Hello MVERTIGO Family
I am directing many people from the Visual Snow group on Facebook that are suffering from 24/7 visual snow/persistent migraine aura like myself to Mvertigo. Many have suffered for your years without knowing whats going on with them. Some have dizziness, some don’t. Some have never had a migraine headache but have had visuals auras. Some do not believe that it is related to migraine. Please help them out as much as you can when you come across them.
Cheers
Nabeel
Thanks Nabeel, you know I had fluctuating visual snow for years before this dizziness hit me in July of this year. I’m almost 100% sure it’s all migraine aura/migraine linked.
Hi DL
is your VS your gone now or still there?
Visual snow is just not the squiggly lines. Its includes a whole lot more complex visual symptoms hence its got a separate name other than ocular or retinal migraine or migraine with aura. Its actually called visual snow syndrome or permanent migraine aura. You guys can google it to get more info and believe me you are all very lucky not to have this crap which I suffer from daily though I’m learning to adapt and move on with the help of prayers and cymbalta
It’s barely noticeable now, only at night. x
Throw me in the camp with Nabeel. I am one of the lucky ones where the actual Visual Snow does not bother me much, but the other symptoms that come along with the syndrome bother me every single day. I have been using this forum for 2 years now complaining about these visual symptoms and have yet to find too many people on here who suffer from these same problems. All of my visual phenomenon are CONSTANT. They do not come in waves or with migraine headaches. These symptoms are Blue Field Entoptic Phenomenon, Photophobia, Ghosting, Afterimages and Floaters. Walking around outside is a complete nightmare. One year prior to these visual symptoms, I lived a full year with symptoms that closely resembled Vestibular Neuritis (I have 91% vestibular loss in my right ear) and MAV. I used VRT and Nortrytaline to combat these symptoms, and once I began weening myself off the Nori, all the visuals began. I have no idea if coming off the drug caused these visual problems or if it is just a coincidence, but I have now lived with these visual dailies for two full years.
On top of the visuals, I still have the other “vestibular” and “migraine” type symptoms like brain fog, imbalance, fatigue, anxiety and some mild depression from dealing with all of this. I also must mention that all of these symptoms are daily, 24/7. They never wax and wane. Never come and go. I have tried the dieting and am very, very knowledgeable about migraines. I am currently on Celexa 30mgs and Topamax 100mgs. I had about 2 good weeks of clarity and optimism when I finally hit 100mgs of Topamax, but since then I am back to the same. I am seeing my Neuro again in early February to see what steps to take next. He is currently treating me for “migraine”, but I would not call him a specialist in the field. I think he is just taking the common steps for treating this bizarre syndrome. I was very unsure of diagnosing myself with migraines, but once I experienced my second Scintilating Scotoma (I have only had about 5 in the 3 years) I knew that migraine was the only culprit.
Luckily many people on this forum have found relief. It also seems that many doctors seem to understand MAV nowadays. Unfortunately, not too many people ever find relief for Visual Snow or Permanent Migraine Aura. No doctors seem to understand it at all. I have seen plenty of doctors and specialist and get nowhere. I have read very few success stories. our Facebook page has grown t0 500+ very, very quickly with people from all over the world, desperately seeking help. I thought the year I lived with just dizziness and ear problems was horrible, but now that I can’t enjoy a walk outside or concentrate when indoors under certain lighting, my life has deteriorated even more. Like I mentioned earlier, my vision isn’t even half as bad as many out there, so I can’t even imagine what other must feel like. Hopefully with some help from other knowledgeable people on here we will get some answers.
PS: I sincerely mean this not to be rude, but comparing some “spots” or random “floaters” you may see once in awhile or have maybe seen in the past is most likely nothing like what we are going through, so please try to keep those comments to a minimum. I understand the whole “misery loves company” aspect of those posts, but for people who are living with these conditions, it really doesn’t help. I personally would kill to have some random floaters for just minutes at a time once in awhile. On the other hand, if you ever did have a period where you did have static in your vision for a few weeks or months at a time, then that’s another story.
If anyone is interested in some of what we are talking about, here are some of the symptoms we live with on a constant, daily basis:
medpagetoday.com/MeetingCoverage/AAN/32416
evisualsnow.com/tag/visual-snow-symptoms/
I didn’t know what VS was. I’ll remove my post. Unreal responses tbh. We are all suffering here… I was not comparing. It was not a misery loves company deal in any sense of the form. I thought I was relating to their condition, not belittling it! And saying “if you had to suffer with what I do everyday” is mindblowing. We all have MAV here… in varying forms. I do feel for you but we are all disabled from this condition. I hope your neuro can help you combat the VS or that you find one that does in the near future. My Regards to you both
Here is a news story from one of our Facebook contributors!
