It's been a while

 I can't believe how long it's been. I know over the years I've had some of you contact me for updates as well as comments looking for updates and I must confess - I turned my attention towards living instead of dwelling on symptoms. However, due to a recent increase in migraines and visual symptoms I felt I should come on here and update those who are seeking help.

My story is a long one and I suggest reading past posts to get caught up. The condenced version of my story is that I've had some variant of migraine my whole life. It's suspected that it was due to a head injury when I was a child. I had a condition for as long as I've known - Allodynia. Any time my parents would pat me on my head it would send searing pain throughout it. They never questioned it.... never sent me to a doctor for it. I just lived with it and every once in a while they'd forget about it and it would happen again. I also dealt with mysterious stomach pains - which I later found out to be a form of juvenile migraine.

Fast foward to the year 2008 - I had just gotten a new apartment and my, then, BF was moving from MI to FL to live with me. It seemed within the first couple of days I started having palinopsia. I also had issues with light sensitivity, halos, after images, etc. I ended up getting pregnant and the shit hit the fan after our son was born. The migraines were daily and soon after came the visual snow - static in my whole field of vision. Next came something called akinetopsia - everything in my peripheral vision looked choppy during movement. I was living in hell and this was 24/7. My only relief was sitting in my home watching tv. I didn't have the ability to stay home and so I worked for quite a few years with this condition. I began experiencing daily dizziness on top of the visual symptoms - as well as depersonalization. I felt as if I were on drugs and I hadn't done any drugs - let alone drank. 

I was placed on Verapamil which immediately helped with the migraines. This in turn decreased the afterimages and trailing vision for me. It wasn't completely gone, but it was manageable. I still dealt with static and the choppy peripheral vision - as well as some dizziness.

I decided it was time to be proactive about my health. At this point it was 2016... I spent 8 years with these symptoms. I had seen every doctor under the sun. I had been poked and proded too many times to count and I was done. I decided to accept the diagnosis of migraine and had been hearing about a migraine diet book. Heal Your Headache by Dr. David Buchholz. I figured I had done everything else and while I was skeptical I honestly had nothing to lose. I followed the diet with very few slip ups. I first started noticing the my dizziness was abating. I would only have minor issues right before my period started, but nothing daily like it had been for months. My migraines were becoming less frequent. I started noticing that the static wasn't as bad and the afterimages were almost gone. I was still dealing with the choppy vision, trails and depersonaliztion. 

I started doing a lot of research about the choppy vision because this seemed to be a very rare symptom amongst those who get Visual Snow. I had found some research articles on it that mentioned a doctor in the UK. I decided to email him and ask him about the rare symptom and if he had any opinions on it. He immediately told me I needed to get a MEG scan done. He said it's a more precise scan and penetrates deeper than an EEG. I had already had EEG's done and they never found anything. So, I went to my neurologist with my new found information and he ordered the scan to be done. During this time of waiting for the appointment I was also learning about a medicine called LDN (Low Dose Naltrexone). It's said to help with inflammation in the body. My neuro and I suspected neuro inflammation as it's the culprit to a lot of health conditions in the body. There isn't a lot of research or funding behind this medicine and it's really cheap to obtain. I read lots of articles, joined a facebook group and heard A LOT of positive stories about it. So my neuro wrote me a script and I got some from a compounding pharmacy. I immediately started using the medicine. I didn't really notice muchat first with the medicine..... and then I did - within a few months I started feeling REAL. Happiness... HOPE. I hadn't felt like that for a very long time. I decided to leave my husband during this time as the relationship wasn't fruitful for either of us. This was one of the best decisions I've ever made ( aside from having my son and starting medication). 

I was even able to drive 2 hours away for my MEG scan. That was my AH HA moment. I hadn't been able to do that in a very long time. I even went out by myself to an ARCADE that had tons of flashing lights. I was so proud of myself. Something was changing. 

I had the scan done and within a few days my doctor called me in for the results. I had a rare form of Right Temporal Lobe Epilepsy. He suggested I start Lamotrigine (Which I had already researched for the depersonalization). It sounded like the best medicine for me all around. I started very low on the medicine - 1/2 of a 25mg a day. I did this for the longest time. That little dose along with my verapamil and LDN gave me my life back. Soon the visual stuff started going away. I didn't really notice anything anymore - not that I went looking for it - either way they just weren't there. I was able to travel to Savannah and Tennessee more than once. I could drive at night with zero issue. I was back. I was 100% from January 2017 to December 2021. 

This month, December 2021, I had a horrible migraine right before my period started. This migraine lasted days and brought back all of my symptoms. It left me racing for answers as to why. The panic set in and I immediately started getting the depersonalization and panic attacks. The anxiety was continuous, as well as the migraine. I feared the worst. I have a promising career, a wonderful boyfriend, home being built, son is in great health. I have the life I've always wanted and now these symptoms and the mysterious illness I left behind in 2016 is back. 

