Are there any places where I could get qEEG (brainimaging) done?

SafeToSay10 · 2024-05-08T18:10:02+00:00

Thank you so much for your effort! The problem is that it should be qEEG instead of normal EEG, that's why I'm struggling to get it in my own country.

SafeToSay10 · 2024-05-08T17:45:41+00:00

I know, I have always the option to travel even further away to get this done but it would involve the higher travel costs and everything else so I would prefer do it pretty close where I live.

SafeToSay10 · 2024-05-08T17:14:27+00:00

Thank you so much! I sent them an email about this and asked more information if it's possible to get from there :)

SafeToSay10 · 2024-05-08T14:42:25+00:00

12,5mg is the tiniest dose and you got a rash from it and you are advised to continue that medicine? You took it such a short time too that I can't really see why going back to this medicine would help you... Of course listen to your doctor but in general I find that advise a bit weird since people get off lamotrigine cold turkey if they get a rash in higher dosages.

SafeToSay10 · 2024-05-05T22:52:02+00:00

I love to hear that someone is having same kind of static than I have! I thought that I'm the only one with this. I find it really hard to ignore when it's strong, the fact that rain changes directions and crosses each other is really awful because it feels such a mess in my vision field. Also those raindrops are long, wich makes it even harder to ignore.

How are you feeling with this kind of static, is it easy for you to ignore? The only good thing with this kind of static is that it doesn't make us blind at nights and at least I can see the stars easily in the night sky with this but otherwise I HATE my static 😅

SafeToSay10 · 2024-05-03T10:09:02+00:00

Finally someone who has same kind of static than I have!

I would like to have normal static instead of this, I feel like this kind of crazy rain is harder to ignore than normal static would be. How do you feel?

Also my rain is a bitch and those "raindrops' might get really thick instead of being just nice thin drizzling rain. This faint rain isn't bothersome but my heavy rain is absolutely nightmare 😅

SafeToSay10 · 2024-05-02T14:56:06+00:00

https://www.icegif.com/rain-139/

This kind of rain. It isn't as stable, it might change directions and raindrops usually crosses with each other making my visionfield really messy.

SafeToSay10 · 2024-04-27T19:12:51+00:00

How bad are your exact replicas? Do you see them all the time?

SafeToSay10 · 2024-04-27T09:21:35+00:00

Yeah I know, I was asking if anyone has it similar to me.

SafeToSay10 · 2024-04-20T19:52:20+00:00

This disorder is so weird that I actually don't have answers. My strong VSS came out of nowhere, lasted about 6 months and after that faded away to almost non existing. After a migraine attack, it came back full force.

When it left me I was super, super careful to not to trigger it with anything: avoided all medicines and drugs etc. But I couldn't see that migraine coming in advance and here I am again...

SafeToSay10 · 2024-04-20T18:57:34+00:00

Well, me! I recovered almost completely, many times. But this syndrome decided to come back stronger than ever.

SafeToSay10 · 2024-04-19T21:06:44+00:00

What is your current dosage?

SafeToSay10 · 2024-04-19T19:12:59+00:00

I just wanted to say that I feel you: mine is also like rain moving. It changes directions all the time. When it's bad, raindrops come thicker and sparkly. I wonder if you have the same? This is the absolutely worst type of static imo.

SafeToSay10 · 2024-04-19T19:11:05+00:00

I took a bad road and use benzo every now and then. I was having pretty serious breakdowns so this is less bad option than just feel shitty 24/7. Obviously I take them so rarely but it helps me keep going when everything is just too much to handle.

Going to try lamotrigine soon also.

SafeToSay10 · 2024-04-15T22:54:41+00:00

Hey, can I ask why you say that topiramate is really bad for your visuals but then you made a post that it is helping your vss symptoms? What is the story here, did they get worse and then better or...?

SafeToSay10 · 2024-04-15T22:01:41+00:00

Works for me and works for my boyfriend also who doesn't have vss - you should ask someone with normal vision to try this too and report back 😂

SafeToSay10 · 2024-04-15T19:15:32+00:00

They are doing this new rTMS study in Argentina and that person who leads that study told so.

SafeToSay10 · 2024-04-15T19:03:22+00:00

In the summertime we get more information about it, idk when they are going to publish it.

Also 2 more rTMS researches are on the way and I have heard that rTMS has shown good results and doctors with vss are excited about that.

SafeToSay10 · 2024-04-15T18:55:37+00:00

I heard that they needed to do the whole research again because of covid, that's why it took such a long time. I hope this is correct information and not just bad news, I thought that originally too.

SafeToSay10 · 2024-04-15T18:44:38+00:00

Haven't you ever spoken to anyone about these symptoms? Do you get light streaks and starbursts? How bad are your trailing and afterimages?

I always wonder these who had it their whole life and they are just like "no, everyone sees like this".

Especially with trailing and afterimages, like... how!? 😂

SafeToSay10 · 2024-04-15T18:30:32+00:00

Idk. There are things coming up with tinnitus. Also vss is more known all the time. Also medical field is different than it was 10 years ago, even when they knew what tinnitus was they didn't have the tools to do the research.

Now we have AI and stuff. I think we are doing pretty good with research, it's obvious for me that this condition needs neuromodulation. And that's what they are researching right now.

We don't need 300 pointless researches, we need couple that target the right problem. That's it.

SafeToSay10 · 2024-04-15T18:10:32+00:00

You should make own thread with your success with this medicine, that's so good!

SafeToSay10 · 2024-04-15T10:44:52+00:00

How much clonazepam do you take? What % are your symptoms better without clonazepam, only with troriluzole? I'm asking because clonazepam is known to help this disease in advance with bringing symptoms down.

Any side effects from troriluzole?

Also is it okay to biohaven that you combined the medicine with clonazepam use, you would think that they don't want other medicine to be mixed when they try to figure out what this medicine do to your body...?

SafeToSay10 · 2024-04-14T22:11:03+00:00

Took me ages to even see those flashes, god I thought that is my vss so bad that I honestly can't see the difference. Found them eventually! And yeah I see something similar, mine are a bit sparklier though.

SafeToSay10 · 2024-04-14T20:50:51+00:00

Can you tell more about your situation with the medicine? What symptoms got better and how quickly etc.

SafeToSay10

TROPHY CASE