Hey Wasp,
That comment was not directed at you in any way. I didn’t even really read your comment. No hard feelings. It was meant more for future posters, as people like us have been dealing with people trying to relate their conditions for years. It’s always welcomed, but I was simply pointing out that for the most part we do not suffer from typical “migraine aura”. I should know because as I mentioned I get the occasional Scotoma, which is scary, but thankfully short lasting.
I can also relate to the fact that we are all suffering, because as I also mentioned, I lived with just the typical Vestibular and MAV type symptoms alone for a full year before these visual ones, and those were awful enough. I also realize that there are people out there whose vision is way worse than mine. On the flip side, I also acknowledge that plenty of people, including most on this forum, have MAV and dizziness problems that are way worse than mine. I am still able to work and go to the gym and things like that. I don’t even get vertigo spells anymore! I know I am very fortunate and have improved vastly the last few years. That doesn’t mean I am not scared that my vision will not continue to get worse. That doesn’t mean I am not lonely with all these visual problems or frustrated with how stupid I feel because of this damn brain fog.
I apologize if my post offended you or anyone and came off as rude. It’s just that after all the eye doctors and specialists who pass us off as having specs or spots on the eyes, it gets frustrating. The last 6 months or so I have been on this Facebook page talking with these people about VS and trying to get them to understand Migraines better, mostly because of information I have learned on this forum. I still strongly believe that my problems started as Vestibular Neuritis and then morphed into a migraine disease, and it took me a long time to understand that. I mostly came to terms with this fact because of this forum. So I in no way want to belittle anyone on this forum. I understand that we are all suffering in our own way. This is the reason why I wanted to point out that if anyone comes here suffering from VS and is seeking some help and information about migraines, I hope that they are looked at as people who are truly suffering and looking for help for a serious problem, not just a small inconvenience.
We are all here to help out and get along and I hope together we can all continue to get better and help each other out. 
AWalkerPhoenix,
If you feel this strongly about your visual issues, why don’t you start your own support group online? I also didn’t appreciate your comments in response to another post that I made, where I was trying to relate to your symptoms. I explained that after starting a tricyclic antidepressant (Clomipramine), I experienced continuous visual snow for months. Now that I am on Nortriptiline, I have it in a less intense form. I did also try to relate to you and explain what an opthamologist told me, that it was a harmless side effect of the drug, that it was not hurting my eyes, and that perhaps drops and fish oil may help, as tricyclics can dry your eyes (as well as make you constipated) through their anticholinergic activity. In response to my post, where I was trying to sympathize with you, you were quite rude and basically told me that my response was obvious, ignorant, and frankly a waste of your time.
If you don’t want “non-sufferers” bothering you with our responses, I honestly think you should start your own forum.
By the way- while my visual snow isn’t that bad, my balance is so poor that I have to walk with a cane. I am in constant pain from limping and lurching around- my entire left side is in agony everyday from walking incorrectly. When I do things in the kitchen I have to grip onto the countertops for dear life to steady myself in order to do anything. I have to use bars in my shower because my balance is so bad I can’t climb into and out of the tub. I am cannot work and some days I can hardly leave my house I am so unsteady and in so much pain. Going out to run basic errands is a huge accomplishment for me and is very taxing. You stated that you are able to work and go to the gym. I would be careful the next time you imply that others aren’t suffering as much as you are- i.e. “I personally would kill to have some random floaters for just minutes at a time once in awhile.” You know what- I would personally kill to be able to work and go to the gym- hey, I would kill to be able to WALK UNASSISTED and to be able to household tasks without holding onto the nearest wall or counter so that I don’t sprain my ankles.
I wasn’t going to respond to your rude post in response to mine, but now I feel like I just have to say something. I really hope that you do decide to start your own online support group, so that you can chat with the “real” sufferers and not be bothered by the rest of us.
Guys
Please take it easy. I am sure its all a misunderstanding and nobody meant to hurt each other or be rude to each other. I will repeat my exact quote which I made a few weeks ago
“this forum is the best forum in the world”. It has helped me to be where I am today and I assure the rest of you newbies that it will help you too in a few weeks, months, years, but it will and you will all get well enough to manage this crap. i don’t need to lurk around here for support anymore but I still do only to guide and help others who are going through the bullshit which I went through at the beginning of the year cz i know that if I didn’t have support from people on this forum back then, I would have probably lost the plot. Its a horrible condition to deal with. If you read my previous posts, you will know what I mean. I sounded like my heart would burst out of my chest. Thats how anxious I was.
Lets forgive and forget and let this (my post) be the last post on this thread.
Cheers
Nabz
Sarahd,
I won’t even validate your post with a response. Try rereading what I wrote with a more positive attitude. I was simply trying to raise awareness for hundreds of thousands of people who are suffering. I had nothing but good intentions. I don’t feel I said anything rude. I went out of my way to point that many people have it worse that me, so I am clueless as to why you point out your suffering. We are all suffering. Waspcharmer and I have had some very meaningful conversations because she is trying to understand and learn something new. Sometimes its easier to throw stones than to extend an olive branch.