I went in to see my neuro and we discussed a plan. I realized I hadn't been consistent with my LDN for months. I kept running out and not refilling in time so I'd take less of the dose to make it last longer. I also had still been on a baby dose of lamotrigine. I have my LDN refilled and I am going to keep on it. I have already started the migraine diet again and I have increased the lamotrigine. I am just a few days into the increase and the anxiety is gone as well as the depersonalization. Everything else is still there, but not as bad. I think the main thing to note is back in 2016 my goal wasn't to get rid of the symptoms. I knew that wasn't possible. My goal was to find a way to live and enjoy life while having the symptoms. The symptoms going away was unexpected and quite a miracle. That is my only bit of hope. They had gone away for me once before so there is a HUGE chance that they will go away again... or decrease a bit. Either way I am holding on to my faith and trust that I will once again be able to enjoy life fully with or without these symptoms. I have such a wonderful supporting boyfriend - he is a God send. 

I will not be updating this blog anymore. My hope is to beat this again and one day write a book - I have way more to talk about than this illness. 

My advice to anyone reading this who is panicking and searching all over the internet for the worst outcomes is to STOP. Get off the message boards and Facebook groups. Do not identify as RARE and Untreatable. YOU are an individual and different from everyone else. Visual Snow is a cluster of symptoms. Just as headpain is a symptom of migraine or a headache. I know that taking my medicine and following a migraine diet will help with my migraine pain.... so can treating the other things that may be causing you Visual Snow that you aren't aware of. For me it's inflammation and epilepsy. I say this with 100% confidence. I decided to treat myself for inflammation and epilepsy. Remember though - I was starting to get better even before I started taking the lamotrigine. I was treating myself for inflammation first. I believe this brought down my trigger threshold. My brain was on fire. And the one thing I felt this past week was like my brain was on fire. 

Pray, hold on to faith - even if you don't believe, trust. I wouldn't be where I am today without faith and trust that anything is possible. Don't give up. When you feel the anxiety coming on tell yourself that you're going to fight - but you're also going to learn how to accept. Let go of the control. Let go of the what if's. Fake it until you make it and I promise you, you'll get there. 

If you're reading this, I'm praying for you. You will get through this! Please take care of yourself. <3

Update.... still getting no where

It's been a while since I last posted.... frankly there really isn't anything to update on. I am still facing the same issues and now my vision is even worse. I feel like I have been tossed around and forgotten by the medical field. I have seen more doctors than probably a household would in their lifetime. My last neurologist tried me on Lamotrigine and when I told him it was making my ears ring he told me it wasn't from the medication. However, when I stopped the Lamotrigine.... the ringing stopped too (went back to normal ringing for me).

I have a new Neurologist (actually one I visited in the beginning, but left because I didn't like his office staff). He still very much feels like this is all related to my thyroid condition Graves' disease and the high antibodies it is producing. I guess thyroid antibodies (and antibodies in general) can attack even more than just the organ (organs) they are attacking. I really don't know how to explain this so I will leave it at that.

My recent blood work has shown that my ALT is elevated and it was elevated earlier this year too, which my endocrinologist failed to mention. So I am showing signs of a fatty liver without being an alcoholic and without being over weight. It's like my damn body is just slowly shutting down and I can not do anything about it.

I am seriously thinking about going to Mayo clinic, but I have no idea what they will find... most likely nothing and it will all be just a waste of time.

My vision is getting so bad that watching any type of movement is bothering me. It's like my peripheral vision is getting hung up on my central vision. WHY THE HELL IS THERE NOTHING LIKE THIS IN MEDICAL LITERATURE????? I don't understand this. Why am I having to educate my doctors too and I don't have a fucking medical degree, It's really bringing me down. I am getting close to my quitting point and that scares me because I always said I would never give up.....

Things that I am trying to look into further-

Reducing my thyroid antibodies to see if that helps at all by -
Taking selenium to reduce antibodies or
Taking LDN (Low Dose Naltrxone) to reduce antibodies or
Removing my thyroid to reduce antibodies

Once antibodies are done I want to retest for Lyme as my neuro thinks my high thyroid antibodies are cross-reacting with the lyme tests.

Testing Anti  NAE antibodies to see if I have Hashimoto's Encephalopathy

Try other migraine preventatives to see if I get relief

I am also trying very hard to stay on an autoimmune diet to see if that helps me at all (I've failed miserably at this diet because I already stay away from so many other foods).

So this is where I am.... I never in million years thought this is where my life would be.... at a stand still. I really pray that one day I will post a happy ending on this page and be able to help others to not give up.

A day in the life of Visual Snow

This morning I woke up... I enjoyed the few seconds of silence before my brain decided to turn up the volume on my tinnitus. My tinnitus sounds very similar to that of a far away tea kettle screaming on a hot stove begging to be taken off. My first thought is "It's still there!"

