. Shoot, even a band aid!!!
I’m sorry you’re going through this torment, too! I often think how I’d rather have this or that, but in reality, you really don’t know unless you’ve been there! If you could, I’m sure it wouldn’t be such a battle for us to find understanding and acceptance from friends, family, coworkers, and even strangers. Hang in there with this drug, you’re already half way there!
— Begin quote from ____
It seems like most people with these problems never get any relief.
— End quote
Not exactly what we wanna hear around here!! :oops: So I’d like to counteract this but instilling my own opinion that you know what, maybe there isn’t a 100% cure, but I believe we can all get to 95% by MANAGING this illness on an ongoing basis. Managing it leads to relief. And if that relief exists 95% of the time, then I’ll take that as I’m sure others will.
Maybe you can look for a different Neuro- someone who actually specializes in MAV or a neuro-opthamologist if you believe you’re problems are vision based.
However, I would like to let you know that my vision problems have definately started to reduce since I went from 50-mg of Topirimate to 75mg (however, that’s slightly counteracted by the fact that I can only keep my eyelids open for half the day due to the sleepiness side effect 
)
First of all, Candikane, I lived with the dizziness for over a year, so I know it well. The dizziness is gone now. It can be managed and overcome. When it was there, it came and went. The daily visual stuff I have is all day, every day. No escape.
I have seen multiple Neuro’s and Neuroopths. All eye doctors say my eyes are fine, and I agree with them. My problem is for sure Neuro based. I am on my 4th Neuro now. He at least agrees with me on the migraine DX, but you are right, I don’t think migraines is his specialty, although he seems to know about them and says he has treated them in the past. I just don’t think he has treated too many with my specific eye problems, but by judging from the people I talk to with the same problems, that is not uncommon. Every doctor I bring them up to seems to be a little clueless. It is hard to find one that knows a lot about Visual Snow Syndrome. At the same time, it is usually drug trial, so I am probably doing the best I can.
I am just starting my second week of 75mgs of Topamax. Will probably stay here for about a month before going up to 100mg. It actually doesn’t make me that tired. I still don’t notice too many side effects, probably because I have felt like shit for almost 3 years now! I sometimes feel like my visuals are getting a little worse, which could be a good thing if it means the meds are working. It could also mean my anxiety is riding high and I am thinking about them too much. I have been really patient with this drug that I didn’t even want to try, so I just hope I get so benefit sooner or later.
Missmoss,
What were your visual problems? How long were you on 75 before you saw a difference? Were you worse before better on that dose?
— Begin quote from “awalkerphoenix”
Missmoss,
What were your visual problems? How long were you on 75 before you saw a difference? Were you worse before better on that dose?
— End quote
Not as wide as yours but;
- Everything feels like it’s in HD… Too much info to take in. Very over whelming. 24/7. I woke up like this one day roughly 3 years ago.
- Blurry vision on and off
- Cannot stand flourscent lighting. Being in a shopping centre more than 45mins puts me out for a week.
- If I look at something far away, it feels as though there are big blurry blobs between the thing, and my eyes.
- If I look at something mid way far away, it looks as though there are blurry blobs and also hungdres of tiny dots firing off in all directions.
I’ve been on 50mg of Topirimate for about 9 months I think.
I’ve been on 75mg of Topirimate for about 3 weeks.
I did not notice any improvement in the visuals on 50mg at all.
I noticed a difference in the visuals after a week on 75mg. Each symptom I described above is less. And the general dizziness is less too. I may be being too optimistic, this may be a coincidence and I may crash again, but this looks like a good start especially considering I’m currently suffering from ‘that time of the month’ so I usually can’t walk in a straight line by now.
I’m looking forward to moving up to 100mg as long as I can kick the sedation.
My question to you is…
What’s your experience under different types of lighting? Do you notice much change in symptoms based on different environments? - I wonder could your visual problems be being aggravated by one particular environment, which at least wouldn’t be helping your situation?
Can you see a doctor who has experience of dealing with MAV specifically. He would know that visual issues can be an affect of this due to the fact that migraine is a problem with the brain’s sensory perceptions- obviously sight is a sense…
Look forward to hearing back from you
I just read this post and remember an article I read in the Daily Mail a while ago about a girl with something similar going on. Here is the link:
dailymail.co.uk/health/artic … owing.html
It seems it is called Persistent Migraine Aura (PMA) and I assume from reading the article, although it doesn’t specifically say, that they would attempt to treat it using the usual migraine preventatives.
I couldn’t find any updates for this girl but do keep trying the different meds and hopefully one will target this particular symptom x
Interesting article that… When I am in a bad way, I can’t see my nose either… It sounds ridiculous but I can’t focus on my face as a whole.
I told this to the ENT I saw when first hit with MAV and I believe this was one of the main symptoms that led him to believe this was migraine related.
Be good to find out who this girls doctor is so AWalker can contact him perhaps.
Yes I am not sure how to go about getting any further info apart from maybe emailing the Daily Mail. Fortunately my migraine auras have only been short lived. It says in the article that only ‘20 other people are known to suffer permanently from the condition’ however I suspect this figure is a lot higher in reality x
Thanks for the article. As you can see, what I am dealing with seems different than most people on this forum. Luckily my symptoms are nowhere near as bad a the young lady mentioned in this article, but I too am treating my problems as PMA. I also feel that drug trials at this point is my only option. Luckily my current Neuro feels my problem is migraines, but I am not sure how highly trained he is in this field. Either way, I have to give Topamax a few more months to see if it can offer me any help. Although I have had a few scotomas in the last few years, something that points to migraines, I have not had any other problems that seem to point to classic migraine symptoms. This being said, I still think that PMA makes the most sense.
Where are you at with the Topamax and can you answer me about the lighting?
Just been reading through this thread and I hope you don’t mind me coming in. Tell me to go if you like 
have you been to see an optician or rather an orthoptIst in particular. I came across an article about vertical heterophoria which if you have it gives symptoms similar to MAV. It is an invisible squint which can be corrected with prisms. I saw my optician and explained this but I think he thought I’d gone mad. If you find a good one its worth a test. I will try and find the article on line and send you the link. Angela x
I am at 75mgs for a week now. No bad side effects. Nothing too positive yet though. As far as lighting, some things like indoor lighting has maybe improved, but outdoors is still troublesome with things like floaters and seeing snow in the sky (BFEP). Until these things lessen, my anxiety with these symptoms will continue to bother me.
As far as other causes for these symptoms, I think they are pretty far fetched. Everyone has a theory, but I feel strongly that things like diet, infections or rare diseases are causing these problems. Right now, migraines and PMA seem to make the most sense, especially since I lived a year with VN before these visual symptoms all began.
— Begin quote from “awalkerphoenix”
I am at 75mgs for a week now. No bad side effects. Nothing too positive yet though. As far as lighting, some things like indoor lighting has maybe improved, but outdoors is still troublesome with things like floaters and seeing snow in the sky (BFEP). Until these things lessen, my anxiety with these symptoms will continue to bother me.
As far as other causes for these symptoms, I think they are pretty far fetched. Everyone has a theory, but I feel strongly that things like diet, infections or rare diseases are causing these problems. Right now, migraines and PMA seem to make the most sense, especially since I lived a year with VN before these visual symptoms all began.
— End quote
I’d say that if indoor lighting has improved ‘maybe’ and you’ve only been on it a week, then actually, that’s quite positive!
Did you mean to say you feel strongly that things like diet, infections and diseaseses are NOT causing these problems?
I know this is perhaps controversial but have you ever thought that perhaps you have never actually had VN?? In fact it has always been migraine?? I’m not sure if that actually would make any difference to the treatment and road to recovery but it’s just a thought.
Oh yea, I agree, at this point it doesn’t really matter. It is possible that it was always migraine or MAV…but, when my dizziness started, I was having very acute quick spins about once a week, and these only last for a few months and then went away. I never had any symptoms that seemed to point to MAV or migraines. On top of that, I had vestibular testing done three times, and all three times it showed a very, very large vestibular loss in my right ear. Usually people with true MAV do not have this loss. Of course it is possible that MAV caused this loss. It is also possible that VN created a constant migraine episode, leaving my brain extra sensitive. I lived with only balance problems and brain fog for a year when my dizzy spells hit which is common in VN. My symptoms were also 24/7, and not episodic, which to me showed I had damage in my ear. Vestibular Therapy also seemed to help a lot with my balance and dizzy problems. My visual and more migraine type symptoms started about a year later. I know it is very common for MAV or migraines to come from VN or labs, which I think moderator Scott had happen to him.
Either way, it doesn’t really matter now. The visual stuff should have nothing to do with inner ear problems, so I am assuming it has to do with migraines. I just pray I can get some relief from meds at this point.