I blink my eyes several times to focus on getting into the bathroom. If it's too dark I have a hard time due to an off balanced sensation I often get.

I jump in the shower and try not to focus on the tiles in my shower which appear to be flashing when I move my head. This is very similar to a light being turned off and on very quickly. The tiles also shimmer and shake ever so slightly. 

After I get dressed I go into my sons room to wake him up for school. I make my way to his bed while navigating through a dimly lit room and a visual field full of static. This is very similar to an old analog television screen having bad reception. My eyes make brief contact with a sliver of light shining through my sons window. I am then left with an afterimage of that light (a vertical line appearing everywhere I look for several seconds). 

After my son is dressed I get into my car to drive him to school. I try and focus as hard as I can on one object as everything in my peripheral vision appears slightly choppy. It's basically like looking at a moving image behind an oscillating fan. The medical term for this symptom is conspicuous akinetopsia. You are more likely to get into a plane crash than getting that particular symptom. I can still drive and I can see all movement, however movement in my peripheral vision is not as fluid as movement in my central vision. The anxiety that this causes swells up inside of me. Some days I fight back tears while my son is in the car because it terrifies me to think about my future. I sometimes glance at people in the cars next to me. Some with smiles on their faces enjoying life. Others upset over traffic as if it were the worst part of their day. I immediately become angry and jealous over my situation. I try my best to overcome this by positive thinking, but it's hard. I have had this condition for over 7 years and though we've located the areas of the brain that is causing these symptoms, we still have no treatment. In order to find a treatment, we need more medical studies. In order to get these medical studies done, we need funding. 

I have been on the other side of this illness. I have been the person smiling in the car enjoying life and I have been the person screaming at others in traffic. I never thought about donating to any cause because it didn't pertain to me. Infact I just didn't really care because I had too much going on in my own life. I understand this thinking. But we need to change this type of thinking. There are so many people out there struggling with different conditions and they need help as well. 

Please consider donating to help continue studies on Visual Snow so that one day I might be able to see normally and enjoy my life once again as well as countless others.

www.eyeonvision.org

www.gofundme.com/visual-snow

So confused

I usually don't get this down in the dumps anymore.... I mean sometimes I do, but usually my husband is here to console me or I just kind of suck it up and move on. My husband isn't here at the moment and I am just as blue as one can be. In light of the recent tinnitus stuff and me tapering off the lamotrigine I just don't know what to do anymore. Part of me says to give it another go and just see if the tinnitus happens again and if so then discontinue it and move on. BUT.... I am just facing the reality of this disorder.... there is NO cure! If I get even a little bit better with a certain medicine it's by chance. I am just feeling really down about my future. I can't look ahead to anything because I don't know where I will be then in terms of progression of this illness. Part of me feels like I would be better off not being here... I know that isn't rational and I would never hurt myself... it's just my broken brain. I can't help but look around me at all of the horrible people in this world who have no issues and here I am trying my hardest to function and wouldn't hurt a fly.... I just don't get it.


The brain is still a mysterious organ for us.... I just pray that soon there is an answer for me and a treatment....

Discontinuing Lamotrigine

So about 3 weeks ago I started the lamotrigine. I had a lot of anxiety over it due to the rash it can give you, Steven Johnson. The first few days I experienced itching and tiredness. Then around the fourth day, a few hours after taking the morning dose of 12.5mg (25mg split in 1/2) I would get an increase in energy. This lasted for the first two weeks. During the three weeks on it I noticed my mild tinnitus was getting louder. Last week I woke up in the middle of the night to my ear screaming. I immediately had a reaction of anxiety and once I calmed down I was able to fall back asleep. The loud tinnitus lasted for about three days and then seemed to calm down to a less noticeable ringing (louder than my normal though). I wasn't too sure what caused the initial ringing so I just passed it off as an isolated incident. Then last night the same thing happened. I woke up around 4am to my right ear screaming so loud. Again the anxiety hit, but I talked myself out of it. I did pull up Doctor Google and found that it's a common side effect of the Lamotrigine for some and for some it remains permanent even after discontinuing the medication. I did see my doctor two days ago, but failed to mention the tinnitus even though it had happened a week earlier. I did tell him about the itching and he reassured me that I would not experience any side effects on such a low dose and that it was just anxiety. I cried in my car that day because he made me feel so stupid. Any suggestion I made about possible treatments were turned down. Anyways, he told me to increase the med which I was going to do yesterday. I am glad I didn't, because that was the night of the 2nd tinnitus episode.

 I always feel worse at night and my only guess is because the drug's plasma concentrations are thinning and my body wants more medicine. I know that sounds crazy, but I am VERY sensitive to MOST medicines. Usually migraine patients are and it isn't just an excuse. The faster the medical community listens to their patients saying this - the easier patient-doctor communication and trust will be. Doctors like to put you on a medication that they have faith in because they have seen it work. Vestibular Migraine patients however (usually on their 5th+ medication trial) are scared about side effects.. usually worsening of their symptoms. Doctors become frustrated because we want to take it as slow as possible. I was told my appointment was a waste because I was still taking such a low dose. To me it wasn't a waste because I was going there for reassurance. It became a waste once he said that to me though. It appeared that my last appointment was a waste as well and so were the 2 months that I went without seeing him in between visits because I could have spent that time searching for a more understanding and compassionate doctor.

So here I sit with a little less than 12.5 mg of lamotrigine wearing off in my system and a high pitched- low-level hissing in my right ear. Every once in a while a movement will throw me off balance, but I recalibrate myself. I begin to feel sorry for myself as well, but I try to think positive. It's hard to make plans with anyone because I have no idea what tomorrow brings for me. If I wake up dizzy in the middle of the night, that usually indicated that I will be extremely off balanced in the morning which ruins my day. I hear stories of some people moving on with life and just living with the dizziness. I can't.... I absolutely can not! I am determined to figure out what the hell is going on with me and fix it!! I refuse to take this lightly. There is no reason why I would wake up one morning and my world be changed. Something happened and it has a solution. I just need to find a doctor who is willing to work with me. A doctor who is patient and trusts me so that I can trust him/her. If he/she is out there... I will find them....

Been a while

It has been quite some time since I last posted. The 2nd phase of the Visual Snow study has commenced in Munich, Germany. We are currently awaiting those results. Professor Goadsby is in the process of starting up the 3rd phase of the Visual Snow study at Kings College Hospital in London. We are currently raising funds to hire a full time researcher www.gofundme.com/visual-snow.

Update on me-

I am still dealing with daily visual snow symptoms, but on top of that I am dealing with vestibular issues. I was first diagnosed with bilateral vestibulopathy and then later diagnoses with Vestibular Migraines. At the time of testing when I was diagnosed with vestibular migraine I had ZERO weakness in either ear. I was told that I most certainly have no issues physically with my inner ears, but that it's the migraines which causes the dizziness. That diagnosis was music to my ear, but it still leaves me questioning the diagnosis's. What if my most recent diagnosis was wrong? I should just let it go, but it's tough. I wouldn't be able to do anything anyways. The migraine variant is the best outcome because I can continue on with the treatment I am on now, Verapamil and Lamotrigine, to see if it helps with the dizziness and vision issues. It still seems like everything is way worse right before my period and my OBGYN has said my hormones are all within range. I just don't understand it all. I have the chance to go to Louisiana to see a doctor who specializes in diagnosing vestibular disorders. The only problem is he doesn't work with any insurance companies and wants $4,000.00 for testing and then I would have to submit a claim to my insurance company.... who could then deny it. I should just be happy with my diagnosis and leave it at that....., but my mind doesn't work that way. If my medicines would start working that would prove that it's a migraine variant.

Finding the silver lining

MUSIC - I wrote a very long detailed post about finding the silver lining in life with an illness. I decided to erase it. My silver lining isn't going to be YOUR silver lining so there is no point in me rambling on about my love for Music, but I will tell you that it has re-awoken something inside of me that I haven't felt in years. Music has the ability to bring back memories so much that you can mentally relive them and physically sense them. In alzheimers patients there have been some fascinating results with playing music through a set of headphones and it bringing back the patients for minutes to hours at a time. I use music to bring me back. Music is helping me find the silver lining in my walk with this illness.

WRITING - What you are thinking everyday.... the pain you feel, the silent war that is going on in your head.... let it out. Write it down or type it out. Keep it to yourself or post it on a blog for all of the world to see... just don't leave it caged up confined to a secret folder buried in your frontal lobe... it's not doing any good there. And who gives a shit what you say? Either someone will read it and like it, or they'll hate it... but at least it's out.

FRIENDS - I've lost most of my friends after this illness happened. They couldn't understand why I wasn't able to party with them anymore. Why I couldn't do the long distance trips for a night out. Some I lost because I was married and had a child and others I lost because they knew I changed. I was very young when this hit. I instantly became twice my age.... The good thing is I've gained quite a few friends along the way. Real friends. Genuine friends. These are people who understand what I am going through and still want to talk to me. People who know all about my dirty laundry and frontal lobe secrets and they still call me.

Finding the silver lining in your illness isn't always easy. Most of us are consumed with the 'what if's' and I totally get that. I am the first to raise her hand and admit that I am afraid of EVERYTHING since getting this stuff. My life consists of barriers that I have placed around myself. What I am protecting myself from, I have no idea, but I am learning that if you are scared of something then it means you need to do it in order to set yourself free. So... i'm finding the silver lining in my illness.... and you can too.